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What my brother and my son's autism taught me about myself

This guest blog post is by Megan Nelson Walker. She is a dedicated mother and wife, her son was diagnosed with autism at age 2 and her brother is also on the spectrum.

Autism has been a part of my life since I was 3 years old, when my brother was born. Growing up with my brother was a very different experience. I’m not going to say we never fought because we did, but they were never serious arguments. I realize now that I’m older, that my brother was not able to make eye contact much or hold a conversation for very long. He loved Disney movies, he could recite and mimic them. When we were younger, not many people knew much about what autism was. He was put in school at age 3 where he got speech and occupational therapy. This, in turn, helped him socially. He got bullied a few times, I’d always intervene, tackling them like a football player to protect my brother.

As we got older, I began to learn about and understand his behaviors, tics and meltdowns. Things got especially hard when we moved. My brother suffered a regression, he stopped talking and needed to wear diapers. I rode the bus to and from school with him. I helped my grandparents with him while my parents were at work. As I got older, I was able to care for him myself. When he was 10 years old, he got into a special needs school. I got a job at 16 so I could help him and the family out even more. I’d bring home my brothers’ favorite food, toys, or movies as often as I could. 

When I became a mom, I started to notice that my 9-month-old baby boy was about 3 months behind his peers with verbal communication. Also, his eye contact wasn’t great and he wouldn’t respond to his name. He flapped his arms and seemed disconnected. I really wanted to send him to a developmental specialist as I suspected autism, but his doctor insisted on sending him to an audiologist.

After he turned 2, we got confirmation that he could hear. When we finally made it to a developmental specialist, everything moved pretty quickly from there. I told the doctor our medical history and every single behavior he had exhibited that I recognized.

A few weeks later we did the Autism Diagnostic Observation Schedule (ADOS) and they confirmed he was autistic. After the diagnosis, I was feeling so many emotions at once. After getting referrals to speech and occupational therapists, I was moreso just relieved that I could finally get him the help I knew he needed.

A few weeks later we went back to get test results. His MRI was normal, but his EEG came back abnormal. The genetic tests came back with a diagnosis of microduplication of which implements developmental delays. I understood he was born this way, but I wouldn’t let anything stand in my way. At this point, he knew two words in total.

Some speech and occupational therapists came through and worked with us in-home. I worked every day to find a way into his mind and figured out what worked and what didn’t. He got into school at age 3 like my brother had. I kept utilizing sign language, which worked for some time, then we found nursery rhymes. With the help of nursery rhymes and lots of patience, his speech took off.

My son is  almost 5 years old now. He loves school and is learning and talking more and more each day. He also loves singing...and believe me, I love hearing him sing!

From my brother’s diagnosis to my son’s, I have learned an incredible amount about autism and about myself. I have learned to be patient, kind, humble and free of judgement. I have learned to trust my instincts and celebrate the small victories as they come.

 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.