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.






  

Shiny Happy People

The last couple of weeks on Facebook I have been enjoying seeing photos of friends' kids going to prom, graduating high school, finishing first years of college, even graduating pre-school (yes, there is such a thing now....don't get me started). In short, this time of year, the end of the proverbial school year (at least for those in the US, we Europeans have another month to go) is a time of transitions and a lot of achievement.  It is the time when we move onto new phases in our life, the next grade, the next step or a total change.  I still remember my own high school graduation, the weeks leading up to it were such a whirlwind, the end of an era, in some ways the end of childhood and a time when all possibilities were completely open.  I had a driver's license but wasn't yet in the driver's seat of my own life, so to speak.  Up until that point my parents, and particularly my dad were steering the ship.  That summer between high school and the first year of college was fantastic for me.  The world was there for the taking and although I had the feeling of freedom at other times throughout my life, I didn't have it in such unabashed abundance as I did that summer between high school and college.  I spent most of the entire summer on the Monongahela River with friends from high school, boating, swimming, hanging out, laughing and without a care in the world.  We were all taking the next step of our lives, together but separately and somehow that summer felt like both the beginning and the end of something and I enjoyed it with reckless abandon.

Now that I am all grown up with a daughter of my own, I of course want those same things for her. I so much want her to have great friends and a world of possibilities open to her.  I want her to have many of those kinds of summers spent, laying at the bank of a river, looking up at lightening bugs, talking about her dreams for the future, driving with the top down, music blaring.   Maya's autism doesn't define her but over the last  last few weeks when I have been looking at beautiful young women and men at their proms and graduations, part of me can't help but wonder if that is all in Maya's future?  Maya is very different from these young men and women I see in these photos, many of whom look an awful lot like the kids I went to high school with.  I am pretty sure she will still carry her resemblance to me into adolescence but I wonder if she will be able to experience the fun, the freedom and the wonder of being on the cusp of adulthood with all doors open to her?

I have said it many times before but for me as the parent of a child on the autistic spectrum it is somehow easier not to think too long term.  We think of this school year, the months ahead and try to stay in the moment, helping and focusing on each day, hoping that all those tiny, minuscule pieces will take shape into a big picture.  Still there are times when I can't help myself but to think of the longer road ahead.  Will she go to the prom (for the record I didn't, and I am fine), but will she have a free range of choices open to her, and  be bound only by her own desires and ambitions?  Or will her limitations define her freedoms and choices?  At the moment I would just be happy if she would start reading.

This week Maya has been at camp which is organized by her school.  It is an annual event where the kids go to a vacation park in the area together with school staff for 5 days.  For us, this is the first time that Leo and I have both been separated from Maya for this long a period.  We have spent nights away from her before and Leo and I have separately been away from home for a week at a time, but this is the first time she is away from both of us for so long.  She is doing great there, and having a fantastic time like I anticipated.  It is harder for me to be away from her than for her to be away from us.  But that is as it should be.

Today on the way into work, as I was watching the trees and then the sights of the city of Amsterdam pass by quickly on the tram, I was thinking about all I have learned from this beautiful, wonderful, happy little creature.  And while I know that she is much more than the sum of her autistic parts, I do think her autism has helped me to learn some beautiful truths that if she were a typically developing child I might only see through my peripheral vision.

My daughter has one of the sunniest dispositions of anyone I have ever met.  She is a caring, sweet, affectionate child who will always make the best of the circumstances she is in.  She is a child that knows how to make the most of a moment, to really live in it and she can find joy in the tiniest of things.  And because she can find it there, I also find joy in thousands of little moments with her.  Watching her play with her stuffed animals and telling them how proud she is of them and comforting them when she pretends they are scared or sad or bringing them all downstairs and putting them in a circle on the living room floor and having a story time with them.

