Can anyone recommend a group or club for a teenage girl with AS?

Michelle - posted on 02/09/2009

hey, lise! i'm a something...don't know if saint is the word...but thanks for your kind thoughts! well, here goes (maybe i should just email you..this may take a while!). valysha was almost 2 months early, she had some breathing issues and spent a few days in intensive care and did suffer (haha - we both did - from gastric reflux!) but other than that, had no medical issues. i didn't think that anything was wrong with her until about 7 months, it occured to me that she was very 'floppy' (as in poor muscle tone) and was largely unresponsive to whatever was happening...however i didn't worry too much, her sister (14 months older) was a pretty bright little thing and i didn't want to spend too much time comparing them, so i didn't. by the time she was about 18 months, i knew something was up and took her to a paed, she had almost no verbal skills and would just grunt at me, luckily her sister was able to interpret for me! i took her to a paed, he said get her hearing tested when she was 2. i did that, was told that she had a significant loss in her left ear but she was too young to do anything about it. a couple of months later, i took her to another paed who said 'this child is autistic' and scared the crap out of me, basically....was all doom and gloom about it, really! she had really started to freak me out by this stage, she had this thing about turning on the stove elements (stupid oven where they were at the front and there was no kill switch thing!) so i decided one day i would try the time out thing...she was more than happy to sit there...for 3 hrs, just staring at the wall. then there was the time she lost the plot over something and didn't want me anywhere near her so i just left her alone thinking it was the best thing...a couple of minutes later i could hear this bang bang so i went into her room and she was sitting there banging her head against the toybox...she was bleeding all across her forehead...that was a bad day...and also the day i decided to start looking for some real answers. anyway, on our 2nd visit with the paed, he totally did an about face and said to me that she was probably just pulling my strings and didn't think there was anything all that wrong with her. shortly after that we moved towns and things settled down for a while...then she started school!!! i spent all year trying to tell them that she was going to have learning issues...they spent all year saying to me 'well, there's nothing wrong with savannah (her sister, who was still really bright) so it must be something that you're not doing right'...only to get to the end of the year and have them say to me 'we think she may have learning issues'....arrggghhh! we did not stay at that school, moved to another and later that year, she finally got a diagnosis (aged almost 7). our son, on the other hand, was diagnosed at 2 and a bit, mostly because we had a really good paed and i think he trusted our judgement enough to know that we did indeed know what we were talking about by this stage! i can't stress to you enough the difference that early intervention has made with our son...i wish soooo much that i had had that with lysha....i really feel it would have made such a difference to her. never mind...although when you say that your daughter is beginning to get a bit withdrawn, it makes me laugh (not in a mean way!!!). one of the biggest things i have had to learn with these kids is that just because they don't look happy in a way we can relate to, does not mean they are not content. now, valysha is a fair bit different...not always positively, either. some of the issues we have had with her are food hoarding (twice to the point she had a little community of mice sharing the room with her....eerrrggghhh!) and just hoarding in general...anything, bits of paper, material, anything you can think of really. she also struggles alot with her literal interpretation of things (for example, her psychologist asked her what is an umbrella and her answer was a metal stick with material on the top - not wrong, just very very literal which makes everyday life challenging at times). she is capable of doing very well academically but that pretty well collapsed last year due to bullying...here in aus (where are you?) we have just gone back to school and i am already considering taking her out and home schooling her...she just can't deal with the whole bullying thing, it tends to consume her and she can't really focus on anything else. i have done all i can to try and give her the tools to deal with it herself, but its just not working and we have only been back at school not even 3 weeks! not a good start...and i cannot in good conscience put her back into an environment that she clearly can't handle. so, we shall see what happens there...however i think thats enough for the first installment.(haha!!). it is sooo different in boys compared to girls....anyway, must go so best of luck and the best advice i can give is be flexible and be kind to yourself....on bad days it is easy to beat yourself up...i don't feel that i really know lysha as much as i would like to but these kids don't always let you in that easily and it is not a reflection on you as her mum....its just the way they are sometimes!

Lise - posted on 02/04/2009

Michelle!! You must be a Saint...6 kids including 2 aspies?!? I'm exhausted just thinking about it...I have a 4 y old aspie and a 1 y old. I've pretty much always knew something was off with my eldest and we just had her diagnosed recently...she's also been getting early intervention and speech therapy by-weekly for almost a year now...she's doing pretty good but it seems like she's withdrawing from peer lately. I'm interested in hearing more of your daughter's story...(how she was when she was youngerand how much she's changed since she was diagnosed) and any more info on anyone who has daughter's with AS.

Michelle - posted on 01/31/2009

hi! you sound like you're where i will be in about oohhh..5 years! i have six children and two of those (a son who is 4 and daughter who is 12) have aspergers. at the end of the school year last year, my daughter (valysha) was pretty well out of it, she had had four different teachers every week at school and her anxiety levels were through the roof. (she, too is quite good at whatever sports she tries her hand at, particularly gymnastics - she has done very well in that). i am at the point now where i'm thinking that if her behaviour or anxiety starts up again this year, i will take her out and home school her. i know it wouldn't be great for her (lack of) social skills but she just cannot handle the amount of 'stuff' that goes on at school. the frustrating part is, her teachers all say to me 'well, if you didn't know there was anything wrong with her, you wouldn't pick it'...they should see her at home! she became very withdrawn, and really isolated herself from interacting in our family...hard to watch as she is a quirky, and quite funny kid, the smaller ones really like having her around but she just seemed to lose interest in life in general...i don't know if i can put her through that year after year. she is supposed to be starting high school next year...yeah right! i am pretty nervous about it and don't know if it is going to end well...anyway, take care and any advice you can give will be appreciated...she didn't get a diagnosis til she was 7, with our son he was diagnosed at 2 and the difference with early intervention..there is just no comparison! have also tried girl guides...not good!

Margi - posted on 01/22/2009

Thanks Cheryl!  I will contact the local MHA.  I have hosted many of those "play dates" that you talk about.  I did it quite often while she was in elementary school and a few times when she was in Jr High.  Some were successful.  Others weren't.  But all were good learning opportunities.  Frankly, I would rather not "host" anymore but just allow her to participate.

Thanks for the info!

Cheryl - posted on 01/21/2009

you could contact your local Mental Health Association, they most likely have a support group that would offer multiple activities. You, could also host "play dates" ( for lack of a better word) with a group of some of her peers doing an activity she enjoys such as bowling or roller skating. If all goes well you can make it a monthly thing. Good luck