Thursday, March 29, 2012

Honey, have you seen the instruction manual?

During this school year I have been looking for an extra curricular activity for Maya. Unlike the US (at least the metropolitan areas), there is not a veritable cornucopia of activities for kids with special needs.  For a while now  I have been thinking that she might be ready to do something outside of just swimming lessons.  Maya basically goes to school and comes home, while all those around her go to sports or karate, dance, music or art lessons.  Maya is interested in a lot of different things and as hard as it might be, I feel like she might be ready to slowly try something.

I spoke to a friend of several months ago, an avid equestrian.  He has his own horse that he stables here in town.  I told him that I was looking for something for Maya and he did suggest horseback riding.  Horses are very comforting for special needs kids and often there is an innate, natural bond between horses and autistic kids.  After considering it last year,  I decided to leave it, feeling that getting up on a horse would cause Maya a lot of anxiety.  I couldn't, at that point, even to get her to ride one of the horses on the merry go round, and I figured that if I cannot get her on a toy horse, that getting her on a real one might be even harder, I thought sports might be a better fit.

We have tried out sports at a special needs sports center near her school.  Once a week for 6 weeks Maya has spent an afternoon there with her classmates, trying out different sports both to promote sports (as lack of exercise is a concern for a lot of special needs kids) but also to try and evaluate whether a child develops a liking or has a talent for a particular sport.  I am very grateful to the school for organizing this and although Maya has enjoyed herself there, what she mostly enjoys is being able to run around.  She is still rather unfocused and spends most of her time not doing the particular sports activity, but enjoying being able to run around and yell and play.

If only running around and yelling were a thing.  

So that brought me back to the horse option.  

I do think it might work because Maya loves animals, all animals.  She knows a lot about them and learning about them and animals are a source of comfort for her.  I've mentioned before that at times Maya scripts, engages in spouting out facts, or dialogue from movies, tv or her pretend play as a way to reduce anxiety.  A lot of her scripting these days has to do with animals.  She will play with her stuffed penguins and tell them what they like to eat, how they move around and sleep based on what she knows about them.

So, I have a reasonable hope that an activity involving an animal might work for her.  

Close to our house there is a stable that has lessons for special needs kids.  It is on Saturday afternoons for a half hour which seems perfect - Maya won't be able to focus longer than that.  They let you try out a few lessons without committing to make sure your kid really takes to it before you have to make a real financial investment.  So I can just pay for a couple lessons at first and borrow the hat and other gear you need so if Maya doesn't like it, we haven't mortgaged our retirement on something she may end up hating or be too afraid to do.    

So, I called yesterday to find out some more information.  

And then comes the question.

First they inquired about Maya's special needs.  I explained to the woman on the phone that Maya had PDD NOS.  And the woman I spoke with said that PDD NOS is not considered an intellectual disability (translating literally from the Dutch term). She explained that these classes were for children with intellectual disabilities, for instance children with Down's syndrome or kids who had a serious cognitive delay.

So, I had to explain to her that autism takes many forms and that some kids with PDD NOS or another form of autism sometimes have no cognitive impairment and go to regular school, while others like my daughter, have cognitive impairment and go to special schools.  They asked me where my daughter went to school and I told them the name of the school which she didn't recognize and it wasn't until I mentioned that some of my daughter's classmates had Down's syndrome that her tone changed from why are you bothering me to oh perhaps you have called the right number.  

Down's syndrome as a selling point - that's a new one.

It wasn't lost on me that for the first time being considered low functioning is some kind of benefit.

Many times when I meet new parents online, particularly Americans the first thing they ask is whether Maya is high functioning or low functioning.  

I must say that in the Netherlands they don't really use the terminology high functioning or low functioning.  They more focus on a child's abilities and evaluations rather than finding a label to classify kids.  That sounds like a good thing and I guess it is, not to warehouse kids based on some rather arbitrary definition.

I think in the Netherlands it is not so much that they don't want to box kids into a group, but here everything runs off the IQ Test and where you are is where you are.  If you fall into the quote-normal range-unquote then everything is okay and if you fall under that you are considered handicapped to whatever degree you are based on your IQ score.

It's warehousing in a less specific way.

Maya's IQ recorded via the standard WISC test is 71 which puts her in the mildly cognitively impaired range.  First of all I am a person, who long before having a special needs child felt that IQ's are not an indication of much.  But it is what they have here, they don't recognize any of the non verbal IQ scores.

I love Maya's school, they are really good people, who are really committed to the kids (to the degree one can reasonably expect non-family members to be) and she has made good progress there.  One of my fears though is because she is in an environment for cognitively challenged kids, in some way she has already been written off, labeled as impaired which means that no one is pushing boundaries for her.

Please don't get me wrong, I am not trying to say that Maya should not be in the school she is in.  I know that where she is in her development that she could not be in a mainstream environment, I don't know whether she will ever be able to successfully function in a mainstream environment, be it school or working or living independently.  I know right now a mainstream environment would confuse her, would frustrate her and she would stop progressing and start withdrawing back into herself.

But I also don't know for certain that she will not one day be able to function successfully in a mainstream environment.  And there's the rub.

What do you do when your child doesn't fit the mold of high functioning or low functioning?  What do you shoot for, what are your goals?

What is the freaking end game?

Maya is not a savant, she is not a genius with a few oddities, there are some things she does well but so far we have not discovered some genius ability or innate talent which would help to perhaps find a direction in which to push her life into. Maya is a sweet, bright-although-not-always-in-a-book-smart-kind-of-way, kind, courageous child.  Every day she pushes outside of her natural rhythm, she goes against what her innate nature tells her and does things a different way.

She is a warrior.

But she fits no mold, no category, comes with no manual.  There is no way to fly but by the seat of your pants.  There is no way to know.

So what am I going to do?

I am going to look into horseback riding lessons.


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