Are Kids with Type 1 Diabetes “Special Needs” Children?

A few days ago, I found myself telling a colleague that I couldn’t attend a conference, as I try not to travel much any more. “I have two young children,” I explained in an email, “and of them is a special needs kid.” 

Wow, did I really write that? I did. Did I mean it? I don’t know. It makes it easier when communicating about my limitations at work. “Special needs” can mean all kinds of things, but everyone realizes that it translates into extra parental responsibilities. That is true for parents of kids with type 1 diabetes, but are our kids “special needs?” 

I’m uncomfortable with saying that about my son. He’s psychologically and physically healthy, well adjusted, easy (for the most part) to get along with. He does have this one whopping physical problem that sucks up so much of our time and energy. But is this “special needs?” And why do I even care?

Part of me hates saying “my son has type 1 diabetes.” Outside of our little world, no one knows what that means. I never knew until my son was diagnosed at the age of two. So it makes life easier to just say “special needs.” But I’d better think about this carefully, before I wind up labelling my boy in a way that is inaccurate, or that will cause him upset later on. 

What do you think?

Comments (7)

  1. Celeste at

    We have never described our daughter as special needs.  The only context that special needs is used in our world is in her 504 meetings – as in “she needs to be able to go to the bathroom whenever she wants” “she needs to have snacks when she feels low”.  Our daughter was dxd at 7 and is 17 now.  I would be very very careful when using that terminology.  In fact, we call what you did “pulling the diabetes card.” As her parents we aren’t allowed to do that unless she gives us permission. 

  2. Celeste at

    We have never described our daughter as special needs.  The only context that special needs is used in our world is in her 504 meetings – as in “she needs to be able to go to the bathroom whenever she wants” “she needs to have snacks when she feels low”.  Our daughter was dxd at 7 and is 17 now.  I would be very very careful when using that terminology.  In fact, we call what you did “pulling the diabetes card.” As her parents we aren’t allowed to do that unless she gives us permission. 

  3. michelle at

    No easy answers.  But I can see how sometimes it gets people’s attention when you need it.  I applied for the disability tax credit and now my accountant uses my “disabled” status to our advantage for taxes.  I don’t feel guilty about that, even though I don’t feel disabled.  I know I have special needs that are not recognized by most of society, so if that is the language we have to use with the govt i am ok with it.  But i have never used it with people in my personal life.  Maybe part of it is that you just need to feel comfortable saying you don’t want to travel and and not needing to justify it!  You deserve to make those decisions for family life! :-)

  4. Jessica Apple
    Jess at

    I completely understand not wanting the label of special needs.  I think though that ultimately we diabetics undercut ourselves by being so strong and doing so well.  The more “fine” we declare ourselves, the less we get.  How can we convince the world that everyone with diabetes needs a CGM if we’re fine?  How do we get more funding for cure research if the disease isn’t such a big deal?  

  5. Leann at

    I’m with Jess – we undervalue the amount of work we do, even if you are successful. While it might be emotionally uncomfortable to admit it, we do have special needs. We can’t justify more money for research if we don’t have a real need. I have a diabetic alert dog – do I or don’t I have a right for one? Yes, they are needs, and they are special. I don’t call it it pulling a “card” – it’s called the truth. If you child needs special accommodations to allow for lows during testing, but you claim you don’t have special needs, why should they grant that permission? Label or no label, reality is that for each diabetic we may or may not need certain things to be adjusted in order for us to live as healthy as we can. I’m very grateful for the understanding of those who have accommodation plans in place in order for me to do what I need to do.

  6. Anne at

    I’ve referred to my child as having “special needs,” but only in the context you describe: trying to make it clear in the workplace that our parenting responsibilities go beyond the typical. The term “special needs” only makes me uncomfortable in that our challenges are minimal in comparison to the ones faced by many parents of special needs children.  Usually i say my son has a chronic illness. I find that most people are unfamiliar with the demands of raising a child with type 1 diabetes and using the term “chronic illness” better conveys a sense that  my child needs extra care. 
    While we have never encouraged our son to use diabetes as an excuse to get out of things, we also recognize that this illness is indeed hard on him at times. I don’t think asking for consideration of that reality is “playing a card.”

  7. Liam at

    There is nothing wrong with having special needs.
    Yes, I have a special need. Its called, having to be your own pancreas. Diabetes for short. :)
    If I need to stop to take my insulin, while my colleagues do not, would you not call that special?
     
    And besides… Us T1s are special in a whole lot of ways, disregarding our illness… :)

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