Part 1 is here.
We had parent teacher conferences and things came up- “He can’t use a pincer grasp,” and “He’s always picking up tiny things off the floor,” and “He really likes to make this noise…”
One day, one of Toby’s teachers was sick, so a teacher from another class filled in. This teacher also “happened” to be a former speech therapist. (I say “happened” because I truly believe this was divinely orchestrated.)
She came up to me when I went to pick Toby up from school. She gently told me that she thought there might be more wrong than just a speech delay—she had a feeling something else was wrong, and whatever that was, caused the speech delay.
My heart sank. Suddenly all of those quirks Toby had seemed like symptoms of….something. Autism was never on my radar. I began to prepare myself for a diagnosis of a garden variety developmental delay, and made another appointment with a different pediatrician.
I sat there in the examination room with my husband and Toby. Elinor was with a relative. I watched the doctor give Toby various little tests to do and felt sicker and sicker as I saw him fail most of them. Finally, she came to the conclusion that he needed to see a specialist. She wasn’t comfortable diagnosing him herself.
I begged her for reassurance that he would be OK with just a little extra help to get him back on track (a thought I had used to comfort myself in my turmoil). She stopped, not sure what to say, and couldn’t meet my eye.
Then I knew she couldn’t give me that peace.
The weeks between that appointment and the appointment with the specialist were hellish. I alternated between denial of the doctor’s assessment and despair that he was intellectually disabled and would end up in a nursing home.
Thankfully, our doctor was kind enough to put a rush on our appointment. We were seen just a few weeks from our referral, which is unheard of with the practice we were going to.
My sister had agreed to watch Elinor in the waiting room while my husband and I took Toby to his appointment. Sitting down next to her, I whispered that that our pediatrician had briefly mentioned autism at our last appointment, thinking it was so far-fetched but at the same time shaking at the possibility. She wasn’t sure what to say. I wasn’t sure what I wanted her to say.
We were finally taken back to a room where we were grilled by a doctor about Toby. They asked us question after question and we tried to answer them as best we could. At one point the doctor asked me, “What makes you think he is intelligent?” A question I had never even asked myself.
“I don’t know,” I said, “I just know he is.”
By the end of the visit, Toby had a diagnosis of mild-moderate autism. I was in complete and utter shock. We were given the famous (infamous?) 100 days packet and sent home with more appointments to follow up with later. I couldn’t bring myself to read more than a page or two.
At first, I was OK. I was sad but relieved. Finally we had a reason and a purpose. A goal.
I wore red lipstick for the first time and told myself I’d better get used to not caring what people thought about me or my son.
Eventually, I read the 100 days packet. All of it.
I finally broke down. I realized that our life would never be the same. All the information in the world couldn’t change the fact that Toby was different–and would be for the rest of his life. All the therapy in the world wouldn’t change the way his mind worked.
I was a wreck for a long time. I took on so much guilt and blame for not seeing it sooner. Toby was barely four years old when he was diagnosed. When I learned that the crucial window for autism intervention was before the age of four, I couldn’t let it go.
I obsessively went over our old pictures and videos, scouring it for what I now knew to be signs of autism. Hand flapping when he was a toddler. Dancing on tiptoes whenever he was excited. Playing with only the eyes or nose of Mr. Potato head while humming nonstop, and never putting the pieces all together.
And not a single video of him babbling.
I began to feel hungry for more information. I started reading everything I could find. I started analyzing everything Toby did. Not just him, either. I also studied every child I ever saw at the park, church or school.
Looking back, I see now that I was just hoping that I wasn’t the only mom to ever think their child was perfectly fine only to be shocked with an autism diagnosis.
I began to feel anxious all the time. I couldn’t rest. I couldn’t decide what I was supposed to do with all the facts swimming around my head, making my life a whirlpool of confusion.
Completely and utterly overwhelmed, I lost my ability to function in my life. One day, my husband came into the room when I was once again fact searching. I sputtered something about not being sure if Toby was orally hyposensitive or hypersensitive. He gently took the book out of my hand. Though I never would have put it down myself, once it was taken from me–I was glad it was gone.
I realized I desperately needed a break.
I decided to just take a step back, and eventually, to start over. This time, I went slowly. I went more by what other people could teach me from experience and less by pages and pages of facts, statistics and medical jargon.
When I started to learn this way, I retained a lot more information. Because I was learning piece by piece instead of all at once, I was able to emotionally as well as intellectually process the things I was learning.
The most important thing I learned about autism during this time was that EVERY child with autism is different. Not every single thing I read or hear about autism will apply to my child. The variations of people on the autism spectrum are endless.
This is my story.
Will you share yours?