Down syndrome teen resources/help?

[philosoikou]

Hello there,

We have recently been having some sexuality issues with my BIL, age 17, who has Down syndrome. (I posted about it here, in case the details are of interest. Summary: major physical/sexual boundary issues with my 4.5yo dd.)

I have known BIL since he was 7, but outside of my personal relationship and experience with him, I don't have much experience with DS or knowledge about it.

It has been suggested to me, I think wisely, that I find some DS resources to read and consider. Do you know of any? I would like to consider the problem through the lens of BIL's disability.

I hope this question makes sense.

[AndVeeGeeMakes3]

My brother is 16 and has Down. He's, several times, been a bit aggressive with my dd (4.5 also). Think of it this way: he's developing sexually just like any other kiddo his age, only there's less of a filter in terms of appropriate behaviour. We are just super vigilant and do not allow VeeGee to sit in his lap, and we watch closely when he hugs on her. At the same time, we don't want to shame him, much in the way you wouldn't want to shame a typical child for such feelings. I know it can be scary (and annoying, and irritating, etc. etc.), but as time has passed, my brother has come to understand boundaries with VeeGee (and me, too). Depending on the level of cognitive delay (which varies within the DS community), it may take him longer to get it. In the meantime, you can also tell your dd to let you know if he does anything that makes her feel uncomfortable. Again, nothing alarming, but you can encourage her to stand up for herself.

I am really glad that dd has an uncle who's different (particularly since she has physical disabilities). Hopefully, your dd will learn to appreciate the differences and be able to grow from contact with her.

Here's a good review from NDSS about sexuality.

Good luck!!

[Oubliette8]

I do not know much about Downs Syndrome, but read through this book when it appeared at my library- "Teaching children with Down syndrome about their bodies, boundaries, and sexuality : a guide for parents and professionals" by Terri Couwenhoven

I know you aren't looking for resources for your BIL, but I found it very informative on the issues surrounding sexuality, and appropriate sexual boundaries, in people with DS. Reading it might give you a better idea of what you are dealing with. And if MIL is interested, it might help her approach the subject with her son. I found it listed on Amazon here- http://www.amazon.com/Teaching-Child...5075372&sr=8-1

[philosoikou]

Both such very helpful responses. Many thanks!

I will order the book you suggested from the library, Oubliette. Perfect!

AndVeeGee, your own experience helps a lot. i think my dh and I are still in the mode of wanting to let MIL take the lead (not long ago, BIL was just a little kid, she was his mama, and we were kids ourselves!), but it's clear that she can't/won't, and we need to step up to the plate. You description helps loads.

Another question: any books for children about an adult relative with DS/other intellectual disability? Through the conversation on my other thread, I've realized that I should take a more assertive role in teaching my dd about her uncle. I have found and ordered a couple of good children's books about peers with DS (My Friend Isabelle, for example), and that will help to open the conversation. But is there anything available that might be more geared towards a child with a DS adult in her life?

Thanks again!

[AndVeeGeeMakes3]

HERE's a link to some books about siblings (and, really, that's kind of how VeeGee and my brother, Ben, relate to each other).

One thing that's really been neat is that, because my brother is being educated to be a self-advocate, he is very aware that he has Down syndrome, and that he has special needs. Because of his awareness, he's very protective of my daughter as well. Also, they share some interests. He's now "too old" for things like The Wiggles and Barney, though he really really still loves them, so he gets to share those things with her (a way for him to still be connected to some things that he's being otherwise encouraged to "outgrow"). So, whenever one of those traveling shows comes to town, he invites VeeGee to go as his "date." That way he gets to see something he wants to, but he also gets to feel like the big uncle.

Back to the sexuality thing, relative to you MIL: it's often very difficult for parents of kids with special needs to acknowledge these behavioral issues. We spend a lot of time just trying to keep our kids alive, advocate for their education and health needs, educate ourselves, etc. etc. So, when we're home, it can be very easy to turn a blind eye to behaviour that may make others uncomfortable. So, it may not be that she's not willing to take the lead, but, rather, that she just doesn't see it.

