“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”
My son Cookie is a little miracle. He was born premature and he was hospitalized for three months at birth. He had many health complications and surgeries including pneumonia and hydrocephalus. We almost lost him a few times. He made it through because he’s a tough little Cookie!
Cookie received a diagnosis of auditory neuropathy. We didn’t really know if or how much he could hear. I was heartbroken by the thought that he didn’t hear me all those times that I sang to him while he was in the hospital. He started speech therapy and luckily we discovered that although he does have a hearing impairment, he can hear. I’m thankful that he has some words. He can name things and ask to eat or drink but he doesn’t know how to have a conversation (not yet).
I had some concerns about Cookie‘s development and his behaviors but we always made excuses for it.
- Of course he doesn’t talk because he can’t hear
- Boys always walk later than girls
- Of course he’s not interested in other kids, he is never around other children (he has a respiratory condition so we had to avoid him getting sick)
- Everything he went through in the hospital is why he cries and needs to be held all the time
- Of course he doesn’t answer to his name, he’s concentrating on the TV show he’s watching
When he was two and a half, I realized we had been in denial. His doctor said I could take him to a party because his lungs were stronger. There were a lot of kids but he wouldn’t look at them or play with them. All he wanted to do was look for strollers so he could open and close the belt buckles. I spent that night researching autism on the internet.
I couldn’t necessarily recognize my son in everything I read about autism. Until I found this blog of a mother of three children with autism and in this post where she mentions (among other things) that belt buckles fascinate her daughter too. I am very grateful that she shared her experience. I hope I can help someone else in sharing mine.
Because the waiting list for an evaluation is so long, my son Cookie finally got his diagnosis at age four. His official diagnosis is autism, ADHD and auditory neuropathy. But he also has sensory processing disorder, gastrointestinal issues, migraines and obsessive tendencies which all can lead to unpredictable meltdowns.
Cookie did enter the public school system and completed his pre-kindergarten year. There were days that I had to pick him up because of meltdowns and he missed a lot of school because he is often sick. At the start of his kindergarten year he came home with bruises on his arms. He was restrained at school during two hours by three adults. I immediately removed him from that school and started to teach him at home. Homeschool was a temporary solution but ended up being the best solution for him.
Every day he struggles but every day he makes me proud. There is so much more to him than these labels. He is extremely intelligent and has an amazing memory. He loves to sing and has an infectious laugh. He is curious and loves to learn. He is affectionate and kindhearted. He loves Sesame Street, especially his favorite super hero, SUPER GROVER and my little Cookie is truly my super hero! ♥