when the need to protect stops being hypothetical.

[philosoikou]

I hope I am posting in the right place.

We recently had a visit with extended family that has left me reeling. I need some help talking to my dd, age 4.5, about what happened, and I need some help figuring out how to proceed in the future.

I don't want to go overboard on details, but please ask if there is something relevant I've left out.

For a long time, I haven't felt altogether good about my BIL's relationship with my older dd. He is 17, and has Down syndrome. Although he is very interested in her, and in some ways very good with her (playing games etc.), he has always had boundary issues, and I have been on high alert for physical stuff since she was a baby. It started out with little things that could easily be construed as having been related to his disability (it is my understanding that many people with DS have trouble with social boundaries, affection boundaries, etc.). Ex. wanting to carry on with giving her belly raspberries for longer than was appropriate.

I resolved years ago that vigilance was required, and that BIL and dd ought never to be alone together, if only because he looks like an adult to her, but is not responsible like an adult, and it is confusing to her. Physical/sexual issues aside, it would be way too easy for them to get into an unsafe situation together. My dd does understand that he is "different," but at 4.5, understanding the subtleties of what that means is over her head. As far as I can tell, she thinks of him as 50% grownup, 50% kid, and is a little confused.

Fast forward to the recent visit. Dh and I had revisited the issue in advance and agreed to shared vigilance, making sure they weren't alone together, but instead played in the living room where we could supervise. One morning, when MIL was supposed to be keeping track, I had a sinking feeling and ran up the stairs, two at a time. As I bounded up, I heard his bedroom door click shut. As I approached the door, I heard a suggestive word. When I burst through the door, he looked alarmed and guilty, and quickly started rearranging his clothes.

OMG. I whisked my dd out of there; I told him in no uncertain terms that they were not to be alone together, not ever. I know that nothing had happened yet, but I also feel that I got there not a moment too soon.

Horrible.

The only good news is that this event finally got my dh to understand that I wasn't being alarmist all this time about his brother.

I felt like a real jerk at the time for not having read "Protecting the Gift" yet, even though I had heard of it and *meant* to read it. Since returning from this trip, I have read it, and I will henceforth be entirely unapologetic when it comes to protecting my children.

I feel sick about what [almost] happened. I don't know how to think about it. Does BIL just not get it? Is he acting knowingly, as a predator? Does it matter?

I don't know how to talk to my dd about it. I could really use some help with that. On the one hand, I don't want to scare her or alarm her. On the other hand, probably a certain amount of alarm is called for? She loves her uncle. Although I typically think of her as quite intuitive and wary, she has never seemed to be anything but adoring of him. I am not sure how much to talk about what happened, vs. simply starting to talk a lot more about bodies, safety, private parts, consent, etc. with an eye to the future. BTW, I could *really* use some suggestions (scripts, even! ) for how to start having these conversations.

And I don't know what to do about the future. MIL and BIL live far away, and an in-person visit won't come up again probably till summer, at least, so there's time to think about it. MIL is a good grandmother to my children, and loves them to pieces, but she does not get how very serious this is (even though dh talked to her after this last incident), and CANNOT be counted on to be as vigilant as is necessary. The rest of the visit after the incident I've described was very high-stress for me, with trying to keep tabs on dd every second and MIL lah-dee-da-ing about the whole thing (to be fair, she does nominally take it seriously, but her idea of vigilance is, "Hmm, where *have* BIL and dd gone?").

I am tempted to exclude BIL from visits for the forseeable future, but on the one hand, maybe this is cruel, and on the other, since my MIL has no one she can leave him with, it also pretty much means not visiting with her, which feels... I don't know. Unkind.

And finally, although I have known BIL since he was 7yo, I don't know anyone else with DS, and I feel confused about how much of his behavior is attributable to his disability, and therefore something to be monitored, but not judged; and how much is just plain sinister, predatory behavior.

Thank you for reading this. I am entirely out of my depth, and would be very grateful for any wisdom.

[Juvysen]

I have no real advice, but I couldn't read and not post.

s Thank goodness you got there when you did.

