On Paper

A view of the mountains from our hike this summer. The first time any of us climbed a mountain.
A view of the mountains from our hike this summer. The first time any of us climbed a mountain.

Tomorrow is our IEP meeting for Jake.  For you non-school people, or non-parents of kids with special needs, that is Individual Education Plan.  We meet with all the important people in the school who work with Jake, and sort out some goals and objectives for the year.

It’s wonderful.

They really care about him and us and do so, so much good.

It’s also really hard.

It’s hard to look at Jake on paper.

We always start with some strengths and positives, and celebrate successes as we talk about him.  But the point of the meeting is to figure out the negatives, the things that he needs more support, practice, or focus with.

I hate looking at the papers.

There are so many forms.  It hasn’t even been a year since the diagnosis.  The paperwork for that was an anvil falling on my head.  Heavy.  Every few months, there is a consultation with his Behaviour Interventionist.  Also wonderful, also encouraging, supportive, leaves me with hope, and fills me with forms.  Those forms are like a pick axe to my heart.

They ask me to rate things.  Like, How often does Jake disobey rules or requests? How often does he act anxious?  How often does he make a compromise without conflict?  How often does he speak in an appropriate tone of voice? How often does he question rules that seem unfair?  How often does he join activities that are already started?

I don’t know!

Sometimes?  Often?  Does that make him worse?  Does that mean that he needs more help?  Does that mean that he’s struggling?  Oh!  How can I help him?  How can I ease all of these things for him?  How can I make the entire world make sense?

It’s crippling.

Talking about how well he eats his lunch, or how he is participating in gym does make me happy.  But it disappears as soon as I have to focus on all these black and white questions.

I know it’s on me.  I know the teachers and the EA and the student services teachers are all helping him.  But it’s on me.  All of those things.  I know that they are all connected.  They are all springing from his brain and his sensory issues.  They will all improve as he learns strategies to cope and connect with people.  And that needs time.  And patience.  I have both.

He is autistic.  I waffle between wanting to declare it to everyone I see, just to tell them so they offer more patience with him and wanting to protect him so fiercely from anyone seeing his struggles.  More often, however, I want to share with people what I have learned, what I know now about autism.  I no longer doubt, ever, the truth of the diagnosis.  I have read enough now that I can practically see the strains on his brain.  I can feel the tension of his muscles, grip the piles of words, rules, sounds and smells that are thrown at him.  I can even breathe in the release that his own words and sounds create.

I struggle with the feeling that Jake’s disabilities and struggles are not obvious enough to justify the support that he needs.  His verbal abilities and quick intelligence lead many to focus on his strengths.  While I adore that, and love that people really do see him in a beautiful light, I also see the overload.  The panic.  The feelings of uncertainty.  The lack of short term memory.  The way he loses track of what he is supposed to be doing or what day it is.  The way he invents his own game that he plays in his head beside his classmates at recess instead of actually joining in their games.

I have read about autism being an invisible disability.  I see it.

So yes.

These meetings.  These forms.  This focus on the struggles and needs he has, it is so important.

And it breaks my heart.

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