Friday, 31 August 2012

Communication and Me!

I have a significant amount of trouble with communication.  It is an area that is very hard for me.  It’s not that I don’t want to communicate:  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!
People with Asperger’s have a triad of social impairments: social communication, social interaction, and social imagination. Some people with Asperger’s compare trying to understand a conversation to trying to understand a different language. Many of us have trouble understanding gestures, facial expressions, and tone of voice.  Some 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.  Nobody only wants to hear about your special interest time after time!

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.
People with Asperger’s can be highly verbal, intelligent, and capable, but our words 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!
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.  I have many things to talk to him about but I just can’t seem put it into words. 

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. 
I have the same issue with the dental hygienist.  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 they 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 Asperger’s, they should 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. 
In the winter, her job changed and I was given a new consultant.  I was scared because there was no transition time so the new consultant and I could get to know each other with my old consultant present.  I was hopeful though because the new person has a child on the spectrum so she might be able to ‘get’ me.

It turns out she does get me and is starting to really know the way I think.
I don’t know if I will ever be able to communicate any better than I do now.  It can be very frustrating but I still wouldn’t take a cure for autism if there ever is one!

Friday, 10 August 2012

The School Story Continues! Part 3

The school story continues…..

Since we were not getting anywhere with the Special Education Consultant (SEC), I contacted the Ministry of Education.  Before I called, I was very anxious.  My autism consultant recommended that I create a prepared script to use, and that I explain that I have Asperger’s Syndrome to the person who would take my call. The man I spoke to was very nice and gave me the name of the Principal of Student Services at the school board who is above the SEC.
I emailed the Principal of Student Services and explained our situation about Micah being out of school, me homeschooling her, and needing a class in the school across town.  She in turn contacted the same SEC who I had been emailing. 

I seemed to be getting nowhere.  It was frustrating.
We got a call from the SEC about a school down the road that had space and could support Micah in their Student Support Centre (SSC).  It didn’t really sound like the right fit, but I wasn’t able to assert myself.  When I talk to someone I don’t know, and that person has a position of authority, I tend to agree with whatever they say.   It is something I can’t help.  I automatically say yes when I don’t have time to think carefully and I can’t ask for that time.  I also don’t like conflict probably because of my communication issues.

Anyway, we were emailed a date to go and tour the school. 
I was worried because I had asked the SEC if Micah would have any educational assistant support outside of the SSC and she said no.

Around this time, we also got the call about Micah’s home instruction.  It would finally be starting soon.

It was now Easter weekend.  Four days of worrying about what to do.  Micah was still very anxious- hiding in her room all morning some days.

I sent an email to my autism consultant about my Asperger’s and asked her to share it with the SEC.  It explained my Asperger’s, my anxiety, and the trouble I have communicating to others what I want or need.  I also talked about Micah. We wanted her in a place that would most suit her needs and where she would be supported and have friends.

I received a reply from the SEC expressing understanding about my Asperger’s.  She further explained why she was suggesting the school down the road:  It is in the catchment area for the local high school; it was a viable transition into the public system; and finally, it would let them become familiar with her strengths and needs helping them in making placement decisions.  

It seemed to make sense.  I had to talk it over with my husband.  We had to think about what was best for Micah and we didn’t want to be seen as difficult parents and then be ignored.

We weren’t really sure still what was available in the public board but we did know what we wanted for Micah.  We wanted a small class with lots of individual help mainly in language, math, and gym; a teacher who truly understands autism and the way autistics think, and who has knowledge of the anxiety that goes along with autism and how to deal with it.  Micah needs help breaking things down so she doesn’t get overwhelmed, a French exemption so she can concentrate on her other subjects, enforced breaks, encouragement to use her laptop, social skills and emotional assistance.  Small amounts of homework that is clearly taught before it comes home along with all instructions on how to do it so we can help. 
This might seem like a long list, but these are all pretty common best practices for supporting kids with autism.

We decided it had to be the school across town as that was what Micah needed and what the doctors recommended.  If she were to go to the school down the road while waiting for the across town placement, things could backfire.  She already had severe school anxiety and if there were problems at the temporary school, we might never get her back into school.
It seemed the like school board just wanted her in any available school.

