Malia was born with a porencephalic cyst whereby she was missing more than half of the right side of her brain with damage scattering the left. She has hydrocephaly which damaged her optic nerves. She is considered legally blind with cortical vision impairment, optic nerve atrophy, nystagmus and severe myopia. She has left sided hemiplegia. Though she is how I say it "quirky" and if you ask me close to being on the autistic spectrum quirky she really is bright. She has recognized letters and numbers since she was two. She know has some sight words. She verbally spells many words. On a good day she can do very basic computation. She is a virtual phone book able to recognize, recite and dial any number of phone numbers. I could go on and on. There are definitely delays in fine and gross motor skills and a whole host of interesting behaviours with the biggest problem being explosive tantrums especially when overstimulated.
All that being said I reiterate when I say the kid is brilliant! With the way her birthday falls she has the option of going to grade one or remaining in Kindergarten. I think leaving her in kindergarten would not serve her academically when she is showing herself to be ready in so many ways but maybe another year might help her social and emotional growth. Quite the quandry. Realistically though in making the decision to stay or go either way she will have support in the classroom due to her special needs. Herein however lies more decision making.
Should I decide to send the child to grade one do I a) send the child what is considered to be out neighbourhood school where she would be placed in a typical grade one class but offered a vision aid (who knows how many hours a day that would include etc) or b) do I send her to the school where the majority of kids with vision impairments go where there is a vision teacher on site, mobility specialist, typical kids and a school environment that welcomes and is inclusive to the special needs of kids like mine? The answer might seem to be a slam dunker. Right away I think Malia should go to where the best resources are. Doesn't take a brain surgeon to figure out the best opportunities would be there. The conundrum comes when the school is across the city. She would leave the house about 7:30 and not return until 4:30 all depending on traffic. She still rides in a carseat for petessake! This is my baby!
With this not being my first rodeo you would think that I would be an old pro at picking educational and vocational programs for my kids. Ya, you would think. It is just as hard now as it was years ago and one of the biggest stress factors in picking programs outside of curriculum is the transportation. In Malia's case she would travel by taxi. Luckily enough there are kids in a close enough vicinity that she would fit into an all ready existent route where they have a consistent driver morning and afternoon. It is just hard to entrust your kids special or otherwise to strangers.
I should add that if I go with the school that has a vision program in it there is MORE decision making. They have incorporated a charter Montessori program in the school from grades one to six. Can I have more pressure put on my poor taxed brain?! I don't know much really about the Montessori approach so it will require some research.
As I lay it all out I can see that there is only one good decision here. I think it is time for Malia to leave kindergarten and make her way out into the world of big kid education and one that will focus on her vision deficits and how to best maximize her potential as a learner. I was shocked when they had said they wanted to teach Malia braille as she can see surprisingly well for someone as well diagnosed as she is. The idea is that it is better to start young if it is a tool that will be useful for her and that magnification is cumbersome and slow once the amount of material increases.
There you have it. Our story in a nutshell. Parental decision making at it's finest (cough, choke, sputter)
2 comments:
I don't have any advice as I too would be worried about and the long commute at such a young age. I can easily see both sides of the coin. I was a bit surprised by the recommendation to start teaching her Braille. Our vision specialist and vision teacher don't advocate for teaching Braille to anyone with any sort of functional sight. Their philosophy, at least in our district, is that learning Braille is often unsuccessful if students have any amount of functional sight as students "cheat" and often don't truly learn by feel as they use their sight and not just their sense of touch. Also, once their sight weakens, if they have a degenerative condition, their sense of touch becomes even more sensitive and this helps with learning Braille. I really have not done any research so I am not 100% sure they know what they are talking about but I thought I'd mention it to you. Your daughter is absolutely adorable by the way. Best of luck in whatever you decide to go with.
THanks for the comment! I too was surprised about the braille idea. When I questioned the CNIB folks and the vision specialist for the school board they both said that the braille might not be used for all subjects but when it comes to reading magnification becomes very cumbersome and slow as the volume of material increases. I guess it will be seen as to whether Malia decides if it is useful. WHat saw on the tour of the school was that the other kids with vision impairments seemed to be far less sighted than Malia. I still think it is the right environment and Malia is really going to have to lead the way and we can make changes as she becomes more able to understand her vision. At this age she of course does not understand that she sees differently or less than others.
THanks again
Tricia
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