Thursday, 25 September 2014

The Answer to the Question Everyone Wants to Know. Is She In School?

It has been three weeks now since school started.  Micah has attended everyday!  She gets picked up and dropped off in a minivan supplied by the board.  There are three boys who also take it.  I like that the elementary school listened to our request for a minivan.  The small school buses were too noisy and overwhelming for Micah.  She isn't thrilled with the loud volume of music from the morning driver but the kids all use their iPods and try to drown it out.  She can tolerate it for now.

My autism consultant worked on getting Micah's timetable fixed before school started.  The school hadn't given her the computer course she wanted but had given her drama and something else instead.  She needed courses that would make her want to go to school, not avoid it!  We were told that she would be hand timetabled so it was a shock to not get what we were expecting.  Things were worked out and we received her timetable.  Learning Strategies, Locally Developed Math and Drama first semester and then ASD Literacy (whatever that is), Computer Technology (or something like that) and Vocal second semester.

We had asked for Applied English but got Drama.  That did not go over well.  In addition to the course problem, we also had another shock on registration day.  We had told the school in the spring that Micah needed an end locker not one in the middle.  We went to check out her locker and where was it?  That's right!  Stuck in the middle of a bunch of other ones.  I started panicking inside.  Course and locker problems for a kid who hasn't been in school for months.  Not good.  I was going to contact my consultant as soon as we left to straighten out the course and locker problem but my husband was there and said we should go to the office about the locker right away.  We did and they happened to have a new block of lockers which were still empty.  We were taken up and Micah got to choose which end of the block she wanted.  Things were good on the locker front.  Good thing my husband was there, because if I would have waited, it could have been more complicated to change her.  A few days before school started, Drama was switched to Applied Science so things were good on the course front also.

The first day of school was only for grade 9's.  Parents were to attend in the morning to go to an assembly and a quick rotation through the classes that their child would be taking.  The kids would attend some sort of activities and then do shortened classes in the afternoon.

My autism consultant was kind enough to keep the morning open for me, just in case.   Micah ended up being fine.  I know she had anxiety but there was no refusal at all.  My anxiety was terrible.  Having to go to a huge school knowing nobody, yet having to act like it was nothing so I didn't make Micah's anxiety worse was hard.  My consultant asked if I wanted her there.  Of course I did!  I didn't know what to expect and the school wasn't exactly forthcoming with too many details for us.  She met us there and we all went to the assembly together.

The kids then went to their activities and my consultant confirmed that there would be someone to make sure Micah was comfortable and could leave if needed.  The two of us then went to class.  We had made up information packages for each staff member who would have contact with Micah and brought them to hand out because we were not allowed to meet the teachers before school started.  Some strange high school union rule.  We had met the teachers Micah would have, the week before school started ever since Kindergarten.

No one but an EA was at the first class, Learning Strategies in the ASD class.  She got an information package and I learned nothing about the class!

Next up was Locally Developed Math (for kids more than a couple of years behind in math).  I looked at the workbook they would be using and told my consultant that Micah would find it too easy.  I thought she would feel good at least knowing the stuff though.  The teacher was very kind and a great fit for Micah.  She also did not send homework home.  Good thing since if they can't get it at school, it's certainly not going to magically happen at home (unless it was just due to bad teaching at school but not likely the case in this class).

Science was next up.  Another perfect teacher for Micah.  Although he was male, he did not have greying hair like the one who caused her PTSD.  He is young and also a special education teacher so a bonus for us.  

Finally we went back to the ASD class for last period, which we told them, in the spring, we wanted used for homework, if there was any.  They have said that it is for social skills, executive function skills etc.  It is a non credit class.

For the most part things have gone well.  As expected, Micah found the Math too easy and wanted out of the class.  She ended up getting Applied English, which she is enjoying.  She is really liking the science class also.  They were allowed to see their marks this week and she has 99.3% so far!  She could probably be doing Academic Science but she wants to stay where she is.

We have had a few glitches but so far we have gotten Micah through them by telling her that we will take care of things.  One thing is that the teacher in the ASD class said there would be a few minutes for homework and then they would go on to other things like social skills and executive functioning activities.  Micah came home in a panic about that.  I emailed our consultant, who emailed the teacher to clarify.  She mentioned the same thing to Micah the next day that the homework time was mainly for questions and they would go on to the other things that were planned.  Micah is upset about it because we told her that her homework would be completed there (other than projects and studying for tests of course).  I told her I would speak with our consultant at my next appointment and we would see how things go.  So far there hasn't really been any homework come home but it is early in the year.  I also want to know what they are teaching for social skills.  I don't want Micah being told that her autism needs to be fixed, which is usually what is done in social skills classes.  The whole eye contact thing and stuff like that.  For me, homework is the priority in last period and executive functioning skills like organization and planning.

