I need advice, enlightment, information, support and enouragement, because I have been dealing with someone with Down's Syndrome on an almost regular basis lately and I'm not sure whether I'm doing the right things and feeling the right way etc.

Some of you might know that I was on TV in my (small) country and am now a musician (not very well known yet, but still a familiar face to some). I have a couple of "fans" who do come to every concert, but one of them - and probably the most dedicated - is a young man with Down's Syndrome.

He added me on facebook, is constantly sending me messages, looked up my private phone number and calls me from time to time. He shows up at every concert and is always in the first row, dancing his butt off and shouting that he loves me and I am his best friend. He is in no way rude or mean and not even suffocating when he calls me once to twice a month (even though I didn't pick up the phone a couple of times, because I simply didn't have the time and energy to).

Last weekend, at a small gig in our hometown, he came to me before the concert (he is always there early to witness the sound-checks and everything, always standing close to me, looking at me) and he sat down next to me as, put his arm around me and said "I am going to get a tattoo with your name and the words 'best friend for ever' underneath. Will you do you same?" and then gently leaned his head against mine. I usually don't like other people touching me like that, but in this case I didn't mind, it was just that I almost started to cry and had to go to the bathroom to cool down a bit.

I give him free entry to every gig and reserve a place in the first row for him. At the last gig I let him come on-stage after the last encore and told the people to applaud him, as he is the best dancer I can imagine having. The smile on his face was huge; he was really happy. I always chat with him for a couple of minutes (even if I actually don't have the time before gigs). I like him and he touches me.

What I can't/don't want to do is take him home after gigs, go to the movies with him or stay over night at his and watch movies (he asks me to all the time).

I read that people with Down's Syndrome are often very emotional and sensitive and capable to sense emotions many other people often automatically ignore.

I'm afraid that my not being able to be his best friend, to make him a band member and to watch movies with him might hurt him, even if it is perfectly tolerable of me to keep this distance. I simply don't want to hurt him.

What can I do? Is the way I react to the things I don't want to do, by simply saying "I don't have enough time now", right? Most of the time I treat him the same way I would treat "completely healthy" people, although he does require special treatment sometimes. I don't want him to think I am his best and only friend for ever, because I simply don't feel up to the task of being someone's best friend for ever. I don't want him to be sad when he realises that, to me, he is just a lovely fan who can come to every gig for free and who I'll chat with whenever I have the time, but nothing more. How can I explain that to him?

Touching story.

Unfortunately I am clueless as to how you should proceed.

Just be careful as you walk that fine line between having a 'fan' and a 'stalker'.

PurpleJedi said:

Touching story.

Unfortunately I am clueless as to how you should proceed.

Just be careful as you walk that fine line between having a 'fan' and a 'stalker'.

Yeah, I thought about that, too. But I somehow have the feeling that he really means no harm and, if someone would ask him about the definition of a "stalker", he'd give a proper definition of it, if you know what I mean.

He is not being bluntly intrusive, he just found a friend in me, someone to look up to and someone he would probably do everything for. Not in a stalker kind of way, just as a friendship he got all cought up in and absorbed with (maybe partly due to his illness?)...

If you actually dont mind him, then maybe you could set a time, say once a month, that you could take him to the movie, or dinner, or some sort of spending time... That way you could tell him your life is very hectic, and he is important to you so you are setting aside a special day for him to spend it with you... I too think its sweet, but I can see how it could get bothersome...

tinaz said:

If you actually dont mind him, then maybe you could set a time, say once a month, that you could take him to the movie, or dinner, or some sort of spending time... That way you could tell him your life is very hectic, and he is important to you so you are setting aside a special day for him to spend it with you... I too think its sweet, but I can see how it could get bothersome...

I don't think I would want that, really... I give my best, but I know that I am not very good at handling such situations. I can't even stay in an old people's home for longer than five minutes, because I just find the experience so mentally exhausting, just like I find it exhausting to talk to him for longer than five minutes, take care of him and be touched by him. When it comes to such things, I don't have thick skin, unfortunately...

Maybe I will meet him one day at one of your shows .

I would contact these people (or a similar group) and ask them what you need to consider so that you won't hurt him if it can be avoided : http://www.down-syndrom.at/

They hopefully can give you advide what to do.

[Edited 1/25/12 6:22am]

I would explain it to him the way you’re explaining it to us. That you enjoy his coming to the shows, love seeing him dance in the front row and chatting from time to time but that you’d like to leave it at that. If he understands what a stalker is, I think he’d understand if you tell him you’re not up to the task of being someone’s bff right now. And, obviously, state it as kindly as possible – which, I would hope, is how you’d treat anyone else in that circumstance.

