Asperger Syndrome Support Group
Asperger syndrome - also referred to as Asperger's syndrome, Asperger's, Aspergers or just AS - is one of five neurobiological pervasive developmental disorders (PDD), and is characterized by deficiencies in social and communication skills, normal to above normal intelligence, and standard language development.
kdMac
Hi, I am new to this forum- I hope it is open to those supporting indivdiuals with Aspergers as well as those who are living with Aspergers?
I am joining to gain insight and support around how to best help my daughter grow up with a positive self-esteem in spite of the incredibly dynamic myriad of challenges she faces. She is 14 years old and has a loose diagnosis of aspergers (although this was recently changed to PDD -NOS because that will open more services to her) as well as ADHD (managed with medication) and Sensory Integration Disorder. She is completely mainstreamed in all regular classrooms in school and in fact all special education services ended for her in the 6th grade because she was performing on level academically and wasn't having any other issues in school. Of course we celebrated this but I worry she will "fall through the cracks". She is a very bright girl- and she does put in a lot of effort to do well while she is in school but she does have immense test anxiety and hates doing homework- so these two factors combined often lead to lower grades (she is getting mostly low B's and C's). More than academics- I most worry about her socially. She so wants a peer group- but the kids that will accept her are often very troubled kids (she refers to these kids as "Emo's"- and she has aspired to be one of the "crowd" and has gone as far as cutting herself to fit in). She really wants to be a typical kid and have a boyfriend and just have fun- but she doesn't see how her behavior pushes her friends away- and attracts people who just want to use her or are out for their own selfish gain. She has become highly suggestive in her talk with boys- and they are with her, too. She has absolutely no boundaries, or filter on what she says (or does at times). Currently (although reluctantly I have accepted this at the urging of her counselor that this is not a bad thing) her social network is mostly on-line with kids she barely knows (and yet "chats" can get very inappropriate very quickly). I am actually pretty relieved her social network isn't in person right now because her impulse control is so limited right now I am very fearful she would try anything to be accepted (she made the comment "I am glad my boyfriend is long-distance or I could be pregnant right now"- note: she is on the pill for regulating her cycles and managing hormone fluctuations and she is not sexually active yet- but I can see her becoming active given the opportunity).
It's probably not surprising that she seems happiest when she is in the midst of some "crisis" with these on-line friends (someone is upset about a breakup- someone else is needing to be talked through not hurting themselves). She seems to be addicted to the "drama" that these circle of "friends" are in and this is how she feels she has "meaning" in her life and is being helpful. Suggestions that we do some volunteer work or get involved in our community is met with HUGE resistance- and I often wonder whether I should just force the issue. I do know she would feel good about herself in the end- but she is so angry about the idea I have not pushed it.
I am trying to find the right balance- on one hand letting her experience the dynamics that go along with having a peer group (as unconventional as this group is ) but also wanting to protect her from people who are not looking out for her best interest. I know some of this stuff is "teenage stuff" but at the same time- she has no filter and has gotten herself into some potentially very unsafe situations. I know she just wants to feel accepted and be a part of a crowd... I really do get that- but I also feel like if I don't monitor what she is doing and set some limits- I am being remiss in my responsibilities, too. My goal is to give her the opportunity to grow up safely and reach adulthood without too many scars (although frankly she gets so much negative input from those around her- I worry what damage has already been done).
She is often angry with me- she tells me that she feels like I am controlling her life- she feels like I make her life miserable- and then the other extreme when she wants me to cuddle with her on the couch and help her do her hair. As painful as it is for her when I do set limits (such as limit the number of hours she is on the computer or monitor which sites she visits) she is much more even tempered when I do so- when I haven't monitored her activities well enough- typically things spiral out of control pretty quickly and she gets very easily upset and angry. So it's a catch twenty-two- I either am too controlling but she is safe and even-keeled or I am too permissive and she is moody and labile. I often do not know what mood I will be hit with and so I am a little on guard... I try not to get into debates with her (she always wins)- but I also feel like I need to be consistent with following safety rules (she has been lying to me, going through my things and being very sneaky with the phone and internet)- I want her to build MORE independence and get more room to move- but then I get scared because she makes very poor decisions that put her at risk. I know as a Mom part of my job is letting her spread her wings- but this is not going the way I had hoped at all. I am not finding a comfortable place- and for the first time since she was first diagnosed nearly ten years ago- I fear she will always need a level of support from me to be safe. I know she would absolutely hate that- it certainly would not be what I would want for her either.
For what it is worth, she is in medication for both her ADHD and anxiety and as mentioned before, regulating her cycles. She sees a counselor, too.
Any advice for a very concered (pretty frustrated) Mom who really just wants to do right by her daughter? Any feedback would be greatly appreciated. Thank you. (sorry for the length!!!)