[philomom]

While some of it might be natural curiosity ; ie, no big deal... I would not take a chance with my own kid. I would make a rule that they are never to be alone together, if your MIL can't enforce that then, no more visits to her home. End of story.

[mamazee]

I feel sick about what [almost] happened. I don't know how to think about it. Does BIL just not get it? Is he acting knowingly, as a predator? Does it matter?

I don't know much about this disability. It might very well matter on his end of things as far as accountability goes, but it doesn't matter on your dd's end of things. If she is victimized, which to some extent she has been at this point even though you got there when you did, it hurts her just as much regardless of his disability.

I know it's hard on them, but I personally would not visit in this situation. I would put my dds' safety ahead of being nice and kind.

[philosoikou]

Originally Posted by mamazee

If she is victimized, which to some extent she has been at this point even though you got there when you did, it hurts her just as much regardless of his disability.

I agree with this, and wonder how to address that aspect of things, i.e., that she has already been victimized.

I know it's hard on them, but I personally would not visit in this situation. I would put my dds' safety ahead of being nice and kind.

I appreciate this viewpoint (also expressed by other PPs). What reason would you give? MIL is so in the dark about the whole thing, that I think this would take her out at the knees.

And it's not just about visiting them. Since she has no one to leave BIL with, it also pretty much means not being able to have her visit us here.

[mamazee]

Originally Posted by philosoikou

I agree with this, and wonder how to address that aspect of things, i.e., that she has already been victimized.


I appreciate this viewpoint (also expressed by other PPs). What reason would you give? MIL is so in the dark about the whole thing, that I think this would take her out at the knees.

And it's not just about visiting them. Since she has no one to leave BIL with, it also pretty much means not being able to have her visit us here.

She needs to know the truth for the sake of other children as well. She must have anticipated that as he become sexual in an adult way that there was potential for this? I would definitely tell her no matter how hard it is, and it's too bad that they cant' visit, but you can't bring someone who has proven himself to be unsafe into your daughter's home to victimize her.

[Marsupialmom]

I would visit a board with parents that have Down syndrome. They might be able to help you manage the situation and give your MIL ideas to manage/teach your BIL.

I think you might also have to be more honest to your daughter.

When my Great Aunt started mentally declining she lost her filters and would say ANYTHING! Yes, I did try to limit contact but there were not option at times. She was 90 plus years old and if it wasn't me dealing with her it was nobody sad situation.

I would start family rules, no playing with the door closed -even at grandma's.

No going with anyone without asking Mommy and Daddy first. Good touch bad touch and keeping secrets are not good even from Gma, Uncle, any relatives.

Your bil might not be able to understand his actions. His mind is still at a level that is often, you show me yours I show you mine. But physically he is mature, with adult hormones.

[cocobean]

So sorry that you have to deal with a situation like this! I don't think there is any real ansewer to this. You must be most concerned for your daughter. Your gut is telling you that this is not ok and you should trust that. I agree you should talk to your daughter about good touch bad touch, and maybe tell her what you think about BIL. After telling her what a good touch and bad touch is explain that these rules apply to family members as well, not just strangers and not just adults. Tell her that her uncle is not the same as other adults and doesn't understand these rules. I wouldn't alarm her because what good does that do? Just make sure your are talking to her about this on several occasions because once isn't enough with a 4.5 year old. I was sexually abused by children my own age after they were abused by there DS brother. I don't think that they can really be blamed for what they are doing because they don't always understand but you don't have to play nice because of that. I'm sure if you did some research online you could find other resources to help you out with scripting and such. I try and look for some myself and post here if I find anything. Also if I were you I would not trust my MIL to watch my child if he is there. Not because she's not a good care provider for DD but because she obviously doesn't understand. If you've talked with her and she doesn't get it she's never going to entirely get it. I don't envy your situation but you're doing the right thing in protecting your DD, trust me!!

[philosoikou]

Thank you so much. All of these responses are helping a lot. I am glad I decided to post. Please, keep 'em coming!

