Intervention Summary: 2 – 6 years old – GOAL; go to kindergarten with no support
see recovery section below
Year 1:(Looking for a program, 2 years old) 45 minutes/wk sp. Ed. Tutor, 45 minutes/wk SLP, 6 hours/wk of typical
daycare with age appropriate peers, kiddie gym class. Formal table sessions with parent 2 hours a day. 24/7
redirection, modeling, and prompting, copying what the therapists did. Target skills: Self-help, motor imitation, receptive
and expressive object and action labeling, simple requests, and basic toy manipulation. Bio intervention: DAN!
Protocol, GFCF, organic whole foods,supplements, no vaccines/antibiotics) Regrets: No ABA program - ideally we
would've started right off with at least 25 hours.
Year 2: (Prek - 1st year, 3 years old) Typical preschool 2 mornings, daycare 2 afternoons, SLP 1 hr grp, Gymboree, 2
typical playdates per week. Formal table sessions with parent 2 hours a day. Approx. 16 hours/wk with typical peers is
16. Zero hours in Special Ed environment. All services take place at home elementary school. Target skills: Complex
skills including imaginary play, describing and complex language, emotion recognition, and basic cause and effect, with
an emphasis on generalization. Bio intervention: DAN! Protocol, GFCF, organic whole foods,supplements, no
vaccines/antibiotics) Regrets: No ABA program, especially the part where he had no shadow. All those opportunities
Year 3: (Prek - 2nd year, 4 years old) Typical preschool 3 mornings, daycare 2 afternoons, SLP 3 hours one-to-one, 3
hrs ABA one-to-one, 11 hrs ABA shadow at typical prek/daycare, 0T 1 hr, PT ½ hr, totaling 14 hours of typical peer time, 7
hours of one-to one therapy. Formal table sessions with parent 2 hours a day. Zero hours in Special Ed environment.
Target skills: Abstract skills such as abstract reasoning, senses, observational learning, and social skills are targeted Bio
intervention: DAN! Protocol such as The Diet, Chelation, organic whole foods,supplements, no vaccines/antibiotics)
Regrets: Not enough ABA hours - not for lack of trying
Year 4: (Prek- 3rd year, 5 years old) Not even a question, we held our fall birthday boy. He needed that extra year to
continue therapy in an environment he blossomed in. Typical preschool 5 afternoons, daycare 5 mornings, SLP 2 hours
one-to-one, 3 hrs ABA one-to-one, 27 hrs ABA shadow, OT 1 hr, PT ½ hr, totaling 33 hours of typical peer time, 7 hours of
one-to one therapy. Target skills: Theory of mind and executive functioning skills, understanding cause and effect,
relationships, predictions, inferences, and comprehending social cues. Bio intervention: DAN! Protocol (diet, chelation,
enzymes), organic whole foods, supplements, no vaccines.
Recovery Year 1:( Kindergarten, 6 years old) Leo began his first year at a typical elementary school with no support.
He no longer requires an aide or any therapy such as ABA, SLP, OT, and PT. Leo's teacher does not know about his
former diagnosis or that he had services of any kind. Leo's friends and their parents do not know about his former life
either. He rides the bus to and from school, and is a regular student in his class. He enjoys recess, music, art, gym, and
library time. He maintains lots of friends and is very social. Bio intervention: Still continue GFCF diet, even at school.
Still maintains organic whole foods lifestyle including supplements and mild occasional detoxing to minimize toxic load.
Recovery Year 2 (1st grade, 7 years old)
Leo continues to enjoy his new life. His first grade teacher doesn't know about his past. He is flourishing academically
and socially. He loves school, and is a happy guy. He maintains his old friends while making new ones. Minor executive
functioning issue (calling out, talking out of turn). Marked improvement from beginning to end of year. Doesn't stand out -
3 other classmates that do this lack impulse control across other situations as well. That's kids, but I know the reason
behind Leo's weakness. 45 out of 50 highest academic marks, the rest satisfactory. Incredible story telling ability,
amazing math understanding. Handwriting perfect for a 1st grader. Bio intervention same as Recovery Year 1.
Recovery Year 3 (2nd grade, 8 years old) Business as usual. Teacher is mediocre but Leo is growing and learning
per usual. Minor executive functioning issue remains (talking out of turn when excited about a topic). Showed
improvement over the year. Hi marks continues. Excels in all categories - math, reading, and personal development.
Handwriting perfect. Bio intervention same as Recovery Year 1. Year ended quietly, a success.
Recovery Year 4 (3rd grade, 8 yrs, almost 9) Excellent teacher this year. Anonymity intact. A typical 3rd grader. He
enjoys baseball and carpooling with his close friends. So far there has been no mention of the "talking out of turn". We'll
see what his new teacher says at our first conference. So far she say's he's great! In highest math class and one of the
best readers so far. Bio intervention similar as Recovery Years 1 and 2. Utilizing more homeopathic/herbal supplements
for annual detoxing and health maintenance. Blood sugar sensitivity almost non-existent.
SUMMARY DETAIL AND TIMELINE
10/98-10/99 – Leo’s First Year (d.o.b. 10/15/98)
At 4 months Leo started having severe separation anxiety. He always felt uncomfortable without one of his parents. He practically
lived in the Bjorn. We couldn’t go to the bathroom without tears. Regular development except vocalizations. However, when we look
back on videos, we can see poor eye contact, gazing, and lack of cause & effect. We followed his lead and honored his
extraordinary needs for us to hold him and be in his presence. Mother at home fulltime although she had planned on returning to
work. At the end of his year he fell in love with his first truck (spinning wheels).
Schedule: Weekly Mommy and Me group, Gymboree, regular outings to museum (we lived in NYC) and play dates, usually having
some social activity each day.
January – April 2000 (15-18 mos)
Stopped progressing, began stimming on vehicles. Within a month he was spinning wheels 98% of his day. Very little
vocalizing, no progression with speech. He was so frustrated and whiny, acting so ‘helpless’ and ‘clueless’ most of the
time. Severe sep. anxiety continued, even crying for hours with his babysitter he’d known for one year. Mother
became concerned with his obsessions and lack of interest in other children.
Out of desperation, Mother put Leo in daycare 2hrs/3X week (6 hrs). Painful transition, nonstop crying or anxiety for 4
months, breaking the daycare’s record for a child transition. Instincts told Mother this was what Leo needed, to learn
how to cope without Mom and even more exposure to peers. He went each time clinging to a truck, usually sitting on a
willing caregiver’s lap. Always anxious. He’d mostly sit alone, stimming on the wheels.
Sample Day: Spend every waking moment spinning wheels of cars, rolling them aimlessly back and forth, all day, all
night. He’d lie on the ground next to a car and stare rolling it back and forth. Also he’d roll it on himself. I’d cry
looking at him through the daycare cameras. Sitting alone, across the room away from the other kids. I had to be
happy he wasn’t crying, and that he wasn’t on someone’s lap.
Leo’s development reached a plateau across all areas, as his time was spent with stimming. Leo’s stimming became
more sophisticated, language continued to stagnate, and separation continued at the same intensity. Daycare,
Gymboree, and play dates continued, keeping Leo busy each day with something social. Socially, Leo started to really
stand out. Always content on my lap at play dates, he’d focus on a playmate’s truck or other spinning toy rather than
the other child. I felt I had no choice but to give up play dates and Gymboree, as both Leo and I were constantly
miserable. Passed an ENT/audiologist eval.
Beginning of services (16 months old)
We finally got him evaluated by 0-3. He qualified for speech, and started services with a Sp. Ed. Teacher 1X per
week. Leo tested one year behind his age. Pointing, grunting, and whining was how he communicated. This caused
an enormous amount of frustration for all of us. He had low self-esteem and was constantly frustrated. We were
surprised to learn that Leo’s narrow interest in just trucks, books, and balls were a concern, and that this obsession
kept him from learning other skills. We were clueless that there was anything wrong with Leo. We thought that speech
was an issue, and maybe that the stimming was just a ‘phase’. That Leo was being a boy.
We were quite shocked to learn that we needed to drastically revamp how we parented Leo. It absolutely made no
sense to us, to infringe upon Leo’s interests and freedom. We coined 0-3’s recommendations “Counter-Intuitive
Parenting”. This philosophy went against all our natural instincts of letting Leo ‘be’ in a safe nurturing environment,
giving him the lead to explore his world. Letting Leo spin balls and wheels, and throw balls wasn’t working. Instead of
Leo taking the lead in his day, we had to. We had to be pushy, and structure Leo’s every waking moment.
0-3 taught us how to expose him to novel toys. They guided us to remove the desired stimming toys (vehicles and
balls). We cleaned up the entire house, removing all clutter, and streamlined the toy selection to approx. one of each
kind of toy. Since Leo was so object focused, he obsessed over toys, and we indulged him by giving him too many.
We learned that Leo needed to start using his eyes and ears, not ours. We had to carefully plan frustration and
monitor that level delicately, always pushing one step beyond. For example, if he began to lose concentration while
doing a puzzle, we’d keep encouraging him, cheerleading him through it. When we thought he’d had enough, we’d ask
him to do one more piece, that one step beyond. We utilized every waking moment in his life – home, daycare, social
outings, play dates, parties, to redirect him, teach him something, drawing him out of his world.
We set up stations in the family room, strategically placing a couple toys on the coffee table, a few spaced out. To our
utter amazement, we saw within 2 days Leo walk up to his blocks and examine them for the first time without prompting
from an adult. We were shocked to see he was fine without a room full of vehicles. Within a week, Leo looked more
refreshed and not as zoned out. He became more interested in other types of toys. He became more and more
tolerant of attending to task, and eventually sitting at a table.
He started saying words at daycare before at home. We learned how to play dumb, always creating a situation to get
Leo to use words.
Ex: I’d fill his milk bottle up part way so he’d have to ask for more. To promote any utterances, we “rewarded” him if
Leo said at least the first letter of a word. He caught on to this, and now will say the first letter and not attempt the
entire word. He does the very least to get want he wants. We attempt to play dumb, and pick our battles and not give
in, no actual words yet.
EX: Knows alphabet and becomes a stim.
EX: We discovered if we break down words Leo will often imitate that portion of a word. Perhaps it’s less intimidating
for him. For example, for the word “open” we’ll slowly sound out, almost sing “ope”. We will often get an imitation of
that portion of the word instead of nothing. He seems more bold in trying out words with less coaxing.
EX: Leo immediately rejects new books. He shows no interest and reaches for a familiar book. We have to “force” it
on him, show him the pages, and eventually we can incorporate the new book into the rotation of books.
EX: Most kids his age seem to have gone on to the next stage of play patterns, such as playing with little people,
playing with them in imaginary scenarios such as cooking, eating, driving, etc. He is fascinated if an adult does this,
but will not play on his own like this. He will bring me toys to play with. When I tell him it’s HIS turn, he walks away, or
asks me to play again. The only thing he seems to do in this area is push his trains around the track. The last couple
weeks, he’s been imitating me calling the dog, and imitating what my husband does (hand movements, stance, etc.).
He is however, extremely affectionate with his stuffed animals.
EX: Other stims: Leo has always liked things that are blue & white, such as the questions on Jeopardy. He also likes
things that are yellow. I think it’s because he is so fixated on school buses. He loves things that flicker. Likes
patterns, such as crosswalks, tile, brick. At first I thought he was concentrating on walking. He’s been walking for over
a year now, and still often looks at the ground. Likes signs, large solid shapes, clean lines. Loves music, his dog,
going outside –the woods. Likes to play hide &seek, trains, cars, going on the highway, books, coloring, letters, and
his kiddie classes/daycare. Knows correct color for known objects: for the sun, he’ll select the yellow crayon, for grass,
he’ll pick green. Is beginning to learn how to count, although does not verbalize.
About a month into the services, the therapist identified several ‘red flag’ behaviors, and suggested seeing a
Developmental Pediatrician. What the heck is that?? I began the painful process of educating myself about disorders,
and suspected that Leo was on the Autism Spectrum. I dedicated myself to figuring out what Leo needed.
Fall 2000: 2yrs old
This was quite a busy, sad, and overwhelming time for all of us. Leo’s 2 year birthday party at our house brought
tears of despair to our eyes. On a beautiful October fall day, about 6 peers played together outside while Leo, not
even looking, was sitting alone on the steps staring at his firetruck. We couldn’t take it away, as he would’ve been
miserable without it. We even got the fire dept to drive over a real firetruck for the kids to see and take a ride.
Overwhelmed by the party, Leo had no interest in the fire truck. His dad made him go on it. Leo sat on his lap and
tolerated it for a few minutes.
Yale evaluated him two weeks after his 2nd birthday. Even though you know what they’ll say, you never forget the
moment they tell you your child has Autism (2 years old). They were so understanding as I shook and cried in their
office. They described in great detail how Leo must be taught what comes naturally to typical children. That he’ll
never learn these concepts and skills on his own.
They gave us proven direction on how to teach him while minimizing his stimming behaviors. They described how we
need to engage and redirect Leo 24/7, every waking moment –until these skills can become his own. We needed to
draw him out every moment possible.
At this time his imagination play time was approximately 2% of his day, prompted. Leo also was in poor physical shape
at that time. He began the DAN! Protocol shortly after his testing.
Schedule: Kiddie classes 3X /wk, play dates at least 1X /wk, daycare 3 afternoons a week (6 hours), and 0-3 therapy 2
to 3X per week (home and daycare), and parent sessions 2X per DAY.
I decided to bite the bullet and force Leo into as many social situations as possible. I went back to having at least one
outside social activity every day with kids his age. I’d insist he participate, or at the very least observe, constantly
pointing at what he should be looking at. Ex: “Look at the teacher’s face. What is she saying to do?” My goal was to
keep him with us, never letting him stim. 0-3 came 2 times per week, training me and Leo. I was so sick of having to
be a two year old model for my son. He hated it, I hated it, but it was great.
I copied the therapists by working with Leo just like they did, 45 Min each morning that they didn’t come at the table. I
also did this at night unless my husband was home early enough to do it. My husband concentrated on gross motor
skills and confidence on the weekends by doing guy stuff, taking him to the playground, etc. He also did swim class
with him, which Leo hated.
He cried through an entire semester of a kiddie class at our Rec Center. Preferring to sit alone, I’d carry Leo around
with kids holding hands and dancing at Music Class. At a pre-nursery school class where parents came too, he’d try to
isolate himself, making a beeline right for the trucks as we entered the room. I asked the staff to hide the trucks during
our session, and I kept him engaged, constantly directing him to appropriate play, or telling him what to say to another
child. We started Gymboree again, and this time I made him do everything the other kids did. I’m sure the other
parents thought I was a hovering crazy woman, or that I was really competitive, but I didn’t care. Needless to say I didn’
t make any friends that season.
I gave each caregiver at daycare a ‘one sheet’ on how to engage Leo, and to keep him with the other kids as much as
possible. I explained to them that his disorder is no excuse to not participate or do tasks. He was expected to do what
all the other kids do. I worked with them each week, each time there was a new person, making sure there was
carryover as much as possible. They were complete angels and wanted to help. 0-3 also worked with them regularly
while regularly working with Leo at the center.
Sample day: The first 20 minutes:
Leo wakes up, bathed in sweat due to his unusual chemistry. I change his diaper, grab his milk, and take him into the
bathroom so I can shower. He happily sits down on the stool, knowing the routine. I give him 3 books to look at,
placing them in front of them while I turn on the water.
Leo excitedly starts to take all my shampoo bottles and soaps, wanting to hold them. While shampooing, I constantly
redirect him away from the bottles, trying to get him to look at his books. He keeps at the bottles. I then take an
almost empty bottle, and challenge him to practice taking the twisting the cap on and off. He balks at first, then tries
since I did give him one bottle to hold. He gives up quickly, and tries to hold and stare at it. I take it away. I rinse and
start drying off. He cries, but after we talk about the sizes and colors of the bottles, what we use them for, I prompt him
to say “yellow”, “big”, “little”, and “blue”. He says “yellow!” and I say “Good job Leo, you used your words!”
Happy with “yellow”, I move on to the books while I comb out my hair and brush my teeth. He starts to read Pickle and
Blanket. He stops midway and stares at a page with a purple background, a favorite stimming color. I ask him to point
to the little boy’s face, then the bear, and tell him about the picnic they are having. I ask him if he wants to go on a
picnic one day.
We move into the bedroom so I can put my clothes on. He finds a ball that was under the bed and immediately starts
spinning it while lying on the floor closely staring next to it. I can’t believe the ball found its way into my room, but shrug
my shoulders, pick it up and talk about how we use balls. While bouncing, I say in my cheerleading voice, “We can
throw them and bounce them! This is the right way to play with a ball.” I redirect him ten times, he stops spinning and
actually bounces it twice. I smile and say “Good job!” I pull the shirt over my head, grab the laundry and my water
glass, tell him 3 times to put the ball down, and walk to the stairs.
Each minute of our day is similar to the first 20 minutes. We eat breakfast, go to a kiddie class, put him down for a
nap, grocery shop, make dinner, put him to bed. All the while I keep him present, listening, engaged, and playing
appropriately every moment I have with him.
January 2001: 2yrs 3 months
Social schedule: 7 hours of daycare, 4 mornings a week classes or play dates, same 0-3 and Mom sessions.
Leo makes incredible gains. The DAN! Protocol makes a big difference is Leo’s physical well-being. His mind is now clear and
as healthy as he’d ever been. His eyes, his skin tone, his face looked great. 90% of the time he would attempt speech rather
than grunting or whining. Full sentences came quickly. His behaviors continued to decrease while his tolerance for novelty
increased. 5% of his day was imaginary play, sometimes without prompting. He was more tolerant of novel things. He actually
went over to his therapist who’d just arrived and eagerly looked in her bag to see what she’d brought!
The caregivers at daycare said he was a different kid. We couldn’t believe it. The Counter-Intuitive Parenting style worked.
He started to parallel play with other kids. The old Leo would have headed in the opposite direction. 0-3 worked more and
more with Leo at daycare, helping Leo in the social environment which clearly was the biggest challenge. They reported he
was so pleased with the help. For example, one day he and another kid were fighting over a toy. His frustration escalated
and he grunted and whined. The therapist gave him the words to say “Can I have my toy?” He turned to the other child and
repeated “Can I have my toy” clearly, prompted to look at his face. The kid gave him the toy. He was DELIGHTED. It was like
he thought, “Hey! It worked!” He was so pleased with himself. His self confidence, always an issue, increased as his success
rate increased. It was one of those defining moments. He was no longer completely intimidated by children. Once a kid was
jumping on a trampoline, smiling at him inviting him to join. The old Leo would have walked right by as if she didn’t exist. He
jumped right in.
EX: Since September, words have been coming faster and faster. The breakdown of the simplest of words seemed to have
boosted his confidence. He will try 90% of the time to say a word. He enjoys talking and likes the attention he gets. He now
says sentences regularly, and says words more clearly and completely. Examples: “Mommy get blue bus please”. “Daddy
throw Wolfie’s ball please”. Bup is now Up, Uhm is now Come, etc. We still prompt for words, but not nearly as much. He
comes up with his own combinations and new words that we’ve never prompted before. He always answers questions. Oddly
enough, in the last couple of weeks he started saying “bye bye Mommy” or whomever. I find it interesting that he said Bye
Bye last, after using full sentences. Most kids say it first. Although we are pleased language has replaced the whining, he is
constantly repeating himself for his wants. We find he tirelessly tries to use language to control his environment.
EX: 5% of his day will be doing imaginary things, such as feeding a stuffed animal. So it’s a slight improvement. He likes to
sweep and vacuum, which may be a perseverating/movement thing. I'm not sure. He has come up with scenarios that we’ve
never shown him. He seems to enjoy them more and more. He is playing more often with little people toys and playmobil-type
toys, and riding a stick horse both with and without his father, and enjoying it.
