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Sharing the Truth About My Special Needs Child

Parenting a Special Needs Child

An interesting thing happened to me this week. I am preparing for my special needs child, Marky’s, IEP (Individualized Education Program), which always causes me such anxiety. I decided to call a friend to vent and share some of my feelings.

When parenting a special needs child, when do you stop being positive and start telling the truth?She asked: “How is he doing in school?”

I replied: “Great, he never complains, he goes with the flow and is so easy.”

Her response? “You are so lucky!”

I got to thinking, why do I say great? Why do I say he never complains ? Why does she think I am lucky!?

I realized, the quality I dislike most in people – lying – is just what I did and do.

What could I have said in response that would have been the truth?

Here it is:

“Marky doesn’t yet have the ability to tell us how he is doing, he has all of his work modified and we never really know if he grasps half of what he has coming at him.”

I’m aware that even adding YET there is a stretch. I could go on with, “We fight for him because he cannot and we are’t willing to say he can’t reach certain goals, we would love and welcome his feelings on this, but he doesn’t know how to.”

LUCKY? NO, we are NOT lucky, he is NOT lucky and this is not a way you would want someone you care about to live.

Why I Lie About What It’s Like

It was not my friend’s intent to trigger this response, I also know sometimes we say things to try to make someone we care about feel comforted. I appreciate that all, but the truth is I am scared and I “lie” to myself and to all of you because I don’t know how else to do it all.

I don’t only “lie” to keep it easier for those of you that do not live it every day but I “lie” because the truth and the fears are bigger than I am able to grasp.

Maybe it’s easier, but is it better? I don’t know.

So for today, I feel better knowing I did not “lie” here and I promise to keep trying all I can for this guy that needs us in ways many I do not understand.

Read more from Carissa Garabedian on KnowDifferent.net.

Carissa Garabedian

Carissa Garabedian is the founder of KnowDifferent.net. She loves to cook, read and be with her family. She is also passionate about having all communities be sure to include special need families be included in local events. Instagram: Carissa66RVA

Shawn

Friday 3rd of March 2017

I don't have a special needs child. Actually, my only child was killed when she turned 18. With that said, I have learned that telling the simple truth works best. People are generally kind and compassionate. You won't hear those heartbreaking words "You're lucky" because they will realize you and Marky are not lucky, and that you both have a very hard row to hoe. I have also learned telling simple truths somehow allow others to tell their own simple truths. Blessings.

carissa garabedian

Friday 3rd of March 2017

Shawn, I am so sorry for your tragic loss, I cannot imagine how hard that was and is. I will pray for your continued strength. Marky brings me joy in his simplicity, but there is sadness.

carissa garabedian

Thursday 2nd of March 2017

Thanks for sharing this Midlife Blvd. It was a tough one for me to talk about

Anne Parris

Thursday 2nd of March 2017

Thanks for letting us publish this, Carissa. I think it's powerful and very helpful for other parents of special needs kids. Also, I'm in Richmond too if you ever need anything!

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