Saturday, 26 January 2013

Camp and Meltdowns

Over Christmas break, the stable where Micah and I ride had a camp for adults and kids.  We rode twice a day and listened to a lecture at lunch.  We were at camp two days one week and three days the next week.
I am used to taking a private lesson and learning dressage so it was difficult adjusting to a group who also had a jumping lesson in the afternoon (change, new people, less space = more anxiety).  Some days were better than others for my anxiety in the lesson.  It is hard to find your own space for circles and such when there are several other people in the group.
I enjoyed camp although I think I would only do a half day next time.  I don’t have a lot of energy due to fibromyalgia, low muscle tone, sensory integration disorder, and anxiety.
The only problem with me going to camp was a big change in my routine.  This meant that things I normally do like shopping at a certain time of day and vacuuming on set days of the week didn’t get done at those times, if at all.
One camp day, I knew we would have to go shopping on our way home.  I don’t like to go to the grocery store after 10:00am because the store is too busy.  It didn’t turn out to be that busy so we did the shopping as quickly as possible.
We got home and I had to let the dogs out of their crates and put away the groceries while Micah called her friends across the road.  They aren’t usually home during the day as they are too young to stay alone and have to go to work with their mother.  Since they were coming over, I had to keep the dogs with me while I put food away.  I also had to start planning dinner.  I was quickly becoming overwhelmed- dogs, groceries, loud kids, and dinner decisions.
I started having a meltdown.
I’m good at keeping it in for the most part.  I don’t know if that is a good thing or not.  Good for others I guess but bad for me.  The bits that do come out in front of people usually come out as irritability.  When I can hide a bit, I may cry, bite myself, tug on my hair, and hit my head (just enough to feel it).  If my daughter isn’t around I take one of my anxiety medications.
It is hard dealing with so many things at once.  I don’t even remember what I did for dinner that night.
Much of my anxiety and my meltdown could have been avoided if I didn’t have so many things happening at once. 
I had to shop so we could eat. We did have other food in the house and it actually could have waited except for greens for the tortoise.  I had to let the dogs out so they could get exercise and go to the bathroom.  Not negotiable.  I had to have Micah’s friends over because she doesn’t have many kids to play with and they will play and talk with her on her level.  I try not to say no to her playing with them.
It is hard to allow myself not to do things and there is a certain point where they can’t be put off any longer.
Between the stress of getting things done, barking dogs, noisy kids, and dinner decisions, it was inevitable that I would have a meltdown.
I just wanted to hide.  The problem is that as a mother- more importantly a mother (autistic) of an autistic child, I don’t have that option.  I have to get on with things.  It is important for me to do all that I can so my daughter can be as successful and as anxiety free as possible for her.  Sometimes this means my anxiety is worse.  I just don’t want her to grow up to have anxiety as bad as mine.  I want her to feel safe and that she doesn’t have to be afraid to do or try things.
Overall camp was good.  It was just all the other things I had to get done at the same time that resulted in a meltdown.  In the future, if I do go to camp again, maybe I can plan better so a meltdown doesn’t happen.

Micah with Winter-July 2010

Saturday, 5 January 2013

New Fear for Autistics

It has taken me three week to write this post.  Partly because I couldn't get the words out and partly time.  It is finally complete.

When the tragedy in Connecticut occurred, I didn’t know what to think. I didn’t know how I felt.
Some people with autism are good at knowing their feelings or have learnt with support how to identify them.  Some are even good at expressing how they feel.  

I’m not one of those people.

I do know that I live with constant anxiety.  Sometimes, I know I feel angry or depressed, both of which stem from my anxiety.  Sometimes, I just am (regular, not severe anxiety).  Any other emotion that I feel, I don’t know what it is.  I know I have anxiety but I can’t really tell you what it feels like.
I can tell you that I have different emotions and feel differently in my body with them but I can’t explain what it feels like or what the emotion is.
When I heard the news about the school shootings, I know I felt like crying but I don’t think I felt sad.  I think it was something more. 

The next thing I heard was that the shooter had asperger’s.  That was frustrating.  It seems like whenever there is a mass shooting lately, news reports start coming out (accurately or not) that the shooter had an autism spectrum disorder or they list traits told by neighbours inferring ASD.
Committing violent premeditated crime against others is not a trait of autism.  Autism did not make this person commit murder.  There is no evidence that autistic people are more likely to commit violent crime than anyone else.  The Interagency Autism Coordinating Committee issued a release related to this issue here

Due to the media report that the shooter had an ASD, many in the public now think that autistics are violent.  When autistics and their supporters heard ASD linked with the shooter, we had to focus on getting word out that autistics are not going to go out and commit violent crime, instead of being sad for those murdered and their families. 
Many blogs were written devoted to quelling the fear that autism means violence and news reports began saying that autism does not make someone go out and commit violent crime.

It was too late.
Facebook pages started popping up. For example, one named, “Aspergers Prevention Campaign: Stop the Slayings” was devoted to ridding the world of autistics.  That page stated that, when they reached 50 likes they would find an autistic kid and set it on fire.  It was quickly reported by many to Facebook and shut down.  It is hate speech.  One page had comments about autistics being monsters that need to be locked up.  While another had comments about a church member calling police on another member because he is autistic and “acts strangely”.  Rachel Cohen-Rottenberg wrote about some of the backlash in her blog:  

I came across the Aspergers Prevention Campaign page while it was still up and not just a screen shot in other blogs.  It scared me.  I didn’t know exactly what I felt but I’m pretty sure it was fear and maybe something more (terror?).  I couldn’t think of what to do.  I did email my autism consultant and also one of my favourite bloggers who has taken the time to respond to me in the past.  She also has an autistic daughter.
This blogger is very supportive of autistics and their rights.  She is fearful for her daughter and other autistics.

It is a scary time to be autistic.  Autistics have had comments about them being potentially violent spoken by strangers, acquaintances, friends, and even family, to themselves or to their supporters, .
I was worried about my daughter and what would happen at school.  Things were fine though. She is also in a partially integrated class and doesn't know many other kids in the school yet.  Maybe in Canada, at least in our area, there hasn’t really been any backlash against autistics.

I was afraid to go to one of the parent supports groups that I attend.  I didn’t know what to expect from the other parents.  My autism consultant said that there had been no talk of what had been going on by other parents or consultants.  She thought I was more aware of it because I am on the internet regularly.  Maybe I’m more involved in the on-line autism community and am exposed to more.
I did end up going to the meeting and the shooter having autism did get brought up but not really anything about the backlash against autistics.

There have been many recent Facebook pages showing pictures of autistics or supporters with positive things written by and about them.  Some have written that they are not afraid to say they have autism.  This is in hope that the general public will see more of the positive and that autism is not going to cause someone to go out and commit violent crime.
Hopefully this inaccurate reporting about autism and premeditated violence (they are not linked) will not be a major setback for autistics and autistic rights.  That we will not go back to the days when people thought autistics should be locked up in an institution.

As the days have gone on since the shootings and the beginnings of a backlash against autistics, my fear is still here but less so than originally.  There is still a Facebook page that has not been taken down but I think things are quieting down now especially with so many Facebook pages and blogs devoted to tearing down the link that the media made between autism and violence. 
A couple of the pages showing autistics and who they really are include:

Thautcast Facebook page