We have all in some way been influenced by our own upbringing and bring that into our parenting either voluntarily or involuntarily.  I certainly recognize my parents in some of my parenting and there are times when something comes out of my mouth and I am taken aback because it is my mother or my father.  My parents were loving people but they, like many people of their generation had a tough time showing affection.  As a kid I felt starved for affection, particularly from my mother.  I knew she loved me  but once in a while I longed for her to make the display.  For my grandmother that always came so easy, she hugged and kissed us freely and I can still feel the touch of her delicate thumb stroking my hand as she held my hand in hers.  I can still feel the touch of my dad's tickle on my face as he used to do when he woke me up for school.  I always wanted my mom to grab my hand or put her arm around me for no reason at all, rather than just to keep me safe from traffic or to steer me in a direction.  She showed me her love in other ways but when I had Maya I was determined not to make her want for that and I have never held back any affection from her.   And because of that she is demonstrative too.  And as child on the autistic spectrum, Maya indeed has difficulty reading social cues but if you ask her how does she show someone she loves them she says (and often just does it), by holding hands or tickling someone's face or giving them a kiss.  And she does that freely, it's second nature to her.  She is a comforter.  On Monday when the bus was leaving for camp one of the little girls in Maya's class was crying her eyes out for her mom, having a little bout of separation anxiety and seeing her mom waving frantically at her was upsetting her more.  Maya was sitting in back of this little girl and she was really wailing at one point.  Maya got out of her seat, opened her backpack, took a stuffed animal out of it and walked one seat in front.  She patted the little girl on the head and stroked her hair and when the little girl looked to see who was touching her, Maya hugged her, sat down next to her and held her hand.  Maya may have trouble learning lots of things but she knows how to recognize when someone is sad and her automatic instinct is to try and give comfort.  My girl is a nurturer.  

Also she has amazing endurance.  The world is a scary place for her, she often has to fight her own natural instincts and urges in order to do things as she is expected to.  Each time she listens, each time she follows directions, each time she does what she is told, each time she looks someone in the eye when she talks to them, each time she sits in a circle and participates with other kids, each time she allows all eyes to be upon her without hiding under the table she is going against her own natural urges and instincts.  It's a battle of sorts and she wages war on it every day.  Many neurotypical people I know simply just accept and acquiesce those parts of themselves they wish they could change and say things like, I know I should be more (or less) X, but that's just me.  My daughter wages that battle every day, turning away from her own nature and fighting her way into her own developmental milestones.  If that is not endurance, I don't know what is. 

She has taught me a deeper meaning of patience and the true power that comes with building someone up rather than tearing them down.  With a kid like Maya everything has to be done in her own time.  She does not respond well to pressure, particularly time pressure.  Actually putting pressure on her has the opposite effect.  She needs the time and the room in order to do what is expected of her.  I've learned that it is better to just give her the space she needs to understand what is expected of her and to encourage her when she is insecure than to put pressure on her ('we need to go now').  This is not always easy for me because let's face it, whether we like it or not, life is at least somewhat about time and deadlines.  And I don't succeed 100% of the time.  Some days I am less patient and tolerant and  just want to 'get there.' Some days I lose my patience with her and do exactly what I know is counterproductive.  But a lot of times I don't, a lot of times I encourage Maya's success by giving her that space, by going against my own nature so that she can succeed and have the confidence that comes through doing.  

So, I don't know if she will ever be one of those shiny happy kids that wins MVP or is Prom Queen or graduates with Honors or gets a fantastic job.  I don't know if she will ever experience the freedom of young adulthood or be able to bask in a world of possibilities open to her.  But my daughter shines as brightly as any child and she has wonderful gifts within her.

That is something to be enormously proud of and I am.

Reflections on today....IQ's and Dutch Rules

Another heavy meeting at school today.  The topic?  Maya's IQ.  


 I am getting a little tired of these professionals who admit that they recognize that the standard Wisc test often does not reflect an accurate measure of intelligence or the ability to learn because these tests are difficult for many autistic children but who still say that this is the ONLY measure out there.  Is it really true?