We wrote an email to the SEC explaining our Asperger’s diagnoses and how my husband and I were affected by bullying and academic and social struggles in school.  We told her we did not want our daughter to go through the same things.  We thanked her for offering the school placement down the road but declined, stating that we would continue working toward getting her into the school across town with all the avenues available to us.  We wanted what was in Micah’s best interest and we were willing to wait.

We continued to be polite and persistent in our communication with the school board staff.

Another email was written to the SEC by our autism consultant asking if Micah would get into the ASD class for September.  An email was sent back stating that Micah was on two waitlists for the school across town-regular transfer and ASD class, but she stated that there is no room in either and to consider again the school down the road.  She also mentioned that she was retiring.
I wrote back to the SEC offering best wishes for her retirement and asked for the name of her replacement.

Micah finally started her home instruction toward the end of April.  The teacher was great and Micah didn’t complain about it once!
She was also getting less anxious.

I met with my autism consultant and wanted to know what other options I had for getting the school placement I was after.  She said we could try contacting our school trustee and Special Education Advisory Committee (SEAC) rep. 
I wrote a short note to our SEAC rep through our Autism Ontario chapter but never heard back.

I wrote a concise note to our trustee explaining everything that had happened with Micah and school.

He got back to me quickly and told me that he would see what he could do and he also forwarded the email to the superintendents.   They would look into our situation.

I received a phone call soon after.  It was the new SEC and she was telling me about the waitlists and limited space in the schools, especially the school we wanted.  She mentioned that in the meantime there was room in the student support centre.  She told me that they would be starting a new autism class in the north end of the region and Micah could have a spot in it, if we were interested.  I told her we would think about it when she had more information on the location, teacher, etc.  I also said that the SSC would be good while we were waiting.  I was excited that we were finally getting somewhere. 
I explained to the SEC that communicating with me on the phone was not the best method and that email was better due to my communication difficulties.  There was less chance of a misunderstanding.

The next thing I knew, the principal from the home school emailed me to say she had met with the SEC and was happy to hear that Micah would be going into the Grade 6 class with SSC.  I panicked and sent an email to my autism consultant.  We did not want Micah in that school.  There had been a big misunderstanding!

I had to write to the principal and the other officials to let them know it was a big misunderstanding.  Micah could not attend that school due to bullying issues.  I had thought it was a placement in the SSC at the school across town.
We sent another email to the trustee thanking him for getting the new SEC involved so quickly and reiterating the school bullying issues at the home school, that there were friends at the school across town and our willingness for Micah to be placed in an SSC at that school while waiting for a spot in the autism class. 

The trustee said he would look into what happened. 
On June 5, we received an offer of a placement in a new autism class opening in the school down the road (the school they had wanted us to try before)!

It was a brand new class so there was no opportunity to visit. 

We needed to seriously consider our options.
The school across town has a good reputation for autism understanding, Micah has friends there, and a years’ long wait list.

The school down the road is small, closer, will have a brand new class, an experienced teacher, is beside a horse farm, has no waitlist- but Micah knows none of the students.

The school down the road and SEC were very willing to do what it takes to make Micah comfortable with the transition.  They were willing to work with us.  They seemed to really want to help.

                                     We accepted!

Micah said she trusted us with the decision so things were okay there even though she was very anxious about it.

We went to a meeting and tour at the new school.  The principal, vice principal, and teacher were great.  Things were very relaxed.  I even felt comfortable enough to talk at the meeting (my autism consultant usually helps me in that area after a pre-meeting).   
They already had a binder ready for Micah with pictures of the principal, vice principal, secretary, teacher, and rooms-even the bathroom!  I usually have to do a little booklet for Micah myself but they had already thought of it.   It was better than any I had made in the past for her.

Micah’s favourite part of the tour was going into the school yard and meeting the horses next door.  The principal is looking into whether Micah can go over to the farm during the school year to help out.  They are trying to do all that they can for her to make her feel good about going back to school.

We are anxious but looking forward to the new school year.   I think in the end we got the best placement possible for Micah.  She has never been to class in a public school yet but they gave her a spot in what looks like will be a great class.

Things are looking good for the fall!