Thursday, May 26, 2011

Worthy of Shakespeare

I am pretty sure that if Hamlet had been diagnosed on the autistic spectrum, that soliloquy would have started with,
to mainstream or not to mainstream, that is the question
Educational paths for our children seem to be one of the most stressful and loaded decisions for parents with kids on the spectrum.  Even though we know a lot more about autism now, these kids don't fit into a one-size-fits-all category when it comes to education.  Autism being a spectrum disorder, comprised of a host of symptomatic indicators, in the areas of social skills, language and behavior.  The causes of autism are not clearly known and highly debated with a lot of false causes swirling around promoting a lot of false prophets as well.  But choosing what educational route is best for our children on the spectrum, for me, has been by far the most stressful, harrowing and far reaching decision I could make for Maya.  So much depends on the type of education she is given as the type dictates so much about what kind of life she will have as an adult.  Dealing with this over the last three years has definitely grown the bags around my eyes.

At this moment I do not have the possibility to mainstream Maya because her IQ score is too low for mainstream education in the Netherlands.  However, all her psychological and psychiatric practitioners who have been involved in assessing her all agree that her official IQ score is no concrete indication of her cognitive abilities, since out of 5 areas of testing, Maya tests within acceptable limits for her age to indicate typical cognitive functioning and in just two areas is her cognitive development outside of those limits and low enough to pull her overall IQ into the mildly mentally impaired range.  Also based on her social delays and her ability to focus on tasks we did not feel mainstream education was at all an option for her, even if it was.  I had a lot  of sleepless nights regarding placing Maya in the difficult to learn category of schools here.

I know that for the past 3 and something years, since we have basically been on this autism journey more than once I have had to struggle with reconciling the dreams I had for Maya as opposed to the reality of what and who she is.  It can hit you anytime and often at the strangest times, at a birthday party, when you look at other children, when I see friends posts on Facebook about their children, when your child is alone playing and you see other kids happily cavorting together.  When people are looking at you strangely in the mall or the park because your child is throwing a tantrum and you are getting judgmental looks from other parents which say `that child is too old to be acting like that.' At the airport when you and your husband are running around like crazy trying to keep any eye on your child who, for the life of them, can´t just sit down and occupy herself with a book or a toy until the flight is ready to board.   At a gathering with family or friends where you end up scolding your own child repeatedly because you can´t get them to leave the puppy alone for two seconds.  During all these times and many others I have had to face that my child is not like other children and that her problems are lifelong and her limits may be debilitating.  That´s not what you sign up for when you become a parent but for many of us, those of us dealing with an autistic child, these scenes play over and over and over, often like the movie Groundhog Day.

For many of us we dream of a child who can go to school like other kids and with our help grow into reaching their full potential, with a world of possibilities open.  For many parents that means trying to give their child the same opportunities as other children, including the experience of attending  mainstream school.  Many children with higher functioning autism successfully attend mainstream school.  And for many parents with children on the spectrum they fight, struggle to get their kids into mainstream learning.  I admire those parents but mostly those children on the spectrum who are able to successfully navigate mainstream learning.  I admire their parents for fighting the necessary battles against school districts who cannot discriminate but would really rather parents choose special schools for their kids rather than have public schools, with stretched budgets and real problems have to make further accommodations for autistic kids.  I know many parents who have fought and won numerous battles to get their child into mainstream school, to get the school to provide the services their child needs to succeed and who just don´t let up and don´t give up trying to get an appropriate education for their child.

In my spare time when I can't find sufficient celebrity gossip reading material on the Internet I do troll the message boards of Autism Speaks.  I usually start off with some quasi-legitimate mission in mind, wanting to know what issues are hot in the Autism community or to see if there is discussion on a particular topic I am interested in.  I find myself both equally inspired and saddened by a lot of what I see there. There are a lot of parents out there who are struggling with some aspect of autism, or more likely - many aspects all together and many without support systems or the inner strength to keep going without being sucked in by it all.

