Question for Parents of Older Special-Needs Kids

[Anonymous]

I have a question about an issue involving my dad's new wife's daughter. She is 24 and has Down's. She is, as her mother describes her, very high-functioning. She has a job at a fast food place, an apartment and at this age has a boyfriend. She is starting to learn about relationships and she is very flirtatious with men, including her boyfriend and my husband, who she hits on very directly and constantly hugs when she is around. My husband is feeling a little uncomfortable. He and I both grew up in schools that integrated special needs children into our classes and also have cousins our own age with special needs who we are rather close with. In the cases we know of, parents/guardians/older siblings/other care takers often supplement their social queues as they reach a certain age in order to help them engage in what society deems appropriate behavior.

I need to preface the rest of this by saying that I have met my dad's wife and her family 3 times for a couple of hours each time and they have been together since maybe September. I so not have a relationship with her family and at my age, and for personal reasons, I do not seek to be close to them in general at all (she has two older kids as well and I could care less about them as well). I also would mention at this point, that my dad's wife's house is a pig sty. I am not a neat freak myself, but I mean actually dirty. Like crusted urine around the toilet dirty. That's just not the expectation in my house, where I have 1 tiiiiny bathroom and 2 small kids. At any rate, after the last visit, I talked to my dad on the phone and asked if there was specifc language they use with the daughter to queue her that ok, we have had enough touching/hugging for now, or ok, a lady does not say that to a man unless they are romantic. The mother, in general, has a very hands-off approach and I also pointed out that while that is ok for them while they are at home, when she is in mine, I would really appreciate it if she would accompany her daughter to the restroom or at least check after her since she has repeatedly made mistakes that have resulted in my child stepping in her urine twice. I know that my children are not developmentally challenged, but I have cleaned up a bathroom after them many a time and would not expect another person to do it for me while I am a guest in their home.

My dad has moved 3 hours away and I expect the visits to get more frequent. Like I said, I spoke to him. He accused me of being prejudiced against every person with a disability. he said that I have issues and instead of turning down a hug I need to thank God each time I get a hug because she is the one who has to go through life with a disability. I should just accept it as is and be happy to clean her mess in the bathroom from time to time bc I am privileged to have a child who is not developmentally challenged (btw, although I do not have a child who is challenged, my husband and I seriously talk about adopting one in the future as long as we continue to have the means - Dad does not know this - it has been a goal of ours for a while now. And we plan to thank God every single day for that child as well!). My dad also admitted that he could tell that my husband was uncomfortable and said that he needs to do some soul-searching about it. My husband is now adamant that they cannot come back until we have an underdstanding because he is offended that they could tell he was uncomfortable in his own home and refused to take any steps to come to an understanding. he thinks it is cruel to the daughter to put her in situations like this where people may not know her and might be less-inclined to interact with her in the future if they truly do not understand her walk in life. The reason his family members give social queues, he says, is to ensure that they are continually invited and welcomed and because you must provide discipline to every child in the right amount in order to maximize their potential in life, special needs or not. That being said, we are not the experts here and we know this. Hence my post.

I just need thoughts on how to deal with this. If I am truly ignorant and cold-hearted, please recommend a book or a class or anything to help me get past this. I know that part of this is that I really want nothing to do with my father's wife - that is its own issue though, and I don't treat her kids poorly, I just don't call them up to chat or view them as siblings. I also really hate cleaning the bathroom (it makes me cranky for like 30 seconds each time) , even after my own kids, but I do it because it must be done and I feel like I am responsible for it. I care about how my dad feels but moreover, I want to know if I am this bad person my dad says I am so that I can take a step back and re-evaluate what I see in the mirror.

[Anonymous]

(btw, although I do not have a child who is challenged, my husband and I seriously talk about adopting one in the future as long as we continue to have the means -

