Tuesday, 24 June 2014

Problems With Movement

So I finally decided to go and see an occupational therapist (O.T.) about my movement/coordination problems.  I know it is usually a physiotherapist who sees people for these problems but it is hard to find one who specializes in autism and harder still to find one who specializes in autistic adults and not just children.

I consulted in the past with a different O.T. for some of my other sensory problems and she came up with some strategies for me that were helpful.  At the time I saw her, she was still mainly seeing children but she  specializes in autism and I know she is good so I went to her for sensory help. She sees more adults now.  After all, we do grow up!

I have been to presentations by both O.T.'s and have the book that they collaborated on with another O.T.  If you ever get a chance to go to one of their presentations, it is worth going.  I have not been to one in a long time but you do learn lots of take away information.

The O.T. I am currently seeing was originally recommended to me by my social worker for certain sensory problems I was having.  She is associated with his practice.  I am tired of not being able to make my body do things that it should do easily and I am tired of falling and hurting myself.

The worst thing I have done to myself, by falling, is tearing my calf muscle.  I did that last summer.  All I did was trip and fall forward but that was enough.  I didn't need to see a doctor to know it was torn. It didn't bruise right away because it took a few days for the blood to come to the surface.  I ended up with the entire back of my calf bruised.  After a week of the bruising still coming up, I decided to see a walk-in clinic doctor.  The pain was abating but I was worried about the bruising.  It hurt mainly when you pushed on certain spots, which of course the doctor did.  She got worried because it hurt and because of the bruising.  I was told I needed to go for an ultrasound right away because there could be a blood clot and it could go to my lungs.  Nice (sarcasm).  I had thought a blood clot was very painful and my leg was getting less painful, but she scared me and I went.  It was not a pleasant experience, especially because they have to press hard and I have fibromyalgia and am sensitive to touch on top of that.  There was no blood clot, so I decided to see a physiotherapist for the first time.  I have torn parts in both knees an dI decided it was time.  The one knee doesn't hurt anymore and I can straighten it, but the other knee is still bad well after two years on and I can't straighten it.  My rheumatologist wants me to see the physiotherapist for that now, which I am doing.

Back to the reasons for seeing the O.T.!  I struggle to make my body do things.  When I go for walks I end up kind of leaning to the side and wandering off the sidewalk or I walk into whomever I am walking with.  I also trip and fall regularly and walk into things (seeing a developmental optometrist soon).  It is very embarrassing when I do it in front of people.  I have also found that when I do my exercise, I will try to follow the video but run into problems like: I do things backwards, I can't coordinate legs and arms etc, I either lean or completely fall, and some things I really can't figure out how to make my body do (motor planning).  I have to spend so much time thinking about how to do certain movements that I end up falling behind in whatever actions I am doing. I can only think about so many things at once!

Once I have learned a movement, then I can learn the next one that that follows it.  Most people have seen me after I have learned a whole sequence.  I still have to really concentrate though.

I have been riding for many years, and my instructor thinks I do just as well and have similar problems to many of the other people she teaches.  That may be the way it seems but I have to concentrate so much more on positions and movements that should be natural to me after all these years.  I can focus on some things at the same time but other things slip.  Some weeks I have better lessons than others.  Some weeks I get very frustrated and can only focus on what is going wrong and then my anxiety gets worse and I end up in tears on my way home.

The way a horse moves at a walk is similar to the way a person moves so that probably helps me.  I have never tried hippotherapy, but I do find riding therapeutic with the movement and sensory input.  I love sitting trot as opposed to rising trot because I find the deep pressure relaxing.  This video has a rider doing both sitting and rising trot for those who don't know what the difference is.

My first appointment with the O.T. was entertaining.  Sometimes I can't help but laugh at the things I can and can't do.  The was lots of leaning (like the Tower of Pisa), some falling, and definitely lots of uncoordinated movements.  As I have mentioned in previous posts, I am a para-equestrian.  They don't have an autism classification yet but because many of us have balance and coordination disorders that go along with the autism, we can be classified.  To be classified, you have to have a diagnosis of some sort and then a doctor and physiotherapist do testing to see whether you are impaired enough to be classified.  Let's just say that even though Micah is much better off than me physically, we are both classified as grade IV para-equestrians. They test you off the horse because people can compensate on the horse and for some people it could be really dangerous.  Different para sports have different classification rules.

