Do you ever get discouraged that people see your child's DISabilities before their...

[lovemy6sweeties]

Abilities? It makes me sad sometimes that people just look at Brady and put him in the Down Syndrome mold. I even find it happens at school - he has a cute little friend in his class who also has DS and the aides are forever telling us they mix them up. The thing is - Brady and Michael don't look anything alike and they have very different strengths and weaknesses - so I'm wondering how they have trouble telling them apart. I'm just wondering if you have any great ideas to help other people see past the DS and get to who Brady really is :) Cause he is a might fun little character, with his own personality, a little smarty pants, and loads of fun :)

Thanks for any ideas you can share :)

[amiller]

I'm just wondering if you have any great ideas to help other people see past the DS and get to who Brady really is :)

First of all, I would have a chat with the director of the school because there is NO way that after several MONTHS of having Brady and Michael in the same class, that people who see them every day should be getting them mixed up. Sets off a major warning bell in my head. Second, what I have found to be the best thing in the world is finding a group of adults who know Anyka and accept her the way she is - we were very lucky to find a school where her "disability" is totally ignored. The kids have followed suit, and don't know that she is any different than they are. In fact, one of the first days there, Anyka came home and signed "Everybody deaf like me!" about school. Now, Anyka is probably not Deaf (but a lot of the people she knows who sign are) but her point was clear - for the first time, Anyka felt like she belonged. And I realized that the first step is making grown-ups feel comfortable with her, and then the kids just accept her too.

[Lezliej]

Seeing little Anyka's response reminded me of that book, "Deaf Like Me." Have you read it? It's a really easy read and I found it so interesting!

Have a fantastic day!

[amiller]

Seeing little Anyka's response reminded me of that book, "Deaf Like Me."

Yep, I own it - and I was reminded of that too! LOL

[colleencondon]

When I first got out of college I was a Job Coach and found that many employers always looked at their new employee as the "one with the disability" instead of just simply a new employee. I would always make it a point to talk to the new employee (the person with teh disability) about things that interested them when other co-workers were around.

For example, I worked with a young woman who had CP, used a power wheelchair and used Mayer-Johnson symbols / photo books to communicate. Many people could not see past her complicated physical issues and unique communication style. But whenever we met someone new, I would make it a point to chat with her about the Indigo Girls because they were her favorite band and she met them a few times. This usually got people talking with her and see her great personality come out.

Unfortunately, some people will never see past anyone's disability. Sometimes it is becasue they have no experience with people with disabilities and are just unsure of themself. I remember a company calling me a few years back and asked me to come in and do a training on "how to talk to people with Autism" because they had just hired a high school student with Autism to do some office work and did not know how to talk to him :eek: . I told them that the training would take 30 seconds because you talk to people with Autism just like you talk to people with brown hair! I ended up instead doing a training on Autism in general because they just had questions about the disability that they needed to get answers to in a safe environment.

But I do think that eventually people will pick up on your cues and the people around Brady that know him well. If you are constantly talking about the positive thinsg about Brady, and not his DS, people will eventually do that as well.

As for school, I would ask the aides if they ever get two children mixed up just because they both have brown hair :D

[dmmetler]

As for school, I would ask the aides if they ever get two children mixed up just because they both have brown hair :D
Well, I confused two children/parent pairs two weeks ago in my toddler/parent music class (the mother had changed her hairstyle, and the other pair was absent), so it can happen! I've definitely confused two kids who have the same hair color or some similar physical characteristic. If you have two children, you mean you've never called one by the other's name? It doesn't mean you don't know who they are-just that the brain gets confused at times.

Having said that, I well know what you mean. I'm right on the border between looking "disabled" and not, depending largely on how tired I am, and those around me change more when I decompensate than I do. One thing which really bothered me when it looked like we were moving towards a CP diagnosis on Alli was that it meant that she'd lose being treated as a normal baby by default (as she is now). For example, normally when Alli's in a shopping cart, I use her cover straps and turn her sideways, so she has the two sides to hang on to and support herself. Because even though she's much better at sitting up than she used to be, it still really tires her after awhile. Everyone thinks it's just so cute, because she's so little. SHe can get by.

I really suspect that being considered and judged before people even get to know you is one of the most disabiling things about a disability.

[theresa]

Dear Christie,
I enjoyed reading your post and I know exactly what you mean. I also have a child with DS and I know I worry sometimes how other people might "see" her or label her.
I tend to think it's human nature for people to sometimes stare at or place labels on our children. I think it's also a way for them to cope with disabilities at their level (in a way they have a disability of their own--not to see each child/person as an incredible individual with gifts and talents of their own). I've learned the best way to help other people see past DS is to set the example myself -- in how I talk to Shea or how I talk to others about Shea/disabilities in general. I would definately talk to Brady's teacher and/or aides and tell them how you feel--I would tell them exactly what you told us!

Hope this message helps some. I know it sure helps me just to talk about it! Sincerely, Theresa

By the way, Brady sure is a cutie. We love watching him on ST!!

[aligreat]

My twins go to school in a program that is for both hearing and deaf children. There being deaf is as normal as having brown hair. There are little signs all around the classroom to remind the teacher what each child is working on in various aspects of their education. One little girl is working on saying the M and B sounds with the speech therapist, and so there is a note to blow bubbles for her so that she can practice saying "More bubbles."

In the class there are three little boys, who are of Mexican descent. I am familiar with their abilities and needs, but for the life of me I can't keep their names straight. I have a hard enough time keeping my twins' names straight, but even if I call them by the wrong name I have never mixed up which one is not allowed to drink thin liquids because of aspiration. Hopefully, at your son's school they are only mixing up names--not needs and abilities. I would ask.