A mere few moments on Google revealed a literal cornucopia of articles on the (un) reliability of IQ scores, particularly on autistic children.  I have not done enough research on the subject to know for sure but there certainly seems to be a lot of people out there who think that autistic children's IQ scores are often reflected as lower than where their actual cognitive abilities lie.  There are a lot of reasons for this, but since the majority of the standard IQ tests out there (my school uses the Wisc) are language based and many autistic kids are visually oriented, this makes it hard for the children to answer well this is reflected in a lower IQ score. 

There are other IQ tests which are more appropriate for the challenges faced by autistic kids, unfortunately those tests, while reliable and (it seems) sound, these tests are not recognized in the Netherlands and I am stuck with only the Wisc tests which tests Maya in a below average range, her IQ varies from 56-72 which puts her IQ at a below average range, in Dutch terms they call this category (difficult to learn), in the US, with a IQ result like this she would be considered to have a minor cognitive impairment.  

Maya had also been tested twice in her former school as well and the results were not so different, although her former school did not use the Wisc tests but SON IV tests which are given to children under the age of 7 in the Netherlands.  The scoring and the tests are completely different but the results there were also that Maya is in the below average range.  However, the difference is that in certain elements of the test Maya produced an 'age appropriate result' but there were 2 sections that due to her developmental delays pulled her score lower.  Her former school also supported the idea that the scores, while they couldn't be discounted completely that they should also not be taken as the final indicator of Maya's abilities.  Maya, toward the end of her time at her old school was unofficially tested again, without pressure or time limits and with a therapist that she was very familiar with and her results were significantly different than during her official tests.  While this cannot of course be counted as an official IQ it did confirm her former school's theory that Maya is much more capable than what she often shows and that the key to Maya and learning is to find a good formula of patience, teachers that are invested in her that she can build trust with and a reliable routine and of course support from us.

Her current school also supports that idea but I have more the feeling that Maya is more a number to them and they need to dot the i's and cross the t's on her and move her onto the next school, etc.  I should say that this feeling is more directed at our family counselor who I am sure is doing the best she can but does not really give us the impression that finding Maya the right educational and therapeutic options are high on her list of priorities.  Today the family counselor, when I asked about how much the difficulty in IQ tests for a child like Maya have an impact on her score.  The psychologist said that indeed that could be a significant factor and while the family counselor agreed she also said that the Wisc test is all there is. When I pressed that Maya needed to be on a longer term therapeutic regimen combined with school, I was again told that Maya should only be there for a total of 9 months because those are the rules (a very Dutch answer).  Then she did get a taste of the Dana Meijler lecture series about how I understood the rules, but that what was important to me was what Maya needs and that everything up to now has indicated that she needs therapeutic intervention in addition to school to realize her full potential and that I understood their rules but that if they were really interested in doing what was best for Maya they would keep her, rather than their rules at the forefront. 

Dana again making friends whereever she goes!! (Come on, I know you are thinking it!).  


One of the most difficult parts of this whole process is that all these meetings and reports are in Dutch, it takes me hours upon hours to go through them and really understand them and even then I am always a little bit insecure about it.  There is nothing I can do about it of course, so I do the best I can, but I often think that sometimes all these professionals don't always get where I am coming from and that cultural collisions are often ruling over these meetings.

 It seems like if we just follow the rules hook line and sinker Maya will end up in an environment which is based on her IQ and the chances are that she will not realize her full potential.  


As her mother, I do accept that she has special needs and challenges and that it is possible that she may not be able to learn what other kids learn so it is not me just blindly refusing to accept my child's situation.  Of course I would love it if Maya would be able to go to university one day and do what other people do, but if she can't, I accept that and will not feel disappointed because it is important no matter what Maya's abilities are that she is able to succeed and achieve as much as she can, no matter how much (or little) that is.  But what I fear more than anything at this moment is that her IQ and their rules will force the system to write Maya off, and she will spend her days in an environment where she may be able to do much more.