Monday, 8 September 2014

Flappy, Brave, Anxious, Changes.....

This post was started a few weeks ago and things were kind of different.  Life is becoming more ‘my normal’ again.  School has started but I will talk about that in another post.  I will say that Micah has gone every day so far though!

Things have been kind of weird.  They have been good and bad.  My anxiety has been bad as usual but I seem to have had a few brave times as well.  It is very confusing!
My post may be all over the place but that is what is happening in my life right now.  That also seems to be pretty normal for me too.
I had a public meltdown at a hospital.  Our family had a very stressful day and I was asked by my husband to do something that I struggle with normally.  Not only that, but we were in a different city in a bad area.  My job was supposed to be hunting down a grocery store because we weren’t prepared for him to have to stay overnight, we thought it would be a quick fix.  The problem with looking for a grocery store was there were no big grocery stores in the area, so it would have to be one of those small private stores (not sure what they are called!).  That type of thing is harder to Google.  It would not have been safe for me to wander the streets, obviously looking like I didn’t belong and looking scared.  It makes you a big target, especially in a bad area.  You have to at least look confident, which I wouldn’t have done.  So I had a meltdown.  My daughter thought I was laughing, although I was crying.  I really tried to hold it in like usual but it didn’t happen that time.  She kept asking why I was laughing and I did something really wrong and told her to shut up.  I did of course apologize for that, when I calmed down.  I rarely have public meltdowns, even at home.  My family mainly just gets the irritability part, which is not pleasant for anyone.  I try to hold it in.  Sometimes, I cry when I am alone, but even then I can’t always, no matter how much I need to.
The next morning I was in a rush to take things to my husband and forgot I needed gas.  As I have written before, I usually go across town to the full service station because I find the self-serve pumps too confusing.  The travel time would have been a total 1/2hour there and back and then the wait to get the gas on top of that.  I would probably lose 45 minutes.  I decided to try a station near the highway that used to have full serve also.  There is one closer to our house, but I have had nothing but trouble there.  My daughter and I got there and I took a deep breath and got out to do it.  Instead of the usual confusing list of written steps (with missing information!) for me to go back and forth between reading and doing, the pump had one step at a time on the screen.  Once each step was completed, the next came up.  Perfect for an autistic person with executive dysfunction!  For a change, it wasn’t an embarrassing disaster. 

Just so you know, I was able to pump gas when I learned to drive about 25 years ago.  They were the old fashioned pumps with no computers or anything.  It was basic.  Stick the nozzle in and press the handle- simple.

The following week, good and bad happened.  The good ended up being downplayed due to my catastrophic thinking- I will write about that one day.  I am trying to get an assessment for Ehlers Danlos Syndrome and my resident doctor said he would look into it.  That usually means nothing will happen.  In the past few weeks my pain has been worse so it was a good excuse to get back in sooner than my physical to see the doctor.  I could get in quickly to see another resident, so it seemed like a good excuse to try someone else for a referral.  I got a prescription for a medication I don’t want to take and no referral.  It was a waste of time.  It seems hopeless that I will get a referral.  I have no interest in taking the drug prescribed.  There must be a pain medication that won’t make you gain weight, wreck your stomach, liver, or kidneys, or isn’t addictive.
That was the bad part of the day and it of course ruined the whole day.  The good part was that I received a letter saying I qualified to receive a one-time funding of up to $500 for support and/or recreation.  I will be using it for community support to learn to pump gas, learn to use a car wash, maybe take some music lessons, and do other things in the community that I need support for and don’t usually do.  The person (friend?) I asked to support me can do all of those and agreed to help me. 
It was good news getting this funding but the whole doctor’s appointment disappointment cancelled out the good news.  It completely ruined my day.
I did some more research and found out from the genetic clinic where I want to be referred for assessment, that my rheumatologist can refer me.  My husband had already mentioned my issues to the rheumatologist because he sees him also.  I ended up faxing them a request for a referral since my next appointment isn’t until November.  My husband called them this week (it has been about three weeks since it was faxed).  Even though our machine says it went through, the office said they didn’t get the fax so I sent it again yesterday and he hand delivered a copy of the request, so hopefully my rheumatologist will refer me and I don’t have to worry about the doctor.
I flap and sometimes jump and flap when I am anxious.  I am not one of those ‘happy flappy’ people, I usually only flap when frustrated and anxious.  I have always hidden it, even from my family for the most part.  I know there is nothing wrong with flapping but when you have been taught to act ‘normal’ and do things like everyone else, it is hard not to hide.  The past few years, I have been letting it out more when I’m alone.  Flapping makes it feel like some of the bad is coming out even though it is still there.
My daughter has grown up being around other autistic kids who have various stims and she has never made fun of them.  Sometimes, she will comment to me about certain ‘behaviours’ and I explain why the other individual might be doing it and I relate it to some of the things she does.
Here is a good place to insert the Loud Hands video.  Just click here.  I love this one! 
One day recently, I was in a rush and was struggling with something with something on the laptop.  I was standing and did a little jump, flap, and vocalization.  Micah thought it was the most hilarious thing.  Obviously, something has gone wrong somewhere in my parental instruction or it is just because I am her mother and kids make fun of their parents.  She knows I’m autistic but has never seen me do that. 
Lately, I had some weird brave days as well.  I had been having a strange urge to jump with the horse.  I stopped jumping years ago.  I’m too afraid of falling and hurting myself now, so not jumping is one way that there is less chance of a fall.  One week, I decided I had to jump so I did one jump.
There is another bad thing (for me not for the other person) that has happened.  The first part is that both of the girls who Micah rode with, have gone to another barn as of the beginning of the month.  She will now have private lessons because there is no other group for her.  She is okay with that but really misses the one girl.  The second part is that I knew change was coming with my riding instructor.  She was going to be moving and then getting a couple of horses to teach with at the other barn where she was working during the day.  My lesson had already changed from morning to afternoon and then it was going to change to evening in a group when she started full time there.  Next, when she eventually moved, if we wanted to keep her as an instructor, we would have to switch barns.  I never told Micah any of what was going on because she didn’t need to get anxious about it until it was a definite thing.  I hate change and I get very anxious about it, especially if it is big.  In my lesson a couple of weeks ago (the week before I was to switch to nights), my instructor told me she got an amazing job offer and as of the first of September would no longer be able to teach us or work at her other job.  I  am pleased for her.  For me, it was going to be a sudden and quick change.  I had to hold in the tears for hours.  It has been the longest amount of time that I have had an instructor.  She knew how we worked very well and understood our needs.  Micah’s lesson that week was her last with the girls in her group and our instructor.  Micah seems to have done okay with the change.  She had the instructor we have now when we first started riding at the current barn.  For me, it has been a bigger adjustment and I still get very upset.  At least I already knew my new instructor.
It seems like every time I get to know someone they leave.  It happens all the time.  I’m constantly in fear of people leaving.  Hopefully it doesn’t happen, but it wouldn’t surprise me if my autism consultant is next.  I rely on the people who instruct and help us.  I don’t have a social life really or a job so those are the only people I really have to talk to.  I really try not to rely on them but it gradually happens over time no matter how hard I try not to let it.
There are many changes going on right now and there have been good and bad things happening.  Micah seems to be handling it well.  Even if she is hiding some of her anxiety and upset, it usually shows up in the way she speaks to us and acts so I think things are going not too badly with her.  Her therapy is definitely helping and her medication increase may be helping as well.
I’m not doing as well, but I do start with my support person (who I think is also a friend?) this week and I will learn some things.