Yesterday was Cooper’s 6th birthday. My baby is 6. How can that be? Of course I knew this day was coming. And I prepared for the emotional impact it was going to have on me.
Each year brings on new challenges. New services are needed. Services end. He will be done at Fraser in January. That’s a toughie. Our family moved here for Fraser. And it changed Cooper’s life.
His needs are changing too. It is very apparent that Cooper has severe autism. Or low functioning autism. When he was 2, 3, and 4 we were didn’t know where he fell on the spectrum. We knew he was autistic. We knew he was nonverbal. Then his autistic peers started to make improvements. They started talking. They started playing. They developed interests. I am not lessening their autism. Please don’t take it that way. Autism is autism. It’s all hard.
But nonverbal severe autism is tough.
Finding other nonverbal kiddos out there is also a challenge. There just aren’t as many. The isolation is getting worse. We are a different kind of autism now. That has been hard. I’m not going to lie.
There are days when I feel like I have the most severe child out there. I know it’s not true. But it feels that way.
Our families needs are changing too. We have an almost 4 year old that is in swimming lessons and has friends and is the epitome of a social butterfly. And finding a babysitter for an autistic child is not really an option.
The list goes on. Potty training a 6 year old is a lot different than a baby. Or how we need a stroller for a 60 pound child. Or how he is kicking a lot more than he used too. Putting stuff in his mouth. Etc. Etc.
This is not the life I pictured. When I was pregnant I thought at age 6 we would be signing up for T-Ball and Soccer. We are not. We probably never will.
When I think about his age I get a bit emotional.There is the normal mom stuff. My baby is growing up. He is in size 7 clothes. WHAT? Just yesterday he was a baby. I was carrying him and nursing him. And boom. He is 6.
But there are other emotions too. Sadness is a big one.
I have been telling Cooper about his birthday for days leading up to it. He gave me no acknowledgement. I can’t be sure if he knows what his birthday is. Or if he cares. Most likely it’s both. Birthdays are about celebration. A party. Gifts. Friends. None of those things interest him. And that’s fine. Trust me I am getting to be a pro at this stuff. No more fancy, elaborate parties that my kid won’t enjoy. No more of that. The focus is Cooper’s happiness and quality of life now. And that’s ok. I accept that.
I sent his favorite cookies to school. I wrote a note on them…’For Super Cooper’s birthday.’ I sent an email to his teacher. He wouldn’t tell his teacher even if he could speak.
Family called. Friends called. We Facetimed. Cooper didn’t care. His birthday doesn’t matter to him. It’s another day.
I tried to teach him to hold up 6 fingers. He can’t. I tried to get him to make the ‘s’ sound for six. It came out as a gurgle. Lord did he try though. It is heartbreaking to see the struggles he has to make sounds.
Before bed I spent a few minutes watching him dancing in the window to his reflection and a song on his Kindle. He was so happy dancing around. And boom. I was flooded with emotion at this little person so completely and utterly inside his own head. Not a care in the world. Dancing. Laughing. Rolling. And off he ran with a giggle.
And my mind was racing. Just like that I jumped into the rabbit hole. I could feel it coming on.
So. Much. Anger. And. Sadness.
Anger at Autism. Not with Cooper. I love Cooper. But at everything that Autism robbed us of. And everything we missed because of it.
So many milestones. First words. Play dates. Friends. First day of school. Holidays. Birthdays. His relationship with his brother.
And it started coming faster and faster.
The hours and hours spent with doctors and therapies. The time spent researching and talking to social workers and therapists.
All the things our family can’t do. The events his brother misses because ‘we just can’t do stuff like that.’
It quickly turned into fear.
Fear of him getting bigger.Fear of him needing more care than I can give him. Fear of the unknown. Who will care for him when I no longer can. Fear of bullying. Fear of him getting teased in school.Fear of his peers starting to notice that he smells like poop all the time. Fear of them making fun of his shouts and squeals.
Fear of him getting lost. Fear of him wandering. Fear of someone touching him. Injuring him. Sexually assaulting him. Fear that he won’t be able to tell me if someone hurts him. Fear of puberty.
The fear turned into something resembling anger and sadness. Or emptiness. But yet deeper.
A bit more raw. It’s the things that I want to say out loud that are going continuously through my head. But I am scared to say out loud.
Why me? Why us? Why him?
And in saying all of these words out loud I want it to be clear that Cooper is the absolute love of my life. I miss him the second he is apart from me. I think about him every hour of every day. I worry. I pray. But most of all I hope that I can provide him happiness.
Happy 6th Birthday to our train loving, dancing, silly, smart, Super Cooper. We had no idea the force that was coming into our lives six years ago. There have been ups and downs. Fighting for services, tears, and most of all….unbelievable joy. You have changed our lives my love.
We’d always choose you buddy,
in a hundred lifetimes,
in any version of reality,
we’d find you,
and always choose you.