Wednesday, 26 November 2014

Confusing Trip!

This isn't completely about autism but it is about me and does involve my autism because it is a big part of me.  It is about my trip to the genetics clinic for my Ehlers Danlos assessment.

At the beginning of the month, I had my appointment at the Mount Sinai genetics clinic.  I have never driven alone in downtown Toronto other than going to the parking garage across from St. Mike's.  I carefully went over Go bus schedules and where to catch the bus, where to get on and off of the subway, how to get to the clinic from the subway.  I printed maps and everything! I also mapped out how to get to the Cannabis place to get more medication before getting on the subway to come home.  It was within walking distance, so I thought no problem. The problem is that on a map the buildings are nice flat shapes in between the roads and subways only have one entrance/exit.  In real life buildings are 3D and you can't see the roads around them.  It is hard to find street signs, there are no arrows pointing from the Go bus station to the subway, there is more than one entrance/exit from the subway and there are lots of people and construction.

The good thing is that I had some of my medication saved and took it before I left.  Very good thing!  At the Go bus station, the ticket counter was closed and I had to get a ticket out of the machine, which I managed.  Next, I had to figure out which number was the bus stop for the bus that I needed.  I followed some older people to the only bus there and asked if it was the one to Union Station.  It was.  I don't know how you are supposed to know which stop is which but I got it first try so that was okay.

We got to Union and then I had to find the subway.  I thought it would be where the buses pulled in but it wasn't!  I couldn't find any signs pointing the way, so I tried following people but then lost them.  I found a subway finally.   There was construction everywhere in that area.  I got off the subway at the right stop, but there are always two ends to the subway station and both have different exits.  I went the way I thought was right and walked along what I thought was the right street.  It was sort of right, but there would have been an easier and faster way.  Since I had no idea on my map where I was, I brought up Google Maps on my phone and followed the little arrow to get to my destination.  I was anxious, but nowhere near what I would have been without my medication.  I'm glad I had a little left. 

At the clinic, I was supposed to get a hospital card before going up but there was nobody at the desk so I went up without.  I was told to go across the road to the actual hospital and get one there and then come back.  I was given directions but forgot most of them as soon as I went out the clinic door!  I went across the road and knowing that there were two hospitals side by side, I asked a security guard if I was at the right one.  No, I was to go next door.

I went in and found my way to registration, got my card and went back next door.  They took in me at the clinic quickly.  Nice for a doctor's office!

I saw someone who took my health issues down and my family history and then she told me to get into a gown for the doctor.  I asked if I had to and she said she guessed not.  I hate those.  I just had to take off my sweater.  The first lady was nice and the doctor who came in next was also very nice.  She took down more history and asked me questions about things that I hadn't thought to list like if I get migraines. Since then, I have thought of other things but I'm not sure how to get a hold of the doctor.  I will have to wait until they call me for my results.

I found out that I do have stretchy skin.  I didn't know.  It is mostly on my face and I actually score 7/9 on the Beighton Score.  I was told that I overlap hypermobility and classic EDS.  The doctor also was interested in my autism, learning disabilities, and anxiety.  She also said there was something genetically going on in my family, based on history.  The doctor decided on genetic testing for EDS type (hypermobility doesn't have markers and other types may or may not show up), she is also checking for Fragile X (because of the autism, learning disabilities etc), and chromosome deletions.  She said something may or may not show up and that they may have to do more testing.  I was asked if I would participate in a study to which I said yes.  I was told that they would have to bank the blood pending OHIP approval for the genetic testing.  It goes to the States.  I won't get results for months- I was told probably late winter or early spring.  It's going to be a long wait!

They were very nice at the clinic.  Next, I had to go back to the hospital to get blood work done.  I was told they wouldn't know where to send it if I got it done in Newmarket so I had to get it done at Mt. Sinai.  I found the blood lab after a bit of searching.  Places really need to be better signed for those of us who need such things.  It is an accessibility issue.  I didn't have to wait long and then the nurse had to figure out what to do.  There were many vials and they had to go to three different places so she got the bags ready ahead of time so things didn't get mixed up.  That is a long way to go if I had to go back just to redo blood work!

