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. For more details, see new article in Autism/Asperger's Digest.
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 likesthings 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.