Saturday, 21 July 2012

Decision Time

We weren’t going to get a doctor’s note for home instruction from our family doctor and it was going to be several weeks before we could see the pediatrician. We had to make a decision on what to do about school. 
Micah was still not able to attend school, although they were working on things to help her.  They finally made her a schedule that should have been done in September not February.

We continued to ask for her homework to be sent home.  Still, the school wasn’t providing much work for her other than having her write a book report.  This was a bad idea, because the book frightened her! I bought some Grade 6 curriculum materials and our autism consultant recommended writing down what we did each day, including library visits and any instances of Micah’s refusal to do school work.  She also recommended breaking up her work, especially projects and lessons she did not understand, into small, manageable chunks, and making sure she understood each part before moving onto the next. 
I had her do a project on horses (her favourite topic!), and Micah decided to write about mustangs.  Each day, I gave her a different part to write such as what they look like, or where mustangs live.  It worked well.

Meanwhile, our makeshift ‘home schooling’ was moving along, it was not ideal: Micah needed to be around other children, and I did not want to be her teacher for a great length of time.  There is the daily potential for parent/child conflict over the lessons and assignments, and too many tears.  We needed to find a more permanent solution.
We did not want Micah to go to her home public school because the kids on our street who bully her attended that school.  She didn’t need more problems to add to her anxiety.  
Meanwhile, our autism consultant tried to contact the Special Education Consultant for the public board in our area to find out about ASD classes.  She also talked to the Special Education Secretary, who said Micah must first enroll in her home school, and warned that she was unlikely to get a special placement right away.  She assured us that Micah did not actually have to attend the school-just sign up-and that would effectively register her in the public board. 

We decided to do it.
February 6 was the day that we officially withdrew Micah from the Catholic board to homeschool her as we waited for an appropriate placement in the public board. 

Our autism consultant contacted the Special Education Consultant to share our predicament and also told her, at our request, that Micah had friends in a school across town.  This school has a good reputation for its ASD classes.  The whole school has a reputation for being ‘Autism Aware’, so we really wanted Micah in that school.  To my husband and me, it seemed perfect: an autism-friendly environment and she had a couple of friends. People with Autism struggle socially and having friends was a big thing.  It would help her want to go back to school.

The Special Education Consultant was looking into our situation and what was available.  In the interim, she said we could put in for a transfer from the home school to the school across town and see if they had room.

We got into a routine of school work and that went smoothly for the most part but it was hard having Micah home all day every day.   It threw off my usual routine and I didn’t get much done.  I also couldn’t go to workshops that I signed up for.  On the bright side, I had someone to do errands and grocery shopping with!

Micah was still very anxious and her phobias were still bad.  I would have thought that with her being out of school things would be getting better.  She was still afraid that we would make her go back. 

Our autism consultant maintained contact with the Special Education Consultant regularly so they knew we really wanted the class.  Micah was sure that she would not go to school unless she could be in an autism class at the school her friends attended.

The reason our autism consultant was doing much of the contact with the Special Education Consultant, is my anxiety.  One component of Asperger’s is the communication piece.   I struggle to communicate, especially face-to-face and on the phone.  I also have trouble with email and knowing what to say.  If I have to talk I can’t get the words out properly even if I have practiced and have a script written.  I regularly give her permission to speak on my behalf, but we spent lots of time in consultation so she would understand what our family wanted.

At the end of February, our home school prepared the transfer request for us and told us we would hear in the next few days.

At this time, Micah had her appointment to undergo a psycho-educational assessment at The Redpath Centre in Toronto.  We wanted to know if she had learning disabilities which could be causing the problems with her school work.   She did well with her assessment but she refused to talk to the psychologist about school.  Our consultant also spoke over the phone with the psychologist about the school issues.  The psychologist said she would write a letter for Micah to get home instruction from the school board and include it when we received her completed report.

