New here. Twin girls with AS

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I am new to the discussion board. I am wondering if any parents have had any of the problems I have run into. I have twin girls that are now 7, both diagnosed with AS. The girls were diagnosed early by wonderful Doctors in Atlanta Ga. They were already receiving therapy for failure to thrive so upon diagnosis therapy became more intense and new therapies were added. The girls responded after a while and began to do so much better. So much better is where the problem exists. As there mom I still see the struggles they have each day and each is very different. But when the girls were 4 we moved to Alabama and because the system here is so different is makes me wonder. Upon moving here we got all of there medical records transfered and starting with the Doctor, the school system, teachers, people in general we have been met with skepticism. I hear " I just dont see it, maybe it was a misdiagnosis. / Are you sure." So over the years I have wondered and continued to read. I truely do not believe they were misdiagnosed. If only the skepticis could see where they started from and how hard they worked to get where they are now. It has truely been a struggle (not only for them but for me too). One of my girls is doing great in school and she stays focused and generally makes straight A's. But when she comes home (her safe place) she falls apart and is a complete basket case. My other daughter is the complete oposite and she also has been diagnosised with ADHD. She is having so much trouble in school (in the classroom) In kindergarten I requested an evaluation for an IEP because she was already struggling. The tests they do are one on one and that is where she thrives. So her IEP was denied because in their words she may have problems and a diagnosis but as far as they were concerned it was not affecting her learning. Now we are in 2nd grade and she is continuing to fall behind (barely pulling C's in each subject). Still no IEP. I have requested a new IEP evaluation and I pray things turn out better so she can get the help she deserves. Also since we have been here she has not seen a doctor other than her pediatrician. I am really starting to worry. I keep hearing stories of AS kids getting older and they may seem to be ok that issues will continue to creep up. It may be old issues or new ones. I have a friend that actually sits for a family that has a teenager that last year was mainstreamed and doing great but she started having problems and couldnt cope and this year she can not be left alone. Do things change like this? Is this what I should expect? Never knowing if things for my girls will completely fall apart scares me to death. I guess after writing all of this what I really want to know is if other people do not see what the doctors did in the past do they have the right to question it as if all the things the girls went through was just BS and that the diagnosis was wrong? Do I continue to stick things out and persue assistance and treatment on a diagnosis that everyone seems to question? Does AS just go away or do I just wait til something happens and one of the girls looses it and then look at them and say I told you so? Help! I really don't know what to do or where to go.

They don't have any basis whatsoever on which they could legitimately question the diagnosis. Stick things out; don't give up on the treatment. Accommodations have helped me greatly in college. AS doesn't go away, just like your brain won't suddenly shift to that of an AS person. However, symptoms can become less severe; my sensory issues are now almost gone, and I can easily pass for NT (stands for neurotypical, which is a term referring to those not on the autism spectrum) in social situations. The negatives CAN be lessened with time and effort, though.

I hope you make good use of these forums; the people here are extremely helpful, and you will find someone who has experiences like yours.

Also, just curious, did you get them diagnosed at Georgia State's Regents Center? That's where I went last year to get my legal diagnosis.

Welcome Seven is a hard year for many kids. With schoolwork just starting to get harder and social demands becoming more difficult, it's not surprising your daughter comes apart when she gets home. Most of us here can totally identify with that.

I would like to suggest, however, that you edit your post to make paragraphs. A lot of us (me included) have a difficult time dealing with a big block of text like that, and lose track very easily if it isn't broken into chunks. It's easier to communicate when long posts are broken into bite-size pieces.

I have found it easier to get help after things have been very bad for a while; in fact, I got my diagnosis after I had to spend time in the mental ward (I was twenty and my mom had refused to let me be diagnosed as a child, though she knew very well I had autism). But if you can get your girls the help they need without having to have a breakdown to point to, then that's much, much better.

The important thing about accommodations at school is that it isn't a matter of giving them unfair advantages; it's a way of giving them what they need to show off what they can do. Other students given the same things wouldn't do much better than they do now. For example, in college I get a quiet room to take tests in--other kids, who can concentrate in a classroom, wouldn't do much better; but for me, I get one or even two letter grades higher.