Please don't. I don't mean to be harsh, but you do sound like you need to get a lot more familiar with special needs populations, in all their vast variations, before you do this.
Sounds like you are never going to be super lovey-dovey with dad's new wife. Not exactly unexpected, but I think that's affecting your patience level and attitude with her daughter.
If this woman had been a neat freak, it's possible the daughter would have been better in the hygiene area, but then again, it might have always been a struggle. There is no magic "template" for
"appropriate behavior for Down's Syndrome",
because there is so much variety: person can have other issues, different levels of functioning in different ways, etc.
Regarding the flirting. The hormones come, regardless of IQ. It's a huge struggle, and it can be sad to see people who clearly long for romantic contact but at some level realize it is difficult for them to achieve in the way they see modeled all around them.
This girl is not going to sexually assault your husband. She is flirty and gives lots of hugs. DH can find a way to shorten the hugs in a friendly and firm way, but again, I think you are putting a set of expectations on "appropriate behavior" that might not be practical.
Please don't read this as me saying that a child with Down's Syndrome can not learn, grow, thrive, and accept rules and expectations--they absolutely can and I get equally frustrated with folks that don't expect ANYTHING and write off a group of people that can really contribute a lot.
Again, due to your hostility to the new wife, it may be difficult for you to see the daughter clearly, but perhaps you can volunteer with one of the many organizations that works with this population. I absolutely urge you to do so before you consider adoption.

[Anonymous]

OP, you have a lot of questions and I'm going to try to break them down.

You may view your stepsister's behavior as seductive and romantic but it may not be meant to be. It may be inappropriate but not sexual. If she hugs grown men, to her it may be affectionate behavior. Yes, she may need to be "cued" (not queued) to be less physical but not because she is seductive or sexual, but because she needs to learn about "Good Touch, Bad Touch" (and that is the name of a great program for developmentally disabled kids who needs to learn to do less affectionate touching. She should be taught about this, but not made to feel ashamed or seductive, because she's not.

There is no reason for your husband to get so overwrought. She's not "hitting on him." And this "a lady does not do this with a man" ? This is silly. This is a person with Down Syndrome. Get real.

As for the urine around the toilet, this girl is physically disabled as well as intellectually disabled. I'm sorry, but that's the reality of gross motor dysfunction. You are very judgmental of the mother's home but try raising a child with special needs. And I'm going to tell you, your standards and your judgmental attitude and your plans to adopt -- they don't go together. When you raise a child with special needs, it is piss and it is shit and it is no holds barred. I think this is what your dad is getting at. No one is asking you to be happy cleaning her mess. But you don't expect that a person can do what they can't do.

I think you and your husband really have some strange attitudes. No one is "privileged" to adopt a special needs child or thanks god every day or any of this bullshit. Your husband's notion that it is cruel to put a disabled person in situations where people do not understand her? How could anyone, anywhere, hope to enter into every situation with perfect understanding? Not every situation is a matter of the right amount of discipline. Sometimes you accept people the way they are. You do your best and you MAKE THE BEST OF YOUR SITUATION. No one is all good or all bad.

[Anonymous]

My kids have different SN but they do have social effects and I absolutely try to teach them what is socially appropriate and what is not. It is part of my responsibility as a parent to teach my children to behave in a way that is socially appropriate and expected, so they will be welcome wherever they go. Come to think of it, that applies equally to SN and NT children.

In this case, I think OP is very reasonable to ask what language the family uses to clue in her stepsister that the hugging/touching has gone too far. In our family, we sometimes say "you're in my bubble," as the kids have learned that everyone has a personal space bubble around them. This works only if there is background learning to go with the shorthand, so it's fine that OP asked about it. It's too bad that the family hasn't provided that to their daughter.

Ditto the urine. Perhaps this stepsister could be taught to check the floor herself? If she is high enough functioning to have a job, I suspect she could. OP, could you tell HER (not your dad or stepmom,) "Jenny, would you please clean up the bathroom floor when you're finished?"

Finally, even if you're out of luck on the details (no easy way to get her to back off or to clean the bathroom), I don't think it's right for your dad to tell you to be just accept it and be grateful your kids don't have disabilities. Stepsister is still a human being, and that attitude smacks of patronization and dehumanization - like, you're not allowed to have human feelings about her, only pity, because she's not a full person. Baloney.

[Anonymous]

OP here.

