When Cooper was 11 months old, a pediatric neurologist
diagnosed him with hypotonia (low muscle tone) and global developmental delays.
We soon entered a world of specialized therapies to help him with his fine
motor skills (such as holding a crayon), gross motor skills (such as walking or
jumping) and his speech and language skills.
After his third birthday, he began speaking more and using
increasingly longer sentences. Halfway through that year, he began attending a mainstream
preschool with a special education teacher as his shadow to give him cues and
foster interactions with the other kids. All of a sudden, there was a burst of
speech.
At first, Marc and I were ecstatic. Cooper was finally talking! A
lot! We’d waited so long for this to happen.
And then we started listening. And wondering what the heck was going on with him.
There were tantrums. Dozens a day. The only pattern was that
this child was consistently furious at the world.
Something didn’t seem right to us. Weren’t kids supposed to have fewer tantrums as they got older? He was edging toward turning 4, not entering the terrible 2s.
He was increasingly rigid and oppositional about many things, particularly things that shouldn’t concern him. One day I parked the car on a different street when taking him to a physical therapy session. “You can’t park there. There is no crosswalk. That is a big problem. YOU CAN’T DO THAT!”
If we tried to walk somewhere using a different route, he’d refuse and would often buckle his legs in protest.
He was often upset when certain things weren’t “right.” For example, he’d tell us that the wall is cracked or the toy is broken and then sometimes refuse to interact with something he perceived as “damaged” (i.e. a book with a torn cover—“You can’t read that book. It’s broken. Put it down!”).
His insistence on being “right” was interfering with his social interactions. One day, he and another 3-year-old boy were playing at our house. The boy took a plastic car out of the box overflowing with various vehicles and said, “I’m getting a race car.”
Cooper replied, “That’s not a race car. It’s a race truck. It’s race truck. It’s not a race car. It’s a race truck.” The other boy just continued to play with the car and didn’t respond.
He would have a tantrum if served cereal in a bowl that wasn’t his favorite “Thomas the Tank Engine” bowl (“You used the wrong bowl! That bowl is dangerous!”) and would throw the bowl with cereal and milk onto the carpet.
He’d get upset if the “wrong” parent served him breakfast.
One day there was too much water in the bathtub. Another day there was too little water in the bathtub. Then the water in the bathtub was too warm. Or it was too cold.
Once I took the newspapers out for recycling and was reprimanded: “Daddy will be so upset! You can’t throw out Daddy’s papers! Stop that this instance!”
It was beyond maddening.
He was also inconsistent (and still is) in responding to hearing his name; at the time of his diagnosis, he wouldn’t respond in dangerous situations such as running down the sidewalk, away from me or Marc.
He would get anxious and stuck on a topic, asking the same question over and over again.
He had, and continues to have, difficulty maintaining eye contact and greeting others with “Hi” or “Good-bye” without being prompted.
He rarely imitated us and wasn’t engaging in much pretend play with his peers.
More troubling was that he was exhibiting self-stimulating behavior such as spinning in circles and grinding his teeth.
One day I sat down with the diagnostic criteria for autism spectrum disorders and realized that I could match almost all of the criteria with examples of Cooper’s behavior, based on the reports from his team of teachers and therapists.
So we took him to the Seaver Autism Center for Research and Treatment at Mount Sinai School of Medicine in New York to be tested.
Although this type of testing can easily cost thousands of dollars, we were able to pay in blood. Literally. The center was doing a study on the genetics of autism, and as part of that Marc, Cooper and I allowed them to draw a blood sample for this international study.
In exchange, the doctors there did tons of testing, including an IQ test (his cognitive skillls are fine—yay! Honestly, he scored so low on a number of cognitive assessments before then, plus his speech was so delayed, that we didn’t know what was going on inside him).
They also did the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview, Revised (ADI-R). The ADOS testing sessions were videotaped and then peer-reviewed by psychologists who’d received specialized training in interpreting ADOS results.
By August, just after his fourth birthday, we had our answer. Cooper was indeed on the autism spectrum. He has some rough edges that need to be smoothed out but he is a person who really, really wants to learn and is capable of doing so.
For us, knowing he’s autistic means everything and nothing. It means everything in that we now a whole shelf of books that can give us some answers, reassurance and techniques for coping with his quirky behavior.
At the same time, it means nothing. It doesn’t change how we see him or how much we love him. He’ll always be our adorable, funny, magical child.
