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My son has significant disabilities, and I hate that this is my life
Before I begin you should know that I love my child unconditionally. He is so smart in his own way, and has a generous heart. I know this.
But I also, sometimes… okay, a lot of the time, hate that this is my life.
I hate the looks we get. When someone asks him a question then awkwardly realizes he can’t respond. When he has a major, hysterical meltdown in a store and I have to sing and rock him on the floor until he calms down. When other kids realize he isn’t as “normal” as he looks…
I hate that he will probably never have a real friend. That I will have to fight for him to be included in everything. That his birthday parties will likely be adults/family only.
I hate not being able to go to church without making sure they have an adult with training to be with him. I hate how hard it is to find adults to be with him. And that I have to be the one to train them.
I hate that he will be my only child. I don’t know that I can handle a second child with disabilities… and it’s not fair to him if we bring a neurotypical child into the mix. It’s not fair to the other child either.
I hate that he has to be watched 24/7. I never get anything done because I am exhausted from keeping him safe while trying to give him room to grow and learn.
I hate the appointments, the juggling of specialists and primary care doctors and trying to remember who needs to be told what. I hate having to sign a kajillion disclosures to share information, and I hate that even my husband has to ask me what all kiddo has going on.
I hate that he hurts me. Yes, I understand the reasons: trauma and development and delayed attachment and frustration. But I hate that my baby boy, my darling child, regularly kicks and hits and bites and scratches me.
I hate saying, “Kind hands, please.”
I hate how much I rely on his tablet to occupy him.
I hate when people say it’s just a phase. Or all boys/kids do that. It’s not true, and they know it. But no one is comfortable enough to say, “that sounds like it sucks.” Which is what I really want.
I hate that being away from him takes so much planning and money. That we can’t hire just anyone to watch him. It has to be an adult with training, or a respite provider (which is impossible to get), or a rare, understanding friend. Or my husband.
Most of all, I hate that I hate any part of being his mommy. Because I always wanted to be a mom. And when we found out we couldn’t have biological children, I was so happy my husband agreed to adopt. I knew it would be hard. I knew it meant raising a child with disabilities and trauma. And I worked my ass off to prepare for it.
And I hate that our society is the kind of place where parents like me can’t be raw and open. Because I already know some of you are judging me, or calling me a snowflake, or passing by this post because this sliver of my reality is too much for you to bear on top of your own stuff.
But I had to say it. Had to let it out because it’s too hard to carry around on top of all the other shit I have to carry every single day.