Still, without fail a large portion of what I read there is about education and the decision to mainstream or not. Many people, particularly in the US seem to not have a lot of free choice in the matter since a lot of the best interventions and programs out there come with a hefty price tag and unless your last name is Kennedy or Gates or Jolie it's not happening.  Besides that  many parents seem to feel that mainstreaming their kids is the be-all-end-all for their kids.  And I get that too, if your child can keep up with a mainstream curriculum, even if extra assistance is necessary, why not do it?  There are many autistic kids out there who can and whose issues related to autism don't keep them from excelling academically and even socially in mainstream schools. I do think though for many parents mainstreaming does something else.  It makes us feel better, that our kid can hack it, that they have a chance, even though they might have problems to do what other kids do.  And if they can do what other kids do, as adults they can do what other adults do.  I get that.

I love Maya more than anything and I have come to accept her for who she is (and I cannot separate her autism from that, it is just part of her) but there is always this part of me that wishes it wasn't there, that she didn't have these challenges.  That she could just run, jump, play, make friends, wear any kind of clothes, roll with the punches, read, swim, know her address and phone number and a whole host of other things.

I admit, there is a part of me which would feel less scared if Maya could hack it at mainstream school.  I certainly understand why so many parents of autistic kids fight (and many have to fight battle after battle) for their children to attend mainstream school.

But as much as I read a lot of success stories about how parents fought for their kids and their kids, either with extra help or not, are excelling in a mainstream environment, I read just as many if not more accounts of how truly difficult this environment can be for a kid on the spectrum, even if that kid shows the cognitive aptitude to be able to handle it.  Mainstream schools can be inflexible and rigid in what accommodations they can or may be willing to make for a child on the spectrum and I have read too many accounts of schools, teachers, guidance counselors who do everything short of saying "we don't want your child at this school." Public schools are overcrowded, budgets are stretched paper thin (to the point where there isn't enough paper) and school personnel often don't have the time to give the extra attention necessary for some children with special needs even if they want to.  And still others, like Maya's first school, a Montessori school, did everything possible to give us the message each and every day that Maya didn't belong there through inflexibility, isolation and making us feel like bad parents.

Maya, although flourishing in her current school, is not in a situation where she could be mainstreamed now.  Although she is growing and developing every day and I am sometimes amazed at her progress, I know that she is just not in a position to handle the rigors and requirements of a mainstream curriculum.  And I also know that being in that environment day after day would eat away at Maya and probably push her back into that own private world of her own making, where she is not reachable, where she feels awful, she feels under pressure, where she spends a significant part of every day alternating between isolation and being out of control and where she feels worthless because she is not succeeding enough.

Yes, I definitely worry that eventually this low pressure environment will not be enough for her, as I can so clearly see (and her teachers tell us as well) that Maya's level is significantly higher than the typical students at her school and that because the bar is not high enough Maya will not reach her full potential.  I worry about that.  But I do think for now being a big fish in a little pond is just what the doctor ordered.  In 8 weeks since she started at this school, she is much more present in the real world, trying new things, dealing with change better and focusing well at school.  For us, for now, for our child, this is the right choice.

Leo and I, for the first year after Maya's diagnosis lived in this little bit of denial.  Part of it was the 7 stages of grief you go through when you hear that your child has a lifelong disability, the shock, the denial, anger and acceptance of it all.  But there was something more for us.  For a long time we convinced ourselves that Maya was just young for her age and if we just slowed down and gave her some extra time, she would catch up, go to mainstream school and everything would be fine.  We convinced ourselves of that, said it quietly like a little mantra, we relied on it, we wore it like a badge of honor.  If we can just help her now and give her some extra time she will go to mainstream school and be like every other kid.  That mantra kept me going during a very sad period when we were dealing with the heartbreak of it all, where all I wanted to do was be a bear, hibernate through the winter and wake up in the spring, when everything was warm, green, dew kissed and mostly autism-free.  If only.....

It took us a long time, a lot of talking and lots of sleepless nights to put aside the notion that success or failure with Maya was defined by her enrollment or non-enrollment in mainstream education.  It did take separating our dreams for her from what would be best for her.  I firmly believe that while Maya will have to deal with autism her entire life and that it will certainly present challenges for her, that the key to her being successful lies in her own confidence and self worth that she creates for herself with our help and support.  So Leo and I have, after that initial dark period decided that an environment which would give her more room, where she could slowly and steadily learn how to deal with her challenges, be defined by what she can do rather than what she is failing to do would be the best for her in the long run.