I have a cousin who’s daughter has down’s. There’s a pretty big variability from person to person with it, but she’s fairly substantially disabled. She’s not able to live on her own, though she has a job and lives in a group home. Still, when with family she’s treated as we would anyone else.

Your heart’s in the right place. If you can’t give him what he wants, you’ll need to explain that to him. It may hurt, but putting it off and not being clear may hurt more in the long run.

Or – like Tina said. Find a day once in a while to hang out. Even every other month.

How old is he?

Does he go to the shows with a companion?

If so, maybe you could talk to that person and tell him/her that you really appreciate the love and support, but it is becoming a bit too much. Explain that you don't want to hurt him, but his wanting to be part of your personal life is making you uncomfortable. I think honesty is best.

Disability or not, you do not have to put yourself in a situation that is uncomfortable...

I think it'd be better if you didn't actually engage him on the subject of backing off. The potential for misunderstanding and upset is huge.

Does anyone accompany him to your shows? He must have a caregiver of some sort - most people who truly have Down Syndrome (as opposed to a non-Down developmental disability) require care on some level. That is the person you should be talking to.

Found this link for you

http://www.downs-syndrome.org.uk/

Dave1992 said:

tinaz said:

If you actually dont mind him, then maybe you could set a time, say once a month, that you could take him to the movie, or dinner, or some sort of spending time... That way you could tell him your life is very hectic, and he is important to you so you are setting aside a special day for him to spend it with you... I too think its sweet, but I can see how it could get bothersome...

I don't think I would want that, really... I give my best, but I know that I am not very good at handling such situations. I can't even stay in an old people's home for longer than five minutes, because I just find the experience so mentally exhausting, just like I find it exhausting to talk to him for longer than five minutes, take care of him and be touched by him. When it comes to such things, I don't have thick skin, unfortunately...

Definitely do NOT spend one-on-one time with him outside of gigs if you are not comfortable with that.

I've spent more than ten years with people who have developmental disabilities. Yes, people with Down's can be very sensitive, but they're not aliens or non-human. Don't believe people who tell you they have a special sixth sense or any such nonsesnse. They can be very passionate and obsessive, but also need to learn boundaries and social skills, in the same way that you would patiently teach a child. Adults with Down's are NOT children, but they are mentally at a developmental age that is younger than their biological years. Some are like a five-year-old, others are more at the level of a teenager.

You need to establish boundaries with this young man. It does not help people with developmental disabilities when we ignore their socially inappropriate behavior, or when we give false promises. He can learn. Tell him firmly but gently, "Please don't lean your head on me, I don't like that." One thing that's helpful is that you can be a lot more direct with him than you would with other people, since subtlety will often be lost on him. You have to spell out what you want and don't want, as simply and clearly as you can. I can't stress that enough. Tell him clearly, "I like having you at my concerts and you will always get free entry because you're my biggest fan! But we can't go over each other's houses." If he presses and asks why, tell him that only your family members and girlfriends can do that. Something like that. Please do NOT lead him on and make him think things will happen later, because he will not forget, and will likely become upset when you don't follow through.

Does he ever have a family member or caregiver with him that you could talk to?

In my experience people with Down's are surprisingly agreeable when you tell them clearly how things are. If you observe him, he is probably brutally honest with people without much regard for whether it's "nice." You can be the same way with him, with the caveat that you are always kind about it. I don't think being kind is an issue, though, from what you've said.

Music and dancing are sources of universal joy, and in general this is even more true for people with developmental disabilities. Giving him the opportunity to attend your shows for free, be in the front row, and dance on stage are all wonderful gifts that are undoubtedly bringing him real joy. It is perfectly okay, and completely appropriate, for that to be where it ends.

P.S. With the physical touch thing, you will need to remind him frequently. Just keep it consistent. It helps to offer a "replacement behavior," such as a shaking hands instead of hugging. This is something we often teach our students, since many of them love to hug but need to learn that it's not socially appropriate to hug and touch everyone we see. When he starts touching you, you can remind him, "handshake, please" or "can you give me a nice high-five?" Again, choose something and keep it consistent.

Good luck.

Punkmistress <== Best and most knowledgeable answer.

chocolate1 said:

Punkmistress <== Best and most knowledgeable answer.

If he is Down's,he must be high functioning,by the way you describe him. My uncle had Down's Syndrome,and he would hug anyone he met,so when we would take him places,we had to make sure he did'nt. Some people were fine with it,and thought he was sweet,we did'nt want to risk coming across someone that would have a problem with it.

