Mom touching foreheads with son

What I'll Never Tell You as a Special Needs Parent


As a special needs parent, there are many things I will never say.

I believe most parents like me speak in “code.” I’m pretty sure I’m not alone with this.

I will never tell you that today I cried. I will tell you, “It was a tough day today.”

I will never tell you that today I wished I had somewhere else to be. I will ask you to swing by the house, only if you are passing.

I will never tell you that today I got a phone call to let me know that my son Ethan has showed a decline in his mobility and cognitive abilities. I will tell you, “He is holding his own.”

I will never tell you Ethan has a test coming up, which has me awake most nights. I’m afraid of the newest decline. I will tell you Ethan has a hospital appointment soon. I may even ask if you could watch my other two boys so my husband D and I can both attend.

I will never tell you that the school rang with another behavior issue, which made me feel like a sh***y mother. I will tell you I’m a little cranky today, so bear with me.

I will never tell you the real reason I don’t sleep at night. I will tell you I have a slight case of insomnia, or D was snoring so badly last night, or the baby was up…

I will never tell you I don’t want to hear about how great your child is and how much they are thriving. I will smile and cheer along. I do care, but some days it’s harder to look past everything my child can’t do and won’t ever do.

I will never tell you that today I just needed a friend, a helping hand. I will tell you, “Call up and we’ll have a chat!”

Why do we speak in code? For me, it’s easier. It’s hard to be totally honest with your friends and family. It’s even harder to be honest with those who actually want to help and give you some form of support.

The truth is, parents like me don’t want to be a burden. We don’t want to have to ask for help, and we sure as hell don’t want to be pitied.

Well, what do we want?

For you to look. When you visit, just look. You’ll see exactly want we need in that moment during that visit. A simple little thing like a cup of coffee can go a long way. Get to know our special little ones so that when you do offer to babysit, we are happy to take you up on the offer. Visit us. Bear with us as we try to converse. Please never feel you are in the way.

And do talk about your worries, fears, relationships and wonderful children. This makes me feel just like you —a mom, a friend, a sister, a partner.

The author and her son touching foreheads

A version of this post originally appeared on Firefly Friends.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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