A friend recently said to me that when you know one child on the autistic spectrum, you know one child on the autistic spectrum.  That really is true, no two are alike.  No one formula for therapy, for life, for school works for every child.  I often tell people that I experience autism in the same way a janitor has a huge keyring with hundreds of keys on it.  With a person with autism you are constantly trying different keys until you find the one which opens a door.  And when you open that door you are happy, but a moment later you see another door with another lock and the search starts all over again.  That is my most eloquent statement about autism and a true reflection of what it is like for me.

Every parent knows their child better than anyone and I think we all as parents (of autistic kids or not) need to make decisions which we feel is in the best interest of our children, decisions which will help our children grow into happy, confident adults reaching their full capability.  And every parent has to make the decision on education - mainstream or not to mainstream.  It is the toughest decision.  We all agonize over it and question it even after we have made it.  It never goes away.

And I haven't given up on the hope that maybe one day Maya can go to mainstream education and maybe she will be able to get a university education.

After all, what are with without our dreams and ambitions?  I want everything for my daughter.  

What I am not doing is looking at mainstream education any longer as my badge of honor.  It isn't.

My daughter, her growth and development, her happiness no matter how much or little she can achieve - that's where the real honor is.


  1. Schools here fight to keep kids in the mainstream, or at least in district, b/c they don't want to foot the $100,000/yr bill the private schools cost. In order to get an outplacement you have to be on the VERY severe end of whatever disability you have. There is even a girl with Rett's at Katie's school. Non-verbal, severe, feeding tubes, etc...who should CLEARLY be outplaced, esp with such medical needs, but she's not. The amount the private schools cost take a huge chunk out of the budgets. If you only have a 2 million dollar budget, 100 grand is a lot. What there needs to be is more state funding or federal funding for specialized schools.

    K is in the mainstream, and her IQ tested average, ONLY b/c she tested really high on one part, which offset the REALLY low she tested on the other. Not that I think she has any cognitive issues, and if anything I think the test is not reflective at all of how smart she actually is. IQ tests are not at all reliable with kids on the spectrum. The behaviors get in the way during test taking. Schools should really base it more on what a kid can do and not some stupid number.

    Inclusion is huge, though. It's what you are supposed to want. I don't. I would like Katie to be half days in the autism class. That is what we are trying to get. Mostly b/c she needs so much support right now, and b/c kids are starting to notice. How much support is too much, you know? When do you realize a kid needs more than the mainstream can offer? If we move to Germany it will be interesting to see what happens there.

    I am probably also an awful person b/c I don't accept Katie's autism as part of who she is. I wish it wasn't there and I see who she truly is underneath what I really see as a parasite. Probably b/c it does cause her so much pain. When you hear your kid say she hates her life and her behavior just be so atrocious, it's hard to accept the Autism part....

  2. Jen,

    You said so prolifically what I was fumbling to do in my post. Inclusion is what you are supposed to want.

    I think generally things in the US are tougher than they are here. I have no idea what Germany's special education programs are but I do know that the Netherlands when your child has an autism diagnosis you are free to choose to out place them even if their IQ is average or higher and the money is there. I know it is a huge burden we don't have to deal with in that we don't have to pay for anything ourselves in terms of her education. You have to go through the bureaucrats of course to get it and supply tons of info and paperwork and wait, wait, wait. But if your kid meets the criteria they get the funding for outplacement. Maybe in Germany it is similar. I took a quick google and found this Based on the bit I skimmed it seems very similar to the system in the Netherlands.

    I am with you on IQ scores, I had a lot of frustration here with that on that the tests are so stacked against kids on the spectrum and are not a true measure of what their capabilities are and they offer no non verbal alternatives (like the Leiter R test). Maya's IQ is between 60 and 70 and like you one area influences her score greatly (1 area is so low that it pulls her score down, another is also pretty low, but the others she tests at average or above average). I agree with you it is just a number, but unfortunately in terms of our kids and their educational possibilities it is an important number.

    And I don't think you are awful for hating Katie's autism. I think I find it easier because Maya is a happy child and while her autism may prevent her from achieving certain things academically or developmentally, it prevents absolutely no barrier at all to her enjoying her life. Her autism does not block who she is at her core they way that it seems to with Katie. I think if that were the case I would feel very much like you do about it.

    Take care Jen, have a fabulous weekend and although I know it is hard, your fighting for Katie is going to make a huge difference for her. If you ever feel down, I am just right over here, give me a shout, or friend me on Facebook - I basically live on FB.