Tuesday, 29 April 2014

Autism Positivity Flashblog Day 2014 "Expressions of PosAutivity: #AutismPositivity2014"

April 30th is Autism Positivity Flashblog day and I can't think right now so I am having trouble coming up with something.  I have too many exciting plans that I can't talk about yet!
Autism has never meant anything bad to me.  Being autistic is just the way I am.  I was born this way and always will be this way.  It is a way of being.  I like being "a little different".
I have a lot of anxiety, especially when I am at meetings with other people.  I also struggle to focus when listening to a speaker.  Autism has given me the skill to be able to repetitively draw circles.  I try to draw the perfect circle which of course never happens!  It helps me focus and decrease my anxiety while at meetings and groups.  It may come across as rude to the speaker but it is actually more of a compliment to them since I am trying to focus on them.  I am able to focus the more distractable and anxious part of my brain on my circles while giving the rest of my brain the ability to focus on the speaker.  See, we can multitask!
Once my circles are drawn, I spend hours colouring them.  I try to find just the right colours for each picture.
I have now progressed from just filling a page with circles to actually drawing something and filling it and the rest of the page with circles.  I'm not very skilled at drawing so the designs are simple but neat looking when filled with circles and coloured!
  The old version!                             

New Version

Friday, 25 April 2014

Autism at Church

Today, I am going to write about church.  I am a Christian and have been for about 20 years. 
At the first Church I attended with my husband, we were involved in ministries like hospitality, greeting, and cell church leaders.  We went to lots of workshops and things like that until Micah was born.  
I was comfortable enough that I made some friends and had many acquaintances.  I never felt like I fit in though.  Other people would feel a closeness to God and feel him speak to them in various ways.  Not me. 
 I truly believe and have faith but for me I don’t feel God’s closeness and I wish I did.  I know it is not necessary and I know that I am a Christian-- I professed my faith and was baptized and try my best to follow Jesus.
For various reasons, we left our original church and tried several others.  In general, disabled people do not seem very welcome at church, not most that we visited anyway.  The second last one, I was at, tried to be pretty inclusive of the autistic kids in the kid’s ministry and even allowed me to teach the group Micah was in about autism.  
The church I am currently in seems to be generally inclusive; they have sign language interpreters for those who need it etc.  Autism is just one of those disabilities that I guess people don’t really know what to do with, especially since we all have different but in many ways similar, needs.
When I am at church, I feel very alone even though I am in a big crowd.  It’s not that the people aren’t friendly.  I have been invited a couple of times to sit with someone I think is a friend (Micah’s music teacher).  I still don’t understand the whole friend/acquaintance thing, especially when there seem to be different levels of friendship.  It is too confusing! 
There are greeters at the door who say hello and you have to shake their hand (not my favourite thing, but not horrible) to be polite.  There are also people who walk around in ‘Ask Me’ vests, two of whom have been very friendly and try to catch my eye and say hello.
It is hard to make myself go to church, especially some days, even though I love it and need it.  I try to get there early because: 1) I suck at parking especially with my new car and 2) I need to get there before it gets too crowded.  I am like that anywhere.  I need to get in before most people.  Even when I get to church early, there are many people milling around chatting, something I can’t do and its gets very noisy.  I don’t even know if they know each other but they are able to do it.
I sit in a top corner chair at the end of an aisle on the balcony.  I always do that so I can make my escape if necessary, but I am always afraid to leave anywhere in the middle of something. At least sitting in the back corner, there is nobody sitting behind me (that really makes me uncomfortable for some reason) and a person on only one side of me.
The good thing about this church is that they try to encourage people to be scent free.  Sometimes people forget or don’t know but it is good most of the time.  In every church, I have been to in the past, it has been hard to stay and breathe because of the strong perfumes and colognes.
After one or two worship songs (people are encouraged to stand but you don’t have to and I don’t because I would get too sore standing for too long), we are asked to greet each other.  That is a very hard thing.  I do stand up and shake hands and say hi to those closest to me when I can figure out the right timing but it is hard.  I don’t know the people and many of them either seem to know each other or are just able to chat.  I’m sure for most individuals, it is a good time to get to meet new people.  For me, it is a very uncomfortable time, where I have to pretend to know what I am doing- I have to put on a fake smile, shake hands, and say hi.  It’s not like I don’t want to get to know them but it isn’t going to happen that way.
I mostly keep to myself at church because I don’t know how to interact.  When I get there in the morning, instead of joining a cluster of people and chatting, I avoid eye contact and head straight for my seat.  It can be a real struggle for me just to go in the building.  At the end of the service, I leave during the last worship song so I can avoid the crowd.
I probably come across as unfriendly and like I want to be alone, but that is far from the truth.  I want to socialize a bit. I don’t know how and having severe anxieties, I just can’t.
I have been at this church for just over a year now and know one person.  I miss having the mentor I had at our first church and going for help from the Freedom ministry (kind of like counseling).
I sit in my chair during worship, sometimes singing the songs in my head, otherwise usually just playing with my fidget toy or biting my nails.  During the sermon, to help me focus, I will draw my circles or sometimes just use my fidget toy but the circles are better for keeping me focused.  I’m not sure what people think of me doing these things.  I’m sure some think it is rude or childish.  I am not disturbing anyone or making any noise so it shouldn’t matter.  We all need our own way to be able to participate in certain things.  
I like this church but still feel like I don’t belong.  I’m like an outsider watching things happen.  As Brant Hansen says in his article, “Mr. Spock goes to church: How one Christian copes with Asperger’s syndrome”, “Imagine Mr. Spock at an evangelical Christian tent revival, and you’ll get the idea.”
I really don’t mean to come across as rude and unapproachable, but I don’t know what to say, I struggle with eye contact, and struggle with what to do with my body.
There are small groups (like Bible studies) available to join, but I can’t join a group of strangers, don’t know the format, and don’t have a babysitter. 
I would like to feel part of the church family but don’t know if it will ever happen.  It is most important that I have a relationship with Jesus (which I do) and the rest would just be a bonus.
What do I think the church itself can do to help autistics?  Not completely sure but maybe some teaching about autism and differences and that just because a person looks and acts like they want to be alone, it doesn’t mean they do.  They just may not know how to interact.  Many autistics cannot initiate interactions with others but we are usually happy to have others initiate with us.  Maybe a buddy system.  It could be different people rotating so it doesn’t feel like a chore to them but once they get to know the autistic person and the other way around, a true friendship might develop.  Either way, the autistic would be helped to feel more comfortable in the church setting and give them someone to talk to and ask questions.  The buddy could explain all that goes on at the church and the different areas and ministries.  
Overall, I love going to church and being a Christian but would also like to have the fellowship that comes along with it.

