Special Needs, What a Joke

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Do you ever wonder what a mom feels when her child is labeled? Maybe your child has been labeled. Or maybe you’ll know someone who could use your compassion and empathy. This is where I begin, sharing from my heart, what those words mean / meant to me.

I wrote this in an essay writing class last month. Our in-class prompt was to end with “what a joke.” I knew exactly what I wanted to write.

Because I am grieving.

First, came denial. (And a lot of weight gain and apathy.)

Many months and months later, just recently, came anger.  Once I let myself feel, I was surprised at the anger. I expected to feel sadness, not anger.

Now, I’m more peaceful. I’m closer to acceptance of my new normal. But, when I wrote this, I had just started to deal with all the “stuff” that happened inside me when my kids were labeled. I wrote it to my old self. I wrote it to my demons.

It’s raw. I hope it won’t bother you too much. It was my truth in that moment.

. . .

Special needs. There I said it. My kid has special needs; well, both my kids do if you want to know the truth. Which I doubt you do.

Now you’ll try to shut me up and say, “Oh, I don’t know how you do it” or some other condescending remark to mean “thank God it’s not me” and look at me like you’re glad your karma got you two “normal” kids.

This label is like cement, pulling me into submersion with my nose barely sticking out of the liquid, gasping for air.



What a joke.

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  1. Melissa, Quinn nailed it: No way to fix–and isn’t that the mother’s role–fixing? And Dee when she talks about “letting go of what society tries to put on all of us.” And Barb: You don’t have a choice (freaking or otherwise!). Which is why you do inspire people, so don’t take offense when people are truly impressed and honestly don’t know (and probably don’t want to know) what you deal with and how you cope, day in and day out. What’s obvious from the reactions here: you’re surrounding yourself with people who care, and by sharing what you’re going through, you’re helping others help you. Smart and gutsy and yes, incredibly inspiring. Hugs, K.

  2. My heart aches at the destructive force labels have…for everyone involved. The child, the adult, the teacher… How does this label solve, create, empower, help? Pigeon holing puts children (or adults) in a dark place with a feeling being trapped. Why do we not look at each and every individual as “special needs” if we so choose?

    Aren’t we all special, do we not all have needs? Yes! and each of us needs, wants, feels differently. We are all special and that should be a celebration, not a label, not a destructive place. I love the pieces that make up your daughters, my nieces, that which makes them unique, amazing, and courageous as they walk in a world that sometimes doesn’t quite “get” them. And you…my amazing sister have chosen to honor and respect their very uniqueness – even though that is hard sometimes. Never fear your anger, let it rage at the idiots (okay that’s my own label) that forget (or maybe never knew) the destructiveness of word and actions. And find peace knowing that there is a community of people who love you and love them. Period. No stipulations, reservations, qualifications.

    I celebrate you. I celebrate them.

  3. My experience tells me that both of these statements are true, even though they might contradict each other.
    Label jars, not people.
    The only valid purpose of labels is to open a door to SERVICES.

    I hope that you have many opportunities to discuss thoughts and share feelings with other families, whenever and however YOU choose. You might consider an online support group, a face-to-face group, and books/articles/blogs written by parents. If you discard the trite and the false, you’ll find a lot of information, humor, and supportive folks out there! And there will also be times when you are the one who is sharing info, laughter, or support.

  4. dearest melissa
    your words are powerful and poignant
    i am moved to tears
    and bow in deep honor
    of your experience and of your expression
    thank you for being true to who you are
    for speaking your truth

    what fortune your daughters have — to live in the heart of such a mother
    who courageously chooses acceptance of raw truth over candycoating
    such depth resounds in your voice such a profound impact your walk
    much love and gratitude to you dear dear one