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.  

When It's Not Autism

If  I could get through a day without the urge to scream, that would be really good.


Maya has been pushing obstinate to new limits the past couple of weeks.  She is refusing to do just about everything she is asked and all of a sudden dressing, bathing, brushing teeth, getting out the damn door are struggles of epic proportions.  And if that weren't enough, coupled with this stubborn streak is super sensitivity, so that when we try to pressure her, she gets very upset, flings herself down on her bed or the couch and pulls a blanket over her head.  And sometimes we even get treated to growls and other Exorcist-type sounds.


The drama factor is dialed up so high at our house that it is like living with Bette Davis.


And Leo and I are vacillating between trying to remain calm and wanting to express our frustration by throwing eggs at the wall.


Instead I ate a pain au chocolat and I must confess, not a bad compromise, all things considered.


When we aren't finding ways to resist throwing things, we are trying to figure out what is causing this behavior of late.  We ask ourselves and speculate whether there is something new in Maya's life, or something difficult, was there or is there a big change in the recent past or the near future, did something happen, could she be feeling insecure for some reason and the big one.  Are we doing something to trigger this behavior?  


When you have a kid with autism you are constantly in a state of trying to figure things out with your kid.  Whether it is educational and therapy options, or just trying to get a handle on why your kid does or doesn't do something.  It's the-autistic-spectrum-mystery-of life.


I mean, maybe parents of non-autistic children also spend countless hours, days, weeks, months trying to figure out their kids, but I don't have the experience of parenting a non-autistic child, so I can't say for sure.  But, I do know that we spend a fair amount of time trying to figure out our daughter, what's going on, what she says, what she doesn't say and most importantly what she can't voice.  Whenever we are in a situation that is tough for her we analyze, over analyze trying to put our finger on what the issue is, what's the trigger, how can we avoid it next time?   I tell you, in my mind Leo and I are like those annoying sportscasters that spend hours on endless play by plays, drawing on the tv with those stupid grease pencils, speculating, analyzing, scoring and Monday-morning-quarterbacking.


Who has time for hobbies, when you are trying unravel such mysteries?


And we do this ALL the time, the trying to figure out things.  Actually anytime something goes wrong there we are, trying to get a handle on it and to come up with a way to navigate Maya and her issues through it.


For instance, birthday parties were particularly tough for Maya for a long time.  It's a lot of sugar, over stimulation and chaos to begin with, and throw in a kid who is not great at going with the flow and who is prone to and not able to handle overstumulation or unpredictability, then you've got your basic recipe-for disaster in the making.  We experienced many-a-party with Maya running around like a chicken with her head cut off, annoying other kids and parents and throwing herself on the floor in major meltdown mode.  Often the parents didn't need to hire entertainment because Maya and her melting down stole the show (and boy, did I love the snide looks and comments I would get from parents about how Maya was too old to be acting this way).


But over time we learned how to deal with it.  We are careful about what parties we choose and try to stay away from the 'big' ones that have a lot of people she may be unfamiliar with.  We go for a limited amount of time and work out with the parents that Maya might need some down time and ask if it is okay if Maya can have some space in a quieter corner of the house during the party if she needs it.  We also ask what the itinerary of activities is in advance so we can prepare Maya for what will happen and most importantly, so that we can explain to her when it will be time to go home.  Sometimes we even ask if we can arrive a bit early or a bit later.  We limit ourselves to one birthday party a weekend as they often travel in packs (listen to me, I make it sound like we get 70 invites a week, uh, not hardly).


And doing those things help a lot.  We have been, through taking a few extra steps and precautions been able to enjoy many-a-party without drama.


So, this is what we do, we notice, we talk, we analyze, we try to figure it out.  Sometimes a child with autism is a little like a puzzle, you can see there is a picture there but can't quite make out what it is.  We go through the drill and sometimes it takes a few days or a few weeks but we figure it out and it passes.  Getting it to pass involves understanding but most often a change in approach on our part, sometimes it means getting a little stricter, getting a little more consequential (in a not trying to be, but closely resembling ABA type of way), getting a little more nurturing, offering choices, taking away choices, sometimes it even takes a bout of not-so-great parenting  (aka yelling) to break through the ice so that we can break through the barrier or get rid of our frustrations in order to look rationally at the problem.


But this time?  This time it is taking a   l   o   n   g   time.   Nothing that we are doing seems to be changing anything.  Maya is still difficult, not listening, we are even backsliding on everyday routine stuff.  Taking a bath is a struggle, after 15 minutes of preparing, her then the not listening, the stalling, the "I am busies", then when she finally gets in the tub, not putting her head back so her hair can be washed, the not putting on her pajamas, the not getting dressed and the most infuriating, when you interrupt her mid-sentence or mid-thought, the starting over with what you wanted her to do.   This particular dance goes something like this:  we ask her to get out of bed and go to the bathroom, she doesn't, we ask again, she hides under the covers (and takes the iPad), we tell her she will lose the iPad if she doesn't and finally she gets up, but wait a second, she sees something on the floor which interests her, she bends down to get it and starts pretending and talks to it, we ask her to focus.  She gets angry and tells us we have interrupted her and now she has to start all over again and she gets back in bed and gets under the covers.


All I can say it is a good thing that the eggs are kept downstairs at these moments.


We've had periods of stubbornness and not listening before, periods where Maya has been difficult, periods where her ability to listen and follow directions deteriorates dramatically,and I don't want to make it sound like Maya is normally a robot who follows directions all the time, there is always a certain amount of room we need to give her.  We live in a world where eighty percent is our hundred percent and we'll even take seventy-five.  (Note to self:  no wonder the statistics of Lean Six Sigma are excruciating for me, with this math).


And Leo and I are breaking our heads to try and figure out what it is.  What sort of trigger is it and how can we get it back under control?  We're irritated and we are weary.  We want to get off this merry-go-round.  Merry-go-round, hell, it is a roller coaster and I want off!


And on one particularly caffeinated morning last week, something dawned on me. Maybe it is not autism at all, maybe it is not something with a trigger that we need to figure out?  Maybe we are so consumed with autism that it doesn't even dawn on us that the answer is not to be found in autism's twists and turns.  Maybe we eat, sleep and think autism so much that we dare not think of another potential root cause (there, I used Lean Six Sigma speak successfully, I can relax now).  Maybe we are too focused on the detail and not looking at the big picture.


Obstinate?  Not listening?  Pushing limits to the parental breaking point at every turn?


Maybe she is just being a kid.