I had a completely normal pregnancy with Cooper and was induced on my due date. I had a typical delivery, although LONG (holy f’ing ouch!) with Cooper. His Apgar scores were low at first due some breathing issues but he pepped up right away. If you are on a journey with a special needs kiddo you will realize every person and their sister wants to know about your child’s birth. I remember telling the school one time that it was none of their business. How Cooper came out of my vagina shouldn’t matter to them. Anyhow, I got used to it.
I knew right away that Cooper was different. I knew the second I brought him home. He never, ever slept. As a newborn, in a 24 hour cycle, he would sleep maybe 10 hours tops. I remember holding this baby and rocking and crying and being so confused as to why it was so hard.
Cooper met every physical milestone on time up until jumping. He also made excellent eye contact and was social. Besides being nonverbal and the trouble sleeping he was pretty typical until 1 1/2. After that I noticed he was really getting passed up developmentally. Not only could Cooper not do ANY standardized testing for his age, he also refused to try. That’s when the red flags started going up.
Little did I know at the time we were starting an emotionally exhausting journey. Cooper had digestive issues. Cooper had sleeping issues. Eating issues. Transition issues. And no words. He was diagnosed with a hearing loss. You can read that HERE. Then we found he COULD hear.
Autism was thrown around a few times but his pediatrician didn’t feel that was the right diagnosis. Honestly, we had to fight for a diagnosis.
And I didn’t know a lot about autism. Cooper didn’t line anything up. He didn’t spin or do a lot of flapping. He gave hugs and kisses and loves. And we have been told numerous times that if Cooper spoke he probably wouldn’t be on the spectrum. I don’t know if that is true but…
But he does really struggle at transitions. And trying new things. And playing.
In October 2014 after seeking out an Autism Specialist in a bigger city, Cooper was diagnosed on the spectrum. He also appears to have Apraxia or a motor processing disorder. Although he is very, very strong and a big boy, he has muscle weakness in his hands, arms and most likely his mouth.
After we received his diagnosis we moved our family 3 hours away to a new city so Cooper could have the best care possible. He now attends an autism preschool 5 days a week in the mornings that focuses on education and an outpatient autism program 5 days a week in the afternoon that focuses on social skills. Since moving we have seen AMAZING changes and improvements in Super Cooper. Still, no words though.
I’ve learned so much about Cooper’s autism. And it is so unbelievably lonely at times. My heart is broken. And I find living with a broken heart to be so exhausting at times.
It’s not the ‘autism’ that hurts. It’s the world passing Cooper by.
I have accepted it. I truly have. But I haven’t accepted the fact that my baby might never say mama or daddy. Or tell me about his day. Or go to college or get married or have babies. Those things keep me up at night. And that is what I write about here. My struggles with acceptance.
I walk a fine line between giving up and being hopeful.
I share a glimpse of life with a nonverbal ASD child on Instagram. Click HERE to follow me.
Here is a video of Cooper in March 2014. He still has no spoken words and when we ask him to mimic a word he will make a blowing sound.
A few posts to start with:
The Stigma of Being a Special Needs Mom with Depression-Featured on Break the Parenting Mold