Micah was still very anxious about school even though she had officially been out since the beginning of February.  It was now March.  On another front, we were waiting for an appointment with the local clinical psychologist for help with the school anxiety.

The longer Micah was out of school, though, the less anxiety we saw. Oh, it was still there, but she was gradually settling back into being just Micah.  I had thought the school anxiety would be all gone by the spring, but no.  It was a very slow process.

…..and administratively, things were moving very sluggishly.  We had to wait for schools, psychologists, and reports.

In the middle of March, our whole family and our autism consultant met with the psychologist from The Redpath Centre to get Micah’s results.  There were no learning disabilities.  School work needs to be broken down so she can understand it.  Micah was happy to learn that she has a high average IQ and decided she wants to be a horse vet.  The psychologist provided the letter to give to the school to start home instruction.  It was a good idea to get that private assessment done, even at a cost of $2500.

It was now after March break and our autism consultant was again contacting the Special Education Consultant and the home school principal because we still had not heard about the transfer request.  They had assured us we would hear before the break. 

We were declined the transfer but told we would be put on the waitlist. Very disappointing.

We took Micah’s assessment to the home school along with the professional request for home instruction.  Yet again we were stalled!  We had to get a doctor’s signature on the paperwork!   We were still waiting to see the pediatrician.  Meanwhile….

Micah started seeing the local psychologist about the school anxiety.  It seemed that it could help.

We were still going to the library and homeschooling with a Grade 6 curriculum I pulled together from different resources.  We did some fun science experiments too!

At last our pediatrician appointment date arrived.

I explained all that had happened since we saw him last in the fall.  He gladly signed the forms for home instruction.  For the end date, he wrote that the home instruction was to continue until she received a placement in the school across town.  It was perfect!  We hadn’t asked him to write that so we were very pleased.  I guess everyone knows that this school has an excellent reputation.

I was sure that Micah would now have a spot in the ASD class across town for the fall! 
Or would she?

Saturday, 7 July 2012

The School Year Disaster!

For a lot of kids with Autism, school can be a challenge.  With all the chaos, social expectations, and academic demands, it shouldn't be surprising that many of them just cannot tolerate it at some point.  It happened to our daughter this past school year.
It started near the beginning of the school year.  We went to see the new class and teacher the week before school started.  I gave him Micah’s All About Me document that I had created.  It was designed to let her teachers know her likes, strengths, triggers, and challenges.  The Core Resource Teacher was there also-a fancy name for a special education teacher in the Catholic board.  Our first clue that this may not be the best teacher for Micah came early in the visit.  He told her that he didn’t usually have a daily schedule up and it would make more work for him to put one up for her. 

The Core Teacher told him she would make it for him.

The teacher also decided to test Micah’s literal mindedness- I had just mentioned to the Core Teacher that Micah had fallen off for the first time when she was riding that summer.  The teacher asked her if she fell while horsing around!  He meant did she fall off a horse?  Micah thought he was asking if she was rough housing and then fell because of it.  These things had me worried about the school year that would start the next week.

Math class was a disaster.  Micah did not understand Grade 6 math; that is, she didn't understand it the way it was being taught.  She needs direct one-on-one teaching, as do many kids with Autism, and she wasn't getting it. As Autism expert Hans Asperger stated, "If they can't learn the way we teach, we teach the way they learn”.   As a result, she was failing most of the assignments.  The teacher wasn’t too concerned and said she was “progressing well," although, we saw no progression at all.  I wrote notes expressing our concerns and we talked to the teacher at our parent-teacher interview. Nothing changed in his teaching practices.

Micah was tearful and very anxious while trying to do assignments.  We told her it was not her fault and that we would get help.  She was also spending hours each night on homework because she didn’t understand what she was doing.  I booked a psychological assessment to determine if she had a learning disability (though it would be a few months before it could be done).  She was supposed to be getting support in the classroom with an Educational Assistant as well as social skills instruction but she got neither except for a couple of sessions of math help before a test which she failed anyway.  The school did not give her accommodations that they agreed to provide in her Individual Education Plan.  She was also to have no more than one test in a day, yet one day she had four!  I had even written a note reminding the teacher that she was not to have all of the tests in one day- I got no response and Micah had to do all of the tests.

