There really isn't anything I can do about this, is there?

[Innisfree]

Dd11 is really, really loves an activity designed for special needs kids (she has autism). She is really good at it, has developed a lot of confidence, and thrives in that setting. She has been so proud of herself. She's been working at this activity for several years.

 

The activity requires a lot of volunteers, who usually can start at age 14. Some participants have gone on to volunteer, dd knows this, and she is on track to probably be able to do so when she is 14.

 

Dd has always been really reluctant to talk to anyone about having autism. This includes doctors and therapists, but most especially it includes friends. She's been afraid of being teased, of being different, of losing control of that information.

 

So we were thrilled when she trusted a friend with that information and invited her to see a special event at dd's activity. It was major progress, a sign that she was seeing the autism as part of the spectrum of normal and not something she had to hide. I was so proud of her.

 

And then the friend took part in a summer camp this activity holds for neurotypical kids alongside kids with special needs. And then the friend decided she wanted to volunteer at the activity.

 

By ordinary guidelines, which dd has known, Friend is three years too young, but apparently on a case-by-case basis some kids judged mature enough are allowed to do so. So, if all has gone well with a test Friend was taking today, she'll be a new volunteer in dd's favorite activity.

 

Dd is furious and heartbroken and angry at herself that she, dd, can't volunteer at age 11, after devoting years to this activity, but Friend can go for a week-long day camp, take a test and have what dd sees as a higher status in this activity. She trusted this friend with something huge, let her into her world, and Friend hopped ahead to something which is a distant goal for dd.

 

I am heartsick for her.

 

Friend is sending dd chirpy enthusiastic texts about how excited she is to be volunteering.

 

Dd doesn't want anything to do with Friend.

 

Ick, yuck, I hate the whole situation. Of course the friend is a nice kid, a kind kid, and any parent would be delighted she wants to volunteer with this group. Of course she doesn't understand. Apparently she didn't really get it when dd told her about the autism. And why would she? She's 11, and this hasn't been her life.

 

But maybe it should have occurred to her parents that it wouldn't be all right with dd for Friend to do this? Or maybe they don't have the experience to understand, either. A place which was special to dd, really deeply important, where she was the skilled and successful one, has just become a reminder that her friend can effortlessly surpass her. I could just cry.

 

I don't see any way it could be reasonable to ask the group to have Friend not participate, or fail the test, or anything. It wouldn't be reasonable to ask her parents to hold her back. Would it? I just don't see any way I can fix this. Any ideas?

[Ravin]

I think it would be reasonable to talk to the friend's parents about the impact this is having on your DD. I expect it is backfiring compared to what they expect/hope--that it would be something shared. What do do about it I'm not sure, but communication is the first step.

[Stacia]

:grouphug: :grouphug:

 

I would like to think that Friend & her parents just had no clue that a) probably your dd couldn't volunteer until age 14 and b) that this would be so hurtful to you & your dd. I think if they haven't lived with autism in their own family, they may not have an idea of the struggles you guys have gone through (esp. since your dd has been reluctant to discuss it). (Personally, we have not had this in our family & I think I might have been clueless as to how this would have impacted your dd & your family.)

 

I think the best you could hope for is to talk to Friend's parents, describe the situation for your dd & how she sees it, & see if Friend's parents are willing to encourage their dd to wait & volunteer in a few years.

[Guest]

I don't think it's reasonable to expect the parents to just magically know how this could have impacted your dd. If there is any fix for this solution, it lies in speaking frankly with the parents, who can then explain it to their dd in a compassionate way.

[Eagle]

I don't have any ideas for you, but I wanted to send you a hug and say I understand why that would be upsetting for your dd. I'm guessing the friend and her parents think this is a way for her to be closer to your dd and have no idea how upsetting this is for you and your dd.

 

I'm so sorry. :grouphug:

[Innisfree]

Yes, I can speak to the parents. They are good people, and I know this is new to them. But I'm not sure it would even be right for me to discourage their dd in any way. She is a good kid. She sent dd a text about "I still want to be your friend and I want to help you," and dd just rolled her eyes. The volunteering was just too much. I guess I'll have to speak to them, if only to explain why dd isn't answering her friend.

