What Not to Say About Special Needs
Posted May 8th, 2012 by Michelle NoehrenThis blog was written by Kris-Ann Race for the Special Needs Tuesday column at www.ctworkingmoms.com.
When Max (my son) was diagnosed with Epilepsy, we went into a tailspin. We didn’t know what our future held and what his development would be like. Of course, everyone who knew us wanted to help and offer kind words. I know everyone meant well, but there are things that people said to us, or still say that don’t quite sit well with me. I thought it might be helpful to offer a few things I would recommend you not say to a family with newly diagnosed special needs.
1. God wouldn’t give you more than you can handle. My husband and I are not religious people. We don’t really know that God exists and take no comfort whatsoever in this statement. In fact, it makes me kind of angry. If faith and religion make you feel better about the situation, then by all means, go to church and pray for us. But please, don’t talk to me about it. Also, all of this IS more than I can handle.
2. If anyone can handle this situation it’s you two. Max was given the right parents. Again, I can’t really handle this very well. You actually have no idea how well or poorly I’m handling this.
3. It’s hard to believe there is anything wrong with him. He looks perfect. You’re right, he does. Which makes it harder to deal with all of this because when people can’t see something physically wrong with him, they are more likely to think he just has a behavior issue. However, if there WAS something visibly wrong with him, I wouldn’t want you to talk about that either.
4. Special Needs Child vs Child With Special Needs. My child’s special needs do not define him. He is not a special needs child. He is a child who happens to have special needs.
5. Everything Happens for a Reason. Please, someone tell me, what is the reason that my child has to endure this?
What are some things people say to you that you wish they didn’t?
5 Comments
May 9, 2012 at 7:47 pm by Katrina MoodyYou’ve been scooped! I scooped your story for the Special Needs Parenting Scoop.It Page (drop me a line if you need or want the URL).
I agree with most of your list. But I have an easier time with the special needs child versus child with special needs debate — I tend to err on the latter side when talking about my own children, but I sometimes say my special needs child, or autistic child … I think the main difference is the intent behind it.
You can be respectful of what other people say about it, how they feel about what words you use, and agree or not with their desires – but respecting them means you take the opportunity to understand as best you can. I wince over other folks’ language in regards to my children sometimes … but find concentrating on the intent helps me move past it.
I think posts like this are really important … I might link to it from a similar post sometime in the future.
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Anita Reply:
May 10th, 2012 at 1:53 pm
Thank you Katrina, for sharing your thoughts and for scooping. Would love the URL!
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People can be thoughtless when they are trying to be helpful. I appreciate your honesty in what frustrates you as you try to find the best path for your families and your children. I had similar frustrations with infertility.
I would like to pose a question: Can you provide some insight into what would be helpful. I am a firm believer that it truely takes a village to raise children, but to become that village we need to understand what would be most helpful to you as a parent and to your child.
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May 8, 2012 at 11:56 am by DanielleMy almost 4 year old has Type 1 Diabetes, like epilepsy, a disease that is not one that sets them apart visually from other children. People seem to be programmed to think that all diabetes is the same, and “Oh, so you just have to watch what he eats. That’s not so hard!” Even the school systems do not understand the gravity of Type 1 Diabetes, and how it is NOT the more talked about Type 2 Diabetes which can be managed with proper diet. My son gets his finger pricked every 2 1/2 hours, and insulin administered to correct it and more insulin to cover every gram of carbohydrate the he consumes. He is at risk for going low, and has had hypoglycemic seizures 3 times which required emergency glucagon. All of that frightens every person who might have to watch him, and the many more who will not watch him because that is “too much responsibility.” Really?! Your trying to comfort me by saying it’s not too hard, but when it comes down to it…you wouldn’t even want him in your responsibility. At present, we are having difficulty getting him preschool that I can afford and that will properly manage his diabetes. But so far, all the feedback seems to be that “Wouldn’t he be better off with you?” Right, because working to put the roof over his head is optional.
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May 8, 2012 at 11:55 am by EmmaI also really, REALLY wish people would stop trying to diagnose my child. Everyone knows someone, who knows someone, who’s got a sister, who’s got a kid that has a speech delay “just” like my son has, and THAT kid has autism/ADD/deafness/ADHD/dyslexia/oversized adnoids/etc.
Rest assured: I am AWARE that my son doesn’t articulate words as well as your child who is a year younger. I’m also very, VERY aware that you do not carry to same medical degree as the three dozen doctors I’ve taken him to who have diagnosed him with something other than your friend’s sister’s boyfriend’s dog’s-previous-owner’s baby cousin.
A diagnosis from a non-qualified individual doesn’t make me feel comforted; it makes me feel like you’re discriminating against him by trying to pigeonhole him into some societal, “nook”, to make yourself feel more comfortable.
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