With that sorted out, it was getting late and I was hoping to be home in time for Micah getting home from school.  I had it in my husband's calendar just in case though.  I decided that since I got lost just trying to find the clinic, that I would not go to the Cannabis place (too bad since I am still waiting to get into the other clinic to get a prescription to do mail order).

I used my Google Maps right away to get to the subway quickly and then to Union Station.  I followed the signs toward the Go bus exit.  There was an employee at the bottom of the stairs and I asked him how to get to the buses since it had been complicated getting to the subway.  He said across the street; I thought no problem.  I went out and went across the street and after walking a ways, realized it must be the wrong direction.  Went down another street, nope.  Saw a security guard and he pointed a different way.  I tried it and it was correct.  I messed up again though because, I thought the sign meant to go inside the building but that was for the Go train.  I walked all the way to the end and then back and went outside.  Found the bus!  The bus that was there went to Newmarket Station but not East Gwillembury where I was parked.  I took it anyway or I would have had to wait about 40 minutes for the next one.

I texted my husband to make sure he would be home for my daughter and then we worked out that he would bring her and they would drive me to the other station to pick up my car.  After we had worked out those details, the bus driver mentioned to those of us who had to go to East Gwillembury, that that bus would be along 5 minutes after dropping us off.  I had to decide whether to take the chance and just wait for it or get a drive.  I figured the bus would be late so I asked my husband to still come and get me.  I waited for what seemed like forever!  The bus did come and go!  Oh well, I know for next time to check schedules better and believe the bus driver.

I was at meltdown stage by the time I got home.  I had left at 8:30 in the morning to drop off Micah's iPad keyboard to her at school and then catch the bus.  I didn't get home until after 4:00.  I had gotten lost and gone back and forth to the hospital.  Now, I had to get the dogs out and get dinner both right away.  Not good.  I managed pretty well considering the day I had.  I didn't have a major meltdown but I also took some of my valium as soon as I got in so that I wouldn't.

I don't know how much I could have done differently to make the day go smoother but I managed to somehow get through it.  I didn't have a meltdown in the city so that was good.  Next trip, I will have to come up with a better plan but I also know a little better where I am going.

This picture and others are on items in my new Red Bubble store, just search my name in the store or click here.

Tuesday, 11 November 2014

Micah's Performance

I will be writing up my next post soon.  I did write down where all my time went one day.  I need to do a few.  It still just seems to disappear!
For now, here is Micah's performance at her music school's coffee house.  This year she gets to be part of the big Christmas Showcase, so if you live in the area, it is worth coming to see all of the performances.  She is wearing her new Captain America Winter Soldier shirt! For some reason the video is not very clear.  I will have to check settings and lens cleanliness!

Saturday, 1 November 2014

Communication and Me Updated Version for Autistics Speaking Day 2014

Today is Autistics Speaking Day.  It was started a few years ago to counter the Communication Shutdown day where people were asked to give up Facebook and Twitter for the day to see what it is like to be an autistic struggling to communicate. 
Those are actually some of the easier ways for us to communicate.  It involves typing and not face to face interaction.  I also don’t think they thought about the fact that communication is more than just typing and/or talking, many behaviours are communication.  Not using Facebook or Twitter are not going to let you know our struggles with communication.

I have a significant amount of trouble with verbal communication.  It is an area that is very hard for me.  It’s not that I don’t want to speak:  I can’t. 