EX: Leo was jumping on a mat. Another child came up and started doing it too. Rather than walk away, Leo smiled and
started jumping even faster. He followed her for a very short time. This has never happened before. He participates in circle
time, art projects, whatever the rest of the kids are doing. Before he would watch from afar or participate rarely. This is true
in his Music Class, Gymboree, and Pre-Nursery School class that Mom attends with him. He seems less intimidated and has
more confidence. We have worked very hard in training ourselves and day care staff to constantly keep Leo engaged, and
we feel strongly this has paid off.
February, March 2001:2yrs 5 months Leo continued to make rapid progress as we tried to keep up with him, challenging him
as much as possible, “putting the screws to him” every waking moment. One therapist said “One major part of my job is to
convince parents their children are capable”. And this was true. He surprised us at every turn, meeting every goal quickly,
eager for more explanation, information on how to communicate and interpret on his own. He was and still is like a big
sponge. Leo began going to daycare 2 days a week for a 7 hour stretch each time. It was working so well so we added
more. He really liked it now.
April 2001:2yrs 6 months Very encouraged that Leo tested age appropriate for speech. Hired a full time nanny for the baby
that was due beginning of May. We gave Leo this first month to get used to Sylvia. Sylvia also got used to all the prohibited
behaviors, etc. We took her to the grocery store, every class, all our hangouts like Duchess and McDonalds, the mall,
Playzone, etc. We kept Leo going to daycare, naturally. She became comfortable driving our big car and learned how to
navigate herself through our town. Our plan was for the nanny to keep Leo’s schedule completely intact, taking him to every
class, to the park, etc., until I recovered from my planned C-Section. After that I would resume working with Leo constantly,
keeping him on his schedule, until the baby became mobile.
May 2001: 2yrs 7 months As expected Leo regressed significantly for about 4 months. Relieved I had Sylvia in place, she
took care of the baby while I kept up with our one-on-one. 0-3 recommended I add an extra day of daycare to provide extra
relief for Leo. This worked really well for all of us, as he was either crying or whining for 4 straight months. Literally.
June thru Sept 2001: 2yrs 8-11 months Leo made his way slowly back to his previous level of functioning over the summer.
Having me available most of the day to keep him present and challenged really helped. It wasn’t easy, as I was nursing
exclusively, so I had to pump twice a day so I could leave the baby with Sylvia. His imaginative play really blossomed. He
loved copying me by nursing and holding his baby doll, taking her for walks in the stroller around the circle. He also became
fascinated with his sister, and found her amusing and an easy audience.
October 2001: (3yrs) Transitioned from 0-3 to the School District. All therapists and Yale recommended typical preschool
since he was doing so well in daycare.
Schedule: MW speech, W Gymboree, TuTh mornings typical prek, F full daycare day. Usually 2 play dates per week. Time
spent with peers per week is 16 to 18 hours per week, depending on play dates.
Issues: Driving concern is perseverance play, narrow interests, and sensory issues will interfer in concentration, learning,
and socialization in school. Lack of self-monitorization, low frustration point, low confidence level, wildly fluctuating arousal
level characterize his vulnerable areas. Parents fear he’ll get behind in skills again due to the amount of time spent on
behaviors. Parents also fear his behaviors will interfere with him to make friends.
In general, Leo seems uncomfortable with himself, needs constant adult interaction to be content. He’s rarely able to tolerate
being alone in a room while mom is in another for more than a few minutes. At approx 2 ½ years, he’d tolerate being with his
therapist or others without mom in the room. He rarely plays independently unless he’s watching a video or doing a
behavior. Even then he’ll seek an adult for company. He’ll participate in activites and be social with other kids as long as he’s
monitored. We strive to change his en216;stuck’ on something else.
Leo’s turned out to be a very friendly, gentle little guy, that is almost always interested in children. However, Leo often misses
social cues. We are not sure if it’s an age thing or a PDD thing, or a combination. Some of these are; Talking to people out
of range, like through a window. Seeking rough-housing play with a friend who CLEARLY isn’t interested, and Leo won’t
stop. Asking someone if they’d like a french fry, the person says ‘no’, and he keeps asking. Sometimes he’ll repeat a
request over and over, not realizing he must change how he’s asking, speak louder, or perhaps he doesn’t have the intended
Perseveration has always been the largest issue. About once a month it manifests into something different. It’s usually some
object and some type of repetitive movement. Leo is very easily redirected by an adult. It’s just that left to his own devices,
he’ll seek these behaviors 50% of the day. He continues to need adult interaction.
Cars & trucks continue to pacify him when he is stressed, tired, bored, or isn’t monitored by an adult. He’ll take matchbox
cars and hypnotically role them back & forth on a table, floor, or on himself. He also will closely examine them, 3 or 4 inches
away from his face. He’ll be in a very low arousal state, appearing tired. Often, he’ll lie on his side while doing this. We’ve
compromised by allowing him only matchbox sized cars, as they tend to not interfere in doing other activities like large toys
do. We also stress playing with them appropriately.
Tapping: Lately, he’s been tapping his hands and feet. He’ll often drum very loudly while chanting Ba Ba Black Sheep,
Happy Birthday, or something he makes up. He likes to bang on a ball, tables, and the floor. He also likes to run around the
kitchen table, limping, stamping very hard, while chanting. He’ll do this for 10 seconds or 20 minutes, depending on his
Visual discrimination: Leo will often fixate on a certain characteristic. One day he’ll say “you have a neck”, as if he just
realized we all have one. For one week he’ll comment about how this person and that person has a neck (belt, nose). He
continues to gravitate towards purple items, and will prefer a puzzle with a purple background. Sometimes he’ll notice the
smallest detail, and other times he’ll miss something really obvious. He can’t seem to get a game where you hide a toy under
one of three cups, move them around and he has to follow and pick the correct cup. It’s like he just can’t follow with his eyes,
and it seems like he’s really trying.
Past behaviors include opening and closing doors &cabinets, carrying around and being obsessed with milk cartons, purple
items, and seat belts. Occasionally he’ll perseverate with scripts, repeating something a request 30 times in a row. It was
really bad, all day for a long time. Now it’s minimal, but does come up every couple days. Other significant behaviors include
watching water flow from hoses and cups, and loves to put his hands under the water in the sink.
Stimming was reduced to approx. 50% of the time. We carefully monitored vehicles, as he was playing with them
appropriately as long as we were present. Once we weren’t, he’d start to stim. Visual discrimination deficits became more
apparent. Ex: Realizing that all people have a neck. Checking each person he sees, and amazed at this fact. Talking to
people that were outside through a closed window. Obsessions changed every few weeks, becoming more sophisticated. At
this point he loved to hold several milk cartons, and tried to snow us into thinking he is pretending with them, when he was
actually just staring at them.
Parents rejoice during Leo’s third birthday party, looking back at the long hard year, and see a happy healthy boy bouncing
on his trampoline outside with 5 peers. Laughing, chatting, initiating chase games, Leo is the social butterfly. We look at
each other with tears of happiness rather than sadness like last year.
Leo is re-evaluated at Yale. Even Yale was shocked at the level of progress Leo had made, validating all my time and hard
work with Leo. They again gave us great direction on how to address Leo’s social issues, how to specifically teach him these
Communication: Leo’s communication problems contribute to his social and emotional difficulties. Has a hard time integrating
all social elements together (ex: asking a question but not looking at the listener). Has a tough time shifting attention between
objects and people, which provides a foundation for interpreting intents, perspectives, emotional expressions. His language
strength is misleading in that his grammatical morphemes & sentence structures are constrained given his language stage.
His use of over-generalizedword forms (from word retrieval difficulties) compromise the clarity of Leo’s messages, likely to lead
to frequent communication breakdowns, especially with peers. Uses scripted language. Decreased sense of himself as an
effective communicator. Decreased rate of self-initiated communication. Leo has sentence formulation difficulties and
trouble monitoring interests and intents of conversational partner. These vulnerabilities need to be aggressively addressed in
order to prevent behavioral difficulties, frustration, and to foster social and communication development, to establish social
relationships and benefit from an academic setting.
1) Leo has a hard time sharing since he can’t expressive himself efficiently in the heat of the moment (word retrieval). (ex:
easily yells and grabs during a dispute over a toy)
2) Leo often can’t effectively explain something or “read” his listener. (ex: Still tickles a friend after friend frowns and backs
3) One-on-one we can see frustration or anxiety and diffuse or help him, in less controlled situations it’s difficult (ex: kids all
doing same activity)
4) Can become overly focused or rigid on toys and materials, less able to utilize context to correct erroneous impressions (ex:
seeks and covets all purple crayons while coloring with others, misses out socially)
5) Seeks out adults to navigate the social environment, using adults to clarify things for which he has less of an intuitive
understanding. (ex: uses lots of questions to show anxiety, requires lots of explanation – we are his eyes and ears to the
6) Likes topics in immediate context rather than past events. This is due to word retrieval, and lack of awareness about what
the listener knows and doesn’t know. (ex: he doesn’t realize Mommy didn’t go to the museum, so Mommy can’t comment or
7) Tough maintaining a simple conversational exchange beyond 3 to 4 conversational turns. (ex: If he can’t “say what he
wants to say”, will back out by changing the subject, using humor, or other distractions that he knows will please the listener
(ex: “let’s color!” when we know his dislikes it)
Integration: Sometimes imitates without fully understanding the entire context. He’s vulnerable given he may reproduce an
action or respond adequately to a social demand by modeling only part of the action. He responds appropriately without
necessarily understanding the full context. He may pick one cue to respond to, say “That’s funny” without any facial gestures
that would show he really thinks it is funny.
Novelty: Leo performs at a higher level, is more comfortable, speaks more fluently in familiar situations. If adults not present,
will revert to more self-isolating style, more primitive play. Distracted by minor details, structure & familiarity will continue to be
needed until a more solid sense of imaginative play is internalized. When modeling scripted/language isn’t available, as in
novel contexts, his own rule system compromises his ability to form even simple sentences. This is why Leo compensates by
copying others very well.
Associative Learning: He can’t take his knowledge of a concept and apply it to a novel instance very well. Has difficulty
getting the context of a situation (defined by cues; changing facial expressions, variable tone of voice, posture, gestures).
Learns by “chunks”, the way things occur rather than how they integrate with his internalized body of knowledge and
experiences, making him particularly vulnerable to decontextualized copying of others.
Below average, at 31 month level. Ex: holding crayon effectively, drawing, imitating basic shapes. Can’t copy a 3 piece tower
Baby is happy in bouncy chair or on my lap while I work with Leo. She can even nurse while I do this.
Holidays are spent as opportunities to have parties at our house, Leo learns to share well, tolerates the activities well,
although quite an overstimulating and exhausting time. Forms even more solid relationships with other family members, talks
on phone well.
January 2002:3yrs 3 months Baby Sydney (8 mos) has been crawling for a couple months now, and is more demanding. Leo
seems to have plateaued, seeing more of a gap socially during playdates. Frustration level starts to increase as Mom’s attention
is diverted to baby. It was quite depressing to see Leo stimming more. Mom doesn’t have as much opportunity to work with Leo
one-on-one. Very challenging to fit in that table time. Panicked, I discuss my concerns with the SLP and Guidance Counselor at
the school, seeing if there are ways we can address his social issues better. They felt comfortable with his current services.
Waiting for Yales’ re-eval written report.
March 2002: 3yrs 5 months Although Leo seemed happy and still progressing in some areas, socially Leo continued to stay at
the same level. The social gap seemed to be more apparent yet again. He began to hang back like he used to with children.
Leo continued to demonstrate he can imitate well, although decontextualized. Showed he was a quick learner, responded well
to direction and structure. Sought help again from school to no avail, sought private help, educated myself about how to best
address Leo’s needs.
June-July 2002: 3yrs 8-9 months Completely burned-out, Mother found an ABA provider that specialized in social skills training for
high functioning children like Leo. They started, saw immediate results (carryover). I felt tremendous relief that these two
experienced therapists were working with Leo one-on-one, “putting the screws to him” just like I do, but even better since they are so
experienced with these kids. Finally, professionals that address issues other than negative behaviors or academic issues.
September 2002: 3yrs 11 months After 8 months of very little intervention, Leo has an excellent program in place for this new
school year. Leo was ecstatic at his preschool’s open house. He was excited to see his friends and teachers.
October 2002: 4 yrs old The last PPT, 9/11/02, we agreed to his attached schedule, fine tuning his services and adding the intensive
social skills training provided by an ABA provider that specializes in higher level social programs (theory of mind, executive functioing,
abstract thinking programs). School agreed to 14 hours of services, although parents and ABA provder believe Leo needs another 6
hours to make our goal of sending Leo to kindergarten with no support. Still working on matching the IEP with what we agreed to in the
Goal agreed to at PPT was to look at Leo holistically, since Autism is pervasive across all areas of development. Because of this we
need to continue the intensity of services, knowing he will fall behind even if he’s not ‘significant’ in certain areas now. As a whole child,
intensive services will give him the best chance at being as typical as possible, as research has shown. This also makes the best
financial sense for the schools.
Receiving therapy at school is challenging for Leo and needs time to transition. Typical for children with Autism. Needs Mom or another
person he knows with him until he’s comfortable in a new environment and a new person. Especially in the bigger elementary school
where it’s much busier, and he gets services in the morning when it’s bus time.
November 2002:4yrs 1 month After a full year of sitting at the end of the hall with Sydney while Leo is in Speech, OT, or PT at school,
Leo can tolerate us leaving him. Yes! This was attributed to his continued inability to cope without mom coupled by a toilet fear that
began back in March. Now it takes just a few sessions with a new therapist or new room to be comfortable without mom.
December’02 – January’03 Issues:4yrs 2 months to 3 months
In Public: A new toilet is still an issue, and requires a ‘bathroom buddy’ to go with him. It’s rooted in the unpredictability of plumbing
noises, gurgling, and flushing. This began back in March when he had an automatic toilet flush on him while he was still sitting on the
toilet. It was the fright of his very short life. He can manage NYC streets and busy parking lots as long as he has a hand. If stressed, he
will get quiet. When asked, he’ll say ‘there’s too many people’ or that he’s ‘a little nervous’. Has mastered going on an escalator with no
hand, and is no longer worried about elevators. Very chatty to strangers and checkers in grocery stores, and the occasional ‘unfriendly’
person, which he doesn’t notice.
At Home: Swim class (can’t see bottom), haircuts, fear of unfamiliar toilets, being alone in the woods or far from others in the house (like
being downstairs by himself). Housekeepers (unpredictability of when they show up, and come in unannounced).
In School/Daycare: Self monitoring skills, monitoring others, managing social situations with larger groups of kids, peer and group re-
entry skills, pragmatics, speed of speech, retrieval, gestures, proximity, perspective taking, flexible thinking, gross motor planning,
drawing, proprioceptive issues, cause & effect, constructive play, role taking, symbolic play, staying on topic, gaining attention,
categorization, perseverating on his chosen special friend to ‘get him through the day’.
Repetitive Behaviors: question forms, song phrases, banging with hands, stamping with feet (walking and running hard). Stuffing hands
in mouth at any time, especially when in transition or ‘shy’ in a novel situation. Staring at wheels on cars, flashing lights, out brightly-lit
windows. Eating: Over-stuffing, putting hands in mouth. Putting spoon over mouth and pressing hard.
And Now the Good Stuff
Leo is making incredible progress in all areas. Areas listed above are all improving significantly. He makes initiations with peers
regularly, responds well, makes conversation, and pays attention most of the time. He’s a very compliant boy.
As mentioned, he is able to separate and be on his own out of the house, with another adult. Leo now TELLS me to go home or run
errands while he is in Speech.
Although sensory issues have ‘flushed out’ now that he’s older, these identified areas are improving. He can now tolerate warm or hot
food, and even asks me to warm up his pasta or rice in the microwave.
Leo will sometimes identify that he needs to stamp his feet, and will go right to the trampoline on his own. If he needs to tap his hands, he’
ll go get a basketball. Leo will often realize he’s hungry or tired, and either grab a snack or lie on the couch on his own.
Leo is also overcoming Gymnastics class challenges. Leo has always been interested in tumble play, except for anything resembling a
summersault. He’s gone from being teary and miserable through an entire class to really enjoying himself AND telling his teachers when
he doesn’t want to do something, effectively.
Leo can now generalize what he’s learned into new situations. For example, his therapist had been working on gaining attention during
the home program. Recently I was at the computer, and I feel a tap on my shoulder. I realized he’d been calling me, and since that didn’t
work he gave me a tap.
Leo is more aware of his senses, and which ones give him certain information. This summer Leo was unable to tell us HOW he knew
Sydney was awake (we could hear her on the baby monitor). He had no idea. Now he can say he heard, saw, smelled, and felt
Leo was able to tell me how he got a big egg on the side of his head at daycare. He said “Jonathon pushed me into the brick wall
because I threw the ball at him, really hard, like THIS.” (shows me with his hands). When asked why he did this he said, “Because
Jonathon made Liam cry”.
A fun commenting story: To the delight of both Leo and sister Sydney, our outside cat walked in the front door the other night. The cat
had never been in before. I was busy cooking dinner, and was pleased that for now I had a fun distraction for them. After a few minutes
Leo tells me that the cat went upstairs. I asked him to check on the cat, and try to coax him back downstairs. He excitedly runs up, and a
minute later comes down (rather than talking too far away) and says, “He’s in your shower. I went into the shower and petted him”. He
runs back up, and says (in an appropriate loud voice so I can hear), “Now he’s having a look in daddy’s closet, now he’s under the bed.
He’s so cute mom.” After a few minutes, Leo then says “I’m a little frustrated with the kitty, he’s not coming down”.
Free Play: Leo’s main play area, the family room, is now arranged like a preschool. It’s got a table and chairs, easel, and clear drawers
that organize his crayons, stickers, stamps, paint, etc. More clear plastic drawers organize his toys so there is little clutter. This seems to
have made a difference in appropriate choices for toys to play with, and appropriately.
He likes his binoculars (“mom, you’re really close now”), and taking pictures and getting them developed. Loves to make pancakes, and
bake cookies and muffins, all of the steps, from ingredients to mixing to pouring, to watching them bake and telling me they are brown.
With others, he chooses to play board games and action heroes (“Batman is good, the joker is a bad guy, mom”), sing songs together
with instruments, and read books.
Leo is obsessed with music and instruments. Since he was 3 he’s been able to identify what type of music he hears, whether it’s R&B,
classical, rock & roll. He can also identify the instrument (and if it’s acoustic or electric). He can play a chord, and most of the time locate
middle C on any piano.
Playing an instrument is always the first choice for stimming. He likes to play very loud, to music he hears or on video, or just on his own.
He also likes to watch himself in the mirror, and be like the Wiggles,Raffi, U2, The Hives, or Rent Broadway show.
Leo likes to look at maps of the world. He likes to talk about where we live in relation to Grandma in Florida or Aunt Loryn in California.
He also likes to discuss north and south. “We are south of Canada”. “Florida is very south”. He also likes to know people’s last names
and where items were purchased.
The cat taught Leo about death this fall, when he left us a few prizes. This began the discussion, and overall anxiety for about 2 months.
It’s no longer top of mind, but does come up every couple of days.
It all started with questions like: What does death look like? Who dies? Why do people and animals die? Does everyone die? Will I
die? Will you die? If you die, who will be with me? What is heaven like? What is a soul? I don’t want you to die. (by the time I die, you’ll
probably be married with your own kids, they’ll be with you). Who will be my wife? I’m sad that Big Puppy (attachment object) can’t go to
heaven since he’s not real (on his own he put that together). I’m happy you’ll be waiting for me when it’s my turn to die. When will I die?
(probably when you are very old). How many is that? (Around 100).