In our case, we decided that it was best to not "tattle" on Ben to my parents because that would make it a bigger issue/event than necessary. Making a big deal out of it can backfire on you because, if he's feeling the need for attention in a social situation, he might "misbehave" just to get that rise from you. If you treat it firmly, but quietly, he's less likely to get the additional pleasure from getting to you. Does that make sense? My husband just goes in and makes sure that VeeGee's not in his lap, and him being aware, opening the door if one of them closes it, and checking frequently (they like to go in Ben's tv room and watch videos), seems to make Ben aware that we're watching, and therefore helps him remember not to do the offensive behaviours.

Hope that helps.

I'm very glad that you're becoming interested in teaching your little one about her uncle. Hopefully that will help develop compassion and understanding in her, and, maybe she'll develop a sweet friendship!

[philosoikou]

Everything you've shared has helped a lot. Thank you so much!

You're right about MIL being more than willing to turn a blind eye whenever possible. She's had a tough go of it with BIL, no doubt. She has also always relied too much on my dh (who was only 10 when BIL was born) to be an ersatz father figure. She is profoundly uncomfortable about all things sexual, and is simply incapable of being frank with BIL (or anyone else, for that matter). And finally, she's a very emotionally repressed person, who would much rather la-dee-da her way through life than confront difficult feelings and situations.

I know this sounds harsh. She is also loving and has tried really hard. But she felt much more at ease when BIL was little. Her background is in early ed., so she felt, I think, empowered and capable when BIL was in preschool/elementary. She has been -- and she readily admits this -- extremely ill at ease ever since he entered middle school. She wasn't comfortable with this terrain even with dh. Honestly, I think she carries around a lot of fear about it. But anyway, she hasn't been as good at finding services, mentors, etc. for this age range as she was in the early years.

We would love to help her find this sort of thing. Is there a resource that lists services, support groups, therapists, etc. for DS by geographical region?

What you said about your dd being a link for your brother to things he's "outgrown" is very familiar. BIL is the same. I have been hoping all this time that the uncle role would give him an opportunity to step up to the plate and play an adult role. (He has always been excessively babied/"dumbed-down" by MIL, and not allowed to rise to the occasion very often.) We have tried to guide him in this. But our visits are always infrequent, and now this recent turn of events makes me want to just pull the plug.

If we lived closer and could do short, very supervised visits (a couple hours), I feel this would be easier.

One more question for you: you said you've made some clear rules, like no lap-sitting. This makes a lot of sense. I've been avoiding doing this because I don't want to introduce shame. How do I tell dd that she can sit on other laps, but not her uncle's? ("Why, Mama?) How do we tell him these rules without shaming him?

Thank you for the continued conversation.

[AndVeeGeeMakes3]

I'm so glad to be able to help!

As far as the rules: Ben knows that there's something kind of off in the lap-sitting, so it was just a very subtle, "Hey, buddy, none of that" kind of thing. She's none the wiser, really. Because of entirely separate issues, she's unlikely to let him touch her in any other inappropriate way, so I don't worry too much about it. Basically, she doesn't want to (is uncomfortable) sit in his lap, because he kind of bears down on her (pushes her against his privates), so he's actually held her down (now this sounds worse than it is, though we do take it very very seriously). She wants out, when she's there. He knows he behaving inappropriately, so calling it, quietly, to his attention really does the trick.

There are definitely resources for your BIL and MIL with support groups, advocacy, etc. I think it's really easy to fall into babying kids with DS, partly because society has a tendency to characterize them as infants, or "sweet forever-toddlers," when, in fact they, most of them, do mature significantly, have relatively mature concerns and ideas. The National Down Syndrome Society could point you/her to local resources. You can also see there about self-advocacy and life transitions.

Please don't pull the plug on this relationship. It can be a rewarding thing for everyone, and, you never know, your BIL really might develop into an uncle that you'll enjoy allowing your daughter to be around, even learn from.

Just because I'm a proud big sister, I'll share THIS video of Ben leading the Hokey Pokey at a local restaurant. He "sings" with this band (Nancy Apple) every Sunday night. He's also a member of the dance troupe called Company d, which is made up of young adults who have Down.