This went on through September to December and that's when things really unraveled.

By early December, she didn't want to go to school.  While Math was continuing to cause terrible anxiety, she also complained about art and gym classes. The teacher expected perfection with Micah, but because of her fine and gross motor skills and coordination problems, it wasn't happening.

One day Micah had a supply teacher and her anxiety got really bad so she came home before lunch.  From then until Christmas, she started refusing to go to school-first for a day or two then progressing to many days in a row. 

We didn’t know what to do.  We sent many emails back and forth to our autism consultant at the time.  I got nervous having to regularly call the school to tell them I couldn’t get her to come.  Would they blame us?  My anxiety was also getting worse with having to deal with this and figure out what the problem was.

We asked her whether she was getting bullied and all the usual things but she wasn't able to tell us what was causing her such distress.  Although Micah is verbal and can function well, she has a lot of problems communicating especially when she is anxious and upset.  This isn’t surprising in a child with Autism, because it is, after all, a communication disorder.

I figured two weeks off at Christmas and she would be back to normal and able to return to school.  Before Christmas break, our autism consultant had a meeting by phone with the Core Teacher and we knew there were a few valuable supports that would be in place when Micah came back in January.  They would also bring in the Attendance Counselor.  I didn’t know exactly what an Attendance Counselor did (and still don’t!) but it sounded scary and it sounded like one of those people who would say “get your kid to school or she will be taken away from you”.  I was assured this was not the case but I still worried.

The night before school resumed after the break was awful.  Micah had severe anxiety.  I asked Micah if having some fun time on the computer at school might help--she said it might, so we were finally able to start a list of things that might help make school more comfortable.  She also wanted to do all of her work, including math, on the computer.  She was able to come up with suggestions such as fun art time (she can’t colour in the lines properly so she had been anxious about having to do her art work over in art class), more reading time, and completing school work related to her special interests like Autism educator and advocate Temple Grandin suggests.  We also included in this list, no more than one test in a day- something they were already supposed to be following but weren't. She also wanted 'school is boring" included on the list.  This is something many kids say!  We then emailed the list to our autism consultant who was helping us with all that was going on.  She passed it on to the Core Resource Teacher.  Everyone wanted to follow these clues to try and make school a place that Micah wanted to be.

She would not go to school on the first day after Christmas Break.

We had a team meeting two days later with the Core Teacher, our family, our two autism consultants (we were transitioning to a new one), and the teacher. When the teacher came in, he immediately commanded attention by complaining about Micah's list, as the email had been forwarded to him.  ‘This was like a slap in the face,’ he said, with Micah sitting just two seats down.  His face was stern and serious--others pointed this out to me later, as this is something I can't discern.  Micah had been brave enough to come to the meeting, and right away, it turned out to be a bad idea.  Although the items on her wish list and her complaint of school being boring were reasonable and age-appropriate, he personalized it and let everyone around the table know how offended he was. 

Micah drooped and she made no eye contact at all. 

All the adults around the table seemed very uncomfortable.  One of our consultants  spoke up and said that she was proud of Micah for having the courage to share the things that concerned her and what things might make her feel better.

The Core Teacher had some good ideas and Micah perked up a bit.  We found out the school Spelling Bee was the next day and Micah wanted to participate.  She had won her class Spelling Bee earlier in the year.  She stayed at school for a bit that day to practice and did the Spelling Bee the next-a total of three hours over two days and didn’t go for the last day of the week.

