In which nothing, really, is illuminated

Yes, this is pretty much it. Gears, gaskets, belts, a little tape, some WD40, and a decent cup of coffee in the morning, gulped, if I'm lucky, during a few quiet moments before all hell commences.

Nothing makes much sense, there is a pile of things to do (emails unanswered, blog posts unwritten, trips to the store in search of googly eyes for a craft project) and homework, always homework.

We drive to school, and Isaac reads the signs easily now: Masonic, Fulton, Stanyan, Arguello, and the numbered avenues. He reads "Road Work Ahead" and "End Road Work" and he hops jauntily out of the car when we get to school, his hand warm in mine.

He's a Kindergartner. He's made the transition.

But he's struggling, as are we. There's not enough support for him, and he's frequently left to his own devices among 20 other children. He worries about all the noises at school: flushing toilets, bells, intercoms, the clamor of recess, the echo of the cafeteria. He tends to wander and perseverate. And the pace of things--it's a lot for him to manage.

Sometimes the other children help him: one little girl likes to take his hand when we walk into class and lead him to his spot on the rug for circle time. Last week, as J. came to drop off some field trip permission slips at school, a few kids came to pat Isaac's back and help him calm down when he started crying. It's very sweet. We wonder how long it'll last.

This week we have parent-teacher conferences, and once again we will try to make sense of our roles as his parents and advocates, while supporting the community as best we can. That is to say, we'll try to get him what he needs--without being [insert expletive of choice] about it.

Inclusion, I've come to believe, is the wrong word. It implies a compromise, a negotiation, noblesse oblige, even. And it shouldn't be a charitable endeavor; my kid, with his quirks, challenges and talents, has as much right as any other to shine in that classroom. His learning style is just as valid. But he needs to be met where he is.

But it's clear that no one has the right tools for this, and he--like so many other special needs children--is paying for it.

So we worry, and we don't sleep well, and we're struggling. And as a result (oh, and yes that pesky global financial crisis), we're reprioritizing a few things, and trying to hunker down and take care of him, and of ourselves.

Comments

[shannon]

It is while reading accounts like yours that I have the most intense daydreams about our happy little work/live commune out in the woods, where our kids are schooled and taken care of perfectly by people who understand and love them, where everyone shares all of the burdens, and there are enough of us that no one is every exhausted. This works because families with only "typical" children are included. Because we're noble that way.

Thanks, as always, for opening this window.

Rooting for your trio,

-S

[Myrna]

Glad to hear the update. I've been wondering how it was going....My nephew is just 2 years behind (3 yo) so I'm watching how it's all working for you. My brother said just the same as you the other day...we have to meet him where he is and keep him interested in people. So...I get it. Hang in there and keep us posted!

[kristen]

Susan, This post is so dead on. Finally someone has the guts to say what inclusion in most of our schools actually is. Not what it is meant or intended to be, but what it is. It is, in fact, a compromise.

I have so much anxiety about the road ahead, much of which I haven't been able to articulate yet. Sometimes I think all the forces of "almost" and "good enough" will be coming together in the next few years to edge that compromise right into the "giving up" column.

We have so many kids that need so much more than they are getting. The schools are stretched thin, the economy is in the red, how do we fix this?

(Oh god, I'm sorry. It would be more helpful to leave an uplifting comment, yes?)

[NIksmom]

Oh, I'm sorry that it's so trying. Some days I feel like I must hae been a cowrd for pulling Nik from school; then I read things like this and feel better b/c you are so right —no one has the right tools for meeting him where he is and working with how he is. I get sick and tired of those who wold say my child deserves less b/c of his differences.

Sending you hugs and good wishes for fortitude and breakthroughs (w/school). xoxo

[drama mama]

Yes, yes, the *noblesse oblige* attitude - you nailed it! That's how I felt when M was in Big Public School, and that's how the majority of my friends with special needs children feel.

Change. I'm waiting for it.

In the meantime, the game plan sounds good.

Hunker. Make soup. Hold hands.

[Ellen G.]

Re: How long will it last?

That's the amazing thing about kids today, at least the ones I see at my daughter's school. Back in my day, we were never encouraged to interact with kids who were different. Now it's all about community and helping others and they embrace it. Just the other day, I got a note from her teacher explaining that she missed music class because was helping one of the incusion kids in her class "settle". Chose to do this on her down, because she knew she could help him. As her parent, I'm awed by her sense of compasion, and learn a lot from her every day. I hope Issac has buddies like that all his life.

[Special Needs Mama]

I wish I could be there, sitting next to him, every day, and helping him and all of you along. It feels so lonely when things are hard. I hope you remember you are not alone.

[jennyalice]

just a little glimmer of hope.... wanted to tell you that Jake's classmates and school mates are remarkably kind. There are kids in the "typical" classrooms that come to sit with Jake at lunch--not all the time, but sometimes, by choice. Each class sits together at lunch, so to move to another table you must ask permission, so it's sort of a big deal, and they still do it... and my kid doesn't even talk. There will be kind children and cruel, but I try to believe that there are good parents out there raising children to be kind. I know that is one of the big things I am trying to teach Lucy. Not *be nice*, but **be kind**. Love to you.