I get so many emails from people wondering where I am. Emails wondering if Cooper is ok. If I am ok? People that genuinely care about Cooper and his development reach out to me on a daily basis. These emails and messages warm my heart. And I am so thankful for them. It reminds me that Cooper’s journey is helping others. That is amazing.
I can remember the blogs that got me through. I would read them from start to finish in a night while drinking a bottle or two of wine and crying. Autism blogs got me through the first two years.
But then I stopped responding to comments. And emails. I shut down.
I stopped writing. Why?
Quite simply, I didn’t know what to say to people.
It got to hard to be honest. I forgot how.
I have reached a point where I don’t know what to say anymore. Writing used to be so therapeutic for me. I loved putting all of my feelings towards autism into one place. And receiving no judgment. This blog was the one place where I could be completely honest about Cooper. Whether I was angry or sad. Or if I had something to celebrate. I could write it down and feel good about it.
One day I hated autism. And the next I could be thankful for the sweet, emotional, curious boy that is Super Cooper. Either way. I wrote with utter honesty. I didn’t hold back. Often I was judged. Or called out for my way of thinking by a stranger. That’s ok.
Because this was my place.
But, something changed. A few months ago I started to feel like I couldn’t be honest anymore. Family and friends didn’t want to hear the truth anymore. The ugly sides of autism got to be a bit much for people. Hell, the ugly sides of autism got to be too much for me.
I started to get insecure about what I wrote. I could no longer say the things I was feeling. I would write a little sweeter than usual. Or I’d sugar coat it. I felt like a fraud.
I wanted to write about what autism did to my marriage. And my relationship with my husband. And ultimately, what lead to my divorce. But I didn’t. I was too scared. I didn’t know how to deal with that level of honesty in real life.
I wanted to write about how Cooper sucks up so much of my energy that I have nothing left over for my other child. Or my job. Or myself. And there are times that I hate him. I hate what he has done to me. How he has changed my life. How my life is hard.
I wanted to write about how I know in my heart that Cooper is never going to speak. He is going to be nonverbal the rest of his life. And I want to be able to say that without people telling me I am wrong.
And I wanted to write about how I blame autism for my insecurities.
How I am sick of optimism. How I want honesty. How I want everyone to settle the F down and accept that fact that Cooper is Cooper. We don’t need to hope that he is going to change. We also don’t need to cure autism. Or carry the torch to cure autism. We just need to be human.
But every time I tried…I couldn’t.
I was paralyzed.
I think the other part had to do with Cooper turning five in December.
I expected his birthday to hit me really hard. I warned my closest friends. I told them I was going to be a mess. I asked for support to get through it. I planned on grieving the little boy I had dreamed of. That’s what I have done for the past 4 years.
I didn’t plan a party. I didn’t even consider having one. Cooper hates parties and crowds. He has no friends. He doesn’t care about presents. Or socializing. Or celebrating. He has no idea what a birthday is. Nor does he care.
The thought of celebrating this year never crossed my mind.
That, in itself, is awful. I’m an awful person.
The days leading up to his birthday I kept waiting for the sadness to wash over me. The depression. But it didn’t come. I didn’t imagine his future. I didn’t imagine what could be. I didn’t hope for it to be different.
Quite honestly, I didn’t think about it at all.
And that in itself depressed the fuck out of me.
What kind of person blocks out their child’s birthday? I think my mind had to block it out. I couldn’t handle it this year. Five years old is a biggie. We should be doing so many things together. I should be watching him grow up. But I am not.
Cooper is just here.
Cooper’s development is trudging along. I would say socially he is at the age of a 2 year old. And that might be a little optimistic. Now, if I was to say that to family or friends they would tell me I was being negative. I am not. It is the truth. He still wears a diaper 100% of the time. He has no words. He flaps. And hits. And squeals.
I have learned that he is severely autistic. Or low functioning on the spectrum.
That was a blow. It truly, truly was.
I have the severely autistic kid. God that sucks. Right? Other autism moms are celebrating victories and hearing words and I’m just over here on pity party island digging poop out of my kids butt.
So…ultimately…I don’t write because I don’t know what to say to help people anymore. I truly believed that Cooper was going to get better. I thought he would learn to speak and get through this. I thought we would be the family that came out the other side. We would conquer autism. We would find Cooper’s voice.
I no longer believe that is going to happen in the traditional sense.
I think my Cooper journey has changed. It was about survival. Straight up diagnosis and survival. Now it is about adaptation and acceptance.
Onto phase two of this journey….And I promise to write more. Super Cooper’s journey is priceless and needs to be shared!