Poems & Essays

02 May

How Should We Define “Special Needs?”

In Mother Words Blog One Response

Our family is somewhere in that gray area. Technically, other parents and some of our peers would place my children under the category of “special needs,” but somehow that doesn’t feel accurate to me. Yes, my children have been diagnosed with numerous conditions that have required specialists, hours of intervention, and years of education, but I’ve never once worried about whether they would thrive as adults. I feel that by placing my children under the “special needs” umbrella I somehow commit an injustice to all of those other mothers out there who will never reach that proverbial light at the end of the tunnel, who experience what it is like to have a child or children who will never be self-sufficient. To me these mothers are the true warriors, the ones who provide care day in and day out to children who may always need it.

I cannot speak for the moms, who deal with profound disabilities, but I can write on behalf of my family, and they don’t like to being referred to as having “special needs.” Our family is not trying to lessen our difficulties or the hardships felt by other mothers just like me. We acknowledge that it can be challenging to parent a child who has a sensory processing disorder or Asperger’s Syndrome or dyspraxia (motor planning disorder); however, our family falls on the high-functioning end of the spectrum. While at times difficult, with the appropriate interventions our children can be taught what does not come naturally. We have medical conditions as well that we must manage: cough-variant asthma, a life-threatening food allergy, and hypotonia (low-muscle tone), but with each “official” diagnosis we’ve gained our family has learned to adapt, change, and incorporate it into our everyday lives with amazingly effective results.

Maybe I’m fortunate to have the maturity of time and hindsight. I have more than a decade of experience parenting children who are different from the norm; however, they are individuals just like everyone else. Today, what was the scary diagnosis of Asperger’s Syndrome seems more like a unique perspective than a special need. My children are intelligent and kind and compassionate. They are the smart children in their classrooms and their teachers adore their love of learning. I’ve been told in some ways that they are wise beyond their years.

Sure, my girls sometimes find peer interaction tough, and they are more inclined to bond with the adults around them. But after years of concern about whether they were connecting appropriately with their peers, I realized that they are not going to live their lives as children; childhood isn’t eternal. And that’s the beauty of it for them. They might not be the most outgoing kids in their classes but that’s hardly a necessity. Now all we wish for are a few true friends and family who accept us for who we are. Connection with others can take many forms, and it doesn’t have to be with someone exactly the same age as you.

As a society we’ve begun to recognize and diagnose many more conditions in childhood that weren’t commonly acknowledged a generation ago; we diagnose behaviors that are different from the norm but not problematic to life prospects. Unfortunately, we lump all of these children under “special needs,” which I feel doesn’t honor anyone in the category. Thankfully we have eliminated many of the offensive terms that used to define a child or individuals who were different, but now “special needs” seems to have become the catch all.

When our family was discussing the topic of special needs around our breakfast table this morning, my pre-teen daughter had a horrified look on her face at the thought of someone thinking she should fall under this category. She protested, as tweens love to do, and said, “Mom, I’m an honors student and can take care of myself!” And, I agree with her. Even as a baby and toddler my daughter had a very strong will to do things her way, and I have no doubt that she will succeed in what she chooses to do. I knew this about her well before I realized she had Asperger’s Syndrome.

If my child doesn’t feel disabled why should I label her as such? I feel like our family has no business being in this category. While there has been an explosion in diagnosis, the everyday jargon used hasn’t kept up. We need to consider whether these diagnoses deserve a label at all. Who defines whether someone should be placed in the “special needs” category? Does the actual diagnosis itself determine this? Should the individual have a say?

It may come down to the person’s perspective and experiences in life. There may be individuals who share the same conditions as our family and find everyday life overwhelming. And, if placing themselves into the “special needs” category helps them in some way cope or get services they would otherwise not qualify for then perhaps the label is important. I will admit we’ve had to use labels and specific terminology to get medical services and school intervention to ultimately help our children become self-sufficient. There are times when labels have their place. For our family, we just don’t need an all-encompassing label to define us. I think it’s important to consider labels on a case by case basis.

For our family a simple adjective seems to sum us up well, we’re quirky. We acknowledge that when seen from other people’s perspectives we appear a little bit odd at times. We’re okay with that, but we are not okay with being defined by our diagnoses.

 

Stephanie Mouton lives in Illinois with her husband and her two little women. When she’s not writing, she often can be found drinking intensely strong coffee and cuddling with her girls surrounded by a pile of books. You can follow her on Twitter https://twitter.com/moutonfam4.

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1 Comment

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  1. AJ

    May 2, 2016 at 6:52 pm

    This is a great article!!! I can’t agree with the author more.

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