Sunday, November 27, 2011

La Vida Microscopo

They say that when you enter public life, whether as a politician, a celebrity or just a person of interest your life goes under a microscope.  Everything you do, ever did (and probably will do) is poked, prodded, dissected for all the world to see.  Every small hiccup becomes a huge incident and that person's life is forever changed for having been put in the proverbial fishbowl.

It's kind of like that with autism too.

Everything your child does and doesn't do becomes scrutinized, something to judge against the diagnosis.  Something to work on, another problem to address.  Something else to do in an endless list of things to do.

Don't get me wrong, it's great that so much time and effort is spent in trying to help Maya -- and in order to help her you have to first know what the problem is.  But sometimes reading those reports --from physical therapists, from speech therapists, from psychologists and psychiatrists, from her teachers gets to be a little heavy duty.

I have mixed feelings about these reports.  On the one hand they are a window into Maya and they lay out observations, test results and goals for the coming (usually) half a year.  Most of the reports say a lot of the same things, they talk about Maya, what they observe and measure her own development against what is considered age appropriate.

What's in the reports are not a big surprise as we observe this in Maya day after day and having been through this routine for 3 years we know what to expect by now.  Still, it's tough to see your child falling short, but it is in some way even tougher to read about it.  What's that saying about that people will believe something more if it is in print, that if someone bothered to write something down, it must be true?  Well, that's how it is with these reports.  It's a written record of your child's problems and while the reports are factual, in that I recognize most of what I see written there about my daughter, it's tough to see it written about in just a factual way, without compassion, without tempering this tough stuff with what a great kid she is, and how far she has come, with hope for the future.

Most of the reports are the same but only differ in the discipline, it's about her communication skills, her social skills, her behavior, her physical challenges.  They start off with a brief summary of the diagnosis, my pregnancy, our family situation, what's been done so far and then each one kind of lists her problems relevant to the evaluation (motor skills, speech, academic ability) but they more or less say much of the same thing.  Maya's development is not age appropriate, her attention span is too short, she has trouble following directions and doesn't have the drive to complete a task from start to finish.  She lives in her own world, which always figures prominently in these reports.  While she speaks beautifully (in two languages) her language comprehension is significantly less than what she can produce.  She gives off a chaotic impression.  She has a significant delay in her fine motor skills which manifests itself a lot in her difficulties in writing, using scissors, using a knife and fork at the same time.  Maya can use a fork and she can cut her meat but she cannot use a fork to hold her meat while cutting with a knife and she cannot use a fork to scoop and shovel her food so she still eats things like rice or potatoes with a spoon.  Her skills with a ball are not age appropriate, she rarely will put her arms up to catch a ball, she cannot hop on one foot for an appropriate length of time and there seems to be something not okay with how she jumps on two feet.  Also when she stands, walks or runs her feet favor the outside of her foot which is somehow also problematic, even though my feet do the same exact thing and while I have never been known for having exemplary physical coordination,  I have managed to walk upright without spontaneously falling my entire life (at least so far) and I can (still) hop on one foot like a champ.

It's enough to send me to bed for a month, I tell you.

I get it, it's a report, it's not supposed to be compassionate, but still it's tough not to see your child reduced to a gaggle of problems which seem insurmountable.  And while progress is made, over years the reports seem very similar and as the years go by, despite progress the gap seems to get wider between your child and what is considered in the range of typical development.

I have had to learn to read those reports (and translate them from Dutch) but have also learned to walk a careful tightrope (despite my outwardly bent feet) of understanding what challenges my daughter faces but not letting these reports define her.  It would be so easy to get lost in her sea of problems, which while again, progress is made, is apparently minute and does not to have a big impact on what these kind of reports say about our daughter.  The reports, despite some progress do not really vary from year to year.

This past week we received the results of Maya's physical therapy evaluation from school.  This is the first report we have had in a long time (more than a year) but to be truthful, Maya hasn't had much in the way of therapy for a year either.  Her former school was so focused on their rules and for ensuring our daughter didn't stay there too long that she never was enrolled for therapy, even though she was evaluated and therapy was indicated.  At her new school Maya came pretty late in the school year and rather than do an evaluation, set goals and then have to do the whole thing over again in the new school year, we opted to just let her be evaluated this school year.  Which means she hasn't had structured physical therapy for more than a year.  Now they have completely finished their evaluation and have set some goals for the coming year.