Also, I appreciate the "tough love" responses as well. I don't mind hearing the hard facts, and I don't mind being criticized. I already know that I haven't handled this all that well, and do not feel over-sensitive about it. I just want to do the right thing for our family.

Thank you!

[cocobean]

I found this number, it's 365 days a week and 24 hour hotline. They have counselors all the time to talk to about these kinds of things. This website also has many resources for parents to talk to their children about good touch bad touch. Don't wait until your DD is touched. Good luck!!!

http://www.childhelp.org/get_help

1-800-4-A-CHILD

[cocobean]

I think you've handled this very well. You stopped your DD from being sexually abused! It's hard and there is not right way to deal with this!!

[baltic_ballet]

I would cross post this in the special needs forum:

http://www.mothering.com/discussions...play.php?f=157

[claddaghmom]

Whether he is accountable or not, the point is that the situation/opportunity exists. I don't think it really matters at this point. What matters is ensuring your daughter's safety. And then, if it matter to you, coming up with a game plan for future contact with the family.

Unless the ILs have major hangups about their son having DS, I think it will probably be okay to just have an honest yet tactful discussion about it. Maybe they are already aware [of his budding sexuality] and this is simply something that needs to be watched for and prevented.

B/c it is such a serious issue, I wonder if perhaps you are feeling anxiety about discussing this with them....the negative connotations of this perhaps make him out to be a 'bad guy' or 'gross' or 'deviant.' When really it is just something that everyone has to face and deal with.

[HeliMom]

Good for you for trusting your instincts and dashing up those stairs. I would not under any circumstances leave them alone together. It doesn't matter if his disability is the reason he doesn't know what he is doing is ok, it is not safe for your DD to be around him. Period. Again you should feel confident that your mama senses were working.

You and your DH can work with your MIL to figure out when you can spend time with just her. You can all research dayhab programs. If he is 17 and has Downs severe enough to cause him to not understand that physical "experimentation" or what ever he was doing/thinking of doing is wrong, then he should be eligible for schooling till he is 21 and be offered a 12 month school year. There are also many different types of programs for adults with special needs (even sleep away camps), so there are options for your MIL to have time away to spend with your DD in a safe environment.

As for talking to your little one about it. I can't offer too much advice just that it needs to be discussed and reinforce to her that not seeing her uncle is not a punishment to her in anyway. As a survivor of abuse by a family friend I can tell you that children often rush to blame themselves.

Good luck,

[earthmama369]

I've worked with children and adults with DS and he really, really doesn't get it. He's NOT a monster. Or a pedophile, or a predator. But he is wired differently and he doesn't understand and, depending on his degree of developmental disability, there's a chance that he won't ever understand. He has all the active and normal hormones of a young man but he has demonstrated that he currently does not have the capacity to differentiate between family member, minor child, appropriate partner, familial love, and sexual love. This is pretty common as folks with DS hit puberty -- a tough period for anyone to navigate.

I know that's blunt, but I think you get it. You've got great instincts and you've been listening to them. Keep doing so. I don't know him, but it sounds like he loves your daughter and she him, and they have real affection and attachment to each other. I would encourage that, if it were my daughter, but you're right...I would never, ever allow them to be alone and unsupervised. I would reinforce over and over again healthy and appropriate demonstrations of affection to him, calmly, like you would to a toddler.

This comes up a lot in group home and assisted living situations and it's common to have trained staff and a life coach help guide and repeat social appropriateness. Friendly hugs that don't last too long, shaking hands, being gentle, etc. Does he have a coach or a respite care worker? Would your MIL be willing to talk with them about working on this?

[rere]

Originally Posted by Marsupialmom

Your bil might not be able to understand his actions. His mind is still at a level that is often, you show me yours I show you mine. But physically he is mature, with adult hormones.

This describes my husband's uncle.He does not have downs syndrome but a brain injury that left his mind like a child.He is very physical and LOVES the ladies.However someone obviously taught him about what is and is not acceptable.He loves to hug but is very careful.You can tell he makes an effort to not accidentally touch anyone's boob.