I say he must be high functioning because,I have seen people with Down's walk around town by themselves,and have jobs,but my uncle would have never been able to do that,he always was with family.

I think it's really nice of you to make sure that he can sit in the front at your shows,and that you do talk to him,cause most people just would'nt,because he is to them "different".Like PunkMistress said you shouldn't feel guilted into doing things with him,especially if they make you uncomfortable,and there should be boundaries,just as in any interaction with other people.

I don't really know how I would handle this situation. If he has a caretaker,you should talk to them,and explain your concerns,then maybe they can help you with how to handle it.

[Edited 1/25/12 13:17pm]

[Edited 1/25/12 21:03pm]

chocolate1 said:

How old is he?

Does he go to the shows with a companion?

If so, maybe you could talk to that person and tell him/her that you really appreciate the love and support, but it is becoming a bit too much. Explain that you don't want to hurt him, but his wanting to be part of your personal life is making you uncomfortable. I think honesty is best.

Disability or not, you do not have to put yourself in a situation that is uncomfortable...

I think he's at least 20.

Nope, he's always on his own. That's part of the "problem".

You see, he does function (he even has an own facebook profile). But I just sense that his social behaviour is not well-developed and that he, therefore, wouldn't understand any subtle "rejections". On the other hand, he seems to be way too sensitive and passionate to simply be told that I can't/don't want to give him certain things...

Genesia said:

I think it'd be better if you didn't actually engage him on the subject of backing off. The potential for misunderstanding and upset is huge.

Does anyone accompany him to your shows? He must have a caregiver of some sort - most people who truly have Down Syndrome (as opposed to a non-Down developmental disability) require care on some level. That is the person you should be talking to.

If there were anybody with him, I would have approached them long time ago.

I'm quite sure he really has Down's. He's just lucky to be pretty well-developed mentally, compared to many other people in that state. That's probably why he doesn't have to have a caretaker 24/7.

PunkMistress said:

Dave1992 said:

I don't think I would want that, really... I give my best, but I know that I am not very good at handling such situations. I can't even stay in an old people's home for longer than five minutes, because I just find the experience so mentally exhausting, just like I find it exhausting to talk to him for longer than five minutes, take care of him and be touched by him. When it comes to such things, I don't have thick skin, unfortunately...

Definitely do NOT spend one-on-one time with him outside of gigs if you are not comfortable with that.

I've spent more than ten years with people who have developmental disabilities. Yes, people with Down's can be very sensitive, but they're not aliens or non-human. Don't believe people who tell you they have a special sixth sense or any such nonsesnse. They can be very passionate and obsessive, but also need to learn boundaries and social skills, in the same way that you would patiently teach a child. Adults with Down's are NOT children, but they are mentally at a developmental age that is younger than their biological years. Some are like a five-year-old, others are more at the level of a teenager.

You need to establish boundaries with this young man. It does not help people with developmental disabilities when we ignore their socially inappropriate behavior, or when we give false promises. He can learn. Tell him firmly but gently, "Please don't lean your head on me, I don't like that." One thing that's helpful is that you can be a lot more direct with him than you would with other people, since subtlety will often be lost on him. You have to spell out what you want and don't want, as simply and clearly as you can. I can't stress that enough. Tell him clearly, "I like having you at my concerts and you will always get free entry because you're my biggest fan! But we can't go over each other's houses." If he presses and asks why, tell him that only your family members and girlfriends can do that. Something like that. Please do NOT lead him on and make him think things will happen later, because he will not forget, and will likely become upset when you don't follow through.

Does he ever have a family member or caregiver with him that you could talk to?

In my experience people with Down's are surprisingly agreeable when you tell them clearly how things are. If you observe him, he is probably brutally honest with people without much regard for whether it's "nice." You can be the same way with him, with the caveat that you are always kind about it. I don't think being kind is an issue, though, from what you've said.

Music and dancing are sources of universal joy, and in general this is even more true for people with developmental disabilities. Giving him the opportunity to attend your shows for free, be in the front row, and dance on stage are all wonderful gifts that are undoubtedly bringing him real joy. It is perfectly okay, and completely appropriate, for that to be where it ends.

I didn't mean to give the impression of me thinking he (and all people with Down's) had some kind of sixth sense.

They just tend to be very emotional!

