Friday, 28 September 2012

Sensory Integration Dysfunction and Me

Most people with autism have sensory problems.

I have issues with all of my senses: sight, hearing, taste, touch and smell and two others that aren’t mentioned as much, vestibular (balance) and proprioceptive (body awareness).
My sensory issues--called Sensory Integration Dysfunction-- make me very anxious.  Let me explain:

Many autistics don't like bright or florescent light.  I like bright light!  It helps me see things more clearly.  I don't like it when florescent lights flicker though.  It makes it so that things aren’t clear anymore.  The only time I don't like bright light, other than when I'm trying to sleep, is when I'm driving at night.  The headlights from other cars blind me whether they are oncoming or behind me.

I don't like loud sounds for the most part. I can tolerate and even like them at times, if I'm in control them, such as the volume of music. 

Until I was close to 20, I was terrified of fireworks.  They were loud and I was afraid they would come down from the sky and set me on fire.  Unexpected noises often make me jump, especially if I’m off in my own world.
When there are many people in a room talking at once, it makes me zone out.  The sound makes me feel strange…I can't explain it. I also can’t tolerate sounds like tapping or squeaking---like the sound of a rocking chair.  I also cannot speak when I am around people other than my immediate family and it makes me feel like I will explode as the anxiety builds up in me.  It can be hard living with other people, in my case a husband who has to tap and rock in chairs because of his sensory needs.

I have trouble staying in the same room sometimes and I get very anxious and therefore very irritable.  I feel like I will explode.  I ask him to stop and he can't because it is something he needs to do.  We are supposed to spend time together when he is home, but there are times when I have to leave the room that he and my daughter are in and hide in a corner of the house.  I sometimes turn up the radio and cover my ears to drown out the unpleasant sounds.  
Both my husband and daughter talk very loudly at times, but it is more tolerable than tapping sounds.

I also hear many background noises that other people don’t, like clocks ticking and the fridge running.  It can be hard not to focus on them at times.

I am a picky eater, although I'm not so limited that I only eat one or two foods.  I can eat meat but won't touch steak; I find it hard to chew.  Fat on meat has to be ‘surgically removed’, as does the skin on chicken.  The fat makes me gag--even the smallest piece.  I have been cutting it off as long as I can remember.  When I was young and I did that, I was forced eat all the fat I cut off.  It was a struggle to get it down even with lots of water.  I think it is the texture that bothers me.  I can eat foods like apple sauce, pudding, or Jell-O, but fat is slightly firmer and slimier and I just can't tolerate it. 

Some things that I wouldn’t eat years ago, such as chili, I can now eat.  The texture of the kidney beans bothered me when I was younger.
I can eat bits from all of the food groups but not quite the variety that neurotypical people can eat.

Different foods cannot touch each other on my plate and I have to eat it in a certain order. 
I do like the feeling of crunchy food the best, I think.  I like mashed potatoes as long as there is gravy on them and no lumps!

I love the smell of skunk but not the smell of gasoline.  I can’t smell things most of the time unless they have a strong odour.  I think this is mainly because I have allergies but I also think I may have an under active sense of smell.  If there is a strong smell that I can expect like when I'm going near a garbage can, I am able to block the smell.  I usually breathe with my mouth and slightly through my nose at the same time.  I can’t breathe through just my nose because of the allergies.  To block a smell, I have to set my tongue so I that I only inhale through my mouth and no air gets in my nose.  It’s a strange skill but I have it and it works for me!

This is a huge problem area for me.  I mainly dislike light or unexpected touch.  I enjoy the deep pressure of friendly hugs as long as it is for not too long or too often. 

Aversion to touch can cause complications in a relationship, especially if one person enjoys a lot of touch and the other doesn't.  It is difficult for me not to scrub, scratch, or hit myself where I get touched.  I struggle to hold it in but it makes my anxiety worse and then I have a meltdown.
When I get kissed by someone, it is hard not to wipe it off.  I don't like the wet, tickly feeling.

I am picky about my clothing.  I wear the same type of clothing all the time.  I do not like tight fitting clothes. I don’t wear shorts and hate wearing a bathing suit.  It makes me feel naked!  I like to have the feeling of being covered.  I guess I don’t like the way the air feels on my skin.

I do not have good balance. I wobble a lot. I’m not as bad as some where I constantly fall but I’m definitely wobbly.  I can’t walk a straight line unless I really concentrate. I can also get car sick.  I have to be looking up when we are driving.

I walk into doors, walls--pretty much anything!  I hit my face on things regularly.  It’s a good thing I wear glasses as they protect my eyes!
Because of my vestibular and proprioceptive problems, I have a card that gives me accommodations for my horseback riding.  I had to have a thorough assessment by approved professionals who provide the service to Equine Canada.  There is no autism classification as of yet but may be one in the future.  I am classified at a level described as a Grade 4.  One has to have impairment in one or two limbs for this classification.  Balance and coordination are tested off the horse.  If I want to ride in a dressage show, Para-equestrian or normal, I am allowed the use of a hand hold, elastics to keep my feet in the stirrups, one or two whips, and I only have to salute with my head.

As you can see, sensory integration dysfunction and the anxiety it causes are a big part of how autism impacts my life. 

Thursday, 27 September 2012

The New School Year: A Great Start!

After several stress-filled months, the new school year has begun. 

There was some anxiety on Micah's part and a lot for me!  The week before school started we met the teacher and a few of the new classmates in the new classroom.  That made things a little easier on the first day of school.

