“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!  

50 Shades of Hello!

SPEAK!  I will respond... 

      When you are out and about and see a person with a disability do you assume that because they look a little different, they use a wheelchair, they are non-verbal or are blind, they are not worth the effort of a simple "hey"?  Do you stare? Does your children stare?  Do you tell them that it is okay to speak to that person?  Do you speak yourself? When you see a person with special needs, do you see the person or the disability? 

     You know there's a saying that a smile can brightens someone's day?  A simple hello can do the same.  I often think about a song from "Yo Gabba Gabba" that says something like "no one wants to be left out, everyone wants to be included..."  That is so very true!  That is also the case for families, work, school, and community.  No one wants to be left out, or treated like they don't exist. 

     I believe that children reflect their home surroundings before anything or any other influence.  Personalities come early!  I try to speak to everyone I come into contact with.  Verbal or just a head nod or smile.  It could possibly be what someone is needing at that time.  

     Speak to Kerstin, she acknowledges everyone she comes into contact with.  She has not hearing or vision problems.  Ask her her name...we're working on getting her to hold a conversation with her Dynavox, until then, "Mommy" will tell you for her!  Talk to her! She looks UP for yes, she looks away for no and sometimes manages to verbalize or shake her head no.  Speak to her if nothing else.  She is a person too. 

     Hey, Hi, Hello, Hola, Ni hao, Bonjour, How's it going? or a simple kiss on the hand.  My 1 year old niece is adament about kissing Kerstin's hand every single time she sees her.  Now that she is talking she comes over and is speaking to Kerstin before she walks into our home, she makes her way to Kerstin and kisses her hand.  

     She seems to know that Kerstin can't verbally speak to her, but the smile says it all without a word being uttered.  It's love! It's an act of kindness.  Tell others, disability does NOT matter!  It's okay to say "Hi"!


 "A person's a person, no matter how small." ~Dr. Suess