Things Special Needs Parents Wish They Could Say Out Loud (But Never Do)

As a special need parent (I am referring to myself, not my son) there are many 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 has showed a decline in his mobility and cognitive abilities.

I will tell you “he is holding his own”

I will never tell you that 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 D and I could both attend.

I will never tell you that the school rang with another behaviour issue which made me feel like a sh***y mother.

I will tell you I’m a little cranky today, 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 that 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, just somedays 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 to. 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 that you are in the way, sometimes we forget how to be an adult and may speak to you in one or two word sentences.

Trust me that is simply habit.

And do talk, talk about your worries, your fears and your relationships and your wonderful children – this for me, (personally) makes me feel just like you – a mom, a friend, a sister, a partner.

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Geraldine Renton
I am Ger; wife to D and mother to three wonderful boys; Ethan, J and toddling D. We live in Ireland. I write about our life and the lessons my boys have thought me. Ethan has a terminal condition; J has ADHD and the toddler runs the house! We are trying to learn how to live, love and laugh again after Ethans diagnosis (of Hunter Syndrome ) in 2008. Ethan has thought us many things; the three L's being the most important -live, love and laugh. is indeed too short. Follow me at my blog, and Ethan's Facebook page.