This year Micah has started to take the school bus for the first time and she is back in class for the first time in almost a year.
Day one: we were out on time for the school bus to pick her up at the house.  Since she is on the small special needs bus, it will pick her up at our driveway.  We waited and waited and finally, when the bus was 15 minutes overdue and the school bell was to ring in five minutes, I got her in the car and drove her to school.  Stressed already….

Not a good start for a child who was nervous about taking the school bus in the first place.  We went into the office because she was late and they said there were many buses that hadn't shown up or were very late.  Her teacher came up to the office to get her.  I discussed the problem with the secretary and she said it would be figured out by the end of the day.  I told them I would pick Micah up that day just to be sure.
It would be Micah's first full day in school since last December and she hadn't eaten lunch at school for a couple of years, so the entire routine was brand new for her.

When I went to pick Micah up at the end of the day, I checked in at the office and they said the bus was straightened out for the next day.  It was suggested she might want to try taking the bus home that night since it was there and I could meet her at home.  She reluctantly agreed and had her first school bus ride.
Micah had a great first day at school and was very happy in her new class.  There are a total of five students and three staff.  Micah is the only girl (of course!) the other four students are boys.  She is also the oldest in the class.  The staff consists of a Special Education teacher, a Child Youth Worker (CYW), and an Assistant for the Developmentally Handicapped (ADH).

Although Micah had a great first day she was completely overwhelmed, and at bedtime, the anxiety started to get bad.  She started telling us she didn't want to go to school.  She then asked if she could only go for half a day.  I started to worry that we would be back where we started-dealing with a child crippled by school anxiety.  However, I understood the value of giving her a gradual re-entry into school. I told Micah I would drive her the next day so we didn't have to worry about the bus and that I would pick her up at lunch so she could gradually get back into full days.  That made her feel better.
I explained to the teacher and the principal what we would be doing and how we would gradually get her up to a full day again and hopefully travelling on the bus also.  Happily, she did have another great day on Day 2.

I talked to Micah that night and we came up with a reward system to work on bus and full day problem.  Although there are very few kids on the bus (only about four or five), she finds it very noisy because those few are loud. 
Micah was also finally able to tell me that she was worried she would never see me again if she took the bus to school.  I had always taken her to school either walking, because it was so close, or driving to her private school, so we have never had this problem.  I suggested to her that Daddy could get her on the bus and I could go ahead and meet her at the school.  That way she would see me before she went into class and she would know that I had not disappeared.  She would also receive a reward for taking the bus.  I do not have to worry about whether she made it to school or not because the staff meet the kids from her class as they got off the bus and take them straight to their room.

After a few days, Micah was able to take the bus to school on her own.  Her bus is even coming on time now.
Now that she was taking the bus every morning, we had to start working on staying longer during the school day.  The whole school team is very supportive of Micah and her needs so if she can only go half days at first, they're okay with that.  After a few half days, we managed to get her to stay until lunch time, which at their school is 12:50.  She and her favorite CYW discussed many things including when Micah would come for full days because they really like seeing her.  A week-and-a-half after school started, Micah was ready to start full days.  She gave it a try and was happy to have art class in the afternoon.   She loves art.  She really enjoys being the only one in the room and having the art teacher to herself when the boys go for their integration time into other classes.
Micah is starting to feel very comfortable in the class because she is supported so well.  She has been able to ask the teacher for things that she has never done in the past, such as asking to listen to music and going to a different room if a child is having a meltdown.   She even asked to use the study corral all on her own (after she had asked me the night before to talk the teacher).

I had told her that she was doing so well that she could probably do it herself and she did.
There have been no behavioral problems at home other the normal kid stuff.  In her riding lesson, she did something she hasn't done for probably over a year.  She jumped.  She has been very fearful to do that and I think the new school has something to do with improving the anxiety (along with encouraging riding partners and coach).

At the end of the second week of school the librarian told Micah that there was a girl in another class who has Asperger’s.  Her mother was considering getting her an iPad like Micah's, and she said she would introduce them to each other.  The other girl also likes the same book series as Micah:  The Warriors.
We have just started the third week of school.  Micah takes the bus to and from school and stays the whole day!  We now have to work on tapering the rewards but the main thing is that she is going and she is very happy.  Yesterday, Monday, Micah got to meet the other girl with Asperger's and they are going to be starting a Warriors book club with the help of the librarian.  She's very excited and will hopefully now have a friend.

Micah is still not comfortable to go outside at recess and lunch time because she has no friends.  The teachers are okay with her being in the class and one is very interested in her iPad and the things she can do with it.
Things are going great so far and I really hope this year stays this way. 

The IEP is the next thing to come.  We have already done the French exemption paperwork so we don't have to worry about that.  We do have to start thinking about which class to integrate her into first as right now she is not integrated at all.  She is not comfortable with that yet and the staff is accommodating her.
We're very happy that after all this time and work, we made the right decision on this new class and school.   The staff is really accommodating and relaxed and they really, really want to help her to succeed.

Micah is much happier than at either of her previous schools. 
It is now week three and a sixth and final student has been added to the class.  Micah received a birthday party invitation from him!  This hasn’t happened in years.  She does not usually get invited to parties.  She was at her last school for two years and no birthday invites.  She is very happy now.

The change from a Catholic system to a community classroom in the public system was scary and caused a lot of anxiety in our household.  However, we would not change our minds on this decision.  We need to do what is best for Micah and no one else.  Some people believe only in mainstreaming because that will prepare the child for the ‘real world’.  Not all children can handle mainstreaming and even as adults will need some accommodation in their jobs or activities.  There is nothing wrong with that.  Everyone, including neurotypical (non-autistic) people, has different needs.  

First day of school outfit!