Tuesday, December 20, 2011

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.


  1. So much of what you described, Dana sounds familiar to me. I have no idea what raising an autisic child is like - I won't even pretend I can come close to understanding. But what I will offer is that these first steps to asserting command over their own lives and their own decisions is really tough on a parent. One day, you're the sun and the moon to them. The next day everything you do is an attempt to control them. I do know that having raised a visually impaired child that those mother instincts to protect and shield your child from EVERYTHING and EVERYONE is tough to avoid and you begin to NEED to control every aspect of their world. I used to describe it as wanting to follow them through life throwing pillows all around them. Guilt and fear can be really paralyzing.

    With that said, I'll just say, brace yourself. Autism or no, those tween and teen years are a beeeyaatch. You'll feel like everything you do and say is the wrong thing. Just don't beat yourself up and second guess yourself. You are only human and doing the best you can. You will see glimpses of progress here and there, and deep inside you'll know that Maya does love you and needs you every step of the way, whether she shows it or not.

    'night, hon.

  2. True, sometimes it is just being a kid, but with her it's magnified because of her difficulty in focusing and integrating, which is understandably frustrating as hell.

    I would look at changes at school. Not necessarily to find a problem, rather, if she is doing well in school, perhaps she is working hard to hold it together there, and to be a "good girl", and perhaps focus more due to the more coercive environment. Once she gets home, to the people she trusts and loves, she can go back to being herself and "let it all out". Except that after keeping it bottled up all day, Maya just completely fades back into herself, where she doesn't need to concentrate at all.
    Like I wrote, it's hard being a kid and sometimes they just need to unwind in front of the tv or iPad, without forcing an focus and concentration.
    I found that my daughter's behavior is worse at home when it is improving at school, and vice versa. She holds it in all day, and then has to release the bad stuff somewhere, so the safest is with me.

  3. Wow, I hardly ever get comments on my posts so actually I don't even look for them anymore. Sorry for the late response. I don't think that is really it with Maya. Things at school are good there is nothing out of the ordinary on the horizon as far as I know. Maya's pattern is that she just goes in waves, and sometimes we hit the skids behavior wise but luckily it usually doesn't last too long.