I think your MIL really needs to step up and teach her son.It doesn't sound like she is acknowledging the fact that he has the hormones of a 17 yr old boy.Do you think there might be a class in her area to send him to?Or a class for her to learn how to teach him what she needs to?

[rere]

Originally Posted by earthmama369

This comes up a lot in group home and assisted living situations and it's common to have trained staff and a life coach help guide and repeat social appropriateness. Friendly hugs that don't last too long, shaking hands, being gentle, etc. Does he have a coach or a respite care worker? Would your MIL be willing to talk with them about working on this?

I cross posted with this one but that's the kind of thing I was thinking about.

[smeisnotapirate]

Originally Posted by earthmama369

I've worked with children and adults with DS and he really, really doesn't get it. He's NOT a monster. Or a pedophile, or a predator. But he is wired differently and he doesn't understand and, depending on his degree of developmental disability, there's a chance that he won't ever understand. He has all the active and normal hormones of a young man but he has demonstrated that he currently does not have the capacity to differentiate between family member, minor child, appropriate partner, familial love, and sexual love. This is pretty common as folks with DS hit puberty -- a tough period for anyone to navigate.

I know that's blunt, but I think you get it. You've got great instincts and you've been listening to them. Keep doing so. I don't know him, but it sounds like he loves your daughter and she him, and they have real affection and attachment to each other. I would encourage that, if it were my daughter, but you're right...I would never, ever allow them to be alone and unsupervised. I would reinforce over and over again healthy and appropriate demonstrations of affection to him, calmly, like you would to a toddler.

This comes up a lot in group home and assisted living situations and it's common to have trained staff and a life coach help guide and repeat social appropriateness. Friendly hugs that don't last too long, shaking hands, being gentle, etc. Does he have a coach or a respite care worker? Would your MIL be willing to talk with them about working on this?

Yes to this.

Depending on the severity of his DS and his ability to function, you could have many issues here.

You need to talk to your MIL about what happened. Let her know that maybe it's time for him to be getting a "buddy" who can help him with these difficult situations. He needs to have another man who is trained to work with him through these weird feelings.

They should never be unsupervised, but that is YOUR job, momma. It's not your MIL's (unless you leave your DD with her, which I wouldn't recommend until she's shown awareness of what your BIL is going through).

Meanwhile, you need to talk to your DD about your BIL's disability, and that means you need to learn about what it means to have DS. Check out some books from the library (there are LOTS of great books at the early school level on DS), and talk about how he's different and how she's feeling about what happened.

Please visit them - don't cut them off. Your BIL needs help and understanding, and with a little bit of vigilance from you (and hopefully help from a social coach), it can be a really pleasant time. Disability isn't something that should come between an uncle and his niece - you just need to handle it well.

[Brittee]

Originally Posted by philosoikou

When I burst through the door, he looked alarmed and guilty, and quickly started rearranging his clothes.

Judging by his reaction I think that on some level he is aware of his adult hormones, and that he probably has had some kind of conversations with the MIL about them. The fact that he looked guilty instead of confused makes me think that he is aware of his body in an adult way, even though he may not have the capacity to choose an appropriate outlet. Although it may limit your choices and length of visit, I would recommend staying in a hotel when you go and visit your family. At the end of the day you can go back to your room and sleep peacefully knowing your DD is safe. Then the next day you can gear up your energy reserves for another day of hawkeye surveillance. And if you can still suggest that DD takes naps to MIL, you could even take a break midway through the day and revisit your room to nap in comfort and peace of mind. I would suggest the same thing for MIL and BIL visiting you as well. You need time in a safe place to recharge so that you can face the unfortunate stress of this situation.
I think you are treating this with the best approach possible. I was abused by a family member, and always wondered why my mom let that happen when she told me much much later that I had to be careful with that person because they did questionable things. For DD, I think it's important to instill in her now that her body is hers and hers alone. Good work Mama, and keep at it.

[Storm Bride]

I'm not going to address this from the "how to deal with BIL" side of it, because it's not something I really know that much about, and I think that previous posters have covered it really well. I will emphasize that he's not a predator, imo.