That a child is getting "A"s can make it more difficult to get accommodations for them. But it is still totally justified. Remember that your IEP doesn't just cover getting good grades. It covers things like emotional stability and self-help skills. If your daughter is so exhausted at the end of the day that she just crumbles, then something needs to be done about it. There's one good thing about those A's--it might let you justify getting her less homework to do, so she can really relax in the evenings. After all, if she's learning just fine without it, why does she need it?

Another accommodation you might request would be the ability to go someplace quiet when she needs to relax. For example--the restrooms; the school library; even the hallway. Learning to self-regulate often includes learning to know when you are getting overloaded and when to get away from things and refocus before coming back to them.

AS does not go away. What happens is that we learn to deal with the crazy, chaotic world we are in; and as we get older, things get easier. The teen years are often especially difficult for autistic people; no surprise, with the increased social demands, switching from classroom to classroom at school, and being expected to do more and more and be more and more self-controlled and social. People do of course lose their diagnosis; they don't lose their autistic neurology, but when they no longer have trouble due to autism, they can no longer be diagnosed. Your girls may be headed that way; who knows; but what you really want for them is happiness, right? In that case, it doesn't matter which, because autistic adults can be just as happy as technically non-autistic ones.

Don't let them tell you that because your girls' problems aren't glaringly obvious, that they don't need help. They do. One girl is working hard and collapsing afterward; the other is working way below her potential. It's often easy for the school system to justify not giving kids the help they need by saying, "What are you doing here, when we have kids with REAL problems?" Don't let them tell you that. Disability comes in all forms, and mild disability is still disability. If your girls need help, don't let the school tell you they're just fine as they are. They probably don't even need huge amounts of help--just little things, enough to get them over whatever obstacles they're facing and show off what they can do.

Hello. I wish my mum was on this forum because she went through similar thing but a lot later in my life. I personally wish I had been diagnosed at 7 rather than 19 (we knew I had SOMETHING when I was as young as 11) because lots of things can change between those ages. At 7 years old, I was the cleverest kid in my class and although I was extraordinarily odd, I was content.

The point I am not really making (sorry I am struggling for words today!) is that you NEED to keep telling people that your girls have AS because although they are doing well now, mistreatment could mean that they struggle in the later years, especially in their teens. I'm not trying to scare you or anything but that's what happened to me, however I had NO diagnosis, NO help and a bunch of bullies beating me up... It's no wonder I went mad and ended up in hospital... Early intervention CAN stop this happening. Don't accept any crap like: 'they're just a bit shy' or 'all kids do that', make sure they KNOW it is diagnosed. As I am not a mother myself, I can't understand what it is like to be in your position but as I know from my mother it is difficult. She had one AS and one AD/HD! We weren't twins (although I was so short I was often mistaken for my brother's twin!) but similar situation.

Just don't give up

I feel that you should love and accept your girls as they are, and let them indulge in whatever special interests that they develope along the way. Something that I wish my parents did for me. Acceptance is the best cure.

pat2rome:
The girls started out at the Marcus Institute. They were wonderful. There was a wait to see the Doctor there so I got on the waiting list and looked around for another Doctor. I found Dr. Leslie Rubin. I was able to get in with him first and he sent the girls to a specialized Psychologist Fran Friedman, PhD who did all of there tests and evaluations. Until we moved the girls continued to see Dr. Rubin and also received services for behavior at the Marcus Institute.

Thank you to everyone for all of the information and feedback.

Hello

For starters, Welcome to Wrong Planet.

Secondly, you may want to visit the parents forum, located here:
http://www.wrongplanet.net/forum19.html
It is the spot where there parents can get together and chit chat about things. I don't want to imply that your not welcome on the general forum, you just might get more specific advice from other parents there.

Thirdly, having asperger's syndrome does NOT go away over time. Your stuck with it until you die. That being said, you can learn to overcome your difficulties and make progress (as you have noticed), so some of the problems do lessen over time as the child learns and matures. But I would still continue to give them support until they feel that they are ready to operate without it.

And lastly, I wouldnt worry too much about what grades your children are receiving. I mean it is 2nd grade, do you know what type of useless and unimportant busy work they teach in 2nd grade? Your daughters are being taught about things like what the pilgrims did. It isn't as though knowledge of the pilgrims is a very important life skill that they need to learn and get As on.