There is a post that I haven’t wanted to write for a long time but I have been scared. Scared that I will get judged as Cooper’s mom. As an autism mom. As a person. And that my inbox will get flooded with hate mail. I will be ‘that’ mom that referred to autism as a box full of darnkess. But, I am going to do it anyways. Because I am crazy like that. 🙂
I didn’t ask to have an autistic son. I prayed for Cooper before I knew he was Cooper and here he is in all his glory. Standing in front of me, flapping around, watching Thomas the Train. And per the usual, eating a chocolate granola bar. His new favorite.
I used to read a lot of autism blogs. Let me rephrase that, I used to read a lot of blogs about autistic children BEFORE they were diagnosed. Which is exactly the kind of blog FindingCoopersVoice was. Now, I guess, it’s an autism blog. Although I still haven’t changed the ‘About Us’ page. I just can’t yet.
After his diagnosis I tried to start reading the ‘big’ and ‘popular’ autism blogs. I really did. I liked all the pages on Facebook and I started following all the autism people on Instagram. And you know what happened. I got freaking depressed. I probably go into Facebook once a week now. I login and 10 posts in a row are about autism and apraxia. It’s too sad for me. I either read things about really autistic kids or I see success stories that I don’t believe we will ever have.
And there is one other trend. One that I don’t have yet. And it makes me sad and angry and hate myself all at the same time.
A lot of autism moms talk about all the strength and hope their child has given them. They will say things like, “my autistic child has taught me to see the world differently.” I will look at those sentences and think, “what the F is wrong with me??” And sometimes I will even cry. Why hasn’t Cooper taught me anything? Am I the only mom that feels this way?
Especially on the bad days. Cooper has zero self-care. Zero words. Zero hobbies. Very little play. Huge sensory issues. Every meal is a struggle. There are days were every single thing is a struggle. And I will think about the moms that only talk about the good side of autism. And I will sink lower and lower and think, “I don’t know what the good side is yet.” And I will seriously wonder if I am doing something wrong.
I have actually thought at times, “Is Cooper bad at being autistic?” There are actually times when I have wished that he had repetitive behaviors. Just, so he would have a hobby.
Maybe the two of us together are bad at autism.
Don’t get me wrong, Cooper has changed me. I am completely different person. And I like to think in a good way. I look at things differently. But…has he specifically taught me something? No. Not yet. (Hangs head in shame.)
Other special needs moms have to feel this way too. Its’ not just me. And I shouldn’t feel guilty.
Somedays I feel like I can take on autism and together our little family is going to be fine. And some days I look up plane tickets and consider running away. Both are ok.
Right now, I see autism as a box full of darkness. But, it’s being given to me by the love of my life. And that makes it easier to take.