There is a day spoken of in support groups for parents of neurodiverse children: Diagnosis day. For most of us, an Autism diagnosis does not come out of the blue. There are often years between understanding our children and finding doctors who will listen to us an look beyond the usual autism tropes to see that our child has a terrific mask, but is struggling greatly. Even so, Diagnosis day can come with a mix of emotions- relief that your child may now be given access to the services they will need to thrive. Devastation as you realize how unwelcoming the world can be for a neurodiverse person. Isolation as you watch your friends and family with typical children navigate their lives without the dozens of hurdles you and your child face daily. It is a difficult day, Diagnosis Day.
I want to tell you about my journey to Ryan’s diagnosis. It makes me uncomfortable to say that. Every time I describe myself as an autism mom I worry that I am taking some of Ryan’s identity away from him and using it to paint myself. There is just no denying that having an autistic child will change the way a person raises that child. Or, at least it should. To provide an autistic person with the tools and self-confidence to navigate our world is a sacred duty.
I knew Ryan was different when he was just a baby. This child had no interest in most of the usual infant toys but would be endlessly study anything with the letters from the alphabet. He began walking a week before he was 9 months old and took off running shortly after that. He was less than a year old when the word Autistic first started floating around my mind though I could never pinpoint why. So, I did what so many people do every day. I turned to the internet, and it convinced me that my child was not autistic. I mean, he was so cuddly. He willingly made eye contact (Not often, mind you, but often enough) He was so interested in the world around. He didn’t flap. I decided that I was just experiencing first-time mom jitters.
The next round of questioning began about 2 years old and then never really stopped. Ryan was 18 months old when he said his first word, “Uh oh!” as he dropped his sippy cup in the parking lot of a Walgreens. That was his only word for another year or so. When I spoke to his doctor about his language development he asked the same questions I had found online. Then, he kindly shook his head and explained to me “Every child has their own priorities in development. Ryan’s priority is movement.” Now, I understand what the doctor got wrong there. Ryan’s priority isn’t movement. Movement is Ryan’s language.
When Ryan turned 3 we were living in England and he began attending nursery school 15 hours a week. This is when things began moving forward to name what made my child different. We placed Ryan in a nursery based on its convenient location and recommendations of other parents. It became clear very soon after that it was not the right place for my Lion. They did not know how to cope with the way he struggled to engage with the activities planned. More importantly, they didn’t seem to want to learn. After they excluded him from the annual nativity play for the crime of being unable to sit still, I removed him from their care. This was the first time I realized that the world is not set up to accept people like Ryan. It is my job to fight spaces where he can be himself and be loved.
Luckily, that is what I did. Ryan’s second nursery was perfect for him. They sat with me as I described my son in great detail. I was determined to make sure they would help him succeed without crushing his spirit. I felt sure of the choice I made the second time around, but I was still nervous the day I dropped him off for his first day. I didn’t need to be. When I brought Ryan home he spent the evening singing and dancing. He was the happiest he had been in months. He fell in love with one of the teachers, and she fell in love with him. They modified the classroom to help Ryan understand what was expected of him. They helped him to feel safe. They applied for early intervention and before long Ryan was meeting weekly with a lovely lady who came to work on his social and language skills. In the months leading up to the birth of my daughter, Aurora, everyone came together to make sure the transition away from the only child was as smooth as possible. I felt so seen and so supported. My confidence that I could be Ryan’s advocate grew every day. I will forever be grateful for that time.
Of course, the journey from birth to adulthood is a bumpy one. When you add neurodiversity to the mix it becomes even more of a roller coaster ride. As we became a family of 4 we were climbing high, but for me, the first fall was coming.