The problem I have is that I'm not sure how to really approach him. His social behaviour isn't developed enough to "get" that some people simply can't or do not want to offer certain things, but he is developed enough to know what friends should do, to know how to approach people, to write people on facebook (even though his writing language is horrible) and all that. Findind the right "tone" to tell him is what gives me trouble.

PunkMistress said:

P.S. With the physical touch thing, you will need to remind him frequently. Just keep it consistent. It helps to offer a "replacement behavior," such as a shaking hands instead of hugging. This is something we often teach our students, since many of them love to hug but need to learn that it's not socially appropriate to hug and touch everyone we see. When he starts touching you, you can remind him, "handshake, please" or "can you give me a nice high-five?" Again, choose something and keep it consistent.

Good luck.

Yeah, that's a good piece of advice.

Thank you!

Dave1992 said:

PunkMistress said:

Definitely do NOT spend one-on-one time with him outside of gigs if you are not comfortable with that.

I've spent more than ten years with people who have developmental disabilities. Yes, people with Down's can be very sensitive, but they're not aliens or non-human. Don't believe people who tell you they have a special sixth sense or any such nonsesnse. They can be very passionate and obsessive, but also need to learn boundaries and social skills, in the same way that you would patiently teach a child. Adults with Down's are NOT children, but they are mentally at a developmental age that is younger than their biological years. Some are like a five-year-old, others are more at the level of a teenager.

You need to establish boundaries with this young man. It does not help people with developmental disabilities when we ignore their socially inappropriate behavior, or when we give false promises. He can learn. Tell him firmly but gently, "Please don't lean your head on me, I don't like that." One thing that's helpful is that you can be a lot more direct with him than you would with other people, since subtlety will often be lost on him. You have to spell out what you want and don't want, as simply and clearly as you can. I can't stress that enough. Tell him clearly, "I like having you at my concerts and you will always get free entry because you're my biggest fan! But we can't go over each other's houses." If he presses and asks why, tell him that only your family members and girlfriends can do that. Something like that. Please do NOT lead him on and make him think things will happen later, because he will not forget, and will likely become upset when you don't follow through.

Does he ever have a family member or caregiver with him that you could talk to?

In my experience people with Down's are surprisingly agreeable when you tell them clearly how things are. If you observe him, he is probably brutally honest with people without much regard for whether it's "nice." You can be the same way with him, with the caveat that you are always kind about it. I don't think being kind is an issue, though, from what you've said.

Music and dancing are sources of universal joy, and in general this is even more true for people with developmental disabilities. Giving him the opportunity to attend your shows for free, be in the front row, and dance on stage are all wonderful gifts that are undoubtedly bringing him real joy. It is perfectly okay, and completely appropriate, for that to be where it ends.

I didn't mean to give the impression of me thinking he (and all people with Down's) had some kind of sixth sense.

They just tend to be very emotional!

The problem I have is that I'm not sure how to really approach him. His social behaviour isn't developed enough to "get" that some people simply can't or do not want to offer certain things, but he is developed enough to know what friends should do, to know how to approach people, to write people on facebook (even though his writing language is horrible) and all that. Findind the right "tone" to tell him is what gives me trouble.

That's what you got out of all of that?? I wrote that "sixth sense" bit in response to what you said other people have told you.

As far as tone: firm and kind, firm and kind. He might seem put off or offended at first, but again, this is part of his learning and part of you creating an honest and emotionally safe relationship with this person. That doesn't mean don't ever be loving, or happy to see him. Just try to keep the overarching theme "firm and kind."

There are things he won't ever "get," without being reminded all the time. That's why consistency and repetition are key.

Two things to keep in mind when you start to worry that you are so incredibly important to him that you'll crush his feelings:

1. People with DS/DD learn manipulation at a very early age. Because they are often so dependent on others for their wants and needs, they learn to emotionally manipulate others as a survival technique or a way to get what they want or need. In this respect they can be fucking brilliant.

2. They are also often very used to people coming in and out of their lives. Caregivers, teachers, social workers, etc. Working with this population comes with a very high burnout rate (as you are experiencing, it is very intense.) Because people with these disabilities seem to form such strong attachments and seem to fall in "love" (not necessarily romantic) so easily, we who are in their lives often feel very guilty or responsible for their sensitive feelings. This is important and wonderful, to an extent. But it is also good to keep in mind that this is nothing new to most of them and that they have a strong ability to move on, always have and always will.

An addendum to number 2: you may be a partial exception to this because you are "famous" in his mind. Fixations on singers, bands, wrestlers, performers, etc. are not uncommon and can be more entrenched than attachments to caregivers and social workers.