His anxiety decreased when I got the idea to place a very long piece of masking tape on the family room floor, and numbered it from 0 to
110. I showed him visually how young he is, and how far he has to go. And I showed him how Mom and Dad are closer to dying, and that
Sydney has longer to go. He was very relieved after that, and 2 weeks later the masking tape could come up. We discussed how death
is a sad topic, and that we usually don’t talk about it, and when it’s okay to do so.
And natch, the death topic moved right on to outer space. Is heaven in outer space? Can we see heaven? Are aliens real? Will they
come into my room? Can we go to other planets? What are atmosphere, air, planets, stars, and the solar system? He likes astronauts
and space shuttles. He now has a poster in his room that he loves.
Recently, Leo ‘gets’ movies. He can watch an entire age appropriate movie. Leo is beginning to understand that people do bad things
and bad things happen. He gets sad when the bad men steal the sheep in Babe, sometimes teary about it. In Toy Story, he thinks the
bad kid is mean to his toys, and in Beauty and the Beast, he can’t wait till the Beast becomes nice.
Most mornings, Leo has difficulty with Daddy going to work. He cries and is in a bad mood for about 20 minutes. No matter what we say
and how we change things, he is like this. It’s also hard on Leo since Dad is gone 2 nights per week away on business.
Leo cries after almost all of his playdates, doesn’t want his friends to leave. This is a new one. We take pictures of his friends, and he
does understand that he’ll see them next week or at school.
Leo now gets that accidents happen. He doesn’t immediately say, “you aren’t my friend anymore” when a kid bumps into him and makes
him fall, as an example.
Out of house activities: He loves to explore supermarkets and drug stores (Eckerd is his favorite). Likes restaurants and is very good at
them. Going to open houses, the mall, Playzone, walks in the woods, friends houses, the park when it’s not 10 degrees, and his absolute
favorite, visiting Grandma in NYC.
February 2003 4 yrs 4mos
Dream Team assessed Leo over a period of a couple weeks. We were then up and running with a direct instruction program, and
shadowing at daycare and camp (this was summer). Increased: Self-confidence, tolerance for a busy environment, initiation, less anxiety,
enjoyment of preferred and nonpreferred activities. Wide repertoire of skills keep him part of the group, does not stand out. Dream Team
developed an ideal scenario for Leo’s last preschool year. They looked at the environments, curriculum, style, teaching staff, and most
importantly peers. They decided that a combination of daycare and his current preschool would make an ideal social environment for his
final year. Goals: Self monitoring skills, monitoring others, interpreting various social situations, peer group entry skills, pragmatics,
perspective taking, abstract reasoning skills
Before this intervention, Leo could never play alone or with a peer without prompting and redirection. Leo now has a wide range of play
skills. He can have 5 conversation exchanges with a peer about something that is not his topic. Some of the programs Leo has mastered or
greatly improved upon; symbolic play, tell me about, tell me how to, topic towers, gross motor, same/different, senses, WH questions,
preferences, intentions, features, inferences, flexibility, barrier games, cause & effect, concepts, constructive play, desires, drawing,
emotional causality, fine motor, humor, verbal inhibition, knowing, role taking, sensory perspective taking, social judgement, listen to the
story, thinking, TOM, figure of speech.
Reduction or extermination of the following preservative behaviors: question forms, banging with hands, flicking with fingers, stamping with
feet (walking and running hard). Chanting made-up words. Banging and chanting at nite b4 bed, stuffing hands in mouth at any time,
especially when in transition or ‘shy’ in a novel situation. Staring at drains and toilets. Staring at wheels on cars. Mealtime sensory issues:
Over-stuffing, putting hands in mouth. Putting spoon over mouth and pressing hard. Eliminated fear of toilets.
Leo understands and appreciates that I do not know what happens at school, and that I am interested in hearing about it because I love him
and that it’s my job. He tells me about things that he knows I want to hear, like about who he played with, what kind of art he did, if he had a
special job, etc, with no prompting, He will just tell me about school because he likes to share that information, and he knows it’s what I want
to hear. He’s proud of himself, and likes to please me. Leo will tell me a story about what happened at the grocery store with Dad,
knowing that I wasn’t there. He knows what I like and do not like to talk about. He understands that people like to listen to and discuss
novel things, not stuff they already know about.
Recently Leo asked for a piece of gum. He knows Sydney isn’t aloud gum because she is too little. She came into the room while he was
chewing gum and I was eating a shrimp salad. Sydney immediately asked Leo what he was eating, and he replied "shrimp", and turned and
smiled at me. We both laughed, and then I cried.
I picked up Leo after school one day, and told him that we were not going home, that we were going to someplace that’s a surprise. He
pestered me for a few minutes, and was really excited about the prospect. He then turned to his 2 ½ yr old sister and said, "Leo, do you
know where we are going?". Since she heard me talking on the phone earlier, she said "We are going to Tim’s house!". He smiled at me
triumphantly, and then we both laughed.
I heard Leo use the bathroom, and did not hear him wash his hands. He came out and I asked him to go in and wash his hands. He asked
me how I knew that, and I told him to figure it out. He told me that I must have not heard the water faucet come on. He was so proud of
While he may not be happy with an event, he does understand that sometimes stuff happens by accident, that a friend may bump into him
or that Sydney may ruin a block tower. Leo is beginning to understand that people and animals are not always nice, that they sometimes do
bad things on purpose, or that they are just bad (good vs. evil).
Leo guessed that I was talking to his dad on the phone. When asked how he knew, he said “because you answered Hi Honey.”
June 2003 4 yrs 8 mos
Client: Leo Morgan Date of Birth: October 15, 1998
Age: 4 Years, 8 Months Date of Report: June 12, 2003
Submitted By: ABA Supervisor
NOTE: This is not the entire report, just the part about his current level of functioning:
Leo’ program has focused on the development of play, social skills, social-cognitive skills, and executive functioning.
Play: Upon initiation of services, Leo had a very limited play repertoire, and virtually no elaborated constructive, pretend, or socio-dramatic
play. Leo is now able to participate in constructive (e.g.: block or other bulding materials) play, and to include minimal use of narration and
environmental sounds in his play. These are, however, emerging skills, and neither his constructions nor his narration is at the level of
sophistication demonstrated by his typically developing peers, and his play tends to be simplistic and/or perseverative. His ability to engage
in pretend and socio-dramatic play is also limited to a small number of brief scenarios.
Social Skills: Leo’s ability to respond to and make simple social initiations has improved remarkably over the past year. At this time,
independent functioning in this area is at or about 70%. Leo also demonstrates an emerging capacity to employ several alternative
strategies in order to gain entry into an on-going play activity. He continues to experience some difficulties with self-regulation, and has not
yet learned to discriminate between peer behaviors that are Okay or Not Okay to imitate in the classroom environment.
Social-Cognitive Skills (Theory of Mind): Leo continues to demonstrate marked deficits in the ability to understand that other people have
different information, sensory experiences, emotions, preferences and desires. He also experiences difficulty recognizing the social cues
that are indicative of these feelings in others. As indicated in the Yale report, he will require intensive training in the areas of cause and
effect, emotional causality, sensory perspective taking, preferences, desires, inference, and prediction.
Executive Functioning: The skills included in this area are those that allow one to plan and carry out more complex activities. Leo
demonstrates deficits most notably in flexibility of thought. He is not currently able to generate alternative outcomes, solutions, or
applications in order to predict and problem-solve.
Fall 2003 5 yrs
A surreal experience, the district gave us the hours we needed for Leo, no questions asked! Natch, they were blown away by our team’s
presentations, but please, WHEN does it ever make sense or it the right thing to do??
Program Highlights: Fine Motor, Conversation, Role-Taking and Socio-Dramatic Play, Social Judgment, Cause and Effect, Emotional Causality,
Perspective-Taking, Predictions and Inferences, Executive Functioning; Leo's progress has remained consistent across all environments. He
demonstrates increased independence in both social environments(preschool and day care); and has been able to successfully participate in an
ever-widening range of home and family-based activities as well.
Schedule: 5 hours a day of school, therapy before and after school each day, 2 play dates per week
December 8th 2003; (5yrs 2 mos) Inclings of impending lawsuit. Leo flourishing.
March 2004 (5yrs 5 mos); Lawsuit, fading services
Finishing Services – Summer 2004:(5 yrs 9 mos)
He was deemed autism free that summer, June 22, 2004. Leo began school label and therapy free. He no longer needed a shadow or any other
services. We had our last IEP meeting where we closed his file right as school began. We were uncertain if we should have the OT monitor his fine
motor or not. We decided that it was too risky, to blow his anonymity, so in September we officially closed his IEP.
As a preschooler, Leo received all of his related services such as PT, OT, and SLP at this elementary school. In our district, this occurs when your
child doesn’t attend the special ed public preschool. These files were removed as well from each office. The therapists were delighted to do so,
and are now big believers that Autism is a treatable disability. Only the principal, the school psychologist, and the therapists know of Leo’s past.
His teacher, the parents, and Leo’s peers do not. This was a major coup, but we managed to pull it off. Lucky for us, there are so many kids (30%
at least) that get pulled out for delays and issues, that seeing Leo in speech as a preschooler didn’t raise suspicion.
Many of Leo’s friends continued to receive speech and OT in kindergarten and 1st grade, but he didn’t, the kid with the former major disability! Of
course, if something happens in the future, we can always open a new one – it’s Leo’s right by law. An issue is an issue.
Summer 2004 (5 yrs and 9 mos) Succeeded in getting full reimbursement plus attorney’s fees for ABA therapy for the school year. For the first time in 4
years, we were able to take a vacation longer than one week. Therapy kept these trips short. Leo monitored himself beautifully all summer long at camp
and on vacation. Each day he found different things to do, kept himself busy with his new downtime. In California, he handled his new environment
beautifully – really seeking out new people and new experiences. He had very little trouble with no longer seeing our extended family – his therapists.
We were sure to visit them occasionally and keep in contact to ease the transition for all of us.
Fall 2004 - First Day of School Story (5 yrs 11 mos)
Began kindergarten, no services! Because of the way Leo presents, it has been possible to keep Leo’s label unknown to his peers and
their parents and friends. With the successful completion of ABA, Leo was able to enter kindergarten with no shadow or other obvious ABA
services. His classmates at the elementary school will have no reason to know of his disability or of the obstacles he has surmounted.
Without the stigma attached to an autism label, Leo should be able to be treated as an individual, not as a label.
That first day was a very exciting and nerve racking day for us parents. Leo was not nervous at all, and really looking forward to seeing the
kids he knew and being a big time kindergartner. My former arch-nemesis, Leo’s former favorite perseveration object, the school bus, now
picked him up like he’s been doing it all year. Leo got on, looked back and waved. Crazy! We videotaped the whole thing – from getting
dressed, to waffles, to backpack, to bus.
His little sister asked if she could bring her stuffed animal to the bus stop. Leo got very upset and said no. We asked him why he didn’t
want Sydney to bring her animal (not an unusual occurance), and he said “This is MY special day today, and I want her to concentrate on
ME, not on her stuffed animal”. And amazingly, she agreed to leave it at home. I love my kids! Unfortunately that morning we learned that
Leo’s grandfather had died the night before. We didn’t tell him of course, until later that afternoon when we had no choice.
We sat him down and told him what happened. He grew very solemn, and said my autistic son said “I knew you were going to say that”. I
had prefaced the news by reminding him of his grandfather’s age and how sick he’d been. Then he burst into tears. He said “Grandma
must really miss him, she must be really sad”. A few minutes later, my autistic son said “Big D didn’t even get to hear about Kindergarten.”
He then looked down at our new puppy, and said” And he didn’t even get to see Shawna”. We explained to him that he can see everything
from heaven, and that he’s sooohhh much happier now and is very proud of him. I quickly summarized in my head his responses to what
had happened, noting his perspective-taking, empathy, intent, and prediction within that exchange. I still have that therapy hat on I
suppose. Later, he looked forward to going to NYC to cheer Grandma up and spend the night.
With one month under our belt, I am living a surreal life. My new goals are to take better care of myself (the usual suspects like loose
weight, eat better, exercise regularly), and to focus a little more on my daughter – get her into more activities and get her some friends.
Leo continues to blossom. I am still nervous that one of the parents will find out about his “past”, and I continue to wonder about Leo’s
development. Will I ever be able to look at one of Leo’s play dates again without inspecting, casually quizzing the mother, asking myself if
Leo does has their skills, does this child do what my child does? What if they are all wrong? What if we made a grave horrendous error?
And we pay dearly later and have to start over? What will middle school be like? What will puberty be like? Will my life always be this way?
Kindergarten – Fall 2004 (6 yrs)
His teacher has 25 years experience of teaching, and never thought anything. In our parent-teacher conferences, she described him as very social,
outgoing, and very empathetic and good natured. No problems, other than he got too rowdy with his friends and talked a lot on occasion. Music to my
ears, the kid that couldn’t speak at the beginning. I obsessively inspected every piece of art on the walls in his classroom, comparing and looking for
anything, and I found nothing.
Leo’s kindergarten was half day, so it was a step back from what he was used to (he went to day care and preschool which made a full day). He was
exceptional academically, as many of our little smart guys are. He rode the bus every day, a feat I still can’t believe, when that type of stimulus would
cause him to blow a fuse in the old days. He played with almost every kid in class, and relayed each day to me what he did, what happened, reporting
the relevant information as he now knows how to do and appreciates.
Leo went to music, art, computer lab, and gym each week, looking forward to each special. He played beautifully and typically in every way on the
playground and other times when he required to monitor himself. He handled himself beautifully when required to go from center to center, to do a
project on his own, day after day.
Leo was always asked to have play dates with many different friends and his favorites.
Towards the end, the other mothers figured out that I always had good information about what went on in class, any incident, etc, so they’d call me to
find out. They were so impressed by my relationship with Leo, and his ability to share his day. They appreciated it! Many parents also commented on
how socially sophisticated he was – when they volunteered, they’d have full blown conversations with him, about the weather, sports, the weekend, a
holiday, whatever was going on. They were very impressed and would call me to tell me about him.
I’d obsess over watching the kids at birthday parties, and to my surprise the kids actually gravitated towards him, he was in the center of it all, after
years of being on the periphery.
I saw nothing unusual, other than his size. He’s still such a big kid, and we held him because he was a fall boy birthday (and secretly of course to finish
his services so we wouldn’t have to move).
Leo brought his own snack each day to eat, and many of the kids already knew about his special snack from preschool. They didn’t care, as many kids
did this. We said he has Celiac and a dairy intolerance. Everyone got that explanation!
Leo’s residual issues are health related. He must continue to be GFCF. Until there is a cure, his body needs help maintaining optimal GI and immune
health. He has mild low tone, mild hypersensitivity in his eyes. This issue keeps him from being a super athlete, something he could care less about!
March '05 (6 yrs 5 mos)
Leo still continues to blossom. He has lots of friends and many interests. The other day he said, "Wouldn't it be cool if the ceiling was the floor,
and the floor was the ceiling? We could walk all around on the beams and cabinets." I still get misty when he comes up with really imaginative
things like that.
Summer'05 (6 yrs 8 mos)
Leo ended his year happily, and continued to play with his friends through summer at the local community pool, the park, and play dates. He
hardly noticed me around when he was with his friends. All he wanted to do was be with them. He had no problem going to a new “big kid”
nature camp, where he knew no one previously. He loved it, and quickly made new friends, and looked forward to it. Leo enjoyed family
vacations and having new experiences over the summer. He easily used his time wisely, occupying himself with stuff to do around the house,
outside in the woods, with his sister, his dog, whatever. A far cry from a kid who was terrified alone when I went to the bathroom as a toddler.
First Grade – Fall 2005
August 30, 2005 (6 yrs 10 mos) – copy of email to my family: I am happy to report that Leo had his 1st day of first grade yesterday! He loved
the day, and immediately told me that he
was really tired. He likes Mrs. X, and liked seeing familiar faces from last year, soccer, and prek, and meeting new kids. It's a really great
group - 12 boys and 8 girls,
all really great, and I know most of them already. Only one dud mom so far!
He really likes a boy Charlie that sits next to him. The cafeteria was a new thing, which he said he liked even though lunch was short. He ate
almost all of his sandwich which made mom very happy. He said "I hardly talked to anyone so I could focus, mom". His favorite part of the day
was that they had recess "TWO TIMES, Mom" on the big kid
playground. He also got to play with his best friend and a new boy at recess. Each day they have a special, and yesterday was library. I think
today is gym, Leo's favorite, with Mr. Y.
As the date was approaching, I was totally fine with the idea that he'd be gone ALL day, since kindergarten was half-day. And I was really
looking forward to a structured day again. School is from 9a-3:45p, and there is a half hour on each side for the bus ride.
That's a full day!
I kept waiting to feel sad about it, but it never happened until the night before! I was pretty nervous - mainly about Leo getting his snacks AND
at the right time.
I was very proud of Leo, because he remembered to have his snack at 10am, and told his teacher. She apparently hadn't read the note from
that morning, and he explained that he had "hyperguycemic". She got the idea and found the note. He is such a good boy!
Also like last year, I had a hard time with really not knowing every single detail about his day. I am lucky that Leo really does give me lots of
stories and information, so I do get a feel, but it's not the same as when he had a shadow with him at school and I had a full
page of notes to look at. I still can't believe we are where we are, he goes to school all day with no support, and he's totally flourishing.
Especially when I see other kids walking around school with aides and I think that was us just over a year ago.
I've never been good with transitions - I've been a bit sad, but Leo is happy which is the better news. And Sydney has been a bit needy and
misses Leo a lot. This has changed our relationship a bit too - just us girls during the day. She starts school after
labor day, but it's just afternoons.
Just wanted to share the good news with everyone. Very exciting!
Thanks for listening, Ashley
November 2005 (7 yrs 1 month)
Everything continues to be going well in school. Leo’s energy is back after getting used to his big long week days, and
now we have occasional after school activities – a play date with kindergarten friends, Tae Kwon Do, or just riding bikes
with his sister before dinner.
We had our first “incident” with a boy that was picking on him (bound to happen to any gentle kid I suppose). He handled
it beautifully – told me what happened (the kid tried to trip him in class a few days in a row). He didn’t want me to make a
“big deal “ about it, and didn’t want the other kid to get in trouble. I think he regretted telling me. We let Leo handle it,
and he did. He was very firm with the kid and it hasn’t been an issue. All very appropriate – not wanting to be
embarrassed by his mom, etc. More music to my ears. I also liked his judgement on how to handle the situation, and
how he still had empathy for this bully of a kid that bothered him. I look forward to the next parent/teacher conference.
His teacher says he’s doing great, a smart kid, and a very easy going kid.
Also there's a little boy in Leo's class named Patrick. Patrick also has Down Syndrome, just like a cousin of Leo’s. Leo
talks about him a lot since he's a boy he already knew, from a visit to our vet ironically, and today Leo and Patrick were
line leaders to and from the cafeteria. Adorable! And the best part is that Leo doesn't differentiate between Patrick and
any other kid. He did mention in another conversation that there is another grownup in class that helps Patrick
Leo’s teacher initiated a conversation about Patrick and Leo. She mentioned how exceptional Leo is with him – patient,
tolerant, and how Patrick relies on Leo. She said Patrick let Leo hold his hand down the hall going to lunch – a first, not
holding an adult’s hand which was their goal the previous year. Patrick’s aide pretty much said the same thing about
Leo, how kind he is to Patrick. Now, if only the rest of the world were like Leo.
And How About Mom?
Stress for me is leading a double life, and not being honest with many people I am close to. And I do still have post-
traumatic stress issues. Autism will always affect me as what I know about the world has been dramatically altered. And
as you can see, I haven't turned my back on autism. I could, and most people do. I find the best parents, most honest
people in autism. It's great to be "all" of me with them, and autism makes people honest, which is like a breath of fresh
air to me.