It would appear that in high school, there is no communication book, so Micah has to remember to tell me things if she gets told.  I don't know how you find out what is going on at school as there are no letters home except for field trips.  There was nothing about picture retake day.  I think these may be some of the unwritten rules that we are supposed to magically know about.  Like the picture taken on on registration day for their student card turned out to be the picture for the yearbook and the package to purchase.  Micah had hers done with her usual frizzy hair and it wasn't a great picture.  She had come from working at the barn in the morning!  We know for next year now at least.  I think stuff like this should be clearly spelled out for parents especially, since some of us are on the spectrum also.

Another worry I have is that they didn't have agendas to write homework down, so I got Micah a notebook.  She knew she had a science test coming up but didn't know when and didn't bring her notes home.  I would think in an ASD class, the teachers would be reminding the students to write down their homework and tests and reminding them at the end of the day to take the things they need to do their work or studying at home.  That is part of teaching the executive functioning.

Another day, the teacher told the kids that there is no ASD program in grade 11 and no EA's. They would be on their own (magically able to have perfect executive functioning and be able to deal with everything themselves, including noisy classes and cafeteria).  It would appear that in grade 11, you are no longer autistic.  This of course upset Micah.  I told her things can be put in place and there are ASD classes in other schools past grade 10 and that we would take care of it.

Micah's latest news today is that the teacher is encouraging (pressuring) the kids to eat their lunch out in the overwhelming cafeteria or outside with the wasps.  This is happening everyday.  None of the kids want to do this.  They are more comfortable in their classroom of five kids.  It turns out it is not the teacher who is wanting this.  She is just the messenger.

It would seem that Micah has some sort of misunderstanding of the teacher's tone of voice because there have been various misunderstandings but we have probably worked it out now. 

Micah's anxiety seems to have risen a bit but so far it is not overwhelming her.  She is still going to weekly therapy and doing well.  She seems to be talking to the therapist more, not only the horses.

Overall, I would say that so far the school year has been a great success.  I just have to keep my anxiety down too!

Saturday, 20 September 2014


I know the text on the sidebars of my blog is awful right now.  I have tried to change it to white and it only did one small amount.  Does anyone use blogger and know how to change it?

New Circle Drawings

For those of you who haven't seen the past circle drawings, they are in an earlier post
I draw my circles to help me focus and to help keep the anxiety down, especially in meetings or groups, even at church.  I have decided to add a drawing to them and I really like how they have been turning out.  I couldn't get them to centre nicely or anything and it's late!

The first one I did

number 2




Monday, 15 September 2014

Interpreter Needed

Writing this at church!


Seems to be everywhere I go.  Not necessarily true, but it feels like it.

I know I don’t make it easy for people.  So many fears and anxieties.  

I can’t approach people and from what I’ve been told, I am unapproachable the way I act.

I want to do things and talk to people but I can’t put myself ‘out there’.  People say ‘just go and do this’, ‘write a script’, ‘things will be okay if you just do it’.  

I don’t know what ‘it’ is or how to do ‘it’.

Who is there to be along side to teach me or support me?

I’ve been at this church for over 1.5 years.  I like it.  It seems friendly but they don’t get autism.
Understandable, since most people don’t.

They have some ministries that I know of.  Others, I don’t.
I might like to be involved, but I don’t know how or who to talk to about what there is that I have the ability to do.

Sometimes, I am jealous of the deaf attendees.  It is wrong that I feel this way, I know.  It is hard because they have interpreters. 
I’m not deaf but I do need a type of interpreter, just not the same type.  I need someone to interpret the social and communication aspects of church and life in general.

I sit in the top back corner of the balcony because I don’t like people behind me.  I need to find a suitable seat downstairs in the sanctuary though due to my physical issues.  I get worried going down the stairs after sitting so long, I'm stiff and more clumsy than normal.  I can’t just walk into the sanctuary and search out the perfect chair for me.  I either need someone with me or to be there super early and alone to do it.

Now that summer vacation is over, the service is fuller and someone will have to sit beside me.  For some reason though, it was not full this week.  Bonus for me!  We are going to two services in October though, so I will have to deal with that change and which to go to.  It won’t really matter since I have no relationships there really except one anyway.

What will the person who sits beside me think when they see me drawing, writing, or playing with my fidget toy?  They shouldn’t think anything of it, but most people do (see we do have theory of mind!).  

It takes a lot for me to come to church alone every week with no one to talk to or joke with.  I’m sure there are others like me here, hidden in the multitude of people interacting with one another.

It is not just a problem at church.  It happens everywhere I go.  I’m on the outside and don’t know how to get in.

Maybe one day, I will have the key!


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.