[Stacia]

Yeah, I think there's probably a big gap between the way your dd (& you see it) vs. how Friend & her parents see it.

 

I think an explanation & frank discussion would be very helpful for everyone.

Edited August 8, 2016 by Stacia

[hornblower]

I agree with talking to Friend's parents and hoping they understand that this is driving a rift into the children's relationship. It's possible that they thought this was a way for friend to show support & are not realizing the implications at all. 

[Ausmumof3]

It feels a little like from reading your post anyway that they have moved a little from "good friends" more to "supporting my friend with autism" mode. I don't know how to express what I'm saying well so forgive me if I say it the wrong way I don't want to offend but I feel like sometimes the awesome tendency in our culture to try to be supportive of people with differences or disabilities can almost increase the sense of disability or difference? Like... Ok what you want from Dds friends is that she will continue thinking of her as a friend who just happens to have autism but she kind of has had a shift where she suddenly feels the need to be more supportive and it's changed the dynamic? Idk. I don't think you can blame the parents for it, but you could maybe try having a conversation about it and hope it changes things.

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug: 

 

I agree, talk with them.  Don't have ANY expectations for what they are willing/able to do and don't ask them to do anything outright.  They may get defensive and resentful, thinking this was a nice thing for the girls to share and now it is being thrown back at them and negatively impacting their daughter.  But definitely talk to them.  Share what is happening with your daughter and her hard work to get where she is.  Explain it clearly, in simple terms, and let them wrap their brain around things a bit.  Then maybe brainstorm with them on ways to help both girls through this difficult time.  See if there is a way to improve the situation.

 

I agree with others, unless the parents have dealt with a similar situation personally I would not have expected them to realize how your DD would react.  Not at all.  Too many intuitive leaps involved.

 

:grouphug:  :grouphug:  :grouphug:

 

 

[Garga]

Talk to them. In person, face to face. This requires body language. Text would be horrible, phone not much better.

[Xahm]

I don't know the details of this activity of course, but if it is accurate to the situation, can you explain it to your daughter as, "the only way friend will be allowed to participate in this activity on an ongoing basis is if she is a volunteer, so isn't it great that they found a way to make that happen so you can be together?" and then maybe, with the friend's parents' help, make sure the friend realizes the value of your daughter's years of experience and asks your daughter for advice about being the best volunteer she can be?

[madteaparty]

Piling on that I would also talk to the parents. Speaking for myself, I'm not the most thoughtful person and am sort of tunneled into my own world...I would hate for someone to ascribe my actions bad intent when it was actually just lack of thought (which isn't an excuse, but here we are).

[Library Momma]

I would speak with the head of the organization.  In my experience people who run organizations for children with disabilities usually have children with disabilities themselves.  They should understand your point of view.  Perhaps they can recant on making an exception for this girl.  They are breaking their own age rule, so they don't have to tell this girl the exact reason.  Or possibly they can make an exception for your daughter as well.

[Acadie]

My response is less about the particular issue at hand, and more about sharing in general. Would dd be comfortable with your sharing, rather than her, with friends, therapists, doctors? If not, is there any way you can find the positives to sharing, and talk to her about how it helps people understand, and also helps them feel safe to share their own preferences, needs and challenges? Could you find youtube videos or posts on Amy Poehler's Smart Girls about taking risks, sharing, putting yourself out there? Brene Brown's TED talk on vulnerability?

 

In some ways, this is specific to autism, but in others, it's about finding ways to be comfortable being yourself. This is THE central issue for just about every preteen and teen I know (not to mention me). Is she in a social group that might discuss just this sort of thing?

 

I wonder if it would help her if you can find ways to take the lead and emphasize the importance of authenticity and sharing, for everyone. When dd reaches her goal of volunteering, she will have an understanding that her friend may not, because they've had different life experiences. What can dd offer that is unique to her, that someone who is brand new to this activity may not know anything about?

 

It could be important to talk to the friends, but I'm wondering if the ways you and dd talk about it are even more essential.