My communication challenges are made worse by sensory overload and anxiety.  When these come into play, communication problems make the anxiety worse.  It goes around in a circle!
Some autistic people compare trying to understand a conversation with trying to understand a different language. I can’t properly gauge what emotion people are showing on their face or through the tone of their voice and I can’t always tell if people are joking.  Some of us have trouble understanding gestures, facial expressions, and tone of voice.  Some of us are very literal and have trouble knowing how to initiate, maintain, and end a conversation.  There is also the problem of what to talk about. 
Autistic people can be highly verbal but our words may get stuck.  This can happen in any environment-home, school, and work.
At home, it is difficult for me to initiate and have novel conversations with my husband and daughter.  At least with all three of us on the autism spectrum we have similar problems, although expressed differently.  I avoid answering the phone unless it is someone I know and I feel able to talk at that time.  Sometimes I have to force myself to answer phone calls from professionals.  I also struggle with making calls and many times put them off until the last minute.  In both cases, I don’t know what to say and even if I do know what to say or I have a script, it comes out jumbled up and there can be misunderstandings.
Even with my husband and daughter, things come out wrong or I don’t know what to say.  It is easier with my daughter because we both like horses and she likes to talk a lot about them.  Since I like them too, I can keep up!  Of course now she is into Marvel superheroes and is sending me a fact a day because I am not up on all of it.
I have a psychiatrist who actually talks with you and doesn’t just ask how you are and send you on your way with your prescription.  I appreciate that, but still, I don’t know what to say or how to say what I do want to communicate to him.  I have many things to talk to him about but I just can’t seem put it into words.  I should probably get up the courage to start writing things down and passing him the note but I haven’t yet.  Not that I should even have to worry about things like that but that is the way the world is still.
With the family doctor, the main problem is calling to make the appointment in the first place.  Sometimes, there are things that are hard to explain and I can’t get the point across and so my problem gets glossed over like it isn’t a real problem.   In this case, I’m not sure that writing it down for the doctor would work.
I have the same issue with the dental hygienist not listening.  My daughter needed an x-ray and told the hygienist that the film hurt her mouth.  She has problems with the tooth x-rays because the film makes her gag.  The dentist usually comes in to do it because he knows exactly what to tell her.  The hygienist kept trying and told Micah that it didn’t hurt, which I didn’t agree with.  I told the hygienist that it hurt me and Micah has sensory problems and it does hurt her also.  I didn’t have the verbal ability to ‘get into it’ with her and the x-ray didn’t happen.  I told my husband about it and our torturous cleanings (our usual hygienist didn’t do our cleanings) so he emailed the dentist who said he would go back to cleaning our teeth himself.

Teachers have an abundance of power (at least some think they do) over people with disabilities.  It is important that parents know the laws and requirements of special education.  As a parent, I know what they are required to do.  However, because of my communication difficulties, I cannot make my knowledge known to those in charge of teaching/helping my daughter, and so they think they can push us around.  This has happened in previous schools. I may not be able to get my point across to them or defend myself verbally but I always find a way:  I can do it through email or through my autism consultant who, after talking to me, knows what I want to say.  This way, she can talk to the teachers, principals, and Special Education Resource Teachers (SERT) on my behalf.  She helps them understand what I want for my daughter so that school goes better for her than it did for my husband and me.
I struggle with initiating conversations even with my extended family and in-laws.  I have four siblings.  I grew up with my slightly younger sister and although we lived in the same house until she left home when I was about 18, I still have trouble initiating and maintaining a conversation with her!  At family gatherings on either side of the family, I usually just sit back and observe or attend to Micah if needed.  I can answer a question but I don’t go into detail unless it is something I know a lot about and the words don’t get stuck.  My side of the family, when all the aunts, uncles, and cousins are together, likes to loudly ‘debate’, especially at the dinner table.  I just sit even, if I have an opinion because if I put my opinion out there, I won’t be able to defend it.
My communication difficulties are made worse by the sensory overload from the loud noises, smells, and being in new situations.
If people take the time to really get to know me and they understand autism, they may be able to get a sense of how I would like to respond.  When I am comfortable with someone, I am able to tell them if what they think I want to say is right or wrong.  I can’t always just tell them what I want though.
I had an autism consultant who helped me for several years.  She was not on the autism spectrum and did not have a child on the spectrum but she was good at knowing what was going through my mind and she was able to put it into words for me.  My current autism consultant can do that too.  They always consulted me and ensured it was correct
I don’t know if I will ever be able to communicate any better than I do now.  It can be very frustrating but that is the way I am.  Since all behaviour is communication, I need a translator!  The only problem with that is I hide many of my stims and SIBS.  I also can’t always get what is in my mind.  out in any form.  If I can't get it out right away, there is a chance it will come out another time.

Just because we don't communicate in typical ways, does not mean we don't communicate.  Don't take our ways of communicating away from us.