Last nite, my husband and I went out to a local pizza/pasta restaraunt. We hadn't been there in about 6 years, before
Leo was dx. It really impacted me to sit there, in my own town I know so well, and see people eating wheat and dairy,
food that is so exotic to me. I began to think about how we probably would have ordered a pie each week from this place,
and our kids would have known the staff there if autism wasn't a part of
our world. They of course know the HFS in this way, ha ha. We rarely go out, and we've never been away from the kids
by ourselves (we have no family to help out), so this was a rare event.
Top of mind is that most kids in our autism support group have ongoing services. There are two that
have reached recovery status, 2 in the hopper, the rest are all in intensive programs, in school, etc. There are a few that
are pretty severe as well.
I understand what some parents mean about "making peace". I can NEVER make peace. I think there is a distinction
between acceptance and doing everything you can possibly do, leaving no stone unturned, to maximize the potential of
I take each child with Autism personally, my love for these children and the INJUSTICE of the state of these things keep
me typing away, going to groups to talk to new parents. Some days I feel like putting the site down and walking away. It
varies day by day, just like a child with Autism.
January 27th 2006 (7 yrs 3 mos)
Just last week, Leo told me a story about a boy that has been bugging him on the bus (and he's in his class). For months, Leo has handled
the situation beautifully – ignoring the attention-seeking behavior, and sometimes shooting back an occasional 1st grade-speak such as
“so”, “who cares”, and “whatever”. This kid has his own share of problems – that’s life. Anyway, he said, "Hey Mom, I think Charlie likes me
again". I said, "really, and why do you think that?" Leo said, "I was drawing in art center today, and my paper was too big for my space.
Charlie noticed, and moved some books out of the way. Later, he smiled at me for no reason". He’s also drawn the parallel between his
sister’s attention seeking behavior (like standing in front of the TV) and his classmates. He’s wise beyond his years in so many ways.
The other day at Leo’s weekly Tae Kwon Do class (red belt now), his instructor challenged the class to think “out of the box” to achieve a
goal. While jumping as high as they could, she told the students to touch the ceiling. They all looked pretty puzzled. She said, “No really,
touch the ceiling.” Off the kids went, trying to find a way to touch the ceiling. Some kids just stood there, really confused. Leo was first to
figure it out – he found a stool and placed it next to the wall and stood on top to touch it.
Leo gets in the car and says he met some new kids today at recess. I said, “really – you didn’t play with Anthony or Clark today like usual?”
He said Anthony was inside for recess today for some reason, and that he “didn’t feel like” playing with Clark. He saw some kids playing
football, his latest interest. He said he started talking to them in line after lunch, because he and one of the boys had jerseys on. He joined
in and had a good time. He even challenged the boys on which team should go first (pretending they were in Pittsburgh, so the Steelers
should go first). They all agreed with Leo. He thought they argued about what to do more than actually play. He thought that was
We watched E.T., the movie, during a snow storm. I wasn’t sure if they were too young, I didn’t know if they’d really get it. Leo was rivoted. I
explained a lot, background stuff about aliens and the scientists, what they were doing in the first place. Leo was upset that Elliot’s mom
didn’t believe him. He was upset at the scientists attempting to “get” E.T. He got how E.T. wanted to go home, he and Elliot’s friendship.
Not at an adult level, but Leo got the conflict between E.T.’s friendship with the kids and his desire to be home with family. Talk about
Captain’s Log, Stardate, June 22th, 2006 ( 7 yrs 8 mos). Today is Thursday, the last day of Leo’s time in 1st grade. It also marks the 2nd
anniversary of ending services. I no longer have my 1st grader, but a kid ready for a fun summer. Our uncharted course through typical
childhood continues uninterrupted. It was a terrific year! Now, tell that to my anxious brain at 2am... Each day that has gone by has been a gift.
A gift that keeps on giving as I look at him in the middle of the night and think about what a charmed happy life he has. What a big boy he’s
Leo was VERY sad that school had to end. He LOVES his teacher, and loves his routine at school (yeah, you’re surprised to read that... a kid on
the spectrum that likes structure? No! ha ha)
In the bath the night before, he was beside himself with grief. He said that day was just the” WORST DAY OF SCHOOL EVER!” I said all the right
things all parents say, that never seem to work. Why do we say them? I have no idea. It made me feel better saying them.
Leo said he wanted to have 1st grade all over again with the same teacher again, “like the life cycle of a butterfly, Mom. I want to be little again and
have my same teacher over again for Kindergarten and 1st grade”. Pretty cute. I thought about how Leo really IS in a life cycle, just much longer
than a larva to butterfly! And that I’m in it too.
Leo held it together all day. He really understood that it was really over, versus for other kids it doesn’t sink in until they’ve been home for a few
days. He said everyone was sad but no one, including him, cried. I couldn’t believe he DIDN”T after the display the night before. Leo said he
started to get the “funny feeling” in his nose on the bus while driving away from the school, but managed to keep it together. After he got off the
bus, he ran over to me and started crying. It was adorable and I felt for him.
But before all of that, let’s catch up:
Winter was fairly uneventful – Leo did really well on his first ever long-term study. The unit lasted 2 months, and it incorporated reading,
researching, writing, math, and science. The kids really liked the topic and motivated them to practice their new skills without really knowing it.
The earlier growing pains for both of us, Leo and me, worked themselves out. The two kids Leo had issues with (the bus kid and the kid in class)
was handled and today he is friends with both boys. I realized kids try to figure out where they stand in their new social situation at school, just like
us adults at a new job. They all jockey for position, they all want to be liked, many look for weakness as a way to be strong themselves, they all
have so much to figure out, they all have issues to work on.
For the first time, I realized how I wasn’t part of Leo’s daily school life. I had very little impact directly. Everything had to come from Leo. For the
first time, I couldn’t orchestrate Leo’s choice in friends or how he’d spend his free time. All I had were the years before us, all of those talks, all of
the lessons – parent to child, to draw upon for reference. Fortunately, Leo’s trust and open way maintained throughout the year. I had many
‘Academy Award Winning’ performances after learning about Leo’s trouble with those 2 boys - stuff I hadn’t had to deal with yet as a parent since
he’s my first.
We made a deal, Leo and me. If there was a problem, I promised that it would be up to HIM on how to handle the problem initially. I’d present all of
the possible solutions and he’d have the final say about what to do first. If THAT didn’t work, then we’d try it my way. Fortunately, in both of Leo’s
situations, his solutions worked.
The first problem: A boy in class was trying to trip him in class when the teacher was conferencing one-to-one with another student (sneaky). Leo
decided to confront him directly the next time the boy tried it. Leo asserted himself and told him to basically cut it out, and that was the end of it.
He was very proud of himself – he handled his problem himself. Very empowering!
The second situation: Our neighbor kid has some problems that haven’t been dealt with. Basically he’s a wild kid with untreated behavioral
problems. The parents are pretty clueless about it so far, so there isn’t much I can do AND he’s a neighbor. My hands are tied for now.
Leo was really turned off by his behavior and as a result he didn’t want to play with him outside of school. Leo isn’t a “boy’s boy” like this kid, and
his interests and play style was too way over the top for Leo. Frustrated, this kid didn’t like the rejection and started saying “mean” things to Leo
on the bus as a result (I don’t like you, you have a small brain, I wish you didn’t ride this bus, etc). It was SOOHHH hard for me to hear all of this,
and I had to hear it NOT from Leo but from another kid’s mom on the bus. Leo confirmed it, really more interested in how I knew than than the
incident itself. (talk about theory of mind....)We talked about the many possible ways to handle it. We both were so grown up about it!
Wide-eyed, Leo was very interested in all of the possible ways to handle this kid on the bus. I could talk to the parent. I could talk to the bus
driver. I could tell the principal. I could talk to the boy. Leo could ignore the behavior, taking away any power the kid has, showing the kid that the
words don’t work.
Leo chose to ignore the behavior. Even though it killed me to know that the boy was STILL talking trash on the bus, I wanted Leo to believe I had
his back and that I believed in him. This eventually worked. It was a looonnnnggg couple of weeks. Every few days Leo would fill me in on if the
neighbor kid was still “saying stuff”. This eventually worked, the kid lost interest. Phew! Leo even compared the bus behavior by this kid to his
sister. Sydney will stand in front of the T.V. to get his attention (ahhh....those negative attention seeking behaviors....Leo’s quite the behaviorist).
Here are a few spring highlights:
After listening to some music (something from my Alternative collection, maybe Coldplay?), Sydney asked what some of the lyrics meant. It was
above both their heads, but Leo answered anyway “he’s singing to his girlfriend Syd”. He was able to figure that out based on the mood, tone,
everything that happens in a song except the actual words.
On vacation at a beach resort, Leo listened to music coming from the day spa. He said the music made him feel relaxed and happy. He said that’s
probably why they have that kind of music while people get massages.
Leo made a friend on that same resort vacation. He began playing basketball with a boy his age (not younger, thus less intimidating, like in the old
days). They played together in the pool, swimming around and playing catch. By the end of the few days together, they had their own inside
To my utter amazement, Leo began to take a huge interest in team sports. I think I’ve mentioned football before. Baseball and hockey is also on
the list. He no longer winces at the ball coming at him, and he actually has a good spiral when throwing the football. From a kid that spent years
practicing with a ball on the pulley. He also loves watching the game and enjoys collecting football cards. He eagerly awaits for his Sports
Illustrated Kids Magazine to come in the mail.
Is he obsessed with football? YES. Is it in the perseveration way? On occasion. About once a month I’ll have to tell him to stop talking about or
playing football for a day, that it’s interfering with other activities. Mostly he’s like any other kid that’s obsessed with sports, but for me it’s
uncomfortable because I’m always thinking of it in the worst light, with my skeptical “ready to bust him” glasses on. I don’t like it when either one of
my kids has a strong interest! Poor kids! It just makes me nervous – my baggage after all this I suppose. But hey, from a kid that stimmed all day
on inappropriate activities to a kid that plays well with football, I can’t complain!
For the first time, Leo thinks of the future and wants to be a pro football player when he grows up. His imagination conjures up a very detailed
successful life as a superstar.
Leo made up a game to play at recess. It’s a video game, where all of the kids are in one on the field. They run around and shoot bad guys for
points. They got all the way up to level 17. He orchestrated the whole thing and the other kids look to him for direction.
Leo has been playing for weeks with a kid and doesn’t know his name. This, from a kid where names used to be ALL that mattered.
As Leo and Sydney have gotten older, the more they seem to be in “kahutz” with each other, plotting against me, sometimes for “bad’ things like
not brushing their teeth, ways to stay up later at night. Other times it’s for Mother’s Day. Very cute!
Leo wasn’t the worst player for spring soccer. He was right in the middle. I was so happy to see that, especially since he likes it so much. And he
loves watching and rooting for teams during this World Cup. He doesn’t hesitate to get into the middle of things, and rarely flinches his eyes. I
never thought he’d ever play on a team.
I watched Leo in awe at a swimming pool birthday party. After years of aquatic OT to get past his fear and sensory issues with water, he was right
in the middle of a splash fight with his fellow 1st graders. After that, he successfully had fun doing a sack race AND did wheelbarrows with other
kids. He actually let another kid hold on to his ankles. From a kid that couldn’t get past 3 “steps” with his hands for 6 months. At the end, they had
a water balloon toss – here Leo was catching and throwing wonderfully like a 1st grader and laughing when the balloon popped and got him all
wet. (the unpredictability of that stimuli, the “in your face” activity). The catching and throwing. Pretty incredible day.
I reminded him later about all his hard work, the swim classes he dreaded and stayed up all night the night before, all the extra “practice” as we
called it, with OT, and PT. That because of all his hard work, he now can have fun. He has choices! That if he hadn’t done all this work, he would’
ve told me he didn’t want to go to this party and he never would’ve had such a fun day like this.
He now has playdates with the kid that tried to trip him in class at the beginning of the year. Of course, I’m still secretly mad at the kid, but I’m the
mom so it’s okay.... ha ha
What are Leo’s residual issues?
Leo is different, and will always be so, until there is a cure. Do I really want Leo cured? Well, I don't really know. He's a happy boy with many
choices. If that changes in Leo's future, if his disability impairs him in the FUTURE, I'd opt for a cure. It's all that I ever really wanted, for Leo to be
happy. His happiness was my fuel to getting him the help he needed.
For now, we are happy he no longer needs therapy. Like most of our kids, Leo's GI and immune systems are different and don't function properly
on their own, so on the Biomedical side of therapy, we continue to be GFCF and we give him enzymes and allergy treatments like Bioset. Would I
enjoy not being Betty Crocker GFCF Organic Momma? Yes suree bob. I'd love sending him off to school where he could eat cafeteria food and
eat at other people's homes and restaraunts.
What about behaviors? School? Social situations?
Self monitoring, specifically, exercising self control is still challenging for Leo. This goes under the category of Executive Functioning. A perfect
example of how Leo is wired differently on the inside, in his brain. Internal organization that comes naturally to us had to be learned by Leo.
This issue doesn’t stand out over the other 3 boys that also have this same issue, or really any 1st grade typical behavior. But I know the reason
for why it’s challenging for him. It’s not immaturity or acting out. Specifically, he’ll talk out of turn, not being able to help himself and answer the
question when he’s not called on. He’ll finish the teacher’s sentences. We all do this in our heads, we know where something is going, we know
what the answers are sometimes, but for Leo, he sometimes can’t keep it in his head. He’ll “call out” once or twice a day out of turn. Again, not that
he’s the only one doing it, but it’s not immaturity or not listening on purpose. Leo’s got to actively keep aware of his thoughts and what he’s doing.
The good news is that he doesn’t stand out and he’s getting so much better at monitoring himself.
How does this play out on his performance at school? Just dandy. On his report card, he got an “S” for Some Progress Noted, further
development expected for “Exercises Self Control” . “P” for Progressing Well is the best mark. And as always, there’s an “H”, for Needs More Help
and Time. Leo only got three “S’s” out of 50 marks. And no H marks! What? I know, pretty incredible.
The other S marks were under Evaluates Own Work Accurately and under Follows Directions. Both fall under Executive Functioning. And again,
they aren’t H marks, only S! He’s gotten better over this year, and I know he’ll improve even more over time as he matures.
How about those “P’s”?? All “P”s for the rest of 50 categories. He listens attentively, he shows persistence and stays on task to completion, seeks
help, organizes works and materials (you’ve got to be kidding me here, I still can’t get over this one). Demonstrates respect, responsibility, accepts
suggestions, amazing! Natch, reading, and math are okie dokie. Even writing is strong! He can write stories with a beginning, middle, and end. He’
s actually one of the strongest story writers in class! He self corrects when reading. His handwriting is strong. Boy, for a kid that could barely hold
a pencil let alone make a mark on paper, it’s pretty crazy.
Do I have the Voo-Doo Magic??
NO, silly. Because my son has reached recovery status, other parents often think I have tried harder or have some magic formula. Not true! I
could give you a long list of parents that are way better parents than me that DON'T have our outcome. Luck, talented staff, and the ability for me
to be at home to focus soley on Leo's intervention got us very far.
Out of the box, Leo had some good skills - he was high functioning, so we didn't have "as far" to go as some kids. Ironically, many kids I know have
made greater strides than Leo, but because they started out with more issues, they are not as high functioning as Leo today.
Leo continues to lead a discrimination-free life and is judged as an individual, like ALL children should be. We continue to keep the bar high for
Leo, along with his 5 year old sister. I think they can do anything! That bar helped him succeed and fly through his programs when he was little
and continues to keep him motivated and confident as a happy 7 ½ year old.
Cure? Who cares. Recovery? Whatever! Let's not get hung up on words. Let's get hung up on the fact that autism is a treatable disorder.
Maximizing the human potential is the brass ring my friends. Leo was lucky, like many others, regardless of outcome. He got what he needed, like
every child, autism or not, should. Leo is just as lucky as the non-verbal kid that got a beautiful, fully funded program, executed by a state of the
art talented staff.
July 11, 2006 - Lifecycles and Summercamp ( 7 yrs 9mos)
During the last days of 1st grade, Leo talked compared his life to the life cycle of the butterfly. He explained that he wanted to "start
over as a chrysalis and go back to Kindergarten and 1st grade again" with his same teacher that he's pining over. Indeed, he was
sad his time with 1st grade was over. Finally, he's happy that he's going to be a 2nd grader, and now appreciates his summer time
I was thinking about this while waiting in line to drop off Sydney (2 1/2 years younger than Leo) at that very same camp Leo did for
years. That learning environment - so critical for his success. That foggy chronic blur of anxiety that lasted forever it seemed. And
here I am again, like the butterfly, with Syd. Here she is, her rite of passage, ready to bound out of the car, Care Bears back pack,
ready for her day in the sprinklers.
I look in front of me and get a wave from Caleb, a fellow ASD child that is in Leo's former shoes. He's anonymous like Leo, and his
mom is in that mood state I know only too well.
For the first time, Caleb is going to camp BY HIMSELF. We celebrate! But, I get a wave of nausea, and after a couple minutes it
passes. It's just as hard, you get to this point and now you don't have all the information you are accustomed to - a beautiful full page
of notes. You have nothing but faith and your child to count on that all is well.
Leo and Caleb's former shadow, Laurie, is behind me in HER car, waiting to park - we exchange a nod. She's been coming here for
years now, and today she begins with Brian. Laurie is a butterfly too. I wonder what she's thinking as she smiles at Leo who is
hanging out the window talking to some kids. She spent all that time with him, she knows him so well. And ditto for Caleb. And here
she's starting over with Brian.
I see all of these cars with people that have a different life than mine, Caleb, and Brian's. They are in the dark about what's really
going on with some families - the struggle, all that stuff we all know too well. Yet, here we are, peppered all over the parking lot of this
camp. All over town, all over the world, going about our day, no one the wiser.
Each day continues to be a gift. Leo's smile, his confidence, his desire to do things, to learn, to put himself out there. This reminder,
although bittersweet, is a necessity - I don't want to ever forget.
|The Physical Side of the Spectrum 7/18/06 (7yrs 9 mos)
Yesterday marked my bi-annual check-in with the medical community. What does this mean? Twice a year I must take my children to
see our western pediatrician for a Well Visit, and yesterday was Sydney's 5 year Well Visit (the typical one). Don't you love this word?
The irony!!!! So many thoughts come to mind I get dizzy just thinking how to arrange and dicipher them. Their definition of "well" is
quite different than many parents with our kids. Indeed!
Don't get me wrong - I don't HATE western medicine. Quite the contrary, it's just not the be-all-end-all, one-stop-shopping. We do
need it. I need it, but that's not all. If it wasn't for western medicine - neither of my children would be alive. Both were C-Sections, Syd
had life-threatening bouts of the croup and survived by orapred and albuterol, and it would've been unlikely I would have made it
back from my fall into major depression (thank you, Lexapro and Wellbutrin).
The days of western medicine ONLY are clearly over. Today we need nutritionists, primary care physicians and various specialists -
heart doc, knee surgeon, neurologist, and chiropractors to get through our year. Don't you all remember when chiropractors were in
the Voo Doo category? Economics have brought them mainstream via insurance companies seeing they work, as well as other
To make it bearable for me I prepare in two ways:
1) prepare a mantra for the vaccination spiel
2) select one or two questions that would be FUN to ask a western doctor
1) Mantra in mind, I sort of listen to the vaccination spiel, first from the nurse, then for our ped. The nurse says Sydney will need
vaccinations, and I respond calmly and non-threatening "We don't do vaccinations, but thanks." The nurse responds in a scolding
tone" OH, well she's going to really need them for Kindergarten - they simply won't let her attend". With no confrontation in my voice,
matter of factly I say, "She doesn't need them for school. It's quite easy to sign an exemption form. Really, it was no big deal, pretty
easy." Quickly, she backed down realizing I was simply hopeless. And of course she knew the options herself.
My mantra while my ped did his speech: "He is a good man. I know I'm doing the right thing", while remembering to breathe. Focusing
on my breathe really calms me right down. When he finishes, he looks at me, hesitantly. Curiosity gets the best of him, each year. It's
actually quite endearing. He says, "So when, if at all, do you plan on vaccinating?"