The evaluation and the report were of the ilk we had seen before (seriously, they could just copy/paste, it would be easier).  But what I did like about it, were that the goals were much more concrete than we have seen in the past.  The challenge for a kid like Maya is indeed setting and meeting goals since she is a kid where it is tough to evaluate her and work toward goals since she is not the type of person that structurally starts a task, completes it and moves onto the next task.  In every report there are goals which are phrased kind of like this:

...improve Maya's (insert type of skill here) skills to an age appropriate level
...Maya can score sufficiently on (insert type of standardized test) 
Now perhaps it is my years as a personnel manager charged with appraising people's job performance that tells me that these goals are not SMART (Specific, Measurable, Attainable, Realistic, Time-bound).  I have thought this in many a meeting but have not said much about it, mostly because I didn't think of it this way until recently but also I am ever mindful of trying not to be too "American" in these things.  Certainly if you are offending the people who are charged with trying to help your kid, they may lose interest in your kid, and making all kinds of cultural faux-pas is certainly one way to ensure that.  Also I think perhaps they are purposely not too specific, etc. because this way if it is not too clear they can claim success even when the problems still exist.

Anyhoo, in our latest report, Maya has some very specific goals for the coming school year, which I think are great, some of them are:

  • Using adequate pen pressure, draw 5 small squares with a 5 cm edge, fully coloring inside the lines.
  • Being able to independently hold 5 thumbtacks in the palm of The hand and place them on a bulletin board without dropping any.
  • Being able to jump over a knee-height stick 20 times
  • Being able to hop on each foot 20 consecutive times 
  • Being able to 8 out of 10 times catch a tennis ball in two hands
  • Being able to throw beanbags into a basket from a distance of 3 meters (about 10 ft) correctly 7 out of 10 times
This is the first time I have seen goals laid out so specifically and I think it is great that they are doing it this way, as I think it will be much easier, based on how she does on these goals to really understand where she is.  

Still, though, could I a neuro-typical fully functioning adult get 7 out of 10 beanbags into a basket 10 feet away?  Based on my record of throwing clothes into the hamper, I think it's pretty iffy.  

My point is, that like that politician or celebrity or reality tv whore star, Maya's life, because of her autism, is put under a microscope.  And which of us, whose every day life, when infused with such careful scrutiny doesn't come up with loads of mistakes, infidelities, financial and/or family messiness or even worse?  I dare to say that short of Mother Theresa, almost none of us.  

I have to believe that the same is true for autism.  Yes, they turn over every stone and then some to evaluate your child.  Most neuro-typical kids don't go through these kind of evaluations, I certainly never did and I was probably the worst physically coordinated kid out there.  I am sure I would have failed this battery of tests too and had I been a child today, I probably would have had to have hours of physical therapy too.  

Which is not to say that I don't acknowledge Maya's problems, I absolutely do and I am glad to see SMARTer goals, but there is also something called perspective.  I do totally affirm Maya's diagnosis and her problems, I know that her development is not age appropriate and I see as time goes on that the gap between her and her age-appropriate-developing peers gets wider, despite the progress that she makes.  But I am also quite certain that if those same age-appropriate kids went through the battery of tests, observations and evaluations that Maya did, they would have problems too.  It's unavoidable.  

A microscope by it's very nature magnifies, it brings things which are not visible to the naked eye into focus.  It's a good thing but it is also good to remember that if your child is autistic or has other special needs that microscope is how your child is viewed by the professionals around him or her.  

That is the role of the professionals - to bring your child into total focus.  They need to do that in order to be able to help her.  I get that and acknowledge it.  But my job as a parent is to hold that total focus in perspective, not to let it overcome us or her.   To build her up, to be her cheerleader, to teach her acceptance and compassion, to teach her how to win and lose with grace and dignity, to teach her to love others and mostly to love herself.  

That's way more important than whether she can throw 7 out of 10 beanbags in a basket.  

Yes, my daughter is autistic, she has a whole load of developmental delays and problems.  But she also has amazing gifts and strengths.  I have to believe that after all the analysis and therapy and trying, those gifts will come to the surface and we will find a way.  


  1. Hi Dana
    we cross-posted a long time back ( I am a friend of Zendette). I am a teacher of low functioning autistic students in Canada, and we use Geneva centre based goals - specifically they are 1)what is to be measured 2) How can it be observed 3)How will it be tracked 4) what will define success and ready for next steps.
    I may write a goal that student x will complete his personal identification information sheet 5 days in a row at 95% accuracy. I will create data tracking for it, and then chart his progress each day. When he fulfills the goal, I change his IEP and show that he has attained success, and go to next steps. I always have next step planning in place and let our parents know when we have reached mastery on anything and when we are ready to move on. I am trained in ABA and the TEACCH method. If any of this is helpful to you, I can send you more information to help you advocate for Maya's needs at school