6.30.2014

Duality

I am very open and forthcoming about Sophie being autistic. Autism is what most people see when they interact with her, she behaves in a typically autistic way. She's so totally autistic in fact that I often forget about the brain malformation, which incredeously is laying dormant for now. When I do remember however I feel the cold pangs of anxiety as to how and when (and if) the fact that her brain is made so differently will affect her. It feels impossible to hope that it won't, that she will live her life as if her brain was not malformed, how she is amazingly living now.

Sophie was born with a certain duality to her. First of all, she was born under the horoscopic sign of Gemini, or the twins. That sign is the classic symbol of a double nature in one person. Secondly, her hair was split evenly down the middle of her scalp into two colours- black and white (the black gradually faded to a dark brown). You don't have to be a new-age mystic to feel some goosebumps at that. My husband would often say that he wonders how her hair will affect her further personality. Everyone scoffed "it's just hair!" Well, then.

Moving along, her development was also of a dual nature. She started off advanced (very early speech, large vocabulary) and ended up severely delayed. And finally the diagnosis of autism followed by the discovery of Polymicrogyria, the aforementioned brain malformation. Further deepening the strange duality, in the autism world she is considered severe. In the PMG crowd her level of affliction is mild. It's like she is straddling these two worlds of two totally unrelated disabilities, fitting fully neither here or there.

I belong to several PMG groups online and I know she is incredibly lucky given which areas of her brain are affected and her seemingly small degree of physical disability. The fact that she doesn't suffer from seizures as of now is a small miracle in itself. She is even lucky in her ability to eat solid food without any problem. We don't take anything for granted. While her particular kind of PMG (bilateral perisylvian) is often blamed for robbing children of their speech, with Sophie again it's not so straightforward. Children who don't speak due to PMG never develop that ability. They don't learn to speak clearly and then suddenly lose it.

Autism is a neurological condition, as is PMG. They both affect the brain, one in an invisible way, one in a tangible, seen-on-an-MRI way. Both are mysterious and outcomes vary greatly. And by some luck of a cosmic draw, both converged upon my little girl and made her who she is. And as much as I love to know and understand everything, Sophie's condition(s) might remain mysteries unsolved for as long as I live. And aside from occasional panic attacks in the face of the unknown, I think I am ok with that.

Understanding everything is overrated anyway

 

 

6.05.2014

starting school, autism style

The past few months have been dominated by the decision regarding Sophie's September school placement (in Sophie's life. Other family members had their own events, but this is Sophie's story). I held off writing anything here, as there was a lot of going back and forth, up in the air stuff and I wanted things to settle before reporting on them. I didn't want to confuse anybody (or myself, ha).

In Toronto, the process of special need kindergarten entry is such- at first we had to go to our "home" school (the one my older kids attended/attend) and register her there, with the disclosure of her special needs. That sets the wheels in motion. Then a special education committee reviews her file and sets up an interview, which we attended in April. They listened patiently to our grand vision of Sophie perhaps attending the local school part-time, and then informed us that we are asking for the impossible and proceeded to tell us what will be "best for Sophie". What is best for Sophie (and all other special needs' students in the board I suspect) is what is called a "diagnostic kindergarten", a small class of special needs' kids, scattered in schools around the city. We agreed since obviously the only way Sophie could thrive in a general education classroom would be with an aide and that possibility was basically laughed at (not laughed per se- more like regretfully dismissed as unlikely to ever happen).

Then we anxiously waited for her placement for almost 2 months, dangerously approaching the end of the school year with no final decisions made. We were relieved that we have already decided that no matter what happens with the public school placement she will continue to attend the special needs' preschool she is currently attending. It is a wonderful program that she adores (love is not a strong enough word) and all her therapies are integrated into the daily program. However it is only in the mornings, 4 days a week. Even this year Sophie showed that she was bored the remainder of the day and especially irritated on Fridays when she didn't have school at all. The lack of structure was especially apparent throughout the ridiculously long winter when we were pretty much cooped up inside every afternoon as her brother napped.

Finally, last week we got word that a placement has been found and I was to go and see it on Monday, with Sophie. I decided to let her attend her school in the morning, pick her up (along with Felix and my mom who came to help with him during the meeting) and go. I was pleasantly surprised that the school was only about 10 minutes away from Sophie's preschool. We left Felix and grandma at a lovely playground close by and went in. My first impression of the school was that it was old (84 years old in fact) but it felt well loved and cared for. The kindergarten teacher came out, joined by the principal and our local school's principal. I felt comfortable with them instantly. They led me to the kindergarten classroom and it was small, but since it is only for a maximum of eight kids, I'm sure will be sufficient. Sophie seemed comfortable and set about exploring. I talked to her teacher about Sophie and asked her questions, mainly to gauge her attitudes about autism, discipline, "behaviours" and the like. She was very reasonable and described a gentle program, which attempts to follow the general kindergarten curriculum but that goes at the speed of the students. Her discipline methods seem to hinge on redirection and sensory breaks rather than coercion or punishment. Basically, she passed the test :)

Since I bring the ipad everywhere with Sophie's communication app, I had it out on the table. At one point Sophie (whose day and routine was thrown upside down and she was kind of done with that) came up and pressed "no no no no, bye bye bye bye". Then she TURNED IT AROUND so the teacher who was sitting across the table could see it- that kind of blew my mind. I explained to her that we will leave soon but she's had it by then. And when Sophie has had it... well, she sat on my lap and fell asleep. We continued with the meeting. The teacher told me that she will incorporate Sophie's app usage in the IEP. And they assured me that she will be able to get a bus from her preschool to the school and that she can attend on Fridays for the entire day. It almost felt too good to be true.

Then I was taken on a tour of the school. My favourite part was going outside to see the diagnostic kindergarten class playing there. Seeing them put my mind at ease. I saw a small group of happy, well-supervised children, playing in a lovely, shady, fenced yard. When we came out, a lady ran up excitedly to tell us that an older grade was planting in the garden and got the kids to help out. A couple kids were playing on the playground, one was riding a trike and 2 were being pulled around on wagons by some ladies like playground royalty. I could totally imagine Soaps frolicking with them, and I'm sure she would then if she wasn't asleep on my shoulder. After we finished the tour and were walking to meet Felix and my mom, we passed a waiting school bus. Sophie immediately began to try to get on and was not pleased with me when I stopped her (she woke up right as the tour was done- good timing).

So now I am calmer knowing she will have 2 lovely programs to attend, which will keep her busy and happy (I hope). I know she is ready and once she understands the routine, it will be a smooth transition (she is very adaptable really). The only sore point in the whole plan, which otherwise is quite great, is that Sophie will be bussed quite far out of her neighbourhood. I would have loved the small class to be available in every school in our board, or at least a solid 50 percent (obviously there is a demand as the few that are close to us didn't have a space for Sophie). I am sure that the programs, the people that run them, heck even the special education committee all mean well. I have a feeling that the long wait and the placing of children all around the town is due to lack of sufficient funding and space. Which isn't surprising as the toronto school board is chronically underfunded, as are the special needs' autism services in the province. Something that is quite sad, but not much that can be done about. Nevertheless, the overwhelming feeling right now is peace and a cautious optimism about the upcoming year.

Always ready for a challenge

 

 

Related Posts Plugin for WordPress, Blogger...