God is the madwoman in the attic.
I'm camped out on the threshold with my journal, camera, and plenty of snacks.

Sunday, October 09, 2011

more is a lot of things

Little N started a extended day program for children with Autism.  It meets twice a week, so he's now in school five mornings per week plus a couple of hours on Wednesday afternoon.  Since he's only 3 1/2, this seems like a lot of time to me. 

His extended day teacher approached me at pick-up on Wednesday to ask if Little N is getting any additional therapy.  I was totally caught off guard.  What made her ask that?  Is he losing skills?  Upset or misbehaving in class to the distraction of the other kids?  She brushed it off like, oh, you just never know who is and who isn't. 

The answer is no.  But I asked her, does she think he should be getting additional help?

She told me, yes, more is always better.

I kept the smile and gratitude on my face while the questions and self-doubt unraveled my insides.  Therapy is expensive.  We don't have the right insurance.  We don't have money.  We don't have a car.  He hasn't been in therapy all this time.  We thought he was progressing (whatever that means but we thought we were seeing him grow, learn, his speech is progressing, he's acclimating to new people and places)….

I replied that I was totally open to additional therapy and to talking about it further.

I explained Little N is so young, we didn't want to overwhelm him or stress him out.  (She said that it would toughen him up.)  And I admitted that money is a concern, we're pretty tightly budgeted these days.  (She said that there may be ways to get the therapy - and that she'd ask around.)   As we parted she told me, Don't worry about it yet.  (Too late, ma'am.  I'm queen of the worriers.)

I was still rattled by the conversation when I broached the matter with L that night.  He was not shaken.  No.  More is not always better.  Little N is in a terrific program, 5 days a week, and learning something new every week.  We have limited resources.  More, in this case, may mean less of something else or more of something crummy.  Less budget for necessities.  More time on long bus rides.  Listening to L, more therapy wasn't the default.  It wasn't a reason in itself. 

At this point, it really is too early to make a decision - but it is a decision.  Not a given.  Not a failure or flake-out of something I should have been doing. Not a verdict of "You are a Less Than Good Enough Mother."  Little N is growing and learning.  He is responding.  And he is stressed.  We need to balance what we can give him with what he can manage.  We're the parents of this child and we know him better than someone (kind, educated, good-intentioned) who's worked with him for 4 hours.  Like the childcare books and the therapy books repeat, The Baby Is Your Best Teacher.

L and I agreed that there's more that we (I) can do at home.  I say that I want to understand Autism, well here's my gilded invitation.  Break out the activity and therapy books.  Focus our play to reinforce the work he's doing at school by addressing things like tactile senses or writing and coloring or trying new foods. 

I know it's not the same as working with a trained therapist.  I don't know all the cues or where we should be going or how to get Little N involved in an activity that challenges him.  And yet… it is more than school alone.  It works.  He does respond. And it has some benefits that a therapist wouldn't have.  I can build on a skill incrementally.  I have more opportunity to keep acclimating him to the challenging stuff - like getting his hands goopy or interacting with unfamiliar children at the park - than an hour appointment with a therapist can do.   

This weekend we practiced somersaults on the cushions in the living room and now he can do them on his own.  We also did some really messy playing with custard and he gradually tolerated more mess on his hands before getting tense and needing to wash up.  And we had fun together doing it.  

Autism Mom is part of who I am now.  It's a qualifier to my motherhood that says something about how I play with my son, what I read, what I write, how I react to teachers and other parents.  It shapes how I inhabit my time and that shapes my identity.  It's uncomfortable.  I'm uncomfortable.  Our Autism is showing. 

And it's good.  Getting hands on, brain on, into Autism is growing me.   It humbles me.  It gives me greater context for compassion for my son's good work.  I'm earning the title Autism Mom, which is part of being Little N's Mom.  A medium for knowing this particular little person and for being a more useful medium for his growing into the world.

1 comment:

Allison H. said...

Thanks for sharing this Jen.

Something to remember whenever 'experts' tell you something that doesn't sit quite right: inside every parent is something no one else has, the instinct to do what is best for THEIR child.

Experts trust books, parents trust how they feel.

Keep following the parenting instincts inside of you and Lance and you'll do just fine for our precious N.