 

Amy

 

 

 

 

 

 

[gardenmom5]

  Of course the friend is a nice kid, a kind kid, and any parent would be delighted she wants to volunteer with this group. Of course she doesn't understand. Apparently she didn't really get it when dd told her about the autism. And why would she? She's 11, and this hasn't been her life.

 

But maybe it should have occurred to her parents that it wouldn't be all right with dd for Friend to do this? Or maybe they don't have the experience to understand, either. A place which was special to dd, really deeply important, where she was the skilled and successful one, has just become a reminder that her friend can effortlessly surpass her. I could just cry.

 

I don't see any way it could be reasonable to ask the group to have Friend not participate, or fail the test, or anything. It wouldn't be reasonable to ask her parents to hold her back. Would it? I just don't see any way I can fix this. Any ideas?

 

if the parent's haven't dealt with a CHILD with asd on a regular basis, it would be unusual for them to think of  this.

 

i used to listen to my sil go on and on about bil (her brother) and her dh probably being on the spectrum (and yes, I see it) - but the way she treated and talked about dudeling as a small child - who has been formally diagnosed by an entire multidisciplinary team - showed she really doesn't "get it" for what that means. 

 

it is a very hard situation - the other girl is also only 11, she's a child.  it sounds the girl  still  wants to be friends with your dd.  does she think she's better than her -or that this is an opportunity for them to be together in a place  where friend can understand more about some of the challenges your dd faces every day so they can deepen, and broaden, their friendship?  I would try to get the girls together to really talk about their feelings.  I know how hard that can be with an 11yo aspie - I have one.  help her to see the another side to this.  (for my kids who don't like talking, they're usually willing to write notes while I verbally respond.  incl. aspie.)

[Innisfree]

It feels a little like from reading your post anyway that they have moved a little from "good friends" more to "supporting my friend with autism" mode. I don't know how to express what I'm saying well so forgive me if I say it the wrong way I don't want to offend but I feel like sometimes the awesome tendency in our culture to try to be supportive of people with differences or disabilities can almost increase the sense of disability or difference? Like... Ok what you want from Dds friends is that she will continue thinking of her as a friend who just happens to have autism but she kind of has had a shift where she suddenly feels the need to be more supportive and it's changed the dynamic? Idk. I don't think you can blame the parents for it, but you could maybe try having a conversation about it and hope it changes things.

Yes, thank you. This is a big part of what I've been thinking since the friend sent the "I want to help you" text. All dd wants is for her to be a friend, as she has been for years. She doesn't want help, and the offer feels condescending. But this is a child, and she means well. I don't expect her to understand all these implications.

 

Honestly I guess I'd been so focused on dd, and how big a step it was for her to share this information with anyone, that I hadn't thought ahead to how the friend might react and process this. I knew she was kind enough not to tease. The whole chain of events has happened pretty fast.

[Carol in Cal.]

I imagine that this girl really loves your daughter and thinks that this is an awesome way to be a tremendously supportive friend.

I'm not sure how I would handle it.  It's a tough one.

[Innisfree]

My response is less about the particular issue at hand, and more about sharing in general. Would dd be comfortable with your sharing, rather than her, with friends, therapists, doctors? If not, is there any way you can find the positives to sharing, and talk to her about how it helps people understand, and also helps them feel safe to share their own preferences, needs and challenges? Could you find youtube videos or posts on Amy Poehler's Smart Girls about taking risks, sharing, putting yourself out there? Brene Brown's TED talk on vulnerability?

 

In some ways, this is specific to autism, but in others, it's about finding ways to be comfortable being yourself. This is THE central issue for just about every preteen and teen I know (not to mention me). Is she in a social group that might discuss just this sort of thing?

 

I wonder if it would help her if you can find ways to take the lead and emphasize the importance of authenticity and sharing, for everyone. When dd reaches her goal of volunteering, she will have an understanding that her friend may not, because they've had different life experiences. What can dd offer that is unique to her, that someone who is brand new to this activity may not know anything about?

 

It could be important to talk to the friends, but I'm wondering if the ways you and dd talk about it are even more essential.

 

Amy

This has given me a lot to think about. I'll have to look for those videos.