I say what I say each year, "We'll have to see what they learn about Autism over the next couple years. I'm a very conservative
person. Until they know more about the GI and immune systems of our ASD children, I will wait."
He knows the rest, over the years we've bantered back-and-forth about it all. The subsets of Autism. That I refuse to add to my
children's toxic load. I don't care only about mercury. I care about cadmium, alluminum, flouride and other metals. I care about the
viruses (envelope, live viruses, however they are delivered), and how they impact our children's unique systems. I consider the whole
child and the impact of living on this earth. Other questionable substances have been discussed at length: grocery store sunscreen,
conventional produce, processed foods, GMO's additives and preservatives. I am thinking about new info I heard from my Bioset
allergist - that 'Big Organic' is requesting to spray MSG on fruits and vegetables. What? I'm not kidding around here. Can we all
shout endocrine disrupters? Anyone, anyone?
2) I ask him if there's anything to do to "counteract" the effects of chlorine since the kids will be in the pool all summer. He said that
chlorine doesn't affect them systemically, so as long as you wash it off topically, we should be fine. Interesting response! And that
was what I was looking for, entertainment.
All in all, the visit was a positive one - Sydney did great with the eyes, ears, and prick test for iron. She's really shot up this year -
90% for height and weight. Leo and his dad are very tall.
Syd hands our ped a bag of leafy veggies we picked that morning (chard, spinach, lettuce, basil, and peppermint). A piece offering I
suppose. He was delighted. I think of our ped's OWN daughter. They are almost the same age. I wonder what's in THEIR fridge. I
wonder what her little brother will be like.
He sees us pay, and he can't resist. He comes over and casually asks how Leo is. I chirp back "He's doing great! He's loving
summer, and he's in camp right now." Maybe he's thinking about the 10 other ASD children that go to his practice and their quality of
life. Who knows.
This experience reminds me how different each person on the spectrum is. Each person is their own special blend - we can't make
blanket statements about treatment options. For more on this subject see https://hiddenrecovery.com/ and click on Therapy
I think we were lucky - some kids are SO sick physically. More environmental, less genes/wiring I suppose. And some get better! I was
chatting recently with a fellow recovered parent. Her son was SO sick physically. We didn't have that, it was pretty mild. With
homeopathy, she was able to make him better physically. Because of this, he lost his autistic symptoms.
My friend has unique insight. Recently we were discussing those factions that dismiss any reference to Autism as an illness. For
some, part of it is - hence providing another example of how different each person is on the spectrum. For us, if I didn't explore our
biomedical options such as chelation, enzymes, and the GFCF/SCD diets, etc, Leo would still have communication and social
problems. Was I wrong in doing these things? I don't think so! If I accepted his condtion 'as is' without exploring the viable options out
there, he wouldn't have maximized his potential. For us, these things made an impact, a huge one. Again, Leo will always be wired
differently, but today he is a healthier happier Leo.
My friend said, ' The fact that my son did get better proves it was not who he is. It was something that affected him.' And then later,
'Before the homeoapthy really kicked in, there were days when I questioned what I was doing and whether I should just give in and
maybe consider it was just who my son was and then there would be glimmers of who he could be and I knew I couldn't do that. I
couldn't just give up on him." And today her son no longer has an ASD diagnosis.
Today, both Leo and my friend's son are as healthy as they can be - we try every day.
|Slumber Party Milestone 7/23/06 (7 yrs 9 mos)
Friday was my birthday - yes, I'm a ripe ole age of 41. Tradition calls for cake and dinner for our little family of 4 at home. We even
have a hat and a plate that goes right with it. Tradition had to be postponed for a special invitation that Leo received - a slumber
Leo's friend Peter got to invite 3 friends over for a sleep-over after Peter's 7th birthday party. Leo was so touched that he was one of
the 3. One parent declined , so it was just Leo, Peter and one other boy Aaron. The threesome went to bed a 10:30pm and woke up
at 6am. He told Peter's mom - "I'm having so much fun. I'm going to tell my Mom I had a blast!". Later, Peter's Dad heard Peter and
Leo talking at 4am. He went in and said, "Hey, guys, okay now let's go back to sleep". All heads were in the middle, bodies in their
sleeping bags - Leo, Peter, Peter's little brother, and Aaron. Adorable.
I happened to drive all of the boys over after the party. Those precious conversations I'll never forget overhearing - "Do you have a
guy, you know a stuffed animal to sleep with?" And later - " Yeah, I do. Let's all get our guys out for the movie, okay?" And sure
enough, peter's mom said they watched Sponge Bob with their "guys". Later, the picture showed them all crashed with their stuffed
The amazing news is this - Leo is strong enough to handle less sleep, and sleep out of the house on the floor in a sleeping back,
and some non-GFCF, processed foods. The old Leo would have been "put out" for days if he had bad food or less sleep. He is so
strong now! I am confident he'll get his needs met. I am confident he'll call me if he's sad or needs something. I am confident I am
truly blessed. Sure, we all thought it was weird that he wasn't home that night, but it was great.
The Mom and I discussed the food options and planned accordingly - enzymes included. She was the perfect first host for this
milestone. She was sensitive to his needs "right food right time", since he's very hypoglycemic as well (duh, right?). Leo has also
spent a lot of time at Peter's house and with Peter in general. Perfect! And for the record, she doesn't know of his past diagnosis or
I also must comment it was a milestone for me. My challenge each day as a parent is to balance my personal issues with parenting. I
strive to make smart choices for my children without my issues interfering.
I had a BAD BAD BAD childhood. Let me say it was just BAD! So it was huge for me to let Leo sleep over with another MAN in the
house, a potential predator. Natch, we adore Peter's dad, but how can we ever know for sure he's okay? Or even Peter's mom? I
think about this stuff every day - I think about how Leo's elementary school doesn't have a fence around it - anyone could walk out of
the woods at any time during recess and grab a kid and disappear. I think about the loose security about pick-up and drop-off at
school and now at summer camp. True, this IS Wisteria. True, safety is the main reason why I chose this town we live in, but STILL.
Indeed, I casually quizzed Leo about the camp counselors - did they see him change into his suit? What did they do in the pool? I am
lucky Leo is very open and descriptive - those early intervention hours are still paying off!
To top it off Leo, chose to have a nap the next day, which secured the likelyhood he'd have a better day. What good choices! What a
July/Aug 06 (7yrs 9 mos)- Vacation was great. Lots of water parks, swimming, parties, and sleeping in many
situations. Eating lots of different foods. Unstructured time. Lots of Uno, Battleship, and bike riding. Phones were
buzzing in our small town after class assignments for 2nd grade were sent out. Leo is with his best friend again.
Woo hoo! He loved 1st grade without him...will he be a crutch, too much of a distraction? Ah, the anxiety never
ends. Working with a homeopath for hypoglycemia. That would be a big load off, if he and I didn't have to manage
the frequency of his eating so much. We'll see!
|Aug 22, 2006: 7 3/4 yrs old
The concept of time broadens. Recently Leo asked me who his first friends were. He's asked me many
times in the past, and each time there is a new layer of understanding, like the layers in an onion as they
say. We started with the friends he knows in town, which is what I thought he was driving at. His oldest
friend, Janie, he met when he was almost 2 (just right around when he was diagnosed). I finally explained
that technically, his first friends were from my Mommy and Me group in NYC when Leo was just an infant.
Tiny infant friends. He said, “Wow, I’m sure you had to take a lot of classes on how to be a mommy. You
had to learn so much since I was born first”.
I thought, what irony! The assumptions he made on his own about being a mother. If only we had all taken
mommy classes before the hospital handed us our tiny newborns, and fend for ourselves. Leo assumed,
that of course we all had to be trained in order to do what we do. After all, that's what HE does, right?
Goes to school, learns stuff at home. Experiences life. He's fully aware of what he understands versus
the breadth of understanding that us adults in theory have.
It also reminds me of what a blogger said once, that our children are at their most intuitive time of their
lives as toddlers. They do not have enough life experience just yet to make assumptions and
generalizations, and better yet make false assumptions. I had to break the news - all of us new parents
pretty much wing it. Nothing prepares you for parenthood.
|Tuesday, August 29, 2006 (repeated from blog) 7 yrs 10mos)
Taking the Disability out of Autism
And what is left? A person that's just different.
Leo began 2nd grade on Monday. It's Wednesday, and I keep thinking I ought to be documenting as
always. It's a strange thing - I have nothing exciting to report about Leo (me, yes, see below). No issues,
just stories about his "specials" like music, gym, art, and library. As with Leo's former teacher, Mrs. P.
doesn't know he used to have an IEP. Time will only tell how his executive functioning differences/issues
will play out. (see first grade, 6/22/06). I haven't figured out how to tag, sorry!
The way he processes will always be different. I'm guessing it'll be the same as 1st grade (talking out of
turn, calling out answers, finishing sentences). His former teacher speculates this will still be his
challenge, but that he'll be able to improve, slowly, over time. And it also depends on his new teacher
and what her tolerance level is. Who knows. He isn't the only one doing this, but Leo has his unique
reason why. On my list of stuff to worry about.
Weird. I spoke to an ASD mommy friend on the phone today - as with all of us, we are checking in with
our friends to see how the first days of school went. I said, "You know, It's been very anticlimatic." First
grade was the *big* transition. As I've been told by many people, 2nd grade is really like a reinforcement,
a repeat of the concepts in 1st grade. Okay, that's fine - Leo is "one of those ASD kids" that excels
The desire for sameness. Check. The desire for structure, predictability. Check. Knows the school inside
and out, has his best pal in school, same bus, same driver. Check. He knew 80% of his classmates
already - from our small town activities, some from kindergarten, some from 1st. Check (and nice!). He
still gets to see his former teacher for hi-fives and hugs. Check (and bonus!)So far has no issues with
school. He's doing the same thing he did last year, only the classroom is 3 doors down.
Leo's kid sister began kindergarten and now he sits with her on the way to school. They are extremely
close, and I love that they now go to school together, and say hi occasionally during their day. Their best
friends are also sibs (kind of creepy I admit), so it's quite a close-knit situation - we all know everyone's
business, and it's transferred through the siblings. Another solidifying part of his life. A safe place to try
new things, put himself out there. To grow.
And what about this new safe haven we've built for Leo? Knowing everything, the structure, vs. everything
new, more chaotic and diverse?
The close knit community - really wonderful families that have the same goals and values (aside from the
super-Christian stuff). Everyone seems "the same", very Stepford, but not in a bad way. Just in a
What if we had moved back to California and I went back to work full-time? A big cost-of-living
difference. Private school a sure thing. Questionable neighborhoods, stepping over homeless on our
way to the grocery store (well, HFS!). What if everything was new? Would Leo turn out more prepared for
a cubicle in the future? For college? Am I fooling myself into thinking this is the real world? Is there a
downside to creating this environment?
I moved every 6 months as a child. I don't remember any friends, except a picture I have of a beautiful
East Indian girl named Marcie that "was my best friend". I can only recollect the photo and a few
memories. And then there's the abuse and no parents to give me a foundation. As they say, "what
doesn't kill you makes you stronger." I am living testament. I'm sure I'm overcompensating, but I really
wanted, ASD aside, to raise my children in a consistent solid environment so they could blossom.
Ahh...The comfort zone
Will Leo be ill-equipped to handle the real world? Given his difference, is this lifestyle a blessing or a
curse? What about experience in chaos?, grown-up chaos? What are the downfalls, at age 7 (almost 8),
to being exposed to more diversity (it's quite white and Catholic around here, and Leo is half Jewish).
Raising kids in a safe place - when is that not a good thing? What if Leo fell asleep to the sound of
garbage trucks and sirens, versus bugs and birds, and you can see the stars like it was day? All the
pets. The garden, being connected with the earth? I'm keeping my options open - charter high schools,
private schools for down the road. I want to be prepared for every foreseeable scenario. I realize this is
impossible, but hey, I have to try.
Although Leo's environment is quite cookie-cutter, I try to live my life by example. I tell Leo I voted
Democratic when it's a Republican town. I explained homosexuality, hurricanes, poverty, global warming,
and other topics that don't gel with his (and my) fantasy childhood.
As always, I am reminded of how far he's come. How truly disabled Leo was. A bus will never be a bus.
A hallway will never be just a hallway. I re-read the note from last year to edit for his new teacher about
his "food allergies" and hypoglycemia. (He requires an "extra" snack in the afternoon since he needs to
eat around every 3 hours). Boy has he become more independent! Leo's Autism no longer disables him.
He still has ASD, and I love those contributions madly. I honestly do. But he no longer has anxiety, chaos,
and challenges that are often associated with ASD.
And what about Mom?
I'm plugging away at my IEP goals for Leo. I am a list keeper since it keeps me really organized. Here is
my Worry List for Leo:
1) Worry about Leo's calling out, and talking out of turn
2) Worry about soccer. This year they now add a practice to the week, and they actually play positions.
Like the last couple years, this is regular soccer organized by the town. I wasn't welcome to participate in
special ed soccer because of Leo's status (see discrimination for more on this). He's not the worst
player, but he's not great. This should be interesting, to see how he can "juggle" what everyone is doing
and what he should be doing. Theory of Mind comes into play, and I hope he holds up the ability to see
intention amongst his fellow players. I hope he can hold his own, as many of his friends play, and he
loves to be with his friends AND he loves soccer, especially since the world cup.
3) Worry that something else will come up where he'll stand out and it matters to him.
4) Worry if Mrs. P. actually "knows" about Leo's past. After all, we've been going to that school since Leo
was just 3 - tiny short legs swinging from the big kid chairs in a cramped office for speech.... She's been
there forever, and her classroom was close to where "the fireworks" of my tirades and other heated
meetings took place. All of Leo's IEP meetings where held there and he got services from 3 to 5 there -
7 hours per week. And again, my worry is only because I don't want teachers to treat him differently,
which is why we keep Leo's label a secret.
5) Will the "finishing sentences" thing manifest into a secondary disorder in the future, such as OCD? I
know I can be very OCD.
So what else can I tell you about Leo? He loves soccer and football. He plays immediately when he gets
home - very "organizing" for him. A nice transition. He has lots of friends that are very different. He used
to only be attracted to the loud "boys' boy" kids, I think at the begining because their social cues are
easier to pick up (the whole neighborhood could pick them up). Now he likes all kinds of kids, and his list
of friends are as diverse as they can be.
Leo continues to be best pals with Sydney, his younger sister. She's quite precocious, so it's a nice
match. Sometimes they act like twins. They also share a room - bunks, so they just don't know life
without each other.
Leo LOVES Lizzy McGuire. He watches the series, but insists his favorite is the movie where they go to
Italy. He's not embarrassed that he likes a "girl" show. Big news? The Cheetah Girls 2, the movie, just
came out, and by god they love it. They've watched it every day since this weekend.
Topics? For some reasons he's asking a lot about Egypt. I can usually figure out the genesis of
something I think is random, but for this I can't. He also likes anything travel related, and loves looking at
maps and hunting for countries. He likes to know what countries are in which continent, etc.
He also is figuring out tornadoes, hurricanes, and other disasters. Funny - that's what happens when they
can read the news. Leo will now read the Sports section of the newspaper (this happened on a plane on
the way back from California this summer). Sydney was reading the front page, not understanding
anything. All 4 of us were reading sections. I thought, WOW. We've transitioned.
And speaking of transitions, I began my job today as a preschool teacher - my 2nd year. This year I have
20 hours. Sydney began kindergarten. My husband had work per usual. We all had places to go this
morning. Our own separate lives with our own goals. Scary, exciting, and fun, all at the same time. Life
goes by so fast. I told a friend recently that it was quite disconcerting how time went by so fast now that
I'm in the 40s (41). My friend said:
October 4th, 2006 (2 weeks shy of 8th birthday)
So I wrote before that I worry about soccer. I still worry, but I’m happy to report that Leo is doing great! He is
right in the middle when I compare the other children. It’s so interesting – he’s the tallest kid on his team by far
and has the largest head (he must wear an adult baseball cap). Too funny! His size can be an advantage if he
continues to improve his understanding of the game. Just being in the right place at the right time will help
deflect the ball or other kids having to go around him. He’s a slower runner and is pretty fatigued when we get
home, but seems full of energy while we are there at practice and at games. He scored his first goal of the
season last Saturday. I couldn’t believe it. I’m actually happy that I didn’t see it in person (I was at Sydney’s
game, divide and conquer), as I didn’t have sunglasses on and I might have seemed a bit crazy. He actually
received a pass from another player, aimed it at the goal, and kicked it in. He was fairly close to the goal, but
Every time I see him on the field I just can’t believe it. It’s so surreal. I am very proud of him because he has
such drive, he’s overcome so many sensory issues to get to a point that he can play. He’ll squint a bit when
lots of kids are scrunched together trying to kick the ball, but he remains there and tries to kick it too. The best
part is that he loves it! I can “see” him thinking – he’s negotiating the ball down the field attempting to multi-task
by looking at where the other players are. Tough! He’s not great at it, but again he’s like all the kids. He’ll kick
it so hard, sometimes with really bad aim – I love it! It’ll be interesting to see how this improves (or doesn’t). I
know I couldn’t do it!
Everything else is quiet – Leo reports he’s talked out of turn just 3 or 4 times and thinks he’s better than in 1st
grade. We’ll see during conferences. I am one of the chaperones for next week’s field trip, so I’m sure I’ll have
a much better idea of how the class is doing, the class “personality”, since this will be my first glimpse. I can’t
believe how I put up with the mommy politics in order to volunteer for the few opportunities in 2nd grade – what I
do for Leo he’ll never know! And poor Sydney, I signed up for nothing.
He's been squinting a lot while at school because of fall allergies - it slowly gets better at home. I've been
clearing him at home using NAET, but it only holds a few days - it's been tough to get to our Bioset person. I'm
hoping to put a jar of water into his classroom to attempt to catch the particular allergen (pollen, cleaning stuff,
who knows), that's bothering him. It never ends - but the good news is that this is the first year where he is
rarely affected by fatigue due to Bioset (it's the only thing we've done differently).
So there ya go!
Look Out, Mom's Loosin' It
November 14, 2006 (8yrs 1 month)
Leo had a great birthday (10/15). His father and I didn’t even have to speak about what was going on inside our minds.
We are so proud of him! Now that he’s 8, we’ve graduated to the small party of good friends. Phew! I sat back and
admired his friends. And they are good friends! Not just one, my only hope for him at one point, but several. They are
complex, well-rounded kids that are each different in their own right. His hard work is never forgotten. Every day I
remember where we came from. It’s hard to believe that just 6 years ago he was officially diagnosed with PDD-NOS
and just 2 years ago he was therapy-free going to typical kindergarten.
Leo continues to enjoy school. He still much prefers his 1st Grade teacher, even after 3 months. I’d have to agree. She’s
friendly and funny, but not warm. Does that even make sense? On his birthday we brought in Yankee cups full of fresh
fruit. Yes, I’m “one of those moms”, those fruit bearing moms that Kristina Chew references on Autismland. Ha ha! Here
are a few examples of her lack of warmth and enthusiasm. Is she burned out? Has she lost that lovin’ feeling? You
As snack time was approaching, Mrs. P said to Leo, “well, I guess we can do your birthday now to get it over with”. She
also sent the snack trays home with Leo on the bus after I sent a note saying I’d pick them up. She said to Leo “I’m tired
of them being in the classroom”.
During a field trip to a beach, not once in the 6 hour span did I see her take joy in seeing the children discover new
things. “Hey look what I found Mrs. P!” was rarely said. They got her number. Of course they all circled like flies around
me and the other chaperone moms on the trip. With wonder, they all screamed, giggled, and ran around with
excitement. Some had never seen a jelly fish or a crab, let alone hold one.