I appreciate your reality checks, really. I have a few things to say, just to clarify and help the first two posters make sense of my situation. I think that from my initial post, you think that I think that the daughter should have been "trained" or whatever to make less of a mess. I have no reservation that she is doing the best that she can; my expectation is not around her, but around her mother. I would think that her mother would know her daughter's limitations and not expect a stranger (which is what I really am to her and to her children) to clean it up, particularly under the circumstances (I was having family gatherings both times and preoccupied with food, guests, children, etc. and was not in a position to be entirely attentive to one person). And to boot, I had no idea that she had an issue in the bathroom in the first place, otherwise, had I known, I would have seen to it that the bathroom was cleaned before allowing my child to go in there. I have no idea what it is like to surrender to the reality that a child may never be independent in the bathroom, but as I stated, my child has had mistakes in other people's homes and I generally clean it up. It would have been nice to have a set of expectations from her mother that this may happen and you may want to watch out for it, rather than her watching the daughter go in and not saying/doing anything, even after knowing the first time that there had been an accident. And as far as being hyper-critical of the state of the mother's house, I guarantee that you all would have been apalled and would not have wanted your children to use the facilities. Yes, accidents happen, my issue is that it was clear that she doesn't clean them up for days at a time.

As far as the seductive behavior, you are right, I do not think that she is actively trying to "steal" my husband or anything absurd. She has picked up some language that is graphic and I won't repeat it here. I am not suggesting that she knows entirely what it means, but she uses it pretty accurately and only with males. She also goes beyond hugging with my husband (not with me or others that I have seen, however) and it turns into groping/squeezing him in private areas. The mother sees this, sees that my husband does not know how to address it without hurting her feelings and she does nothing. When my 4yo is annoying people, my husband and I have ways of curbing it and if someone else were to care for my child, we would probably share that with them so that they could know how we moderate his behavior without embarrassing him or making him feel like a nuisance. I was just not sure if similar methods are used with special needs kids to help them navigate. Obviously this answer varies, and I will take that into consideration.

I am not critical of the daughter, but of her mother. I feel like she chooses not to communicate at all about her daughter's strengths and weaknesses and how to help a stranger deal with it in their home. I write extensive notes for babysitters when my husband and I go out about allergies, bedtime, making sure that my 4yo uses the potty and what to do if there is an accident. To me, it is about communication. But I gather that some think that there should be no expectation there and I should just accept it and move on. Okay, fine, noted. Like I said, this is not the first special needs child I have been around and others have handled it differently, in ways that have set examples even for how I deal with my own children. But maybe they are the bad parents for not letting their children express themselves through touch in an unlimited way. That's why I ask. My dad threw a bunch of insults my way, much meaner than anything you could say to me to try to make me feel very, very small. In the meantime, he has still not offered any words of concrete advice, any information, any recommendation on reading materials and not even the suggestion that was given here, that I volunteer. Nothing. I am at least trying to look at myself, evaluate myself and deal with this in the way I would want someone to deal with me if the tables were turned. That's all. Really, honestly, and wholeheartedly.

[Anonymous]

OP here again - and just to clarify, I did not say that anyone was "privileged" to adopt a special needs child. My dad said that I was "privileged" not to have one. It rubbed me the wrong way because I don't feel "bad" for people who do and the people I do know who do don't feel "bad" about their kids. I am not thanking God everyday for having children without disabilities more than I would thank God for giving me a child, period, no matter what special circumastances presented themselves. I think you should be equally grateful for all children, but again, I am not in your shoes and that's why I ask questions - to understand better through you what I do not know firsthand.

[Anonymous]

My son has special needs. I sometimes worry that if something should happen down the road--and he becomes part of a new, blended, family--that his new family members by extension might react/be like you and your spouse.
Uncaring. Unprepared. Unwilling.

Your dad sounds like a wonderful person. Don't judge his new wife until you've walked a mile in her shoes. Sorry, just one opinion of a SN mom.

[Anonymous]

I am a little surprised by people's reactions here. I don't think the OP's questions are out-of-line. I think people are reading a lot into what she is saying and assuming a lot about who she is. Maybe the tone could be more compassionate, but the questions are fair.

I think if I were in your situation, OP, I'd respond differently to the different scenarios. The bathroom one is gross but I'd cut the mom some slack. Maybe the daughter is totally fine in familiar places and sometimes has accidents in unfamiliar places. Or maybe not... maybe the mother is exhausted by it, I don't know. But if you can have a little patience with this, it's a very small way of helping your dad/his new family out. In any case, since there is nothing for you to figure out here, I recommend you move on. You either accept it or you don't.

The other situation is different. I think you have to make sure, if this is true, that your dad understands that you come from a place of acceptance and compassion but that want to know what language to use to make sure the daughter acts/touches everyone appropriately. I don't think ANYONE is doing her any favors by not curbing unwanted behavior. It doesn't really matter what kind of unwanted touching, she can be asked to stop.

