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Have a child with a delay, disability or medical condition - feedback please!

Started by Alyssa , author of Daisies and More 4/20/2010 7:48:22 AM
I have a 2 year old with a moderate to severe speech delay.  I'd say about 50% of the time I mention it to someone, I get a comment that is something like "One day she is just going to wake up and start talking and you're going to wish you'd never encouraged her to talk."
 
I think this is probably one of the most insensitive comments someone could make - it's not at all encouraging or helpful.  Seriously, what parent would ever wish that their child was unable to effectively communicate?  I get so frustrated when people say things like this.
 
I also get a lot of the "so-and-so (either someone they know or a famous person like Albert Einstein) didn't talk until they were 4 and they're fine" etc.  Those comments are easier for me to let slide off my back, but they're still not very encouraging and come across rather condescending, as if I'm just silly for pursuing speech for a child who is 2.
 
I'm sure there are other parents out there who deal with these type of issues over their child that has a delay or disability or medical condition - how do you deal with these type of comments?  Do you address them or just continually let them slide off your back (if so, how do you manage to do it)?  I know people typically don't intend their comments to be rude and insensitive, so I'm often torn between letting it go and explaining to them how insensitive their comment is so they are aware of it.
 
In general I am not a person to get easily offended or bothered by things like this. (For example, in my mother-in-law's eyes I "starved" my first child despite her obvious chunkiness because I nursed her and didn't give her any cereal until after she was 6 months old - this rolled off my back no problem, even coming from my mother-in-law.)  But the speech issue is something that it is really hard for me to let roll. 
 
Yesterday morning I was sharing with a group of women from an organization that I'm in how I was excited that Claire has been making some definite progress, and I got a 3-4 minute discussion (which I didn't take part in, but no one noticed) filled with "she'll be fine" and "you'll wish she'd just shut up", etc, and it was SO hard to just sit there through it.
 
Alyssa

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Reply by Sarah

author of Confessions 4/20/2010 12:22:21 PM

Hi Alyssa,

What a rough situation! I'm wondering if people are making those kinds of comments because they feel awkward about your situation or they want to make you feel better about it. Whatever their intentions, I agree that those comments are inappropriate.

I'm not a parent of a child with disabilities (I just teach them - big difference!!) so my credibility in terms of advice is probably zero. I've been thinking all morning about what I would do and this is the best I've come up with:

Random person: "One day she is just going to wake up and start talking and you're going to wish you'd never encouraged her to talk."

You: "Thanks for the sentiment, but the professionals have determined she's not one of those cases. I WISH she didn't stop talking though!"

It's not golden advice, but it hopefully will get the point across.


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Reply by kim

author of Todays Creative Blog 4/20/2010 10:20:22 PM
Alyssa,
I sorry, it must be very frustrating to not have someone who understands.
I'm sure they mean well.  Sounds like they are trying to take your worry away because they really don't know anything about it.
I think when someone isn't or hasn't gone through a similar situation to anyone going through something difficult.....they naturally come back with something that is meant to be reassuring..... even though it's not to you.
I can see myself being that person.  Good lesson for us all. 
I hope you get some answers, it's never fun worrying about our children.

Are you sure the people who say the former aren't saying it in a light-hearted jokey trying to lighten the situation up a bit sort of way? I know tons of parents who joke about how they were waiting for their kids to start talking (because of course everyone wants their kids to talk and communicate and all) but now "wish they never did, because they don't stop!" and whatnot. It's just something people joke about. I really do not think they are trying to be rude or insensitive, but just trying to lighten your worries with a little humor. I think the best way to let it roll off is to simply remember that, they're trying to cheer you up about it, not offend you. It might also help you and them, if you could politely tell them, I understand you're joking, but my child is truly delayed, so I'm sorry but I don't think that is very appropriate to say under the circumstances. I'm sure if you said that they would be apologizing and saying they didn't realize and mean anything bad by it, and then they'll know for the future.

As for the actual speech, how many months is your child? I worked as a nanny and in a daycare, 6 yrs professional experience, and I can tell you, from the hundreds of children I have worked with, that everyone starts at their own pace. One little girl (who is now 6.5yrs) pretty much hadn't uttered a single word at 18 mos, and continued simply not speaking until she turned 2. At which point it was like she had been listening all that time and storing everything up, and then she just started talking and she really did never stop! haha. Her speech simply took off like a rocket and she never looked back! Quite different than the average child who slowly accumulates and repeats and everything. Anyway, just one example. But really, they all start in their own time. There's certainly no harm in pursuing help though, especially if professionals agree that she may benefit from it. As long as it's done properly and not trying to force anything, but encouraging it in a more structured way, then it can only help, right? =) I'm sure she'll get there.

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Reply by gracie

author of WordPress.com 4/21/2010 8:40:47 AM
I agree with all the posts. I have a cousin who was in kindergarten before he started talking and when he finally did it was full sentences. Be patient. Every child is diffrent. As for those comments, my son has eye issues and is in visual therapy 2x's a week to help--no one noticed my poor boy was suffering untill he was 7 /12 years old , everyone nods it off like " well it will work itself out". As a parent any problem with our child is huge, and we take the entire event to heart, What did we do wrong? wrong food? enough activities?? just smile and nod because everyone wants to be the positive force in an uncomfortable situation. I hope you can find some sanity in this and best of luck with your baby.

I have a child with severe speech delay and she is 12 don't take anything lightly. Make sure to encourage the doctors to keep checking making sure they miss nothing. I have started a blog and love for you to see my journey http://lifewithmydisabledchild.blogspot.com/. Please follow and post comments


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Reply by Karen

author of Family Travels on a Budget 2/2/2011 7:57:57 AM

Hi there,

We experienced the same thing with our daughter. People thought they were being encouraging, but not being understood really hurt. They don't know they're being insensitive to your broken, worried heart.

Do what is best for your child and know that you are doing what you need to do. In the future, God will provide opportunities for you to encourage others. Parents who haven't been through it can't really do that though. It's not a lack of concern, but a lack of understanding.

Having a child with a "difference" opens your eyes and heart to other situations.

God bless.


More Advise too you, also after 12 years of people looking and my child funny and making stupid comments like why is she in a wheel chair and she looks tired. I have finally started to speak up. I used to be like you and say nothing to correct them but the say stuff like that because they are uneducated about children with disabilities. So educate them. There is no better feeling then making a grown adult feel completely stupid for the comments they make. I know people say don't react, blah, blah, blah. But they will never do it again and they will educate others so maybe the next person wont be so insensitive. It is already tough enough for a mother to deal with these issues but to have ridicule to go with it is even harder. I used to have my friend/chiropractor ask me if my child was disabled from recieving her vaccinations. I was shocked. I told him to never speak to me that way again. Even if it was how dare you blame me. he was not a parent yet so he did not understand a mother or parents love.  Its funny because now he has two girls and they were vaccinated. So I love that I was judged and he did the same thing. Too funny. Keep your chin up, you are a strong person and will be just fine. Keep working with your child on their speech also talk to the schools, children with delays get to go to school at three., also look into department of developmental disabilities and get signed up for their services. Its a long wait list and you may not need but just in case you do, now it  important. Just love your child and give them a childhood in the end they are all that matters.


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