Many talks later, I have to believe that Leo is telling me the truth – her words aren’t hurtful. “I’m fine, Mom. I don’t care,
Mom.” And then it’s the old catch 22, should I worry it DOESN’T bother him? Or maybe it does but he’s concealing it?
He’s gotten quite good at acting these days....
R>He likes Mrs. P but doesn’t LOVE her like his old teacher. He’s happy. I have to believe him. I told him we have
options, but he declined all of them. I’m going to “say something” during the conference on Friday, but I’m not exactly
sure what. I want to scream “look lady, hundreds of thousands of dollars, countless hours later, Leo has excellent self-
esteem and confidence . If you fuck it up because you can’t muster a fake “happy birthday”, your dead”. I know I’m evil!
Today I felt those panicky old feelings creep up again as I saw Leo’s report card lying in his home folder. My head was
swimming, the vacation is over. I started making plans to get his old ABA team back in my head. I began practicing my
spiel for the kids and the moms why Leo is no longer free for play dates and now needs a shadow again. I began
practicing my 2nd grade definition of Autism. I felt cold. I finally opened it and I could barely see the print. I was so
freaked out! Finally, there it was parked under the heading “Personal Development”. It jumped out like an old friend
does. Self Control. And next to it a -. A minus which means “needs improvement, not where it should be”. Nothing else
noteworthy, just that. I should be throwing Leo a party. Handwriting, reading, math, everything else with a positive mark.
No need for what I was thinking. I’m the worst mommy in the world for thinking like that. I suspect it’s the same challenge
as 1st grade – it’s the calling out, talking out of turn like last year. And thus it begins, the agonizing countdown till Friday
when I have my parent/teacher conference.
Same thing, different year and teacher. Will she realize that Leo is different? Will it make a difference? What will her
version of the executive functioning deficit be? What will Self Control mean to Mrs. P? Will she guess he has a
disability? Will the jig be up and he’ll be treated like a toddler?
We’ve had quite a few days off due to professional days and holidays. Leo prefers going to school instead of being
home those days. Weird? I don’t know. For a child that likes routine and likes seeing his best friend in class rather than
staying home, unstructured, with his little sister....sounds predictable. He was a little bored, whiny, and irritable. He
relishes his weekends which is pretty much the same thing, other than the fact that Dad is home too. It does bother me
and makes me question his schedule.
Leo’s little sister swallowed her first pill, a B vitamin. Still a challenging task for him. What I loved was his response. He
came into the kitchen and watched Sydney and me jumping up and down. He looked at her and smiled while watching
her “moment”. A few minutes later, I offered that he could try swallowing pills now if he wanted to, and he declined. He
said “No....I’m just a little jealous, that’s all”.
What a big kid – he signed for a UPS box.
I know I’ve jumped around a bit, but that’s how it is for today. Lot’s of stuff floating around in my head aching to get out.
Stay tuned – only 42 hours until the conference!
Good Things to Remember While Waiting 11/16/06 - (repeated on blog FYI)
Leo spontaneously summarized his standing in class the other day during dinner. Dinner, the 3 of us, happens each nite around 5pm. Dad comes
home later, round 2 for them - some fruit, perhaps a little dessert, and daily supplements mixed in yogurt. Anyway, he began sharing how he admired
his new friend Jack that sits next to him in class. We've never had Jack before, and so I had no preconceived ideas about him. Leo began saying he's
"the smartest" kid in class, giving some examples. Surprised, I asked him to define "smart", and how he felt about that. Leo said Jack knows pretty
much all the answers, reads and writes really well, and is excellent in math facts. I could tell he was really impressed, but not envious. I asked what he
thought about himself. Did he feel he was doing well? He said he thought he too was "one of the best kids" but not "THE best" in class.
His awareness astounds me. He's figured this all out on his own - that in a class how people measure up and how teachers and other kids respond to
it. I've never asked about this. I've never wanted to fuel any competition. I've only focused on how HE feels about himself and his accomplishments,
focusing on trying your best, and reminding him that each person is different and good at different things. And when he's sound arrogant at his
natural academic ability, I remind him about humility, showing-off and the consequences, and other stuff like that. And, that we all have our challenges
like his talking out-of-turn. And mine is yelling!
Leo also notices how some kids don't try their best. Some goof-off more than others, and some get in trouble more than others. He's got everyone's
number in his class, or at least those that sit at his table. He even gets irritated by his best friend because he pretends to read his books from his
browsing box during reading time. Leo said he always "really reads" because he wants to get better and do a good book report afterwards.
Leo is no saint - he shared this morning how he and his friend sneak past the hall monitors and go through a different door to get to their bus early.
They make a game of it and see who gets there first. I like that he knows the system at school and finds ways around it, even when it's breaking a
rule. Love it!
Okay, back to obsessing....And why do I obsess? I must monitor Leo's progress to see if he needs some type of servies again. I have to be realistic -
something may crop up that is disability related that needs support. It never ends!
29 hours left until my Parent/Teacher Conference. I still have no clue what I'm going to say regarding her lack of encouragement. I may point out that
I've noticed his writing is subpar to what I saw day after day in 1st grade. He does just enough to get by. Leo was so inspired last year! He'd write on
and on, and he was one of the top writers in his class. His work was often the example for class - embarrassing him by reading his work to the whole
class. As you can guess, I relished the part about being embarrassed the best! Those emotions, indicating he gets what's going on around him,
interpreting them accurately. What more could I ask for?
I'd have to guess at this point she still doesn't know him - has no idea what he's capable of. I don't really know how detailed they go when a teacher
passes info on to the next. That's a lot of stuff to read for 22 kids, but hey I think it's important. Speeds up the learning curve, and sure, it may give
impressions that may not benefit the child.
Sydney's conference for kindergarten is right after Leo's. I hope I can be present enough for that to be productive. I want to be there for her, and
really get a feel for how she's doing and if there's an issue.
November 17: 2nd Grade Conference
So I finally made it into the classroom with my old friend anxiety, my empty stomach, and my husband for a guest appearance. Our
2nd grade Conference day finally arrived! 1:45pm seemed like forever to come. Mrs. P got right to it by showing us Leo's journal -
answering the question about Self Control. I noticed right away she gave us no eye contact. No eye contact. Of course this made
me nervous as hell. Later, I realized it's her personality - maybe she's bit shy. Maybe she's been beaten down by parents over the
years. Who knows.
She had asked the kids the question "What do you think your parents will hear about you during your conference? My first thought
was how this could be a bit stressful for the kids, making report cards more important than they should be when they are only in 2nd
Leo's response was something like 'I think I am a good student, that I like math and reading a lot, but that I need more self controll'.
Mispelling included, just like his mom, ha ha. I'm so proud! It turns out that Self Control with Leo is "blurting out" comments due to
excitement about a topic. More than the average kid in class. So that's my answer. Mrs. P has to "remind him" to keep his thoughts in
his mind. He doesn't finish her sentences or answer questions when not called upon like last year in 1st grade. In my eyes, it's a
To my relief Mrs. P gets Leo, but doesn't "get" him, just yet anyway. I know it's been only 3 months. As you may know or not know
about me, I'm quite a linnear thinker, and to me, people (parents and educators in particular) are either natural behaviorists or not.
Does one see cause and effect effortlessly and naturally? Does one see where the root of a behavior comes from?
Mrs. P is not a natural (more on this when I write about another topic - the other ASD kids in 2nd grade...) She sees the surface and
addresses just that. Kind of like a pediatrician now that I think of it. Treating symptoms rather than the cause. As a teacher friend
pointed out, you can't teach someone how to be a good teacher, you either "have it" or you don't.
I am happy that Self Control isn't debilitating for Leo in 2nd grade. It's not keeping him from learning. It may be a slightly irritating to
others, but hey, a far cry from what it could be. I'm happy that Leo is aware of his issue, is not embarrassed by it, and doesn't keep
him from having a fairly "normal" day as a 2nd grader.
Question 2; Leo's writing is mediocre. Specifically "Writes with elaboration and includes details" got himself a "Some progress noted".
How did he go from being one of the best writers last year to just mediocre? Not that I'm surprised. I was surprised last year that he
did so well in this famed "imagination" category for ASD. I realized that Mrs. P gives more open writing assignments, and last year's
teacher gave more structure and prompts. Actually, Mrs. P let us read one story about Leo's experience on a beach. It was so good!
I then realized it was good because she referenced using their senses. Duh, lady!
Mrs. P.said she dislikes the more structured style of teaching writing. She thinks 2nd grade is about getting them more comfortable
about writing, and that it's a review year - gearing up for 3rd grade, the CT Mastery Test, and so on. This isn't my area of expertise
at all - 2nd grade curriculum, but my instinct tells me that, at 7 and 8 years old, wouldn't providing some structure help build comfort
in writing? Maybe one of my writer readers can answer that question for me.
All in all, she said he's a nice boy, compliant and respectful. My husband asked how he was with social interactions (I was too freaked
to ask). She said she thought he was fine, that she doesn't get much opportunity for observation since they shortened recess. She
doesn't see them at the specials or lunch - she picks them up and drops them off so she can have her 20 minutes of peace. Boy am I
happy that I did all that volunteering last year - I was there 2 times a week for recess, lunch, and library time. I got such a good feel
about the social groups and dynamics, and how everyone was doing. And it was very educational to see what 2nd graders are like,
and that Leo is just one of them - just eating a GFCF lunch!
I didn't get a chance to process what had happened - that yet another year was turning out well, that our issues are manageable and
not problematic. That Leo and his teacher are happy. I didn't get an opportunity to say how her lack of enthusiasm isn't good for Leo.
We ran out of time, and I decided to not make an issue of it - I saw it's her personality. She's just not a dynamic person. She "phones
in", as a fellow parent said.
My husband said he'll have more teachers like this than not, and he has to get used to someone like that, that's not going to be a
cheerleader like last years teacher or us, or his former team. We realized again, after combing thru the curriculum with Mrs. P, that
the 2nd grade program is fantastic - all 4 teachers basically do the same thing. The school is fantastic, and he's happy knowing just
about everyone there. Not to sound like an optimist or anything! So we'll see how it goes - I may say something later.
We rushed out of there down the hall to the Kindergarten room to meet Sydney's teacher. We had only about 10 minutes left. Again,
boy king is the priority. She showed us an empty index card, and said "See, I have nothing to say. No problems at all!". She then
went on to say how she's a wonderful student and person. She's enthusiastic, enjoys all aspects of school. A good girl. I got teary
when I heard that, but I think I was beginning to feel relief from Leo's meeting. Sydney's teacher also brought up the fact that she and
Leo are so connected. It's rare, she said. They love seeing each other during the day, passing each other. Waving hi, giving hi-fives.
Sydney always tells her teacher "I saw my brother! I saw my brother!". Her teacher knows Leo. She didn't have him, but knows him
since the kindergarten classes have recess together. And of course, she is in the dark about his past. I feel so lucky they have each
|Tuesday, November 28, 2006
Everyday Life in 2nd Grade
So Leo, Sydney, and I are in the car driving home from Sydney's Bioset appointment. She decides to call Dad on the cell
phone. She crosses her legs, and dials very professionally and gets him live on the phone. She's gabbing away about
her day (she's 5 1/2), talking very "grown up". Leo says, "Sydney loves to act like a big girl doesn't she Mom? She cracks
me up. She has her 'big girl' voice on." And I nod and smile in agreement (I am driving after all). Leo shakes his head and
chuckles "I certainly know my sister".
Love that Theory Of Mind working!
In the car on the way to school (late again), I overhear Leo and Sydney talking about Gary in class, how he gets mad all
the time. Apparently Gary (yes, he has an IEP)screams out loud at classmates on occasion, for different things. I say that
I like Gary a lot, and that he's your friend, and so what if he has things to work on? (talk about reverse discrimination).
That we ALL have stuff - Leo's talking out of turn, I have my temper, Sydney her her whining, etc. Leo says "I know Mom,
I like him too, he's my friend. Jeremy tells me not to like Gary, but I do. He's my Secret Friend." I respond by saying all the
right things - how no one else is the boss of who you like, and how you need to stand up for your friends. Leo says" I
know Mom, I didn't do what Jeremy said. Jeremy knows that Gary is my friend. I just don't talk about it."
Love that social judgement working!
Leo has never told me or his Dad about any girls he may have crushes on at school. Not in Kindergarten or in 1st Grade
either. He always gets very defensive and says he doesn't want to talk about it, that it's private. Recently I asked (I can't
help myself!), saying, "well, if you HAD to choose a girl to like, who would it be? I promise I won't talk about it or tease
you, nor tell anyone else." He held firm. I said, "Well, have you told anyone?" Leo told his best friend, and said his friend
will never tell.
Love that he keeps secrets and has a best friend! More social judgement, enriching relationships.
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|November 28, 2006 (8 years 1 month)
I had a VERY interesting day yesterday. Leo had his 1st grade "archnemisis" over for a play date!
Could it be? Charlie (the bus taunter/teaser?) from my 1/27/06 entry on
Natch, I barely slept the night before because I was consumed by the fact that the boy that gave my son
so much grief will be over! And I was nervous about handling him. The one time he was over, I failed
miserably at managing him (in my defense the parents didn't give me a heads up, can we say PID??)
He broke some toys, crashed Leo's bike into a tree after riding over my pumpkin vines, dumped every
toy bin over, and scared Sydney on purpose among other things. How much can happen in one play
date? A LOT.
Let me just say it. IT WENT WELL. SUCCESS AND NO STRESS. Woohoo! I don't know if it's going to
happen often, but they do like each other and had some fun.
And now for some background on this duo...This boy Charlie and Leo were on "different teams" and "not
friends" practically all last year, after their friendship quickly fizzled. Leo was quickly turned off by his
very active behavior and that he got into "trouble" so much at school. Later on in the year Charlie and a
mid-year transfer student Harrison became fast friends. Of course, because life is complicated, Charlie
and Harrison ride the same bus and live on the same road.
So recently, Harrison didn't ride the bus for a couple of days. Charlie and Leo sat together, and I gather
they "discovered" each other. They are not in the same 2nd grade class this year, although Harrison
and Leo are. They both began asking for playdates, which terrified me. I knew from last year that
Charlie was on different medication and doing well with listening and controlling unacceptable behavior.
I'm guessing he's ADHD. So because I'd seen able to observe him, AND I really wanted success,
especially with a neighbor, I wanted to make this work (like I have anything to do with it).
They didn't quite know what to do with each other for the first 20 minutes. I thought "Oh God!!!".
Charlie kept walking around and around and around while Leo was patiently following him asking him if
he'd like to do X, Y, or Z. Finally, with some suggestions from me, they began playing outside. Natch,
Charlie found the only dangerous thing out there, a fallen tree that hadn't quite fallen completely (yes,
danger danger)and decided to hang from it, and in 5 minutes, convince Sydney to climb it. Images of
dead or trapped kids danced in my head. Yes, the part about keeping my eye on him the entire time...I
should've kept my plan intact. But other than that, they jumped on the tramp and ran around finding
I was pretty proud of Charlie - he has learned to listen and had some self-control. He also considered
Leo's feelings and preferences. Not much eye contact, actually less than last year. Towards the end, I
let them play X-Box (whatever that is). It involves the T.V. is all I know.
I couldn't believe it - I had prepared myself for anything - I had all my chores done including dinner. I
had prepped Sydney that I'd have no time with her as I'd be occupied with the boys' safety. And it all
turned out well. His mom came to pick up, and I told her what a wonderful kid he is, and that they had to
refamiliarize themselves, but after that warmup period, they got along. Clearly they don't have too much
in common, but both had fun. I was so proud of Leo - he didn't mention football, soccer, or any other
sports games to do since he knew Charlie wouldn't be interested.
His mom has never mentioned Charlie's differences, nor have I mentioned anything about Charlie's
history with Leo. I threw out several openings, but she didn't bite. Clearly she doesn't want to share
with me, which is understandable. She has no idea what people say about her son, and I know he
doesn't get invited to many birthday parties, etc, because he's a behavior problem. The mom doesn't
stay at parties to facilitate, which makes it even harder for other parents to learn about Charlie and keep
him from becoming even more unpopular.
So that's that story.
Harrison, the other little boy that is Charlie's best pal, is a good friend of Leo's too. We even went
trick-or-treating with him and his family. Anyway, Leo and Harrison got into an argument, so for about a
week "they weren't friends". Again, it began as a bus issue. Every day, Harrison and Leo would race to
the bus, hoping to be first in line. Many times Harrison would get there first, but if Leo did, Harrison
would elbow his way ahead of Leo, pushing him out of the way so Leo would be second. Leo told
Harrison every day to stop it, that he didn't like it. But Harrison ignored him and remained 1st in line.
So at the end of the week, Leo told me about it, and that he was really frustrated because Harrison
wouldn't listen. I said that friends don't treat each other like that. That friendship is about respecting
each other, etc. With Leo always in control, I asked him what he thought he could do to solve the
problem. Talking to Harrison wasn't working. What could he do now?
He didn't have any ideas, and so I suggested that he "ignore" Harrison, or tell him that he's not being a
friend, and until he knocks it off with the bus line, he's not going to treat him as a friend either. That he
doesn't deserve Leo's friendship. Let me clarify, I was totally winging it! I knew I should keep Leo in
control always, but that's all I knew to do.
The next day, Leo came home and said he "tried to ignore him, but it was just too hard mom." I can't
blame the kid, he's in his class, 2 desks down. The next day after that, he managed to ignore him
enough for Harrison to get the idea. And as how things work, Harrison decided to ignore Leo too. This
went on for a few days, and then they finally "forgave" eachother, and are now "friends again."
That night, I asked Leo if they watched T.V. AGAIN at school. This drives me crazy. Whenever the
weather is bad or something is going on in the gym, out comes the VCR. Of course, the kids love it. I
asked Leo what they watched, and he said lately it's been "Reading Rainbow". I had no recollection.
Leo said we had watched it at home a few times. Still didn't ring a bell - I normally only record PBS type
shows, and when he was into it, Power Rangers. Leo said, "Let me sing the song for you." And he
begins to sing in a lovely little boy voice, so sweet and innocent. No embarrassment. I enjoyed every
second of it, also relishing how creative he was in trying to jog my memory. "NOW do you remember
Mom?" And I did.
Sunday, November 19, 2006 (8 yrs 1 month)
On Bad Days Good Things Happen
So Leo has been cranky boy ALL day. And days are long when there's no activities and no school, right? I've
been waiting for 7:30pm since 9am this morning.
Anyway, he told us a story about Sydney. She had fallen down and hurt herself at a friend's house. He said that
she hadn't "really" hurt herself since she (demonstrating) took two tiny steps than put herself on the ground. I also
liked that he thought it was funny how she devised this, and how he gets so much entertainment out of her.
Later at dinner, Sydney said she liked the song that was on (Sirius Satellite Radio, Coffee House station). He
rolled his eyes and said "all the songs on the radio are about girlfriends and love and stuff. Gross". My husband
said that's such an 8 year old response, and went on to explain how people often write songs about emotions,
and that love his such a popular one.
Monday, January 01, 2007
Is Rudolph Real? (double post from blog)
So we've had quite a Zen holiday. Usually, we go to California for holiday break. This means I must SSS
(shop, ship, and stress) a couple weeks earlier. We also do Hanuka. House-sitters, mild climate clothing,
and other logistics are a must but worth it. Last year Leo asked "Why don't we ever have Christmas in
OUR house?" So I jumped on it.
