Okay - it's my turn to vent...

[Jodi]

I was checking into community programs for Ryan - something that involves dancing/singing, and was directed by my Regional Center to contact a local organization.

The lady who answered the phone told me about some programs that are being offered. She asked about Ryan, and when I told her his age and that he has DS, she quickly replied, "oooooh, I'm sorry these programs are for NORMAL kids" OUCH! - okay probably being over sensitive right now but - I kept at her about each program (probably not the right thing to do - but I was trying to make a point), and with each of her responses, I would retort "So, NORMAL, that is for NORMAL kids" - and each time NORMAL came out of my mouth it sounded more and more evil.

I know what I should have done - explained to the lady in nice nice terms that she could respond with a little more respect... and not be so harsh - but then again - maybe I'm just too sensitive.

BTW - If she DID mention something that would have been appropriate (in my judgement) for Ryan, I would have pursued it no matter what she said.

I don't know if I'm ever going to adjust

Jodi

[Valerie]

Adjust to what?!? Defending your child?? Sorry, nobody likes to have anybody say anything "bad" about their child, typical or Ds or whatever!! (Even if they deserve it! )

You had a normal reaction to an insensitive comment. Nothing wrong with that.

[Ericsmomma]

Jodi,

I don't think you were being sensitive...I got mad myself when I read your post!! The woman isn't a very good PR person for the organization...did you ever try the YMCA? I just signed Eric up for soccer camp and told them he had down syndrome. The woman's response was "the programs are for everyone...we don't discriminate and accept children with physical and mental disabilities." The only thing she asked me was what age group I would recommend Eric be in....the teams are 3yr-4yr olds and then 5yr-6yr old group. She only asked because some of the kids in the 5-6yr. group can be very competitive, and since Eric never played soccer, maybe the younger group would fit him better. I totally agreed, so he will be with the "novices". I hope this will be a fun experience for him. We start in August.
Maybe the YMCA has some other classes/activities your guy will be interested in.
I get frustrated too. I tried to get Eric into a Catholic school (local) but they don't have any programs for him. And most private Christian schools in my area are the same. Kinda sad!
Of all the places that should understand helping those who need it , you'd think it would be the Church. I'm sure its probably a "funding" issue. So I feel like you....not sure if I'll ever adjust either...just do the best we can................Dolly

[ALLISA]

Okay....Okay....

maybe you SHOULDN"T have kept egging her on with the "Normal, that's for the Normal kids".....

BUt man.....


I gotta say.....

I LOVED IT !!! and I would have doen the SAME EXACT THING .....just for my baby !

I wouldn't push like that for ME.....but anyone mess with my babies and watch out for the claws !!

You will adjust.....it's eveyone else who needs to learn to adjust......

And I just had to tell you that I lOVED the response

[Jenifer]

Grrrr....

I feel for you! Today I was calling around to find a new daycare program for Joy, and when I told the director about Joy's DS, she said she didn't mind taking Joy as long as I didn't think her feelings would get hurt by the other kids.

WHAT DOES THAT MEAN???!!!

I felt like asking her if she was going to let the other kids pick on and exclude Joy. Because if that were the case, yes HER FEELINGS WOULD BE HURT!!!

But I didn't. I maintained my composure and was nice. She's calling me back in a couple of days to let me know if they have space (I'll bet they wouldn't take their time like that if Joy were "normal"). Maybe I'll EDUCATE her when she calls back. ;D

Jenifer, mom to Joy

[Emilysmom]

Wow Jodi.....I actually think your responses were very appropriate!!! I think I would have added to each program she mentioned "ohhhhh, that's something my son would really LOVE"! And leave her thinking about how WRONG it is to not even consider him for any of them! (or even more cynical......"ohhhhhh THAT sounds like something my ABnormal son would just love"!!!!)


I hate that stuff like this continues to happen, all over the world, to all of us at one point or another. Many years ago, when Emily was just about to turn 3, we decided that the best placement for her would be our church preschool (we had heard RAVE reviews of this program and were excited for her to attend it). This class would include many of the same children who Emily was with twice a week in classes at church, and she was learning SO much there so it only made sense to me. I contacted our early intervention case manager and she was also excited and we started brainstorming on ways to help Em succeed in this program. After the case manager told me that they would even provide a one on one aide for the church preschool and would pay her tuition to that class, I went to a woman at church who was the director of the preschool. Without batting an eye, she says to me "oh Susan, I never dreamed you would want Emily in our class!! We can't let HER be in our class........it's for typical kids only!" She went on quickly to say that JUSTIN was welcome if he needed a preschool program, but Emily was not. I was too upset to say much, but let her know that I feared that Emily might one day be EXcluded, but just never would have believed it would be at her own CHURCH. GRRRRR. She tried at another time to explain to me that they had to make this rule because of a girl years ago who was deaf and whose behavior was just horrible.......so they decided to rule that NO kids with special needs would be allowed. At that point, I told her that I would always be saddened and appalled by this and would rather never talk about it again. (I know.....could have pushed harder and maybe gotten some other kids included in this class later, but I did NOT have it in me to fight that battle).

Sorry you had to go thru this!!

[Connie]

Susan...

And do you still go to this church?

Connie

[Emilysmom]

LOL Connie.....you know, I almost added this part of the story but figured it was long enough already!

