Saturday, July 7, 2012

Roadblocks and Root Causes

Yesterday I had the opportunity to see Maya during one of her swimming lessons.  This is always a special treat because when I go swimming with her she is usually too over excited to do much except run from one pool to the other and splash around.  So I love that her school let's us come once a year to see them at their lessons, to see the progress they are making.

And Maya is making progress, step by step she is getting there.  Her big feat a year ago was being able to go under water.

But now she is swimming, it is a doggie paddle mostly with the occasional dive under water, but who cares, arms and legs are going and she moves from one place to the other, without walking.

Maya, being a Dutchie, and the Netherlands being what the Dutch call a "waterland" means that swimming is of prime importance for kids.  The weather sucks but Holland's canal systems means that there are very few houses without creeks running in front or behind them to help prevent flooding, so swimming is an important skill to master.  And since the Dutch love their rules and they are Calvinists, it is important to get a 'swimming diploma' or several swimming diplomas.  The Dutch being the Dutch having the diploma is way more important than actually being able to swim.  Me, I only care if she knows how to swim and has fun doing it.  But that's my American all-for-profit craziness at work.  

Still, Maya, being Dutch is a little fixated on getting a swim diploma.

Her swimming has improved a lot over the past year, going from this to this.  And I spoke with her teacher and she told me that they really think that she might be able next year to get her first diploma, they really said her skills are pretty good but lack of ability to focus means that the progress is very slow as it takes such a long time for them to teach her anything new, because she is chaotic, she runs off and does her own thing most of the time at swimming lessons (you can see that clearly in the video from this year, Maya is off swimming by herself while the teacher is at the other end of the pool teaching the kids something.  .

We always come back to focus.  Focus is a roadblock

If I apply Lean Six Sigma methodology to Maya and pretend she is a process, I would say that focus is our significant root cause.  Meaning that if we could find a way to address that we could experience significant improvement in all areas.

Alas, Maya is not a process, but a little girl with autism.  So while the principle works the same, solutions are not easily found.  She makes progress but her inability to focus adequately keeps her progress at baby steps.

I feel like if we could put our finger on focus, she could run, sprint, jump hurdles.

I can honestly say I don't have the answer.  Leo and I use patience and encouragement, we don't pressure her and I am 100% SURE that is right for Maya.  Pressure will take the progress away and each little baby step encourages her to do a little more, to try what she is afraid of, to not listen to her natural fears and anxiety which tell her to hide under the table.

And I also think that loading her up to the gills with therapy is not the right answer for her either.  Maya really needs her downtime, she does everything in her own time and her own way and turning her home into an extension of school, I truly believe will also impede her progress because Maya needs not only techniques, but encouragement and time and if we fill up every moment with therapy, that every waking moment of her life is a learning opportunity, I feel we risk her self confidence which I think is one of the main ingredients in this recipe.

I read about other parents that send kids to every kind of therapy under the sun and some kids thrive with all this extra support but some don't, they may make progress but some don't.  It's not a guarantee and there's no one thing that works for everyone.

That's the head banging truth about autism.  When you know one person with autism, you know one person with autism.  There isn't 1 answer.  What works amazingly well for one does nothing for another.

So, we as parents are largely left to our own devices and to the available support we can afford for our kids.

Autism therapies aren't as well developed here as in the US or other countries.  ABA is non existent, they don't even train therapists in it yet here and OT is quite rare as well and it is still mainly used for senior citizens to keep them active.

I do think the reality of special needs life in the Netherlands is while there is a lot of support available and what is available is covered by health insurance,  I do think the mentality here is to encourage but not really to push the boundaries. The Dutch are not a very push-the-boundaries-kind-of-people.  There isn't every kind of therapy imaginable (and also not a lot of drink-the-Kool-aid type therapy either).  

In the Netherlands they don't have the distinction of high functioning, low functioning.  You have a diagnosis and an IQ score and that pretty much determines your route.  I think it is, in a way a good thing that they don't use those labels because I think you can easily get fixated on a label, and a lot of high functioning kids have loads of issues too and they have a hard time getting support for those issues.  In many ways, in the US at least, you get much more support if you are low functioning and if you are high functioning your kid is probably going to mainstream school and maybe struggling, because they need support and services that just aren't available.  

I would say Maya doesn't fall into high or low functioning.  She is medium functioning.  She can do a lot of things but she cannot always demonstrate it in ways which are measurable by Dutch standards.  She is chaotic and cannot focus but she does have the ability to learn.  

At this stage in Maya's development, I do think she could benefit from ABA but it's not available here.  I know there are parents who learn how to do it themselves but I find without the support of a qualified therapist in the beginning it will be tough to do, it will just be me running around after Maya trying to channel and refocus her and while I have a lot of patience for my daughter, I am not that good with remaining neutral and in the moment with her.  Plus, I have to work and have no option not to work and take on a job as Maya's full time teacher and therapist.  My time with her is limited and I don't want to turn home into an extension of school because that is not good for her.  

I spoke with Maya's teacher about this yesterday, about how I feel that her ability to focus is standing in the way of her progress.  Maya continues to have a tough time listening and focusing in school these last weeks and we discussed that Maya is going through a lot of change at home and while she is not necessarily being difficult at home in the classic sense, that Leo and I recognize that she is 'off' these days.  And that we are planning to have a more structured summer holiday and spend a lot of time with her, things are where they are right now.  

Maya's teacher suggested that maybe it would be a good idea to talk to the school's psychiatric social worker about it.  She felt that we could use some more support for Maya at home and outside school hours.   So, I will speak with her next week and we will see what comes of that.  

So, maybe Maya's difficult time will lead to something great for her.  

For now, I'll take the swimming.  


  1. Oh man, I would totally, totally take that swimming progress!

    Three steps forwards, one step sideways, three steps forward again.


  2. Great post, Dana! As for the learning how to do ABA yourself, while it can be done, I personally found it very difficult to be both therapist and mom. It was also very confusing for Cady, especially since for her each person in her life has a specific role, and mine is mom: nurturer, caretaker, healer of boo-boos, her "safe: person from all the people (ie: therapist and teachers) who place demands on her, etc.. To be both therapist and mom upset her greatly, and understandably so.

    I also am very cautious as to how I "help" her with something, lest she think I'm trying to be her teacher, thus causing her confusion and subsequent distress (I walk a thin line when assisting her with homework).

    But that is our experience and everyone is different. Just wanted to share. :)