The one thing I'd urge you to do, OP, is reflect on how you may have spoken to your dad. I just wonder, from his reaction, if you focused very little on the step-daughter, very much on your husbands feelings or on the frustration of cleaning a messy bathroom a couple of times and if you came across as self-centered and unwilling to be welcome his step-daughter. I wonder if your complaints sounded petty next to the very real commitment he and his wife live every day and for the long-term future. If this sounds mean or accusing, I don't mean it to. But I recognize something in your dad's answer that many of us parents of special needs kids have felt... a rush of defensiveness/disappointment/exhaustion/confusion when someone we care about complains about the tiniest fraction of what we live every day.

[Anonymous]

The inappropriate touching may be a sign that she was sexually abused in the past. The mother may not acknowledge the inappropriate behavior b/c she's in denial or feels guiltu for letting it happen if this was the case.

Yiour husband isn't under any obligation to accept a hug from her. If she offers or she tries to hug him, he can say no thank you and move away.

She has to learn that not everyone wants to be hugged and respect their personal space.

I would let the pee thing go. Just wipe it up.

[Anonymous]

Anonymous wrote:([b]btw, although I do not have a child who is challenged, my husband and I seriously talk about adopting one in the future as long as we continue to have the means.

Trust me when I say this. Those of us who have adopted, especially those of us who have adopted a SN child, hear this from every person we know and none ever do. You don't eat credit for good intentions.

Another thing that strikes me is that you think someone should communicate about the strengths and needs of this woman and you liken it to your notes to babysitters. You aren't being asked to babysit. What about just getting to know this woman on your own I stead of expecting someone to explain her. She's a real person you know.

Finally, it would be offensive to this woman to require that she have someone watch her in the bathroom. She has an apartment, a job and a boyfriend. She's a grown up, not a two year old.

[Anonymous]

OP, the problem here is parsing what is a legitimate concern and what is your baggage. You have a lot of baggage. Your father has remarried a woman you clearly don't like and it is coming out in various ways. I get that you leave long written directions for your babysitters. Most people don't and it is completely unrealistic for you to expect this woman to "brief" you on her daughter. I have a son with an ASD and I don't give guests or hosts written instructions nor do I explain strengths and weaknesses. if I knew he made a mess in the bathroom I would clean it up, but I don't always know. I once had a man, total stranger, come out of a bathroom and chastise me because my DS made a mess. It was humiliating and I didn't feel like explaining the situation to this total stranger. Usually my DS doesn't make a mess, but sometimes he gets distracted. We're working on it.

Your father and his wife are not obligated to give you a crash course on her daughter, written instructions, books to read. or anything like that.

Deal with the inappropriate behavior directly and politely. "I don't like to be touched like that." "I don;t like hearing that kind of language." I realize its awkward but there's no mystery here. Communicate how you feel in a respectful way that doesn't demean her. As PP said, you don't need a manual, you need to get to know her. or not.

You are making this harder than it is because of your feelings about your father and his wife. Thats the real issue here and maybe you need therapy to deal with it.

I agree with PP. As the mother of a child with SN I find the whole "I want one too" to be patronizing.

[Anonymous]

I'm with 13:21. I think your questions/concerns/frustrations are legitemate and that your father and his wife need to be more responsive. While it's not hard to read into your posts that you have some issues with your dad, I think you've appropriately expressed your concerns to him about his step-daughter's behavior and inquiring about language to use is spot on. Since your father has not provided that language, you most certainly should communicate directly with his step-daughter when her behavior makes you or your DH uncomfortable or when it's unacceptable. I also think she, her mother or your father should be responsible for cleaning up after her in the bathroom. My 8 yo SN child has toileting issues and I would NEVER expect anyone other than DH or I to clean up after him. I would be appalled knowing he left a mess in someone else's bathroom. Yeah, it sucks to have to clean up after him but it's our responsibility if he's not capable of doing it himself. Since your father has married into this family, he should also be held responsible for assisting his step-daughter. It shouldn't fall on the mother alone. I would certainly be clear to him on what your expectations are before they come over again. If the bathroom is a mess, you should be direct with him, his wife and step-daughter there is a problem with the bathroom and provide them with appropriate materials for cleaning. Downs may be an explanation for this behavior but it is not an excuse.