Let me tell you one of the worst things about being Olivia’s mother: she’s too disabled for many things and not disabled enough for others. She’s in this horrible middle place that drives me bonkers. I can’t find anything for her to do. Or I find something and it costs a fortune and because we own a home, we don’t qualify for any help whatsoever. Ever.
I desperately want her to be a part of something. Where she’s truly included. With typical and non-typical kids. Please.
I can’t find anything! We looked into assistance dogs and she was too disabled for one kind and not disabled enough for the other. We looked into training dogs…but that is just for kids who are autistic. She loves to swim, but it would just be her swimming and not with other kids. She does horseback riding, and loves it, but, again, it’s her by herself. I’m going to call and ask about a ballet class. Online it says it’s just for kids with Down Syndrome, but I’ll ask anyway. She loves to dance, to swim, to play. She LOVES being around other girls. She hardly ever goes anywhere or does anything. I want to find something for her to do besides watch movies in her room.
I’ve thought about cheerleading too. She’ll be in junior high next year (Lord help me) and I want her to have a group that she’s part of and included. Do you think I’m asking too much??
Any ideas any of you have, please let me know. I feel like a crazy Mom trying to find something for her. It’s just way too hard.
I just did an “activities” post today. It’s hard. Ella is currently taking a special needs gymnastic class and LOVES it. There are not any “typical” kids in it…and that is okay with me for once. Also I plan on trying Upward Cheerleading, in May they have a special needs cheerleading group and they are paired with buddies. I think she will love it! I so feel your pain on not qualifing for any assistance…none at all. I would just love to have Medicare as a secondary insurance….it would be so lovely : ) Oh well, damn husband and his job. LOL.
what about girl scouts????
I was just going to suggest Upward Cheerleading. I was a coach for several years. It is an awesome program that is inclusive. And, because it is faith based there is a willingness by all participants to not only learn the cheers but strengthen their peer relationships.
Also, what about Girls on the Run? I know Olivia is not able to run a 5K but I am sure you as her buddy could push her in the 5K. That is another incredible program that focuses on self-esteem and character building.
I have no advice because I’m earlier in this special needs game. But I wanted to let you know that I feel you and you’re not alone in this. I so desperately want my Olivia to be able to do something where she feels like she belongs, where she fits in, where she’s HAPPY. She did take gymnastics when she was three to four years old. It was so good for her balance and her strength. She loved being part of the class. It was a typical class and her coath just made a few changes to accommodate her. I’m thinking about putting her back in next year at the same gym. But I also know she’d love ballet and I’m on the lookout for one that would allow her to join and still feel like she belongs. It’s such a hard place to be, that place between severely disabled and not disabled at all.
A class for only Down syndrome? OK I get its not what you need but I’d love it 🙂 You tell them they need to be a little more open minded if they exclude Olivia for not having the right disability. You let me know if they give you any greif and I’ll call and let them have it – seriously we’re all in this together they’d better welcome you with open arms.
But as a second choice is there anything going on with Special Olympics in your area? I know it isn’t exactly what you had in mind but it would give her a way to make friends and do something she enjoys. I’m guessing that being on a swim team like that would allow her a lot of “locker room chat” and such.
Good luck with your search. Keep us posted.
I was a certified martial arts instructor for about five years. During that time I had young students were on the autism spectrum, who had CF, and who had other physical limitations. They were all in the same age appropriate classes, and were only expected to do their best, whatever that turned out to be. If you can find the right school, and instructors, that might be an option.
I agree with Laurie above – look into her school’s girl scout troops! I was in girl scouts from kindergarten through high school and we had a special needs girl in our troop the whole time (I am not certain exactly what her “diagnosis” was, but her limitations were fairly pronounced and we all still had a wonderful experience). Her mom helped out a lot, but she was able to do just about everything we did (camp-outs, volunteer activities, etc) and it was great for everyone involved! Plus, it would give Olivia something in common with the kids she sees at school every day.
I also think it’s a great idea to just call up and ask about ANY activity you think she might enjoy, even if it’s not specifically for special needs kids or if it’s advertised for DS or whatever. I would imagine that a lot of these groups will be willing to give Olivia a shot, especially if you explain that you will be there to be her guide (if it’s an activity that isn’t set up for special needs, that might make a big difference since they may be apprehensive about not having the right equipment, or not knowing what her capabilities are, etc). I think dance sounds like a good place to start, or how about a volunteer group where the kids do stuff like pack lunches for the homeless, organize thrift store merchandise, etc? In my town we had groups called “Tick Tockers” and “Assistance League” and lots of middle-school age girls participated. I can’t see any reason why Olivia’s special needs would preclude her from those types of things!
You are a great mom for working so hard on this stuff. I am sure you will find something wonderful for her!
Gliding Stars Ice Skating
Email me when you can, I have some ideas. 🙂
Girl scouts, Challenger baseball, dance classes and Special Olympic swim team are all activities I have seen kids with a variety of special needs participate in successfully. It all depends of course on the people involved. I especially like swimming for kids with any type of physical disability.
My older kids have life-guarded for Special Olympics swimming – they had months of practices before their big meet. I asked if they thought Janine could ever do that, and they told me, “Absolutely!” Next season, I’m going to check it out. Apparently there were all levels of skill – the kids only had to make it across the pool, even in a life jacket or with a helper.
We have done some things with other more “popular” disability groups – the cerebral palsy group was the most inclusive. One DS mom told me we couldn’t participate in something because it was “only for DS kids”, but even then it turned out we could. So if you get a no, it might not be the final answer.
Last summer we did a community ed class called “Fairy Tale Fun”, which was great, but I can see that the typical peers will move out of that sort of thing long before Janine does… maybe we can squeeze one more year in. Also, Vacation Bible School was unbelievably welcoming! Another special needs mom, who is not even a church-goer actually recommended checking out Christian activities. Also, a coffee shop where we had held some of our special needs parent get-togethers was owned by a nice Jewish lady who told us that every synagogue has an Inclusion Committee to make sure they don’t leave anyone behind. She also recommended the Jewish Community Center in our area for activities.
I’ll add my vote for Girl Scouts. Also what about a music class, like Music Forever Music Together? Those are usually mixed ages and are wonderful!
Best of luck finding something for Olivia. I don’t have any ideas to add to what everyone else has said. Just wanted to say that I’m feeling the need to find something for Helena, too. She’s only 3 1/2. Being the youngest of three kids and having her limitations, she hasn’t been involved in nearly as many things as my boys. Seeing your post reminded me that somewhere in between all my part-time work and therapy sessions and preschool for Helena (not to mention everything that her older brothers are invovled in), I need to figure out something that Helena would like and get her signed up!
Ok, I’m late on reading posts, again… Have you looked into Gliding Stars? I know there used to be a local group. Not sure if they still exist. It’s ice skating for children with disabilities. Incredibly cool program! Also look at some of the Special Olympics programs. I’ll ask around at the office – the folks who work with the older kids probably have buckets full of ideas! I’ll email you if I get more 🙂