Special Needs Parenting Under a Microscope

You know what I find to be the hardest part of taking my severely autistic son out in public…And it’s not what you think.

It’s not the screaming. Or the meltdowns. Or the running or chasing. Or his anxiety. Or managing my stress on top of his.

It’s doing it all under a microscope. The curious stares. The people. The knowing how loud my son is. Knowing what a scene we are indeed making. The praying that nothing really bad happens. The hyper awareness that is needed. The worry.

It’s feeling judged. It’s feeling like an animal in a zoo.

I feel so exposed.

And trust me when I say, I know that people are just curious. I would probably stare too. They see a seemingly ‘normal’ looking child screaming, throwing, dropping to the ground, rolling, and self injuring. I know they wonder. Am I a bad mother? Is he a bad child? Do I have no discipline?

It’s really the hardest part for me.

I wish I could scream….’he’s autistic.’ He can’t help it. We are working on it. We are trying. Your stares aren’t helping.

But I don’t.

Instead, I avoid eye contact. I focus completely and solely on my son. I give him what he needs to get him through. And I know I am doing it with an audience. My every move being dissected under a microscope.

I’d like to say that seven years in, almost eight, that I have iron thick skin. That the stares don’t bother me. Truth, most of the time I don’t notice them anymore. But some days, like today, I felt them in my soul. So many eyes on me as I held my son’s 75 pound flailing body on ground of a train store. Knowing that getting him out safely was going to be nearly impossible at 9 months pregnant.

And feeling trapped.

Our world is so different. Our parenting norm is unheard of. What we allow and praise and teach and work through is so different than that of a typical child. It’s knowing it’s not his fault. It’s not our fault either. It’s our life though.

We choose our battles. We let him run while staying one step ahead. We sit on the floor with him in parking lots and stores. We hold his hands as he self injures and screams. We talk through it. We say ‘first’ ‘then’. We count down. And we do it all with a fake smile most of the time. Covered in sweat. And wait to cry and let out that breath we’ve been holding until our kid is safely buckled in their car seat.

And then we say a silent prayer, a thank you that we all survived, wonder why it has to be so hard and question if we should do it again. It’s trying to find one positive, no matter how small, to convince yourself it’s going to get better. That it won’t be this hard forever.

Cooper has been asking for days to go to Choo Choo Bob’s Train Store. Every five minutes to be exact.That simple fact that he is asking us to go places is huge. It’s new. It’s a direct effect of introducing medical cannabis. After seven years he is finally asking us to go places.

We went. His anxiety was at an all time high. It’s so hard as a parent. We know how badly he wants to go and enjoy himself. We also know that stores, lights, noise, walking calmly, being quiet, people, social norms, and everything else involved with a trip to a store doesn’t make sense to him.

But how do you say no when he asks? How do you isolate him anymore that he already is?

If only we could make his life easier. If he could just relax and enjoy. I’d give pretty much anything.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Comments

  • Sue Craft

    October 14, 2018 at 10:48 pm
    Reply

    Thank you for sharing your heart. You are an inspiration and so brave to be so open and honest about your feelings. I have a […] Read MoreThank you for sharing your heart. You are an inspiration and so brave to be so open and honest about your feelings. I have a question. During a melt down in a public place would you accept help from someone or does the offer make things worse for you? Not everyone is oblivious to your situation - we just don’t know how or if we can help you and Cooper. Thank you and know you and your precious family are in my prayers. Read Less

  • Becki Lewis

    October 28, 2018 at 9:02 pm
    Reply

    Good job mama!!! Public meltdowns are my least favorite, but I feel so strongly that my guy needs to get out too- so we […] Read MoreGood job mama!!! Public meltdowns are my least favorite, but I feel so strongly that my guy needs to get out too- so we push on! You got this! Congratulations on the new milestone!! Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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