We moved to a new city just over a month before Emily was born, and we joined this church the week before we found out that Em had Down syndrome. While we were waiting to hear the test results, the members of the church could NOT have been more supportive and loving to us...........and we were almost strangers at that point. They had a big baby shower for Emily, and welcomed her with open arms from the day she was born. I honestly can't say enough about how good they all were to our family! So, nearly 3 years later when this happened......I just decided this was not the best class for Emily and moved on in my thinking and we found a much better class. We stayed at this church until Emily was 8 years old and finally decided to find one that was closer to us, since we had been driving 20 minutes each way for all those years. Guess we just THOUGHT it was the perfect class for her.

Susan

[Kristen]

Jodi, I'm right with you! WHat did you do besides point out what a cow that woman sounded like and hopefully teach her a lesson? Nothing wrong with that!

[Connie]

Maybe I'm wrong for doing this and I don't always do it because I want people to be prepared for Collin but, I don't always tell them he has DS because in some cases it just doesn't matter.

Like when he's doing baseball or soccer....I don't usually tell them when I sign him up but when the coach calls I do explain about Collin and that I will be there to help in anyway I can.
They are 5 and 7 it should be that competitive anyway.

I have only been told that 1x about Collin and that's when I called a Montessori preschool and wast told "We don't take kids like that" HELLO what do you mean?!?! I wasn't very nice to her to say the least.

Connie

[CC]

Awwww JODI, Sorry you had to go thru that. HUGS to you girl Sadly some people don't think bout what they say or how they say it Not sure what organization this is you are speaking about BUT they are surly setting them selves up for a discrimination suit against ones with disabilities

WOW SUSAN so much for the theory that Churches are exempt from discrimination and full of loving people, Hmmm

Sadly there is still discrimination against our kids in this day and age BUT the good news is I really do believe its getting better and better and hopefully one day this will be a NOOOO discrimination world all together ;D

CC ~

[Jodi]

Thanks everyone... I'm still a little bugged but I also realize it certainly won't be the last time.

Connie - good point about not bringing it up. I guess I do have options on how I can go about these things.

Dolly - I will check out the Y - that's a great idea.

Okay - I forgot to mention that the lady stated to me "Most of the kids who are involved with our program are abused..." I KNOW THIS SOUNDS BAD but I wanted to say... "so if I beat the snot out of him, will that make him more NORMAL and can he come then?" I know, that's all wrong... but that's what I thought.

On a brighter note, Ryan's swim teacher said he's doing great, and that he is really paying attention/following directions. Yeah!

I was thinking about checking into boy scouts. Anybody done this? Just curious about what you think about it and what it's like.

Jodi

[momofrussell]

Well, we all know here that words don't bug me... but in this instance.. I would be floored if that happened to me! I have never had that happen. But man, I am sarcastic by nature and I think I would have said something like... "and your point is".... or "what ARE you trying to say" LOL.... gheesh...

I DO tell places like that Russell has DS. Only because I need to put him in age appropriate groups, not chronologically aged groups. I have not had a problem yet. And, if someone REALLY does not feel comfy with Russell having DS in their program, I'd rather they tell me on the phone then I get there with him. But, Russell can't handle as much as most of your kids can. So I do need to tell them. He was in one of those kindergym places and had a blast. But he has to be put in with the 2-3 yr old mommy and me class.

If it bugs you... maybe you could call up again and ask for someone else and explain how this lady talked to you. If for anything, someone should know she is discouraging spec needs kids and disrciminating!

A.

[Emilysmom]

Jodi~
Emily has been in Girl Scouts for years and it has been an awesome experience for her!!! I can't say enough about how good it is. She was fully included without reservations from anyone in her troop. Of course, it did help that her troop leader is a wonderful woman who has worked with me since Emily was born, but I think they really try hard to make scouting fun for everyone and do a great job of inclusion in general.
Emily's younger brother has been a Cub Scout and just moved up to Boy Scout. It is also wonderful, but for us there were SO many camp outs and I found it to be a bit hard to keep up with all the activities. He loves it, so we keep on going with him! I would highly recommend it for Ryan. I know in our area, there are so many different packs...........so if you got a less than favorable response from one Boy Scout leader, you could always find another group nearby.

Sounds to me...........for the woman you spoke with, NORMAL means battered and neglected and I sure hope and pray that's NOT "normal"!!!! Sad.

Susan

[nica1]

Jodi, You are not over sensitive, she was rude!!! We have not done boy scouts Adam is not old enough yet. But last summer we signed him up for karate. It has been the best experience. He is w/ the younger group. (He is 6 1/2 and is with the 4and 5yr.olds) It has helped him with listening and behavioral issues, as a bonus. They have a little circle time and talk about respecting and listening, at a childs level of course. And Adam has a great memory so, he remembers all the moves easily. It is also something that is very individual as far as how fast or slow you move onto your next belt. It also helps that the owner has a wonderful attitude. Just thought I 'd share And just wondering is that legal for a community recreation to be able to say no just because your child has ds? I can totally understand if after signing up and going to what ever class maybe, and if it is not working out , them coming to you and saying "this is really not working out, what do you think?" but just saying no with the only reason being, your child has ds just doesn't seem right. Good luck with boy scouts, let us know how that works, it is something we are thinking of trying in a couple of years Monica