Finding Support so Important


I feel like I have lost so much time.  I don’t know how it got to be October already!  I know most of the lost time was in the hospital and then on medications.  Then I just felt like I was in a fog.  I finally feel like I am coming out of that fog.  I hope that things continue to go better medically and that I can continue with life.

I hope to get back to blogging as well.  I was discussing social media with a co-worker today and it reminded me why I am here.  She was discussing different groups on social media.  She mentioned my presence on social media.  I made a comment that there are a lot of autistics and parents of autistics on social media.  I started discussing that we are all seeking answers or seeking people we relate to.  She commented “imagine what it would be like to not have that”.  I blurted out “I didn’t have that”.

I remember when my son was young and we were seeking answers.  The so called professionals had none.  “Why is he so sensitive to sounds?  There must be something to that” I would say.  They would tell me it was anxiety.  I would read about sensory processing disorder and take it in the “professionals”.  They would say that is just made up.  Sigh.  “Why do his clothes bother him?”  Oh, that is just ADHD.  I would keep searching for answers.  I would tell them how he smeared his poop.  I was told he was symbolizing how he feels shit on by the world.  I would say no, it seems like a sensory thing.  Then someone would say that was a sign of sexual abuse.  I knew that wasn’t what it was.  Oh the lack of information & wrong information drove me crazy.

At one point someone brought up Aspergers.  I read the DSM- lack of empathy- um, no.  The exact opposite.  He seemed to overfeel things, have almost too much empathy.  That could be a whole post on its own, oh wait it has been a few- here and here.  If you would like to read about how the lack of empathy on the DSM is a bunch of BS please check out Rachel’s site here.

The misinformation is just as overwhelming as the amount of information.  Where do you get the right information from?? Now I know.  Now I look to other parents or even better other autistics.  We are all having different journeys but so many things are so similar.  My son has come such a long way.  I remember the really bad days.  And I mean really, really bad meltdowns, throwing furniture, threatening harm.  How I felt gutted.  Literally gutted.  I felt so empty and lost.  I didn’t have anyone that understood.

Now he is doing so much better.  We have bad days but now they are not so bad.  And part of what makes it better is that when he has had a meltdown I can tweet about it and someone else will make a suggestion or tell me it will be okay.   I have received wonderful advice from autistics.  Receiving encouragement, knowing it will be okay.  I wanted to give him space but the “professionals” said that was wrong.  Autistics told me that was how he would learn to deal with his emotions.  @hardaspie has given me some of the best advice.  In real time, on twitter, during a meltdown. (go buy her documentary if you haven’t already)

From all of the interactions I have even learned why I understand my son so much.   Learning that I am an aspie has helped me with my son and with myself.  I have found such support in this community. It is wonderful to finally have that.  I want to get back to blogging.  I want to help others so they do not feel lost like I used to feel.  I hope everyone reading this finds the support they need in this wonderful community.

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Comments

  1. I understand how hard it is. I have yet to be able to get any kind of diagnosis for my son. He is ADD and I have suspected Aspergers since he was very young. The insurance companies don’t care-we were barely able to get the ADD diagnosis. THat has been good, he is on an IEP at school and that has helped somewhat, but we have a long way to go.

    I too think I am an Aspie, but as you said there is so much conflicting information. I read that it’s just the latest popular thing, that people want to have it because they think it’s the cool thing. That makes me want to throw up. I have struggled for many years not knowing what is “wrong” with me. In fact a college professor told my parents just that, the he didn’t know what was wrong with me. I’d love to know what’s really going on, but I may never know. I’m finding lots of websites, and lots more information from the people who really know what’s going on-the people with aspergers themselves.

    The more I read, there’s one I thing I do understand is that there’s some hope for me and my son to hopefully find some sort of normalcy in a world that in a way is getting more understanding,

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