I am joining to gain insight and support around how to best help my daughter grow up with a positive self-esteem in spite of the incredibly dynamic myriad of challenges she faces. She is 14 years old and has a loose diagnosis of aspergers (although this was recently changed to PDD -NOS because that will open more services to her) as well as ADHD (managed with medication) and Sensory Integration Disorder. She is completely mainstreamed in all regular classrooms in school and in fact all special education services ended for her in the 6th grade because she was performing on level academically and wasn't having any other issues in school. Of course we celebrated this but I worry she will "fall through the cracks". She is a very bright girl- and she does put in a lot of effort to do well while she is in school but she does have immense test anxiety and hates doing homework- so these two factors combined often lead to lower grades (she is getting mostly low B's and C's). More than academics- I most worry about her socially. She so wants a peer group- but the kids that will accept her are often very troubled kids (she refers to these kids as "Emo's"- and she has aspired to be one of the "crowd" and has gone as far as cutting herself to fit in). She really wants to be a typical kid and have a boyfriend and just have fun- but she doesn't see how her behavior pushes her friends away- and attracts people who just want to use her or are out for their own selfish gain. She has become highly suggestive in her talk with boys- and they are with her, too. She has absolutely no boundaries, or filter on what she says (or does at times). Currently (although reluctantly I have accepted this at the urging of her counselor that this is not a bad thing) her social network is mostly on-line with kids she barely knows (and yet "chats" can get very inappropriate very quickly). I am actually pretty relieved her social network isn't in person right now because her impulse control is so limited right now I am very fearful she would try anything to be accepted (she made the comment "I am glad my boyfriend is long-distance or I could be pregnant right now"- note: she is on the pill for regulating her cycles and managing hormone fluctuations and she is not sexually active yet- but I can see her becoming active given the opportunity).
It's probably not surprising that she seems happiest when she is in the midst of some "crisis" with these on-line friends (someone is upset about a breakup- someone else is needing to be talked through not hurting themselves). She seems to be addicted to the "drama" that these circle of "friends" are in and this is how she feels she has "meaning" in her life and is being helpful. Suggestions that we do some volunteer work or get involved in our community is met with HUGE resistance- and I often wonder whether I should just force the issue. I do know she would feel good about herself in the end- but she is so angry about the idea I have not pushed it.
I am trying to find the right balance- on one hand letting her experience the dynamics that go along with having a peer group (as unconventional as this group is ) but also wanting to protect her from people who are not looking out for her best interest. I know some of this stuff is "teenage stuff" but at the same time- she has no filter and has gotten herself into some potentially very unsafe situations. I know she just wants to feel accepted and be a part of a crowd... I really do get that- but I also feel like if I don't monitor what she is doing and set some limits- I am being remiss in my responsibilities, too. My goal is to give her the opportunity to grow up safely and reach adulthood without too many scars (although frankly she gets so much negative input from those around her- I worry what damage has already been done).
She is often angry with me- she tells me that she feels like I am controlling her life- she feels like I make her life miserable- and then the other extreme when she wants me to cuddle with her on the couch and help her do her hair. As painful as it is for her when I do set limits (such as limit the number of hours she is on the computer or monitor which sites she visits) she is much more even tempered when I do so- when I haven't monitored her activities well enough- typically things spiral out of control pretty quickly and she gets very easily upset and angry. So it's a catch twenty-two- I either am too controlling but she is safe and even-keeled or I am too permissive and she is moody and labile. I often do not know what mood I will be hit with and so I am a little on guard... I try not to get into debates with her (she always wins)- but I also feel like I need to be consistent with following safety rules (she has been lying to me, going through my things and being very sneaky with the phone and internet)- I want her to build MORE independence and get more room to move- but then I get scared because she makes very poor decisions that put her at risk. I know as a Mom part of my job is letting her spread her wings- but this is not going the way I had hoped at all. I am not finding a comfortable place- and for the first time since she was first diagnosed nearly ten years ago- I fear she will always need a level of support from me to be safe. I know she would absolutely hate that- it certainly would not be what I would want for her either.
For what it is worth, she is in medication for both her ADHD and anxiety and as mentioned before, regulating her cycles. She sees a counselor, too.
Any advice for a very concered (pretty frustrated) Mom who really just wants to do right by her daughter? Any feedback would be greatly appreciated. Thank you. (sorry for the length!!!)
I read that Aspies tend to be gullible and are the victims of date rape more often than NT girls. My own experience compels me to agree. I wish my mother had spoken more to me about the relationship that exists between a man and a woman.
You also might want to discuss the joys of sexually transmitted disease. You can find pictures on the internet.
Friends - you can't pick them but you can offer opportunities to find nice friends. Church is an easy suggestion - if you can find one with a "nice" youth group. Girl Scouts or some other kind of organization. Swim team - something she's interested in??? Jump in and take the lead while you still can. It might be too late at 14, but I would give it a try.
Whatever friends she has, try to meet their parents but at least meet the kid. Host something, like an afternoon of miniature golf, for her and a couple of friends? Have a park day once a week? Or movie night?
I don't know. I think you're a good mom just for coming here in search of answers. If you're looking, you'll probably find your answers. Kudos.
It's a shame your daughter will never fully appreciate all you do for her. I just want you to know that I know about it and appreciate your efforts.
not sure if shes into arts or theater, but thats how I got threw school in general, but that was my thing so .
MEH
Tee
I have gotten so much infor and support from this group of people. I also have a 15yo daughter with Non-verbal Learning disability.
We drive an her to a girls AS support group, the Gray Center founded by Carolyn Gray, about an hour away 2x's a month. We've been doing that for about 3 years and it has been priceless.
She got involved in the teen advisory counsel at our local library, does local theater and we recently found a church we all like with a great youth group.
She has her first official date tomorrow. The boy comes from a very rough family. We are less than thrilled. I guess even parents of NT kids have to deal with these issues, but I don't think they use the term "rigid thinking" in their family!
I agree with unduki, your a good mom, keep searching and you'll find what's right for your family.