The O.T. gave me various exercises to try and also had me try on a weighted belt.  I didn't notice much of a difference at first but it felt relaxing.  I had to walk figure 8's while looking at a spot on a wall.  I did that exercise much better with the belt on!  Another thing I had to try was rapid alternating forearm rotations on my lap.  I had my daughter take this video of me doing it.  I can do it slowly, but as I speed up my hands become uncoordinated.

I went back for a second session to try a weighted vest before I bought my belt and get some additional exercises.  I hated the vest!

I received my belt in the mail last week and have started using it.  I can walk straight when I am walking the dog.  I am not falling over when I do my exercises but leaning once or twice which is much less than before.  I was having trouble adjusting to the exercise with the belt on because my body is in a different more upright position.  I was messing up and losing my concentration because things were different.  I am already getting used to it though.  My O.T. thinks the belt is helping with my body awareness and helping me adjust to midline--basically, it's helping me be more coordinated!  I am very stiff and don't turn my trunk much so some of the exercises she gave me will help with this also.

I used the belt for roller skating on Saturday.  Usually I wobble a lot but this weekend was a big improvement.  I had my daughter take a before belt video a few weeks ago and then an after belt video this weekend.

Overall, it has definitely been worth it for me to see an O.T. for my movement problem and the equipment and exercises are helping me to be more stable and coordinated.  The only bad thing is that my family teases me about my belt and calls it a utility belt like Batman has.

For those who live around the GTA, here are links to the O.T.'s I have seen:
http://www.ellenyack.com/  who I am seeing currently.
https://www.facebook.com/pages/Shirley-Sutton-Occupational-Therapist/252588664797314  her website doesn't seem to be working right now so here is her Facebook page.

Photo shows my weighted belt and Bosu ball.

Tuesday, 3 June 2014

Meet and Greet at The New School

I already had another post started but this, amongst other things, has me upset tonight.

As you know, Micah is currently on home instruction due to her PTSD.  She is supposed to start grade 9 in the fall in a school not of our choosing, but it has an ASD class.  Last month, we went on a tour with our Autism Consultant and the vice principal, who seemed nice and wanted to understand Micah.

Today, we went to a meet and greet with the families in the new grade 9 ASD class which Micah will be attending in the fall

This time we had two other staff who didn't give us (me and Micah anyway) their names and jobs. We got the names when they were talking and I think one is the principal and no clue what the other does and can't spell her name. Supposedly they have a teacher picked for the class now but she couldn't come.

Micah already dislikes the one lady (Principal?). She talked to her too much and pressured her to talk etc. This is how her bad grade 6 year started so things are not looking good. I tried to tell the lady that Micah isn't even in school right now and wasn't able to comment but she kept trying. She would put kids on the spot by going one by one and asking questions. Micah even said no comment a couple of times which is really good for her. In general, you can't just ask an autistic person a question that they aren't expecting and get an answer. It puts us on the spot and our minds can blank.

I did what I could, but the staff member just didn't seem to get it and she was very forceful about having to do as much as possible in mainstream classes which is not going to work for Micah. They said that there is a kitchen in the new class but if the kids want to microwave, they have to go down to the cafeteria and use that one and then bring their food back upstairs to the class (if they can't handle the cafeteria).  Carrying hot food around crowded hallways when you have motor problems sounds kind of dangerous to me.  She mentioned a student forgetting to add water to his macaroni and cheese and it cause a fire alarm etc.  She said not to do that or risk getting suspended.  Is it not the staff's job to help our kids?  If a neurotypical (or maybe he wasn't) kid can forget, what might happen with our kids who might be behind in some of these skills?

Micah and I can write our thoughts much better than trying to talk so we don't get listened to and people just do whatever they want with us. 

The problem is that this could have ruined high school for her. Hopefully it hasn't. She seems to be looking forward to going. Obviously they will need a lot more teaching before she starts. I do my best to advocate for her and go way beyond what I can really do which is part of the reason why my own anxiety gets so bad but it isn't enough. I'm autistic and struggle to communicate. It's too bad there isn't more support out there for us. If we were rich we could hire people to help us and teach us in so many areas. Most of us can't do that though!

I have a whole list of things that need to be talked about before school starts and there were other disappointments tonight but I will end here.  Too many upsetting things in such a short space of time and valium only helps so much!