Leo had begun questioning the validity of Santa just after his birthday (he received a globe and
because he's a visual learner, he really "got" the concept of earth's rotation and our place in the solar
system). Out of the blue, he states, "Hey Mom, I still believe in Santa, but I don't believe in Rudolph." Off
I went with an Academy performance, chalking everying up to magic. He looked wearily at me, uncertain,
but didn't bring it up again until about a week before the big day. Looking at me across the breakfast
table, eating cereal (natch, GFCF organic), he says "Hey Mom, I think I know what I want to ask Santa
for." Of course I'm thinking about all the gifts already purchased. I asked what, and he said "I want two
things, first a real baseball bat made of wood that real players use. And second, a picture of the real
Rudolph." He stares at me intently for my reaction, almost challenging me. I didn't know what to do! But
then I began a story about how the real Rudolph's photograph is top secret, no one has seen him, just
like the actual location of Santa's home and workshop. I told Leo he could ask, but Santa may say no.
He seemed to buy it, mostly.
Leo had apparently taken notice of my several conversations about pianos, as Santa brought us a
Casio keyboard. Right after he woke up Christmas morning, he quickly ran back upstairs to tell me that
Santa brought ME a piano, when in fact it was for them! Of course they couldn't care less about it, until
two days later they became infatuated with all the sounds and the Bastian piano lesson guide. Now they
both fight over the piano! And of course this is just the first week, so we'll see! And to my delight, Leo
seems to have that ASD skill, an "ear" for music.
Surprisingly, we didn't miss CA as much as anticipated. Of course I spent about 4 hours on the phone
Christmas day, and did have feelings of regret, but they were brief and infrequent. A week at home with
just the 4 of us, well, it was unprecedented.
During the holidays, I take advantage of the time home (or at my sister's in CA)to do an annual detox for
Leo. Because of his impaired GI and immune system, Leo cannot regulate organic and inorganic
substances on his own efficiently, common with ASD, Down Syndrome, and other neurological disorders.
Because of this, substances build up and eventually have a behavioral effect on Leo (spaciness, lack of
focus, stims come back, lethargy, lack of curiousity). The test of time (4 years) has demonstrated that an
annual detox helps minimize toxic load and build-up from the past year. And sure enough, Leo's dark
circles have returned under his eyes (mild, but I can tell), the rigidity and focus on his preferred activities
(football, soccer)has returned.
Leo is definitely an environmental kid (genes too, but), and this time of year we are reminded when
these symptoms appear that yes, he has Autism, and yes, we must help him the best we can so he can
feel his best. There are many days that go by that aren't Autism days. Just days with Leo, his
uniqueness and all.
This time around, I'm attempting a different homeopathic protocol, and in total this should take about 3
months. I'm also doing this protocol right along with him so I can feel what he feels as much as a
different person can. I also need this detox as well. We're aiming to go slowly with Leo so he would feel
mostly well the entire time, and thus not affect regular life and school. As always with detox, there is a
regression, a time where you really don't feel well since toxins are coming out of the tissues and organs
and entering the circulatory system and eventually the lymphatic system and finally out. The pay-off in
the end is renewed focus, energy, no dark circles, and increased health (details depending on the
So that's that!
School update: Nothing too exciting to report although to my surprise, he's no longer playing with The
Best Friend every day at recess. This has been going on since Kindergarten, where they first met. They
had different teachers for 1st grade, but preferred to play together at recess and their friendship
continued. They are reunited again this year for 2nd grade.
Now, his Best Pal is really into Star Wars, something that Leo doesn't care about much. He also thinks
his friend is "annoying about it", and whips out imaginary light sabers whenever possible, including
music class and gym whenever the opportunity arises. He is also turned off by the fact that the Best
Friend gets into trouble "a lot" in class, distracting Leo when he's trying to read or listen (both need
undivided attention since he's not a natural multi-tasker).
To date, Leo prefers to play baseball with other kids in his class, along with one of the gym teachers
pitching. Funny, how Leo works. He watched for the first couple of months, and finally had the courage
to try it and risk failure in front of the entire 2nd grade class. He's still quite the perfectionist and now I
see a competitive streak when it comes to sports. He really WANTS to be good.
|Thursday, February 01, 2007
Funny Things Leo Says
While doing homework, Leo says, "Did you know you don't need the bottom of a pencil
sharpener? You can still use it. It's only for the scraps. The top part is the most important."
During a discussion about a friend in class that has behavior issues, Leo protectively said to
me "Gary's issues are private. It doesn't matter what they are. He's my friend." Good for him!
We've been listening to a new music station in the kitchen. He noticed before anyone else that
they were repeating a song, and how many times. The irony, noticing when somebody ELSE
Self Control is one of Leo's "things he's working on". Specifically, monitoring his thoughts so he
doesn't say them out loud at the wrong time. He'll blurt out the answer while everyone else raises
their hands. So one day he and his sister were talking about the intercom and the
announcements at school. Leo confessed that sometimes they make mistakes, so he'll quietly
correct the name to himself.
I picked Leo up at a play date recently. Sydney immediately ran out into the woods to join the
boys while I was having a chat with the mom. It was dusk, and they "got lost". Leo came to
Sydney's rescue by holding her hand when she was nervous AND carried her over a stream
because she was too afraid to jump over it like the boys did.
Over a weekend with nothing to do, Leo found a flashlight and started looking in dark places like
the whole in the kitchen where the tennis balls always goes. He spent about a half hour doing
this. A far cry from the old days when he'd stare into a flash light and he'd stim like crazy over
them in general. I recall the days when we just couldn't have them in the house!
I like sitting in between my Dad and my sister at the movies (between was the spelling word for
Our holiday card had several photos of the kids, one being a picture of Leo's face but he was in
the bath. When the card was complimented by a friend, he said the photo on the new years card
was so embarrassing because of the bath. It never even occured to me that it would. He's
"Sydney, she's just being....an ASSHOLE!"
After a play date, Leo said "I didn't have fun with Cameron today, it was so frustrating." It didn't
seem like a match to me (different interests). I was glad he felt the same way!
Sunday, March 11, 2007 (8 yrs 5 months)
The Secret Lives of our ASD Mainstreamed Kids
There are 3 kids with an Autism Spectrum Disorder in Leo's 2nd grade mainstreamed public classroom. Leo,
Aspie Girl, and PDD Boy. They sound like superheroes, don't they? Three out of 22 kids. This, my friends, is
the new normal. This doesn't include the other proud owners of IEPs for other disorders or delays.
Leo's teacher, his peers, and the parents do not know about his Autism label.
The para that allegedly assists Aspie Girl doesn't know either. The majority of parents believe paras are
there to help the teacher, like an assistant teacher. They must believe our district "gave" our class a para out
of kindness or something. Like there's money for THAT. Moms look at it like positive status. An extra that a
fellow mom may lose out on. "My class doesn't have a para this year" a fellow mom says gloomily, while
another mom perks up to say how wonderful "her" para is, and how she helps her son all the time. What
about OUR kids? The reason they are there?
Leo reports how the para is the one that checks his weekly sentences. How is it that I know her handwriting
and not the teachers? Leo reports the para checks the mail, makes copies, doing all that assistant stuff while
Aspie Girl loses out on any natural opportunities for learning.
Naturally, Aspie Girl is a bright girl and friendly. She has several friends that I see her play with during
recess. Aspie Girl, according to Leo, is a "help needed" kid, a kid that "needs extra help". She makes her
daily trip down to the Assisted Learning Room and attendes "lunch bunch" with other help needed kids in 2nd
I assume Aspie Girl's program is crappy, because not once have I seen the para do anything for her, other
than "watch her", like glorified babysitting. No facilitation, no explanations, during recess or at a day long field
During this beach field trip, the kids gathered around a naturalist that was holding up sea creatures while
giving a talk on them. I see Aspie Girl off to the side, twirling her long piano fingers into the sand, not able to
listen to the talk. I could only listen through her. I heard the wind, the cars, the other groups that were
nearby. All distractions that kept her from learning.
Her para was listening and watching other kids, occasionally glancing towards Aspie Girl, making sure she
didn't "wander off". In my mind, I dream I slap her around, shouting at the para and the teacher. I order them
to move Aspie Girl next to the naturalist so she could see and hear the talk. So she could learn. After all, why
did she take the 45 minute bus ride? She could've twirled her fingers in the sand at school.
What will the para say at her next IEP? Aspie Girl is a good student. She's doing well. Of course, because
she is not a behavior problem. Detached doesn't cause problems for other students or for the teacher? Will
the para say she enjoyed the field trip? Would the para have behaved differently if she knew I was a special
I know about PDD Boy too. I could just tell, and then a mutual mom friend had mentioned it in conversation.
We've never been in the same class until this year. I thought here's my chance to get to know the family and
see what happens. Maybe I'll have a friend!
PDD Boy's mom doesn't know I know. He is "doing well" too. He is "doing so well" that he doesn't need a
para! Surprise! And what did HE do during the talk with the naturalist? He was next to the naturalist, a good
spot. Phew, I thought. He began talking to himself, humming a bit when the naturalist was talking. The
teacher quickly removed him and put him towards the back of the group since he was distracting the
naturalist. Oh good, so both kids are not learning. Nice.
We've gotten together with PDD Boy, a play date at his house. I hope one day we can talk about their shared
label. I don't know the mom very well, but my hope is that one day I can trust her and she can trust me. She's
kind of quiet, and when I put out feelers, they were rejected. I use my nephews as the stories, and I also
openly share that Leo had a speech delay. No luck.
I feel like a bit of an ass, but I don't know what else to do. I can't disclose Leo's label without knowing what I'm
getting into. The mom hasn't been to our local support group. That was my hope. She doesn't advocate for
him overtly. I think she does the school services and that's it. Fortunately, our district has an excellent ABA
provider now. She could get great services. I wish I could talk to her! I wish I could tell her how the teacher is
handling his issues (or not handling them I should say). I'll have PDD Boy over soon - Leo really likes him
and his twin. I really want Leo to have several friends on the spectrum. They'll need each other.
I feel for PDD Boy. I envision him in a couple excellent social skills groups I know of, with some terrific children
that would really challenge him. But Leo comes first.
Quote of the Day (8 yrs, 5 months)
Leo completed his first ever biography book report. He chose Hank Aaron. It was sports, and
of course I loved the fact that discrimination was a part of it! I can't believe he's old enough for
something like that!
When picking out things to report about Hank Aaron's early life, he chose the fact that Hank's
dad built them a house out of old boards from a torn-down house. I said that was an excellent
idea. Hank's house didn't have plumbing or heat either. I told Leo he could add those facts
too, further showing how he grew up poor. Leo looked at me impatiently and said, "Mom! I
already said the house was made of old boards. They can INFER that he grew up poor!"
I have never used that word before with him. That word! That word has been written hundreds
of times all over IEPs and other therapy materials. And now he's giving me his lesson right
back to me. Infer they can, Leo. And of course I got all teary!
Saturday, March 31, 2007
Tae Kwon Do, The Bittersweet End To An Era
Today is Saturday and we are not at the Tae Kwon Do studio. Kind of weird. I'm still hardwired to hunt
down his pants and shirt and belt. Today, I just had to make coffee and fix breakfast.
Leo has been taking Tae Kwon Do for 4 years. Like many parents, we used it for PT and OT reasons.
I remember those first few times he went. I was so anxious after the many failed attempts at utilizing
gymnastics and swimming, I passed the chore to Dad. After all, Dad in theory was in charge of gross
Those first couple of months were tough, like everything new we tried. Leo was SOOHH
overstimulated by the yelling (AYE!), the noise level can get very high and unanticipated. Mirrors
everywhere, very confusing. Kids are moving around all directions. But we kept at it, actually HE kept
at it. We saw that he really wanted to do it (he must have thought it was way easier than anything else
we've offered up to this point).
Eventually he settled in and fell in love with this rule-bound individual sport.
Mom and Dad fell in love with the philosophy; To build a more peaceful world. TKD focuses on the
positive aspects of an individual's personality: Respect, Courtesy, Goodness, Trustworthiness,
Loyalty, Humility, Courage, Patience, Integrity, Perseverance (ha yeah, the irony), Self-control, an
Indomitable Spirit and a sense of responsibility to help and respect all forms of life.
We fought so hard to find money to pay for it. We asked our district to pay for it too (one year they
Last year Leo began losing interest. His interest in team sports like soccer took over. He began losing
enthusiasm for TKD. Sure, when we were there he enjoyed himself, but he began to complain about
going. We took a couple Saturdays off, thinking some away time may rejuvinate him. That lasted a
while. Getting a new belt.
The time had come to pay again for the year. Leo didn't want to renew, and talked about how he'd
miss his instructor and his friends. I too felt conflicted about ending TKD. After all, will Leo's rate of
development change (his coordination, his sensory integration). We sat down and talked about the
pros and cons, and decided not to go back. We also realized if we regretted this later we could always
join again. Leo was relieved to know he wouldn't have to start over with belts. He'd still be high red.
TKD made me feel safe. Letting go of the last piece of what I consider therapy is very difficult. I have
to let go and let go of Leo a bit. Let him make some of his own decisions. Let him choose to try
baseball this year even though I've already had bad dreams about that one (Leo getting hurt orfeeling
inadequate, becoming resensitized in his face).
I've sat down to write the TKD instructor a caring note, but I'm just not in a place to do it just yet.
So spring soccer and spring (gulp) baseball it is.
|Tuesday, April 03, 2007 (8 yrs 5 months)
Today and Friday
Today my close friend told me her son has autism.
Today I made a play date with a classmate of Leo's, PDD-Boy, for Wednesday.
Today was Passover and Leo thought it was cool hearing about the parting of the Red Sea.
Today the kids played the piano for Grandma.
Today I repainted blackboards (the kind used with erasers) for preschool.
Today I marveled at the fact that I'm a preschool teacher. There's that planning thing again!
Friday was Parent Teacher Conferences. I was shocked to learn that Leo and his class took a standardized test
for Reading called the Gates. I almost died when she pulled the booklet out of his folder. I first got angry, always
my first response. I thought they started standardized testing in 3rd grade for gods sake!I started to sweat, and
surmised the outcome quickly in my head. Leo didn't finish it on time, he got confused by the bubbles and such.
No problem, we'll open up an IEP, he'll qualify for untimed testing, we'll practice test taking skills, and take a deap
breath until 3rd grade metacognition.
None of what I predicted came true. But, Leo's teacher was a little concerned about his score - average, since his
skill level, according to her, was far better. Nothing to worry about, yeah right. I wonder what this will mean for the
future. Maybe spacial planning, organization, timing, or other executive functioning skills will become disabling? I'm
ready if that's the case. I say bring it! She said it's his first test, and not to be concerned. She just noted that she
was surprised. Okay then.
She also stated that some fine motor things are challenging for Leo. Example: they all made totem poles made of
paper towel rolls and cut-out shapes that require a long thin slit to be cut. The cutting was a challenge and it took
him a while to figure out the hole-poke-then-cut trick. Everything else, fine. Then she said: He is ready for 3rd
grade. Say what?
Great handwriting, reading, and he has a large group of friends, one best friend, and most importantly he's very
happy. He can even do geometry - copy a 3 dimensional shape onto paper. Every week he surprises me since I
can link so much of the things he can do back to therapy goals. And this was a kid that couldn't copy a 2 block
imitation. We worked so hard on that hand-over-hand for years (yogurt cups, crayons, matchboxes, anything he
Tuesday, May 08, 2007 (8 yrs 7 months)
The Autism Most People Can't See
I can finally sit down and do an update. I have so much reading to catch up on too!
Instead of blogging, I've been using my nights to catch up from the days and finish some last minute
knitting projects for birthdays and new babies. I enjoy the work, it relaxes me and in theory keeps my
hands from late night snacking! Spring has been beyond busy, more than Christmas/Hanuka. Since
multi-tasking isn't a natural state for me, I try to live a simple life. Unavoidable this time of year, so
knowing this I try to be positive and don't forget to enjoy every day. We were on vacation for spring
break, and again I found myself reflecting on the previous year, taking it all in. Not just for Leo, but for
Sydney and for Husband.
We arrived in the afternoon at a beach resort. So far so good - I barely give notice to what travel used to
be like. Guaranteed regression, health symptoms at the highest level, due to Leo simply being out of his
element plus lack of sleep and food changes. The stress of shipping food, talking to restaurants in
advance, finding Leo a place to sleep and have down time in the afternoon was critical to his wellness
just a few years ago. But this afternoon, Leo is the same as he always is.
The next day is Husband's birthday. Traditionally, his birthdays have always sucked. The actual day that
is. We celebrated before we left - Spiderman theme, and cute presents that the kids picked out.
Husband is in a good place - doing stuff "for him", he really likes his job (how many people can say
that?). But this day Leo crashed. Vacation caught up to him and for whatever reason, a virus,
sleep-deprivation, or climate change, or everything together, Leo became Autism Poster Boy (APB).
Unless you also have a child with Autism, you'll just observe a child that seems tired and a bit out-of-it.
Autism is something most people can't see. Leo isn't just "any kid" fatigued from the trip. His biology
becomes apparent only to a trained eye. Leo becomes very lethargic and spacey. As we are walking
around the resort, he loses spacial awareness - he walks in front of me and slows down, not noticing
he's in front of me. He starts walking "funny" by straightening out his knees first before touching the
ground as if he's doing self joint compression. I impatiently yell out REGULAR WALKING LEO without
even thinking, making Husband self-conscious. He does this with his arms too, as well as swings them
around side to side without awareness that people are around and almost hits them. He walks looking
down. Realizing what's going on, I look at his face to see dark circles.
Husband and I conference as we walk, and it dawns on us that Leo is APB. I quickly get angry and
frustrated, showing little empathy. I tell myself I must pull it together, and vacation will be "what it is", and
I should be grateful. I wonder if we should cancel our kayak trip, thinking Leo may not be up for it.
Husband takes on his old role of Protector, and tells me that I need to stop correcting him so much, that
obviously he's not feeling well. Husband reminds me that Leo is allowed to have a bad day - something
that's "my issue".
We walk to an outdoor restaurant and order food. I now begin clock watching, something I've had to do
less often now that Leo's blood sugar is much less sensitive. I wonder where I could buy a bag of chips
in case the food takes too long. I don't want Leo to become so out-of-it, that the whole day becomes a
day of Leo not feeling well. I get mad at myself for not carrying a snack in my bag like I used to. What
was I thinking?
Leo and Sydney see a basketball court next to the restaurant and decide to go on over to play while we
wait for the food. There are a couple of older boys playing. Leo typically would have asked to play.
Instead, Leo begins to play imaginary football within his internal world. In his mind, he picks teams and
what player he is, and uses real statistics to reenact a play. He does this stimming to pacify himself. He
doesn't even notice spatially where the basketball players are, and runs right into their play. I yell over,
and redirect him like I used to to the other end of the court.
To the casual observer, he looks like a kid running around the court.
Dinner finally comes, and Leo's lost all his manners. He chews giant mouth fulls of chicken Caesar salad
and fries, smacking away with the plate and napkin not in front of him. Husband and I squabble a bit,
both in bad moods because we are tired and because Leo isn't himself. I tell Leo that I'm sorry I'm so
grumpy, and that it's hard to see him not feel well. I tell husband I'm sorry his birthday was filled with
grumpiness and a kid not feeling well.
After a full night sleep and a belly full of omelette and hash browns (enzymes too, natch), Leo seems to
be himself again. APB is gone. I apologize to him for being so impatient, and remind him that he used to
ALWAYS feel that way, and so when it happens it's scary and hard for mom to switch gears. I tell him
again how proud I am that because of all his "extra help", hard work, and perseverance (the good kind
ha ha), he doesn't have very many of those days.
I smile as we walk through a parking lot because Leo notices the foreign license plates. We hold hands
and talk about his license plate book at home and how we have to remember to write these new ones
down. He loves them! I smile because he's memorized so many sports stats and now knows more than
Husband. I smile as Leo rattles off dozens of countries as he and Sydney walk around on a tiled world
map that's on the floor of a restaurant. The cashier looks up, impressed by his knowledge.