 

Dd is not comfortable with *anyone* discussing her autism. Me, doctors, therapists, anyone. She has fled from (necessary) medical appointments where it had to be mentioned. That's part of why this is such a big deal. The first time she was brave enough to do this with a friend, it has come back to bite her. But the whole theme of all of us being comfortable with ourselves is one I've been trying to reinforce.

 

She is registered for a social skills class starting next week. I'm just hoping I can actually get her there. She is not happy about it.

 

Thanks for the ideas, I need to think about this.

[Stacia]

The first time she was brave enough to do this with a friend, it has come back to bite her.

 

I think it has already been mentioned, but is there any way to also reframe it in your dd's mind -- explaining that friend probably meant well, that it wasn't meant to "bite" her, etc....? I think that's also a piece that should be approached (as well as talking w/ Friend & her parents).

 

[happi duck]

The bending the rules would frustrate me.

 

(Hugs)

 

I hope you can come up with a concise way to express the issue.

[NorthwestMom]

I would talk to the program director - this is really not acceptable to have ones set of rules for volunteers with autism (firm age limit), and another without (by subjective decision). It sounds a lot like discrimination based on disability status. Say it nicely - I'm sure they will be mortified - but it needs to be said. This stigmatizes the group they are trying to help.

 

:grouphug: :grouphug: :grouphug:

 

 

[Katy]

I think the friend is probably volunteering in an effort to get closer to your dd.  I wouldn't want to discourage that.

 

I think the answer would be talking to the people who made the exception, and discuss the unfairness of letting your DD's close friend have an exception without her,  and possibly use the word discrimination when you have that discussion.

 

Because after all, if your DD gets an exception too, wouldn't that be the outcome that would make her most happy?

[Innisfree]

I think it has already been mentioned, but is there any way to also reframe it in your dd's mind -- explaining that friend probably meant well, that it wasn't meant to "bite" her, etc....? I think that's also a piece that should be approached (as well as talking w/ Friend & her parents).

 

 

Yes, of course you're right, and we have said this.

 

 

 

Part of the problem is dd's own outlook. She really isn't interested in having her friend at the activity at all. She thought of taking the friend to see the activity's event as a one-time thing. She wants to focus on *the activity itself* when she is there, and doesn't want to be distracted by social life. She really is fond of the friend, but is used to seeing her in a different context. This is probably the autism talking... It doesn't even occur to her that friends become closer by sharing activities. This is, of course, the sort of thing we are trying to talk through with her. But to her, social involvement at the activity is an unwelcome distraction.

 

But if they could both be participating on the same level, it would end up being okay. It's the status difference which really hurts. It's just hard to help her grasp that this was probably intended to be something they could share.

[Innisfree]

Anyway, everyone, thanks for the ideas and hugs. I appreciate all your ideas. You've given me a lot to think about.

[Stacia]

Yes, of course you're right, and we have said this.

 

 

 

Part of the problem is dd's own outlook. She really isn't interested in having her friend at the activity at all. She thought of taking the friend to see the activity's event as a one-time thing. She wants to focus on *the activity itself* when she is there, and doesn't want to be distracted by social life. She really is fond of the friend, but is used to seeing her in a different context. This is probably the autism talking... It doesn't even occur to her that friends become closer by sharing activities. This is, of course, the sort of thing we are trying to talk through with her. But to her, social involvement at the activity is an unwelcome distraction.

 

But if they could both be participating on the same level, it would end up being okay. It's the status difference which really hurts. It's just hard to help her grasp that this was probably intended to be something they could share.

 

I know it's hard & definitely not fun. :grouphug:

 

I wish there were an easy answer or fix for all this (for both your dd & for you).

 

Hang in there!

Edited August 9, 2016 by Stacia

[fraidycat]

I would talk to the program director - this is really not acceptable to have ones set of rules for volunteers with autism (firm age limit), and another without (by subjective decision). It sounds a lot like discrimination based on disability status. Say it nicely - I'm sure they will be mortified - but it needs to be said. This stigmatizes the group they are trying to help.

 

:grouphug: :grouphug: :grouphug:

:iagree: