talk about it.

14 08 2008

Below is a post from my friend Kristen’s blog. This post was very dear to my heart. I have included at the bottom my response to her post as well:

The point of this post is to be informative and perhaps educational on how to talk to a parent of a special needs child. It is NOT to make anyone feel bad or bash those that have been in an awkward situation. I was hoping by compiling this list it could perhaps eliminate some of that awkwardness. I myself never knew or understood how to address myself in the presence of a special needs child before Cayman came.

Do I look at them? Will they think I’m staring? Will they think I’m rude? Do I smile, should I maybe not look at all?

By no means, am I mad that people do not know how to always react to us as a parent of a special needs child nor know how to react to Cayman. I desire for people to know though. I can understand the shunt is very odd looking and Cayman’s head is not round. Sometimes people pretend they do not see Cayman at all and that is very sad to this proud mama that I am. But I can understand that not unless you have experienced this side of it you might not know what to do.

So I have compiled this list hoping to inform people on how to talk to a parent of a special needs child or directly to the child. In this list, some are our experiences and some are from other parents with a special needs child. I have a lot of faith in humanity, that if perhaps people realize what they say or do hurts then they would probably do it differently.

Things NOT to say to a special needs parent:

  • Never, EVER, EVER use the word “retarded”, no matter what, medically or to describe something stupid. It hurts just the same. Most likely the parent won’t correct you but know that inside they are crying. If they aren’t crying inside most likely they are in visioning themselves slapping you silly :o).
  • Do NOT say “What is wrong with him/her?” That will put the parent in defensive mode and they will not want to continue the conversation. Nothing is “wrong” with Cayman, God just made her special.
  • Don’t say “Will he/she grow up to be ‘normal’?” If the child has a condition that is not something that they will grow out of, this is HARD for a parent to explain and even HARDER for them to be reminded of it. If it’s a baby, their development rarely can be accurately predicted so a parent cannot even answer this question, The parent then feels unless they can say “Yes my child will be ‘normal'” you are “saying” he/she is not acceptable.
  • Don’t stare and if you accidentally find yourself staring and the parent/child catches you, then smile WARMLY AND SINCERELY. Do not give the “poor baby…poor baby” look. Or even worse, look away quickly as if you are trying to pretend you did not see them at all.
  • Children are often curious about people with disabilities. Or perhaps we’re all very curious but a child’s innocence often brings them loudly asking what we adults are wondering only in our minds. If you find your child asking questions about the special needs child in the room don’t just make up an answer. Chances are the parent has heard your child’s questions anyways. It is best to approach the special needs parent very KINDLY and say “My son is interested in your child, can you tell us about her?” This is a genuine question and most parents of a disabled child would not object to such a question. They probably have done it before. It’s actually very disturbing to the special needs parent to hear the other parent tell their child to be quiet or show embarrassment at their child’s questions. Parents who do this are sending out the message to their child that different is not acceptable.
  • If you are approaching a parent just because you are nosy…don’t even bother. A special needs child is not a “freak show”. Only do so out of genuine interest. If you do approach and the parent gives short, sweet, and quick answers take the hint and politely end the conversation. Sometimes and some days it’s just too much to go into a child’s problems and likely they have done it more times than they can count. Some days they just want to feel “normal” too. But don’t let this make you shy completely away from approaching a special needs family. Just be respectful and mindful that short answers are your queue to not keep asking more questions.
  • Never say to a parent “It’s such a shame”. Being a parent of a special needs child is certainly full of lots of emotions but shame is not one of them.
  • Do not EVER say to a parent of a special needs child “We are so blessed to have healthy children.” Here is what that parent will think, “So, I guess God didn’t want to bless me with healthy children. Wow, God, what did I do?” or “So, my child isn’t healthy…does that mean I wasn’t blessed by God?”
  • Do not say to the parent “I don’t know what I’d ever do if this happened to me.”
  • Don’t say to the parent, especially in front of the special needs child, what a saint the parent is, or how hard life must be for them. This actually is pointing out your assumption that the disabled child is a huge burden.

This is how to approach a special needs child and their parent:

  • Treat the child like you would any kid their age. Talk to the child directly. If they can’t talk the parent will answer you.
  • Compliment them on their eyes, hair, smile, outfit, ANYTHING. That always starts things off right.
  • If you are inquiring because there is someone close to you that has a disability somewhat like that child’s, make sure to mention that. It puts the parent at ease and fast. Usually they will be much more forthcoming with information and understand your motive for asking.
  • If you MUST ask “what is wrong” with the child say “Does he/she have a diagnosis?” or “What is your baby’s story?” I was asked this way before and for some reason it was much nicer than “what’s wrong with her.” Do not start the conversation off with this statement though, use the compliments first. :o)

I hope this can help you not feel so awkward the next time you are in the presence of a special needs family. Perhaps, after an outing, they just might go home feeling like they had a great day because people treated them so well.

Thanks for reading my long post today. This one is particularly very meaningful to me.

God bless you!!

Oh, boy do I hear you! I think in “adults” attempt not to be rude- they are often the opposite. Obviously there is something different about our children- I just wish that adults would have the courage to respond the way that children do! I do not find it offensive whatsoever when a little kid points to Miles’ shunt and says “what is that?” it’s honest. I would much rather educate someone about shunts and hydrocephalus than deal with stares and then the *quick look away*. It’s like they don’t want to get caught looking at Miles. I have one adult friend who handles things like this perfectly (I often think she must have had to deal with a lot of awkward situations in her life). From the beginning when we first found out something was wrong she didn’t avoid me and discussing the new baby- she asked tons of questions! I truly appreciated this. What I find most hurtful is the people who are actually pretty close to us who have not taken the time to find out what is going on with our son. One person actually told me she was praying for him to look more normal! I told her straight out- “well we don’t care what he looks like, you can pray for his brain tissue to grow!” As you can see- this is a touchy subject with us Moms!




3 responses

14 08 2008

Kristen did a wonderful job putting all that into words. They are thoughts that I have had many times.

14 08 2008

I think we are all writing a book together. The question is, “Is the cover big enough to fit all of our names (the authors) on it?” :o)

15 08 2008
Kim Podany

if my kids ask about someone i usually say God makes people different, isn’t that cool? or if they ask me a question i usually direct them to ask the person themself rather than avoid them. on another note, we are moving back to lincoln! this weekend! do you still go to calvary?

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