“What’s wrong with her?” “She’s sick.”

Raising a child with special health care needs comes with many challenges.  There are some really high highs and also some really low lows.  As parents we love our children and we see them go through so many changes as they grow and deal with the things that come with their varying diagnoses.  We want our children to enjoy life, be involved in their communities.  We want them to be able to do things with and like their peers.  You know, things like, going to the movies, shopping, out to eat, etc…  We don’t want them to be seen as wrong or sick!

I cannot count the times we have been having a good day, on outings, Target included and a child sees Kerstin in her wheelchair and they stare and will ask their parent(s), “What’s wrong with her?” “Why is she in that chair?”  Too many times I hear the parent whisper, “She’s sick.” NO!  And that is exactly what I have started to say without explanation.  When I overhear that answer, I just politely say “No.”  When a parent tells their child that there’s nothing wrong, and to speak, we usually spark a conversation.  They are receptive and seem to want their child to be as well.  It warms my heart, and I am sure the hearts of other parents of children with special needs as well, when parents of children without those needs are open and want to make sure their child speaks and understands diversity. 

Having a disability or special health care needs does not equate to sickness.  Cerebral Palsy is not a sickness, it is not contagious.  Epilepsy is not contagious.  Yes, our children get sick, so does everyone.   When a child/adult has a disability, it usually takes them longer to overcome general illnesses.  Using a wheelchair, wearing glasses, AFOs, neck supports and other assistance in NO WAY means the person is sick.  When Kerstin is sick, she definitely will not be in a restaurant, a movie theater or her beloved Target.  That is something we just do not do.  The only time she is outside of our home while sick is to go to the doctor or unfortunately when she is hospitalized.

So, when you see a family out enjoying their day just as you are and your child asks, “What’s wrong with her (him)?”  “Why is s(he) in that wheelchair?” Be sure to tell them, that nothing is wrong, she needs the chair to get around and go places, say “hi”! 

Movies!

     "Inside Out"!  We really enjoyed the feelings and emotions of "Riley".  Really cute movie!  

Does she live at home?

     "Does she live at home?"  When you take your children to the doctor or they have been admitted to a hospital, do the doctors and nurses ask you does your child live in your...their home?  I cannot count the number of times I've been asked that!  Every time I'm asked, I always get a little bit upset.  I often wonder is it because of Kerstin's disability.  Could it be because she is now 12 and cannot do anything for herself?  Could it be the fact that I am a single parent to a child that needs care around the clock?

     Whatever the reason, I think there should be a way of knowing that bit of information without having to ask the PARENT that is sitting right there with the child!  I am pretty sure that if a child is being admitted to a hospital from a nursing facility, that information is readily available on forms and identification!  

     Just this year, back in February, I had a doctor ask me, if Kerstin lived in our home?  YES!! The questioning went further, do you think you will be able to continue to keep her in the home?  I was thinking to myself, "Do you ask other families this?"  If their child can walk and talk and do for themselves, are they asked these kinds of questions?  I told him, "As long as I'm able to do for Kerstin, she will live in HER home!"

     Do you ask or wonder if your friends and family members with their so-called "typical" or "normal" children, if they will keep them in their home?  Do you think you will be able to keep them there?  If it is not a thought that has crossed your mind, then think about that friend that has a little girl in a wheelchair, she can't walk, talk or do the things her peers are able to do.  How many times do you think she's been asked if her child lives at home?  What about the times doctors, nurses and others have wondered how long the child will be able to live at HOME?  

     It happens more than you realize or care to think about.  It hurts to be asked those questions!  It hurts to think of your child not being able to stay in the home they have known.  Some decisions are hard and they have to be made.  That is up to the individual's family, when and if that time comes.  For now,  as long as I am able, Kerstin will live in the home she's been in for 12+ years!

"There is nothing like staying at home for real comfort" 
~Jane Austen