Still the impact of the teacher's words was pretty strong.  After the meeting, Micah’s fears were mounting.  She was upset about the teacher’s comments.  She couldn’t get ready for bed at night and had trouble going to bed because she was scared the next day would come faster and she would have to go to school.  Her other phobias got worse.  She is afraid of spiders and saw one in her room so she was afraid to go in it even though I had taken care of the spider.  She was back to being afraid of sharks in the bathtub and wouldn’t take a shower anymore.

We made plans for Micah to see a psychologist about the school anxiety.
Since before Christmas, I had been taking Micah to the school office to pick up her school work on the days that she didn’t go.  Half the time, the teacher didn’t leave any for her.

I had an idea since Micah was comfortable going to the office.  I asked her and she agreed that she was willing to sit in the office and do her work and crafts to help her adjust to going to school again.  The principal agreed to the plan and she started going in until recess in the mornings and then progressed to staying until lunchtime. 

One day, the teacher came into the office to bring Micah her work and wanted to know when she would come to class.

We had another meeting with the teacher, Core Teacher, principal, board psychologist, and our autism consultant.  I made sure Micah stayed in the office this time!  Before the teacher came in, our consultant (I had told her we could tell the principal and psychologist what had happened with the teacher at the last meeting) brought up the teacher’s inappropriate comments from the last meeting.  We thought it would be very important for the board psychologist to understand that we could pinpoint this event to her escalating anxiety.  As soon as our consultant mentioned the teacher’s name, the principal asked the Core Teacher and the psychologist to leave the room.  Although the consultant said it was important for the psychologist to hear what she had to share, he wouldn’t allow it.  And why the CORE had to leave, we just don’t know.  After all, she was there when the incident happened.   After hearing the story, the principal did nothing about it.  He also would not require the teacher to apologize to Micah.

When the others were allowed back in to our meeting and the teacher arrived, we came up with ideas on how to slowly transition Micah back to the classroom.  The teacher kept pushing for things to move quickly but everybody else knew it had to be slow.  The only problem I had with it when I got home was that there was only one Grade 6 teacher in the school and Micah couldn’t be in a classroom with him!  And although the principal said we would transition slowly out of the office, his version of slow and what Micah could handle are two different things.

He said her doing her work in the office was not school at all-which I disagree with.  To me, it was success that she was crossing the threshold of the school.  It was a start.  In her previous school, the curriculum was different and was mainly self-taught.  There were a teacher and monitor who helped the kids when needed.  Micah did well with this method.   I see most schools as buildings where teachers usually talk at the kids.  Micah needed someone to help her learn, and it didn’t matter what room it was in as long as it worked for her.
Our autism consultant recommended Micah see our doctor so that the anxiety could be documented and if needed, eventually she could get home instruction.  I didn’t know the school board would provide such a thing but they will if medically necessary.  I knew we could homeschool if we had to though.  It wasn’t my first choice, but it was good to know it was an option.

The following Monday, Micah would still not go to school.  At this point, she wasn’t even getting ready in the morning because she was afraid that if she got out of bed and got ready, it meant she would be going to school.  She was complaining about being stressed and scared.  I was very anxious and scared also but didn’t tell her.  I was the one who had to call the school every day and let them know she wouldn’t be there.  The phone calls were very difficult for me to make.

Now it was the January 30 and school had been back for a few weeks.  Micah had attended about a week-and-a-half in the mornings.

We got into the family doctor that afternoon and our autism consultant came as well.  We explained about Micah’s anxiety and all that was going on with school.  We asked him for a letter to get home instruction.  He refused, saying it should be the pediatrician that sees Micah regularly and prescribes her medications who should make this decision. Micah’s pediatrician works only one half-day per month, and our regular appointment was still two months away.   We left disappointed.

We now had a decision to make.  Did we keep trying to get her to go to the school with the mean teacher who had no clue about Autism, or did we switch to the public board and hopefully get her in an autism class?  In the meantime, our autism consultant was inquiring about options in the public board for Micah.
Micah's Lego pegasus!