I went to my first Asperger's Syndrome support group last night. It was amazing! Even though I've been reading a lot over the last couple of months and I know that we are not the only ones with this it still feels like you are alone. Especially when you look around and see all the "normal" or as they say in the support group "neuro-typical" children. But almost immediately that feeling of being the only ones was gone. These people, these parents knew exactly what I was talking about. They got it. They understood. They had suggestions and advice that comes from trial and error. The group last night was composed of 4 women that have teenage boys with AS, a man that has an 8 year old they suspect has AS, a man that has a 13 year old girl with AS (very rare, less than 20% are female), a man that has a 13 year old that has autism, an older gentleman that has a 20 year old with AS, and finally a man in his late 20's that has AS himself. It was nice to see an adult with AS because he was able to vocalize some of what he feels and why he acts certain ways. He was explaining that to him it's difficult to make eye contact and listen at the same time. He has to focus on one thing at a time and if he tries to do both he has breaks in his concentration. He feels he listens and comprehends better if he doesn't make the eye contact. That made sense in my mind. Since so many of them have older children it was nice to hear how they developed over the years so I know what to expect. And to be honest it's not a pretty picture... These people even stayed an extra hour to talk with me. One of the things that came up was disciplining. I asked what they do to punish unwanted behavior. Most said they take away stuff that is important to the child...I explained that I do that but it doesn't seem to phase Vincent. He doesn't like it but it doesn't seem to get through to him. They all agreed it didn't work for them either. That's refreshing. I also was asking about what battles to fight and what not to fight. Where does Asperger's end and just normal bad child behavior begin? I don't want Vincent to use AS as an excuse but I also don't want to punish him for something he can't control. The advice they gave was that if after trying normal discipline and it doesn't work then it's probably the AS. I also signed up for a parent training seminar on Disciplining in the Home for AS. The class is taught by a psychologist who has AS himself and a son with AS. That's in Feb so we'll see how that goes. Overall I'm excited for the next meeting. This was definitely a lot of help.
2 comments:
I'm glad you are going to be able to get the answers you need to help Vincent. I'm also glad you were able to figure out what he has.
Few questions...
Is AS considered a mental illness or is it something else?
Is there a way for him to get better or do you just have deal with the symptoms as they come up and he'll have it for the rest of his life?
Is it genetic?...meaning Will he have to watch out for this in his children?
(hug) I wish I had advice to give you. The only experience I've had with autism was when I was 14 and babysat for a boy with severe autism. It was really difficult. I know that Vincent's isn't severe, but I imagine it's just as hard to watch him go through it.
AS is considered a neurological disorder - like mental retardation or downs syndrome. It's something he will have for the rest of his life. It is genetic so yes, he would have to watch out for it with his children. We were talking about it last night and how some adults with AS you can barely tell. The belief is that aspies learn to cope and until something comes up and throws them for a little while. That's part of me trying to find an OT to work with him so that he can learn those coping skills and fit in better. The other thing we were talking about last night is it's kind of a mixed message that we send our kids. The "neuro-typical" kids we tell to be themselves and not to follow the other kids around them...but with aspies we want them to follow the children around them and act more like them. Frustrating for me but I'm sure it's just as frustrating as Vincent...and he really can't communicate his frustration.
Post a Comment