Why don't they TELL me their kids have special needs?

[Deanna]

My step-daughter also has tourettes. She is 20 yrs old, and still has very noticable tics. Constantly. When I met her dad she was 11 yrs old. And they had been trying different meds on her, different combination of meds..ect. They never did really find one that worked well..that didnt make her a zombie at the same time. (since she turned 16 she has refused to take any meds. and her tics are no worse than when she took meds). Hers sadly has not gotten better with age. It was determined that her dad had/has tourettes also. And has "grown" out of his. If he is sick, overly tired or stressed..you will see slight tics in him. So she got this from him. (So far, no signs of it with Kadee and Buddy). My step daughters is obvious. There is no getting around it. She lived with us off and on from 11 to 18 (heck she lived with us for a year after that..lol). And I noticed with her when she concentrates on things..the tics are alot more minute. But when she is nervous they are over the top. She will have the complex tics then. She will shrug her shoulder, her neck will jerk towards the shoulder that shrugs, she will grimace and alot of times she will do a kind of snort. (not the throat clearing..hers is more of a nose clearing). When she is upset (sad, angry..ect) watch out..because she may either hit herself (slap on the cheek) or she will grab a big ol' handful of your hair and rip you bald headed almost. When she is relaxed its just simple tics. (normaly of the upper body..arms, hands, neck, shoulder, face, eye, nose). The same tics..just in single or maybe two together. If she is consintrated on something they get pretty mild..and if you didnt know she had tourettes you might not know, just watching her. You would be able to tell something was..different..but you wouldnt be able to put your finger on it. Thats when she will do more the repeat stuff. Like if she is coloring with Kadee and Buddy she will tap the crayon or marker several times..or rub the palm of her hand over the picture several times...maybe a slight eye tic..but everything is very muted when she is really into doing something. (She NEVER vocalizes with hers. From what I understand thats pretty rare to do so)
I never got to my point yet...lol. My point is..hers is obvious. So we never mentioned it. We were very open to discuss it with anyone who wanted to talk about it..to help them understand. But with her the more people would "look" at her, and "watch" to see what Stef's going to do next would make it go crazy for her. She herself..now as an adult is very open about it. She will make jokes..she is okay with herself being this way. And she just wants others too also. She wants to be treated like a normal person. She wanted to go to school to be a hair stylist. We had to really sit down with her and talk this one over. I know it was her dream..but somethings just arent for everyone. And that was something that just wasnt for her. (if she ticced..someone could get hurt). This really got her thinking..about how no matter how hard she tries to be "normal" there will still be things beyond her control. And she wants to help others. So she is getting a degree in child psychology. So she can help kids understand that its okay to be "different" and even though you might not be able to do everything you want to do..you can still do so much.
There was a time I was concerned about Kadee. As she was mimicing Stef. Kadee has always had a very kind heart. And when Stef was around 17 (Kadee was 2) if they were together somewhere and Stef would tic..and people would look Kadee would mimic her. Like if Stef would have a eye tic..Kadee would wink back at her. Or if Stef would have a shoulder tic, Kadee would shrug her shoulders. Not so much mimicing per say. But doing a similar motion to I guess make it look like Stef did hers on purpose. And then it did progress to her doing things (Stefs tics)..but when Stef wasnt around. This is when I started to wonder a bit. But it kinda faded away and she stopped once Stef moved out. She doesnt do it at all now except when the two are out together. She will still do things to play it off persay. They will be looking at clothes or whatever. And Stef will grimace and Kadee will say "yeah..i dont really like that either". Their a team the two of them..lol.
I can understand saying something if the condition can cause the child to be in harms way..or possibly put other children in harms way. Then it needs to be talked about. But I think a simple..please set up a time to discuss this with me kinda thing is best. There is no way you can explain all that needs to be explained in the little tiny line they give you. If its obvious what is wrong..and its no danger to that child, or others I think its best to just let it go.
But this is coming from someone who grew up with an invisable disability. And I had to deal with NOT being able to do things..but no one being able to see why I couldnt. So I had the other end of that ordeal.

 

[saddlupasb]

As a coach of a girl's USAG Level 3 Team with 35 members I have to chime in on this thread. I have seen so many things. lol

If your child has a physical disability that could affect her safety then you NEED to tell the coach. I never see the papers that are filled out when the kids come to me. Parents usually communicate if their child has a problem directly. However last year I had a girl who is deaf in one ear. I did not know about it until about 1 month before our first meet. I think she also has a learning disability. Well my voice is not your typical gym voice so I thought she was ignoring me most of the time. She didn't have classic deafness signals because she was accustomed to covering it up. After I knew, it was so much better! She went from the worst kid to being the most improved.

Several times over the years I have caught vision problems before they were noticed by anyone else. And it always kills me when a little one gets glasses to wear all the time and the parent pulls them off and sends them into the gym without them. We have one Level 6 with a glass eye and one who is blind in one eye, so vision issues ae things that they deal with pretty well.

ADD is another story. I really need to know about that one because these kids learn differently if truly ADD. You have to teach them the whole routine sequence and not just parts.

If your child has an anxiety disorder that has only caused a problem one time, then I don't think there is any reason to point out that she has a diagnosis. Many kids have anxiety issues but don't carry a diagnosis. It affects them every day in practice. As a coach you learn how to work with that specific child to help her be her best.