P.S. Great looking movie finally in limited release in Canada called God's Not Dead.  Watch the trailer!

Saturday, 12 April 2014

A Set Back

Micah started a new therapy for the PTSD three weeks ago.  It seems to be going well.  She is trying equine psychotherapy.  So far she has learned things like body space, how to connect how she interacts with the horses to how she interacts with people, and learning to relax to encourage her horse to do something. There are other things I'm sure but she hasn't mentioned them.

Micah told me yesterday that she was trying too hard to get a horse to do an obstacle and was told she needed to relax and make it seem like it didn't matter if the horse did it or not.  Then the horse was more comfortable doing the obstacle.  I am really hoping that this will translate into other parts of her life.

This week I told Micah she could start going to the playground at our local school with her friend.  She went the first time and when she came back after a short time, she told me something had "freaked her out" but she would tell me later.  She thought she had seen the teacher who had caused her PTSD.  We both knew that was not possible as he committed suicide almost a year after she left the school.  She also saw some of her old classmates.  We talked about it a bit and I thought things were going along as usual.  

Over the next couple of days, I could tell her anxiety was getting worse -it shows in her behaviours which is something she has started writing about in her blog at times.  I wasn't sure what the cause could be although we had to take the dog down to the behaviour specialist and he spends a couple of hours at least with us each time we go.  Micah struggles to sit that long but she had her iPad.  Then we had to rush home for dinner and get her to her riding lesson.  It gets a bit stressful with days like that.

That was Thursday.  On Friday, she had therapy and I had my allergy shot and then she was to have her lessons.  Ten minutes before her teacher Mrs. H. was to show up, Micah asked me to cancel, which is really hard to do with that short a notice. She begged me and I said it wasn't possible but maybe she could try just a little while. She couldn't and went upstairs to hide.  Mrs. H. came and I tried to explain the situation.  By that time I figured it probably had something to do with Micah's scare at the school yard. 

I suggested to Mrs. H.  that she might go up and see if Micah would respond to her.  She went up and  of course Micah would not even look at her.  This was something new for Mrs. H. to experience with Micah.  She had been an EA in Micah's class until December and then switched to teaching.  This sort of behaviour was never seen in school.  Micah always struggled through until she got home.  It was good that a teacher finally got to see one of the things we have spoken about but they have never experienced.

 We talked a bit longer and then we agreed that I would email Mrs. H. in the morning (she comes Friday's and Saturday's for a couple of hours) if Micah could not manage her lessons again.

Later that day Micah wrote her latest blog post which you can read here.  It had to do with the incident at the school yard.  This confirmed my thinking so I at least knew what had been bothering her the past few days.  I hadn't really thought it would be a problem until she suddenly wanted to cancel her school lesson.

This morning seemed not too bad and Micah got to her singing lesson but still could not manage a school lesson so we had to cancel again.  We were able to talk about it in the car after music this morning and Micah also said that her therapy is helping so that is a very good thing.

I am hoping that things will get back to normal (for us anyway) over the week!

Micah's first ride!

Tuesday, 1 April 2014

Two Blogs

Micah managed to write a couple of posts last night and published them today.  They are mainly related to her autism this time.  It is great that she is starting to get her feelings out.
In this blog post, "The Rules I Follow", she talks about the rules she has for herself.  Many of us have rules so we are able to survive better in the world which can be very confusing if you are autistic.
In her second blog, "Some of My Secrets Revealed", she writes about bullying that she has experienced from supposed friends.
I really hope she keeps up the writing because we are learning so much more about her and the way she thinks.