On the other side...my grandfather suffered a brain hemmorhage when I was six months old. Physically, it rendered him hemiplegic. Mentally, it damaged - no, destroyed - his sense of boundaries and appropriate behaviour. He made inappropriate (very) remarks to me, my sister, my female cousins and my friends. He also sexually abused all of his female grandchildren. I'm not sure when it started, but I was very young (I'd guess probably about 2.5 or 3 or thereabouts). It wasn't anything violently physical, as he wasn't physically capable of that.

It came to a screeching halt when my mom found out about it. I guess I was about...8? Maybe 9? Something like that...still prepubescent, in any case. Mom talked to us about it several times. The gist was that we knew grandpa wasn't "okay", and that this was part of it. It wasn't our fault - it was because he was "sick" (not sure what other words she could have used, but we understood that one). After several years of being told my my grandmother that it wasn't his fault - which my mind always took to mean it must be mine...who else was there?

Emotional attachment...as things shook out over the years, my feelings of hostility solidified. They were never, ever directed at my grandfather, which some people find odd. But, while I couldn't understand all the ramifications of it, even my child's brain understood that grandpa wasn't "normal". It was my grandmother who I came to despise and, eventually (after her death), to pity. She was the one who made the decision to teach us shame, guilt, etc. and the one who then bought us off with astonishing amounts of junk food. I hated her guts...but I didn't hate grandpa. He was seriously physically handicapped, and by the time I was about 12, he was incapable of being any more threat to me than I allowed him to be. I kept my distance, and if he said something inappropriate, I told him it was inappropriate, and that was that. (The only other incident that ever occurred was when he tried to cop a feel while I was borrowing a cigarette when I was about 14 - and no, he had no grasp that he shouldn't be giving cigarettes to his teenage granddaughter, either.) I felt a great deal of affection for him, and visited him in the long-term care facility fairly regular. When he was clear and lucid (much like he'd been when mom was growing up, according to her), he was a really wonderful man, and I loved listening to him talk about his younger days - working and traveling on the tugboats. From the time I was about 12 or 13, I don't recall ever thinking a bad thought about him, and would happily kiss him on the cheek (from the side, so he couldn't grab if the thought should pop into his head) whenever I left. I was sad when he died. The only sorrow I've ever felt for my grandmother is that her life was so incredibly wasted. If I were responsible for writing her epitaph, it would be "she missed the whole point".

I'm rambling. This is all territory I've wandered in my own head many, many times (I'm 41 - my grandparents were both dead by the time I turned 22), but it's not territory I verbalize that often.

Grandpa didn't just lack an understanding of boundaries. He was given the opportunity to violate them by his wife. I'd have very much missed my relationship with grandpa, and I'm glad it was allowed to develop, with safeguards. More to the point...I'm glad it was spelled out to me, in no uncertain terms, that there was something wrong with him, and that what he was doing wasn't okay, but also wasn't my fault.

I don't really know where I"m going with this, OP. When I read your post, I found myself thinking of your BIL as my grandfather and your MIL as my grandmother. She has to understand how serious this is. The actions of my grandparents resulted in a lot of issues among the grandchildren, including a pattern of self-damaging relatonships, a lack of sexual boundaries (eg. describing sex acts between oneself and one's partner in mixed company, and without regard to whether or not children could overhear), a pattern of promiscuity (and I don't mean so much the number of partners, as the attitude around it), an eating disorder, and a lot of other complicated issues. Out of four of us (the girls), only one never despised grandma. Whether you continue to visit or not, her unwillingness to look at this for what it is could cost her any real relationship with her granddaughter.

With your dd, I think you need to find a way to put this that makes it clear that what he's doing violates boundaries (eg. "good touch/bad touch" talk) and that it's because of a problem he has. That doesn't have to mean making him sound like a monster. I actually did like that my mom phrased it as being "sick", but grandpa's issue was different than your BIL's, so I don't know if that would work or not...

Okay - I've typed a lot, and said not much, so I guess that's it. Good luck in dealing with this. I can't imagine how your heart must have sunk.