Talking About Your Child's Special Needs

I am limited by my vocabulary for giving you a superlative compliment on this post, Melody. The helpful ripple-effect of this post is immeasurable.

What a great blog! I've been reading now for a couple weeks. This is an interesting post. I've been a special needs mom for 9 years now. What happens when your child doesn't have a specific diagnosis that people can say oh okay I get it, or not. My child has lots of different issues he deals with but not a specific diagnosis that makes it easier to explain to others what we deal with. He has many diagnosis. How do we reply to those who ask what's "wrong" with your child? What does he have for a diagnosis?

Thank you, Barbara. Your words mean much coming from a professional.

LauraJ, it is so difficult, I know. For many years I had no dx for two of my sons. My best advice is to re-read my last 2 paragraphs:

"Every child is different, every parent is different, and every situation is different. There is no one-size fits all solution for discussing your child's special needs with family, friends, professionals or strangers.

This is truly one of those issues which must be dealt with from your perspective. Eventually, you will be a good judge of who to talk to and what to say, and it will become a part of what you do (really)."

Really, with or without a specific diagnosis, the special needs of your child remain the same. I feel everything I've stated can still be applied.

I wish you the best in finding the words for which you search. I remember the search, and the difficulty in reaching the point of being comfortable with not only WHAT to say but HOW, WHEN and IF to say it.

You can and will find your words.

I asked the CdLS foundation to send me some brochures. I keep them in my purse so I can hand them out to people who seem interested.

I have never had anyone say the "what is wrong with your baby" question to me yet, however, I have thought about how I would reply. I think I might say something to the effect that "this is really just the wrong question to ask, and please try to think of a kinder way to ask your question."

What a great idea to hand out small business cards. Im going to try this- I think it will be sucessful when dropping off my son with Aspergers at church. The caregivers change each week and its become tiring to re-explain his needs each time. This is a great way to get basic information across discreetly when your child is standing right there. Thanks for the suggestion!

This is a wonderful, much-needed post. Thank you for sharing these hints and suggestions because when you feel prepared for these moments, they make them less awkward and painful. It's empowering.

I had the cards that I carried with me, and you're right, it's a great way to help others understand. I've actually made a few great friends through those cards.

I think it is so important, and freeing, to realize that you can choose what to share and when and with whom.

Great post. Rachel, from Signing Times, just blogged about this on her blog. I'll have to see if I can dig up the link.

Hi Melody – thanks for the great article.

The only suggestion, if I might offer, is to also consider the child's comfort level with the amount of information shared.

Speaking as the special needs kid herself, I have often been (indavertently) embarrassed by my mother asking me to showcase my signing skills to strangers, or pulling back my hair to show my shunt scars.

While she meant no damage – her intent was to educate others – it was hard for a kid who just wanted to be normal.

So – if there are any indications that a kid just simply "doesn't want to talk about it" – it really is smart to listen, so that when they are, it's beneficial for everyone.

My favorite comeback line is "everyone is handicapped – mine's just obvious" (my definition of handicap is something that might make you differet, or especially something that you allow to hold you back from accomplishing your potential – don't we all have those to an extent?)

Many thanks for another great article!

Rachel, thank you for bringing up another important consideration. Excellent reminder.

My daughter saw a child in a wheelchair and she wanted to know why… I answered, God wasn't finished making her yet, so she uses the wheelchair to help her get around…
I think sometimes the "public" sees a child acting out and they view us
(the child and parent)
as needing them—to normalize the situation–
(We are NORMAL !!! Busy dealing in this moment, thanks but no thanks for your imput!)
I have found that letting them see us, the -parents as qualified is the real challenge.–
{none of us WANT to be the poster children for our kids, but that is what happens when we are out in public…}
Thanks for letting me share…my 2 cents!

Stacey

I would think that the " god wasn't finished making her yet" comment infers that she was incomplete in the creation process??!

I find this offensive..God is "done" creating her..as he is with your daughter. The fact that they are created differently should be celebrated and not seem as though the child in the wheelchair is somehow "less than".

Amy

Stacey and Amy,

I think we often have different ways of expressing the same viewpoint which is, we are each created as we should be…no one lesser than the other.

And it is good that we can amicably share our thoughts.