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Parents

What Every Autism Parent Wants To Say

I don’t feel bad for myself and I don’t want other people to either.

As an autism mom, I am put in endless situations that make me want to scream, cry, or just go to sleep and hope things are better when I wake up. But it obviously isn’t reasonable for me to do that. I’ve got to be my daughter’s super mom. Her advocate. Her cheerleader. Her one constant that she can always count on when this world becomes too overwhelming for her.

<i>At the Autism Speaks Walk</i>
At the Autism Speaks Walk

So I say nothing. I smile and act like it doesn’t bother me that you’re telling me you’re worried that your two year old isn’t catching on to using the potty… I know it will be years before we even start to entertain the idea of potty training. Even though I am happy for your 18 month old who is speaking in full sentences, I try not to let you see the tears forming in my eyes because my 21 month old has never even said “mama.”

When you’re showing me all the new exciting things your kid has learned to do since the last time we were together, I am trying to think of something MY kid has learned to do that I can show YOU. But her victories are not the same as your child’s. The things my child accomplishes after HOURS of therapy are things you would just consider typical development for your child. So I say nothing. It’s just easier sometimes.

<i>At her developmental pediatrician's office</i>
At her developmental pediatrician's office

I want to tell you that I worry every single day if my child will ever learn to speak. I want to say that although I am excited for your child’s accomplishments, it really hurts for them to be paraded right in front of me. I know you don’t think of how it must make me feel, because you shouldn’t have to. You should be proud of your kid and you’re supposed to show them off and brag on their victories. So this is why I say nothing. But sometimes I want to.

When I’m in the check out line at Publix and the cashier looks at Raelyn and says “Hi there! What’s your name?” I want to tell her that she doesn’t talk. That we spend hours every day working on developing her language skills, but we just aren’t there yet. That’s what I want to say. Instead, I smile and tell the cashier that she is shy. It’s a much more simple explanation.

When I see Facebook videos of kids younger than my child, having complete conversations or singing a song, it reminds me of what Raelyn would be doing if she didn’t have autism. I sometimes watch the video, I sometimes scroll right by, and I sometimes click “hide post.”

But what I WANT to do is throw my phone across the room. I want to review animal names with Raelyn for the 12th time that day, in hopes of her repeating one of them this time. I want to set up MORE therapy for her so that we can potentially get quicker results. I want to comment on those videos, “it must be freaking nice…” But of course I don’t. My heartache is no reason to make someone else feel guilty about their child’s success. But it doesn’t seem fair since their successes cause me so much pain…

I want to tell my friends and family how lonely it can be to raise a child with special needs. I want to tell them that sometimes I am too exhausted to pretend that everything is great. In fact, I honestly can’t remember the last time I WASN’T exhausted. I want them to know that their “bad” days are probably equivalent to my normal days. I want to scream at the top of my lungs for them to stop worrying about insignificant bullshit.

I want to ask them if they realize how lucky they are that they don’t have to call their insurance company at least once a week… hold fundraisers to raise money to pay for therapy and medical bills… schedule play dates around therapy sessions… consider moving to a county that offers autism services in public schools…feel obligated to always do something engaging and educational with their child, instead of just letting them be a kid.

These are the things I want to say, but I know I never will. Because the truth is, talking about autism and all it entails makes people uncomfortable. I am not writing this for pity. I don’t feel bad for myself and I don’t want other people to either. I just want people to know why autism parents are sometimes compelled to say nothing at all… Because it isn’t as painful as saying what we WANT to say.