I've always known that ds (6 years) was different and had challenges, but he has always also been so much more interesting and full of personality. Lately though, his challenges have really been overshadowing his strengths. We have finally started to seek out help and a formal diagnosis to enable him to get the services he needs. We were seeing a behavioral therapist that thought it was pretty obvious that he has aspergers. I've always known that, but finally decided to seek out a formal diagnosis so he can get the services that will help him.
We have started to share with friends and family that he is being evaluated for aspergers. I'm often times finding that I wished I didn't. It seems that everyone has their idea of why, what we should do, what we shouldn't do.
Ds has been gluten & dairy free since he was 4. This diet really helps him. The positive changes in his behavior after starting this diet is the main reason we decided to hold off on formal testing sooner. My dad told me the other day he believes that being gluten free is why ds acts out. Ds had a meltdown while out of town near the holidays at my sisters house because he wanted a cupcake. Really it was because of sensory overload. Traveling, family party, video games (they have a wii, we have no video games)... My dad witnessed this melt down and now believes he melts down because he can't have what everyone else can have. He brings up gluten just about every time I talk to him.
I opened up to one of my close friends about his behaviors, therapy and diagnosis. She called me today to "tell me a story that she thought I would like". Her nephew spent the night at her house this weekend. Apparently this child has ADHD or something else going on. Not quite sure. When her sister dropped him off she asked her to make sure he takes his medication in the morning, make sure he does not have any red40 & if he started to get worked up, have him do some push ups. She was laughing about it and just thought I would think that was so funny. As if those requests were way out there. I hope I never need to give her some "crazy" requests like that.
My mom seems to think that I would be much happier if I put my kids in school and daycare and returned to work full time. As if that would solve everything.
We are currently homeschooling and trying to figure out what we are going to do for next school year. Of course everyone just seems to think that school is this magical place where ds will have no issues. You know, because they are all because he's home schooled. Of course my homeschooling friends like to remind me that homeschooling him is best because no one will ever love him the way I do.
I have some people telling me I should medicate and other friends telling me to make sure I never do such a horrible thing. Its been recommended and I am open to the idea, but I'm just not quite there yet. I would like to see if we can manage without it.
Then of course there is the group that does not believe there would be any issues if we just disciplined more. You know, spank the aspergers out of him.
The funniest one was if we only allowed Jesus into our hearts (we're not religious), went to church and followed the bible as a life manual then everything would be fine.
Ds had his biggest melt down ever the other day while dh was at work and unable to talk. After the melt down, I was really upset and really needed support. I was going through my list of contacts in my phone and realized there wasn't one single person I felt I could talk to without judgement. Dh and I are feeling really isolated. We're still new to therapy and and figuring out what is best for ds and our family. Its so difficult to also deal with everyone else's input, but really could use someone to talk to at times.
I suppose I am mostly venting, but also wondering how you went about building up a real life support system? How do you deal with everyone else having all the answers, as if it were so simple? I know it would be helpful to find other families dealing with similar struggles, but where do I go about finding them? Has anyone joined support groups? There is one local aspergers support group that I know of. Unfortunately it is run by our last therapist who I did not like and would prefer to stay clear of his advice.