Wednesday, August 28, 2013

Wall Flower

I've written this post in my head a hundred times, sort of nervous about actually posting it. I don't believe it's true... or maybe I just don't want to believe it's true.

Beth has been a part of All Aboard for gosh, 7 years. She's taken classes, gone to events and the other day I went on their web site and clicked on the link for Pictures. You know, she wasn't in a single photo. Not one of her in the art class, not one of her at the prom, not a candid photo, nothing.

She's a wall flower in the world of wall flowers.

I know it's her personality to be shy and introverted, but when even the special needs community doesn't embrace your child...

At the picnic last week, no one came up to talk to her. She went up to a few people, they'd give her a quick hug and that was it. She'd turn around and come right back to sit with me. She tried to give one of the leaders a hug and every time she'd touch her arm to get her attention, the leader would turn away. I'm glad Beth was persistent. She finally got a quick hug around the 4th time. I felt awful.

And that's also a problem. I felt awful, but it doesn't seem to bother Beth at all. She was happy for the hug and came right back over to me. But this momma's heart was aching.

I've been reading on Facebook recently about other adults with Down Syndrome who are going off to college, running their own businesses, standing up for their independence in court, having surgery so they can continue their passion of dancing. I'm truly happy for them. I'm excited to read about their goals and achievements. They're making strides and opening doors for younger kids to achieve their dreams one day.

But it's hard to read about those kids when Beth is just content to watch TV. I want more for her. But I also have to remember it's not about what I want.

One regret I have is not finding out what Beth was good at growing up. Our other girls figured it out on their own, taking classes in school and deciding what they liked or didn't like. For Sharaya it was photography. Diana has a variety of things she's interested in and is still figuring out what she wants to do with the rest of her life. But she's doing it. Beth never really expressed an interest in things like they did. I feel bad for not exploring that more or forcing her to try new things. I know it's not too late, but some days I feel like it is.

When Beth was in school, I would occasionally send notes to the teacher asking for this students or that students phone number so maybe we could arrange a time to get the girls together, but nothing ever came of it. Even if the teacher wasn't allowed give me their info and instead gave my info to the other parent, they never called or contacted us.

And now that Beth is an adult, people still don't call her or invite her out. She sits in her room watching TV and writing. When we do take her to dances or picnics, she sits with us or she sits alone.

Just like every other social group, the world of special needs has their cliques, their popular kids, their levels of hierarchy. And even in that, Beth is one of the unpopular kids.


Unknown said...

I'll be honest right here and now: I love reading these great stories about people with Ds doing awesome things with their lives. But I worry. I worry that Owen won't do any of that. That he will be fine to work a job and come home and watch baseball. There's nothing wrong with that at all--I do it! But I guess I worry that other parents will think my kid is slouch. He's not, he probably won't be--in fact all this would make him very ordinary.

I think Beth is doing what makes her happy. I know as her parent that with everything you're reading, you're thinking maybe what she's doing doesn't seem to be "enough". But what does that really mean? Is everyone supposed to be a famous dancer, go to college, or own a restaurant? I don't think so; I really don't. There are all different kinds of people, in and out of the special needs community. That makes the world go round.

Anna Theurer said...

Oh Cindy, so many conflicting emotions. I have no wise words. My heart hurts for you, but if Beth doesn't seem bothered by it, then maybe it is okay. It sounds like she really enjoys writing. Maybe that is her thing like dancing is for another adult with Ds?

Angel The Alien said...

I've read a lot of stories and blogs also about super outgoing people with Down syndrome who are doing all these different things. But I've also heard about a lot of people with Down syndrome whose parents say the same things, that their kids are content staying home and watching TV or hanging out with their family. Maybe large groups just aren't her thing. I know for myself, being an introvert, when I try to force myself to get a social life by going out to Meetups and stuff, I feel lost in the shuffle and I'm a wallflower... for me, the perfect social opportunity is with just a small group of other people.
Does the area where you live have any mentoring or buddy programs for adults with special needs? I'm thinking of Best Buddies... they are famous for their programs with children, but they also have similar programs for adults, where they match a person with an intellectual disability with a non intellectually disabled adult around the same age, with similar interests, etc, and they can hang out and do things together. Maybe someone like that could help ease Beth out of her comfort zone, without being too overwhelming? Introverts can get lost in the shuffle when around lots of people with loud, outgoing personalities... sometimes they need their own chance to let their own personality shine and be noticed!

Caz said...

Cindy, I was going to say something similar to Angel The Alien. I'm an introvert, and I can think of social events I've been at where I'm not in the photographs and where I may only have spoken to one person. I'll stick with whoever I've come with sometimes. So I wonder how much of it is personality type and a real preference on Beth's part to be alone or with people who really know her, and who don't expect her to be someone or something that she isn't.
I can imagine your hurt as well. But is nothing that Beth is saying or doing suggests that she is unhappy with the situation, then maybe it really is OK?

Mardra said...

I'm in your boat. Marcus is an introvert. He's a homebody.
And I have to remind myself, what's good for him is good for him. He does like to go to dances, because he likes to dance. But he dances by himself and then comes home. At the end of his last year at school I had occasion to show up a few times over lunch time. he sat at a table all by himself. I was assured the other kids offered to sit with him, but he didn't want to.
But he's not me. He's very happy with this. He also doesn't really have peer-friends. But I'm still working on this.
Long story short - Yup. I get it. As long as we keep giving our children opportunities, it's up to them to follow what they are comfortable with.

Unknown said...

I don't mean to be nosy - but do you know about PATHs or MAPs - is there a place in your area that does facilitated futures sessions for people with disabilities? It is a great opportunity for the person with the disability to share their hopes and dreams and for their circle of support to energize around this to create a life that everyone wants. It worked for Alex and for many of her peers.

Becca said...

Oh, goodness, while Sammi is still only so young, she's a definite homebody, and *refuses* to do anything activity-wise, especially with other people, outside the home. I've been convinced lately that she just doesn't know how to have fun, and am trying to figure out what kind of niche I can carve for her without pushing her in a direction she's not comfortable going in. Beth being happy is certainly the most important part, but I totally get how this concerns you. I wish I had advice. :-( (((hugs)))