I think this guy is going to be a very important learning experience in your life. He may end up teaching you more than you teach him.

PunkMistress said:

Dave1992 said:

I didn't mean to give the impression of me thinking he (and all people with Down's) had some kind of sixth sense.

They just tend to be very emotional!

The problem I have is that I'm not sure how to really approach him. His social behaviour isn't developed enough to "get" that some people simply can't or do not want to offer certain things, but he is developed enough to know what friends should do, to know how to approach people, to write people on facebook (even though his writing language is horrible) and all that. Findind the right "tone" to tell him is what gives me trouble.

That's what you got out of all of that?? I wrote that "sixth sense" bit in response to what you said other people have told you.

As far as tone: firm and kind, firm and kind. He might seem put off or offended at first, but again, this is part of his learning and part of you creating an honest and emotionally safe relationship with this person. That doesn't mean don't ever be loving, or happy to see him. Just try to keep the overarching theme "firm and kind."

There are things he won't ever "get," without being reminded all the time. That's why consistency and repetition are key.

Two things to keep in mind when you start to worry that you are so incredibly important to him that you'll crush his feelings:

1. People with DS/DD learn manipulation at a very early age. Because they are often so dependent on others for their wants and needs, they learn to emotionally manipulate others as a survival technique or a way to get what they want or need. In this respect they can be fucking brilliant.

2. They are also often very used to people coming in and out of their lives. Caregivers, teachers, social workers, etc. Working with this population comes with a very high burnout rate (as you are experiencing, it is very intense.) Because people with these disabilities seem to form such strong attachments and seem to fall in "love" (not necessarily romantic) so easily, we who are in their lives often feel very guilty or responsible for their sensitive feelings. This is important and wonderful, to an extent. But it is also good to keep in mind that this is nothing new to most of them and that they have a strong ability to move on, always have and always will.

An addendum to number 2: you may be a partial exception to this because you are "famous" in his mind. Fixations on singers, bands, wrestlers, performers, etc. are not uncommon and can be more entrenched than attachments to caregivers and social workers.

I think this guy is going to be a very important learning experience in your life. He may end up teaching you more than you teach him.

No, don't worry, I just wanted to clarify that part!

When I don't add anything or react directly to things you said, I usually take this information on-board and think about it, being thankful for your time and useful lines. You see, it's too early for me to form a proper opinion or evaluate how good I think anyone's advice is. Yours definitely sounds sensible and I will give it a shot.

Your last sentence sounds especially interesting and intriguing.

Dave1992 said:

PunkMistress said:

That's what you got out of all of that?? I wrote that "sixth sense" bit in response to what you said other people have told you.

As far as tone: firm and kind, firm and kind. He might seem put off or offended at first, but again, this is part of his learning and part of you creating an honest and emotionally safe relationship with this person. That doesn't mean don't ever be loving, or happy to see him. Just try to keep the overarching theme "firm and kind."

There are things he won't ever "get," without being reminded all the time. That's why consistency and repetition are key.

Two things to keep in mind when you start to worry that you are so incredibly important to him that you'll crush his feelings:

1. People with DS/DD learn manipulation at a very early age. Because they are often so dependent on others for their wants and needs, they learn to emotionally manipulate others as a survival technique or a way to get what they want or need. In this respect they can be fucking brilliant.

2. They are also often very used to people coming in and out of their lives. Caregivers, teachers, social workers, etc. Working with this population comes with a very high burnout rate (as you are experiencing, it is very intense.) Because people with these disabilities seem to form such strong attachments and seem to fall in "love" (not necessarily romantic) so easily, we who are in their lives often feel very guilty or responsible for their sensitive feelings. This is important and wonderful, to an extent. But it is also good to keep in mind that this is nothing new to most of them and that they have a strong ability to move on, always have and always will.

An addendum to number 2: you may be a partial exception to this because you are "famous" in his mind. Fixations on singers, bands, wrestlers, performers, etc. are not uncommon and can be more entrenched than attachments to caregivers and social workers.

I think this guy is going to be a very important learning experience in your life. He may end up teaching you more than you teach him.

No, don't worry, I just wanted to clarify that part!

When I don't add anything or react directly to things you said, I usually take this information on-board and think about it, being thankful for your time and useful lines. You see, it's too early for me to form a proper opinion or evaluate how good I think anyone's advice is. Yours definitely sounds sensible and I will give it a shot.

Your last sentence sounds especially interesting and intriguing.

Cool.

I was sorely tempted to just post, "Force him to become a vegetarian and hand him a cello, problem solved," and leave.

But I didn't.