Saturday, May 11, 2013

What do you hope for?

On Tuesday we have an interview with the government agency charged with providing additional funding for those with disabilities.

While Maya's school covers her therapy basics, physical therapy, speech therapy and one-on-one attention and a personal education and development plan, that is as far as things go.  If you want therapy outside of school, you need to request additional funding from the government for it.

Comparitvely speaking, I would say that the Netherlands is a pretty good place to be if you have autism.  Because the Dutch place an extraordinarily high value on conformity , they pounce on differences and want to weed out anyone that can't conform to the standards.   Although the official education policy says that as much as possible, they want to mainstream kids with special needs, the reality is, that in the majority of cases most kids with special needs are not mainstreamed, even those that are high functioning, if they go to a mainstream school, they are in a separate class.

Actually in the Netherlands they don't even use the terms high functioning or low functioning.  Not one person we have dealt with in 5+ years since Maya has been diagnosed has ever used those terms.  In the beginning of the journey, I asked them to classify Maya in this way (because I read so much about it on the Internet) and they insisted that the Dutch system doesn't label children in this way.

There's two ways to look at that.

One is that they don't label the kids and look at each kid as an individual and understand that even a high functioning child might need extra support.  The other is that they don't believe a child with special needs could be high functioning.  So depending on how you look at it, the Netherlands is either light years ahead or light years behind the curve.

I've basically decided to apply my best tunnel vision techniques and not answer this question, because Maya is getting supported and she absolutely, positively needs that support.  A  high functioning label might make me feel better about her future but it also might deny her the services that she so desperately needs.  I am sure if she wouldn't qualify for support, she'd be a mess in a mainstream environment and the multiple daily meltdowns we were dealing with would have become much worse with age and physical strength and Maya would be largely locked in her own world.

Tunnel vision it is.

Anyhoo, we have this interview on Tuesday because we feel Maya could really benefit from some additional support and we are asking for additional funding.  The Dutch call this additional funding a rugzak (backpack).  It's basically an annual sum of money which can be used to offset the costs of therapy, special needs extracurricular activities or additional costs (for instance childcare) since there are no after school programs that accept special needs kids (and even if there were, the costs would be exhorbitant).

The backpack can make a huge difference.  One of Maya's school friend's parents gets enough each year to fully cover additional therapies and childcare after school in the home.  Here, I have been paying out of my own pocket to have an au pair since Maya's horrible mainstream school experience because there seemed to be no other options for us.  Not that I would use this money to cover the au pair, but still.  Amazing how after 5 years in the special needs system, no one ever suggested to us to apply for the rugzak.  You do get a lot more from schooling than you do in places like the states, in the US a school like Maya's would probably be a private school, so I am not complaining, but things are just as full of fragmentation and no one gives you straight information here either.  It's like they build the system purposely difficult so that you have to work to find out everything you need to.

We want to enter Maya into an after school program focused on developing athletic abilities for special needs kids.  It's a fabulous program and it is run by a friend of Leo's family.  They would pick her up at school,  bring her to the gym and they work one-on-one  on different sporting activities and if they find one that your child is good at, and enjoys they will coach them.  Some children  even make it to Special Olympics.  They also have dinner at the center and the kids  learn how to help with things like setting and clearing the table, preparing food and doing chores.   Five of their assistants are people with special needs so for some, it can even offer some kind of career path.  After dinner, they bring the children home.  We think it would be really great for Maya to do this 1-2 days a week.  She reallly loves athletics, and it is good for her physically and the one-on-one could really benefit her without putting her in a strict therapeutic setting.   Down the road if we do get the funding than we would look into ABA therapy.

We'd never even come close to being able to afford this kind of support on our own.  Without the backpack, we don't do it.

Here's the rub.

Maya has come a long way since she was given her official diagnosis of autism.  She understands much more of the world around her, she is more often than not present in the world around her.  If I re-read the psychiatrist's, psychologist's, therapists, teachers reports, Maya has developed quite a lot and while all the behaviors and things they point to which justify the diagnosis are still there, they have a much less significant impact on her life.  The fact she is in a special needs school, and actually the type of school for kids who have the hardest time learning should carry a lot of weight, but still, how do I know that the guy interviewing her doesn't really believe in therapy or doesn't believe that Maya is disabled enough to justify extra funding?

Do I, her mother,  actually hope that this guy finds her disabled enough?

As her mom, I am not enough of a Pollyanna to wish that she wouldn't have autism, because I know she will have autism for life, but what I would wish for her is that her life is not defined by her autism.  What I want is for her to develop enough so that her adult life is one that offers her as many choices as possible rather than a life which is defined by her challenges.   Of course, I don't have a crystal ball and it is hard to know what Maya's abilities will be in a decade, but I feel in my heart that Maya is capable of much more than she shows.  Even a year or two ago, I didn't feel that Maya was ready to handle any additioanl activities or requirements on her time and that anything additional would actually limit her progress.

I do feel she is ready for that now.  While we are very happy with her schooling and she does make steady progress there, I feel that without additional support we really run the risk that developmentally she will progress, but remain within the same competency level that she is in now.

I know that an athletic/therapeutic program or any additional therapy we would do is no guarantee of a different outcome.  I know that and accept it, but I also don't want my daughter defined by my acceptance either.  I want to give her every reasonable chance.

So, yeah, I guess I am hoping she is disabled enough.

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