I smile at the fact that Leo eagerly agrees to try out kayaking, something he's never done. True, I am
also thinking about vestibular/proprioseptive instability in the kayak, topped by Leo's former fear of
death and drowning (this took 2 years of Aquatic OT). To my relief, he loves it. Husband enjoys seeing
me and Leo talking and working together as a team in the double kayak. Our day was one of those
great family days that'll we'll certainly remember.
Other things I found interesting on our trip:
We met a family where BOTH parents are pediatricians. The son, Leo's age, had sensory issues that I
immediately saw (sand, sea weed,etc). Here was Leo, bounding in the ocean Laborador style, while the
other boy watched. Here was I, talking about SI with the mom, a pediatrician. And I was telling her things
that she knew nothing about! She was very curious, since I shared just that Leo had/has SI too. I chose
not to say anything about Leo's dx since the family lived near us, and most likely we'd see again socially
- the irony! Here I thought I had an opportunity to share our unique outcome, as well as the fact that
Autism isn't a hopeless stereotype to pediatricians that usually are in the dark.
I smile as I watch Leo initiate a football catch with a few other boys his age while in the ocean. He is so
happy running around and chatting away about sports, Webkins, and other second grade things.
Later on, I look over and notice that all parents were reading at the same time. Husband was reading
Outside Mag and a trade journal. I was reading The China Study, my latest environmental book which I'll
be blogging about later.
And what were the peds reading? Madamoiselle and Esquire. I know it's vacation, but I found it very
interesting. Us parents are always at the helm of information rather than the medical community.
|Monday, June 11, 2007 (8 yrs 8 months)
Back in March, Leo decided he wanted to play baseball. In my town, it's quite unusual to have a boy that's
never played at his age. Of course they try T Ball and if they don't like it they move on. When Leo was T Ball
age we were light years away from doing it.
Since he no longer wanted to do Tae Kwon Do, I really wanted him to do some type of sport. I bravely said
"Yes", knowing we'd be yet again in uncharted territory, facing the ultimate challenge, a ball, a SMALL HARD
ball coming very fast towards Leo's face. I was very proud of him for wanting to try, knowing that most kids
would have some experience. I was mostly proud that he wanted to try something new.
For about a year or so Leo has been playing catch regularly - football, and baseball, with Dad. He's also been
playing some ball sports at school. Amazing to me that with his sensitivities he sought these things out. His
obsession with sports and statistics helps I'm sure. He practiced on his own, replaying real plays in his head,
almost every day after school as a decompression/transition activity.
The first few games were torture. Pure torture for old Mom here. Although this league is very laid-back and very
supportive, I truly felt for him. Here was Leo, this giant kid (single A since he's never played and the oldest
kid)that couldn't hit the damn ball. Not a surprise, the timing and the pitching machine really threw him. They
gave him extra chances in still no luck. He was the ONLY kid on his team (and the other) that just couldn't hit
the ball. He sat at the end of the bench, by himself, completely bummed but not giving up. I think what saved
him was that he could throw and catch well enough in his position on first base.I sat there, deer in the
headlights, wondering what I should say. Should I let him quit? At what point? On the drive home he said "I'm
upset but I'll survive Mom". I reminded him about how it took him a long time to overcome his fear of swimming,
but that he did overcome it and now LOVES to swim. The next game the coach brought a T-Ball thingy just for
him to practice with. Leo was a little put-off by it since no one else had to use it, but I reminded him that it
doesn't matter, and no one cares. The point is learning how to do it.
The next game he finally Leo "touched" the ball with the bat. Everything changed. I was crying behind my
sunglasses. Big smile from Leo. He did it! He couldn't hit it the rest of the game but it didn't matter.
After that game we stopped at the grocery store across the street for a treat to celebrate - Tofutti, natch.
Sydney, Leo, and I were getting in line when I saw a very familiar face in the aisle nearby. It was Amy! Leo's
former ABA Clinical Supervisor - the person that designed and implemented Leo's ABA programs. It was like
seeing family. She WAS like family for years. And I do miss our long conversations and our former closeness. I
was overjoyed to see her and I immediately told her that we just came from baseball practice. I squinted and
shook my head and she immediately got my message - those issues no longer keep him from playing a ball
Leo looked at Amy and said in an inquisitive voice, "Who are you?" noticing that I am super-friendly with this
person and Sydney knows her. We exchange looks and smiles, and quickly says "I'm Amy". He says he doesn't
know her. Amy says "Don't worry about it." We then tell him she's a friend of his former shadow. He
remembered HER alright. Tailed him for years.
I can't describe that feeling - having a "normal" day I suppose? Baseball. Grocery shopping. Leo not
remembering his past as much.
The next game Leo catches a ball as 1st baseman, a close one. As the ball was landing in his glove, he shut
his eyes tight. The reaction I'm more accustomed to seeing. I smile with seeing that familiar face. Leo opens his
eyes and smiles at the site of the ball and confirmation from the coach's face.
The coach says, "You can open your eyes now Leo."
Leo wanted to march in the Memorial Day Parade. He had so much fun! Just a few short years ago that
would've been suicide, just attending a parade. It was so cute seeing Leo and his team in their uniforms walking.
Just one more game. He's going to miss it.
Thursday, August 16, 2007 (8 years, 10 months)
Anniversary From Services
We've had a fairly uneventful end of the school year - Leo was sad but not upset like he was last
year. His teacher said he's ready for 3rd grade! As always, it takes me by surprise. We continue to
June 22 was the anniversary of ending therapies three years ago. Pretty incredible to me. As
always, I reflect upon the last year.
I sit back in my lawn chair at the neighborhood pool watching my son jump with abandon into the
deep end. He surfaces with a spongy ball and a big smile, and with determination throws it forcibly
to one of three other boys that are playing catch. One is his closest friend since Kindergarten. The
others are friends from his regular local elementary school. Kid sister is nearby in the shallow end
playing mermaids with her friends. Dad will be joining us here after work with Mexican take-out for
I am dry, in regular clothes, by the pool, with an unread magazine in my lap. I could glance at it if I
want to, my kids are strong swimmers now, but I enjoy watching. I find it peaceful to observe life as it
occurs right now in this moment. I am mindful of this daily gift I have received. I am the mother of a
happy child that has choices. Seven years ago my son was diagnosed with PDD-NOS. And let me
tell you, ‘happy’ wasn’t a word we used to describe Leo.
Earlier, Leo was picked up at nature camp by a mom whom he briefly met before we started
carpooling. Leo wasn’t concerned with what exact time she’d arrive or even the kind of car she
drove. He’s been to this camp before, but he attended without knowing any of the children. By the
second day, he already belonged to a little group of three boys. He enthusiastically tells me about
these new friends during dinner. He’s also become friendly with the carpool boy, playing basketball
games, X-Box, or Webkinz almost every day after camp. I listen in to their conversation on the drive
home “Hey, did you see the baby rats? Did you see those animal tracks? I saw you canoeing
today.” They talk on and on about school, speculating about what teacher they’ll get in the Fall.
I think about that intense year of aquatic OT when he was little. The one hour of driving each way,
the expense, all while taking care of Leo’s little sister. Our goal: The ultimate, a swim-safe child.
This seemed impossible since the initial goals were to address sensory defensiveness, vestibular
and proprioceptive challenges, fear of dying, hyposensitivity in legs, hypotonia in his arms and
upper back. I was raised in Southern California on the beach, so I always had envisioned sharing
my love of the ocean with my children. I think about Leo’s anxiety the night before each swim
“lesson”, how he’d worry himself sick, rarely sleeping.
Today Leo has choices. He chooses to swim with his friends. We can go to the beach. At nature
camp, he learned to wade and canoe, not concerned that he can’t see what’s under the water.
I think about how any change in routine would cause anxiety. Being 1 minute late would bring him to
tears. I think about Leo’s intense separation anxiety that made it impossible to place him in the care
of others. Being around other children would cause anxiety.
We went to visit my family/friends in California for 3 nice long weeks. It just gets easier and more fun
as the kids get older. Traveling alone with my kids, I'm on alert per usual. I hold a common fear that
many parents have, that our children will somehow get taken advantage of because of their
innocence, their naivety. While waiting for a flight at the airport for that family trip, Leo’s social
abilities were put to the test. A questionable character in the waiting area began talking to Leo,
asking him personal questions. He protected himself. When asked what town he lived in, he said “I
forgot”. He avoided eye contact with the man while boarding the plane by gazing at a nearby
billboard, pretending to read about the arriving flights. He told me later that right away the guy
seemed “creepy”. And he was right.
Am I an Autism parent? Yes. Has my life changed in 3 years? Yes and No. I don't have an
impossibly giant schedule to manage and implement. I have similar fears and concerns, but they
exist at a lower volume in my mind. I occasionally experience PTSS symptoms, such as when it’s
time for a parent/teacher conference, or when we have a very ‘off” spectrumy day. We are still in
debt although we are much better off financially than we once were.
Rollercoaster days are few and far between. Those ‘off’ days are hard, as I’m not used to them like I
once was. I’m grateful that I’m not living in crisis mode anymore, so these days no longer do me in.
I’m still angry though. Angry that I have more company, meaning more and more people I KNOW
and more people I meet have Autism. I’m angry that the issues at hand years ago are still the same
Autism is part of who Leo is, and I love him and accept all of him as a whole. I can't separate the
autism from non-autism parts. Sometimes it’s fun to attach certain aspects of his personality to
autism. But mostly, I just don’t care. I use our experience and Leo’s unique wiring as a learning tool.
I regularly remind both my children about what Leo’s deficits USED to be and now LOOK. He can do
anything. There are no barriers to his potential, and our reward is his success.
Wednesday, August 29, 2007
Summer Misc, 8 yrs 10 mos.
I refuse to say school has started, because it sure still feels like summer here. No homework, the kids are still
running around late at night, no activities until after labor day and beyond. Flip-flops and shorts are still being worn.
But indeed, school has started. My 1st and 3rd grader have the same schedule - they go to the same school and get
home at the same time, around 3:50pm. Hurray!
I can't confirm the disorder/disability count for 3rd grade as of yet, but I have confirmation that Leo's former
arch-nemesis from 1st grade turned friend in 2nd grade is in Leo's class. He also happens to have ADD. There's one
other boy that's quite a legend/handful that has a behavior plan as well. He's my favorite, and now is friends with Leo. I
predict this relationship will move forward - they've never had class together. His mother is pretty much a normal
person, inclusive, and honest.
So far, 3 kids in a class of 21. Leo didn't get his BFF in class, which was a giant bummer because we won't be able to
socialize with him much this year. His sister, Sydney's BFF, is the one with Leukemia, so his social schedule and
activities are limited to church. PDD Boy is still a close friend, but not in the same class. They'll see each other at
baseball which is great.
Leo's teacher seems TGTBT (too good to be true). She energetic, maternal, smart, firm, and engaging. I even told her
that she's TGTBT. After last year's mediocre one (at least in the personality/cheer leading dept), I'm pretty damned
Very cute, Leo is even more excited about Sydney's teacher. His former from 1st grade. She's terrific, and I have little
worries there. He thinks he's super cool because he 'knows just about everything' in regards to her class. On the first
day, he made sure his sister got to her class, as her sense of direction and memory isn't her strong suit (she's just
Leo's hypoglycemia has made a significant improvement over this summer's detox. Huge, I no longer have to pack an
extra snack for him to eat in the afternoon - he can basically make it combined with lunch schedule getting later as
he's getting older. I am slowly feeling like I am less like a mom with a diabetic child.
The other good news is that Leo seems basically fine on dairy. I've been really worried about the soy consumption in
this house, especially since it's in all the processed GF foods, so I boldly decided to give Leo dairy regularly
(translation=3x week), and the rest of the choices go to soy. So almost 50/50, splitting the difference of evilness. We
still stick to GF, as it does seem to build up, but do 'cheat' for special occasions like a birthday...
Leo had a sleepover at the same boy's house from last year. It was awesome just like last year! We talked a lot about
two boys that he doesn't like much that would be at the sleepover. We told him life isn't perfect, and even though these
boys aren't that nice sometimes and aren't your favorites, you just have to go with the flow. I also said people change,
especially kids, and that you have to give them a chance, they may surprise you. I reminded him about our neighbor,
how they get along now. The greatest was I only had to pack enzymes! The mom gave them for pizza, and he declined
cake. Simple! He had a total blast - this year they all played baseball and relays before a movie, popcorn, and other
boy stuff. I was so happy for him.
To change the subject (Hey I can do anything, it's my blog!), I seem to always have an issue at school at the beginning
of the year, and this year was no different. I found out through a friend that the PTA wants us to fill out detailed health
related questions on a waiver for PTA events/activities. I asked the nurse and the principal about the legality with
privacy. Of course, this touched a nerve with me because of vaccinations, allergies, and hidden diagnosis. Like I'd say
jack about any of it! Can we all say Secret List? I get the waiver thing. Insurance is insurance, but do you think I'll trust
these other moms with that info, when there's already an undercurrent of animosity towards "allergy kids" and the
politics that go with it?
So there ya go. Haven't heard anything BUT the form was sent home sans waiver. I'll keep you posted.
|Sunday, October 21, 2007
Birthdays, Tics, and Tremors, Oh My....
Leo turned 9 this week, his party was today. He loved getting his name announced on the loudspeaker at
school and bringing in GFCF cupcakes. Fruit wouldn't fly this year, I am the fruit pusher. When I asked him
what he wanted to bring, he at first named things that I knew he didn't like (like chocolate). He said, "But my
friends like that kind of stuff." What a sweet boy, thinking of them when it's his day. He's so over-
programed after years of NOT eating what they eat.
After negotiating a happy medium, "healthy" cupcakes, he was happy with all vanilla with vanilla frosting.
I asked how his friends liked them, for years they have passed even the most discriminating eaters, as I
always apply generous amounts of frosting. He said, "I warned them Mom." But, warning aside, he said
everyone liked them, just like previous years. And Leo was considerate in reminding me to leave one
cupcake frosting-free for one of his friends.
We listened to all his birthday messages from his cousins, aunts and uncles, and grandmas. It brought
tears to his eyes! A good birthday. A big weekend - a sleep-over with 14 boys for a friend's birthday, his
last baseball game, and I hadn't a care in the world. I am beyond grateful.
I am happy to report that Leo has had a super year so far. He's got a wonderful teacher that is upbeat and
seems to "live" for teaching. And no issues so far. He's learning a lot, and his new knowledge is really
obvious. His teacher reports that he's a "delightful" boy with a lot of enthusiasm. He's learning cursive and
actually likes it. Fine motor? Really? He's looking forward to learning more letters so he can write more
words. He hangs out with different kids this year at recess - the baseball kids, but when it's rainy and
there's indoor recess, he's back with his old best pal from kindergarten. I love this of course. He also likes
to play wall ball.
He also sat next to his old best pal at his birthday party. His cousin on the other side. Very sweet! He's part
of the nerd herd, in the top math class. He loves math, not a surprise. I look forward (sort of) to
Parent/Teacher conferences. I wonder what she'll say - Leo reports he does talk-out-of-turn, but isn't sure
if he does it less than last year. We'll see, but that's not what's on my mind. I'm thinking about testing. How
will he test? Will he be able to demonstrate what he knows? Or will there be a gap? A processing issue?
Untimed tests? A big year.
As I had mentioned, my daughter Sydney had been presenting minor tics (blinking and grimacing). After 3
days on the new protocol, she was tic free. I was elated. So quick! Temporarily, as one week later, Leo
began blinking, and most distressing to me, presenting with something like strabismus. His eyeballs would
roll horizontally back and forth, mostly to the right. I began feeling a bit P.T.S.S., but got myself together
and immediately put together a protocol similar to my daughter's. As a birthday gift to me, Leo woke up on
his birthday symptom-free. Yay!
Both were symptom-free for a couple weeks until I ran out of some of the enzyme. Then the tics appeared,
minor, but were present especially around bedtime. I feel like I'm waiting for a million dollars to arrive (the
enzymes). I'll be blogging about the cause of these tics soon....but in a nutshell, this is a symptom of strep.
So when strep goes around as it indeed does, this is how it manifests in my children. No sore throat, no
fever, no traditional illness.
I felt like a gift was laid upon my lap, I got an email from a mom of a 15 year old recovered boy. Merry
Christmas early! I was so happy to hear from a mom of a child that is older than mine that is doing so well,
and more importantly, happy. She wrote a passage titled "Then" which brought me back to when Leo was
little. Perfect timing, as I always reflect back around Leo's birthday, as that's when he was diagnosed on
Artemisia got me thinking about Leo as a tiny baby:
I was really excited when I got pregnant. I was adopted later in life (thankfully), so I had always looked
forward to a point where I'd have my own naturally family. When Leo began having small tremors following
nursing at 2 months old, I was the only one that didn't think it was right. An infant shouldn't be having
tremors, my instinct told me. I remember the pediatrician telling me it was probably nothing, but when
pressed he referred me to a neurologist. I was so embarrassed, a new mom, sweaty, feeling awkward,
nursing in front of him in his cold office. Did I mention I have giant breasts? Even before I was pregnant?
Thank god I had the company of my husband. I got through it.
The neurologist dismissed them as nothing, and told me to go on with life and if things worsen, to let them
know. Things didn’t worsen, but they stayed the same. That was bad enough. I dreaded the end of a
feeding, looking down for any stir and followed by the familiar jittery movements. As tiny as they were, they
seemed so huge that they took up the room.
Do nothing? Their words didn’t ring true to me. Everyone told me to believe the doctors. This is the Big
Apple after all. Who am I, an insecure first-time mom, to question them?
By the time Leo was 4 months, severe separation anxiety kicked in. I couldn’t put him down for a second.
Literally. I was so distressed. What was I thinking? I can’t do this, this whole mom thing. I must be doing
something wrong and I have to get to the bottom of it. Leo had to be constantly held, he nursed EVERY
hour just one side, and I couldn’t leave him in the care of anyone but my husband.
We babysat my friend’s baby that was just a few days older with no hiccups. This was the big plan, trading
date nights so us new parents can get out. The baby was sweet, calm, and aloud me to put him down
under the play mat. Adorable. We took lots of pictures of Leo’s first friend.
When it was our turn for a night out, I was filled with anxiety. I knew this may not work, but I had to try.
Everyone told me that we just needed practice. That’s all, just practice. The family came over, excited
about the prospect of extra responsibility. I didn’t know what to do. I felt like a deer in the headlights. In the
arms of strangers, my screaming infant was so wound up he threw up. Embarrassed, I let my new mommy
friend go home, pretending that we’d try another time. My hope for a new social circle went out that door
too. I hung up my newly purchased post-pregnancy duds in the closet, knowing I may not see those
puppies for a while. I knew something was different about my son, and I hoped that this ‘high maintenance’
stuff would eventually fade. No one seemed concerned. “All babies are different, everything is normal for a
baby” is what I was told.
I watched while other moms seemed to move forward into the next phase, life with a baby. I stayed home
far more than I ever expected with my baby I couldn’t leave. Leo had a sleep schedule that began with him
waking at noon and going to bed at midnight. I tried tinkering with this, but regardless of what cruel things
people suggested I do with a 4 month old, I stuck with my gut. Half the day was over for my new mommy
friends before I left my apartment. I looked forward to my weekly ‘play dates’ with the other moms until I got
a comment about Leo’s lack of expression. I got very upset but kept it to myself. The pediatrician continued
to tell me that everything was normal, even when I told him I was concerned about his head control. Of
course, we discovered later Leo had hypotonia and overall weakness.
In my new house in the suburbs, the isolation continued. Failed attempts with babysitters kept me at home
with Leo rather than going back to work. One babysitter worked out if I left just for an hour. She was getting
a degree in Early Childhood and wasn’t concerned either.
About a year later I began the search for what was 'wrong' with my baby, finally taking ownership of his
wellness (and mine). After I self-diagnosed him, the rest is history, history we've all made. That was a long
time ago, almost 9 years ago that my journey began.
My story is no different than thousands of moms out there. But with survive.
We figure it out.