I Had To Miss The Dance

"I don't think things are the same as they used to be," said a friend, as we were discussing the ups and downs of our quirky kids in "inclusion" environments.

We took a moment to consider that statement. In our childhoods, it "used to be" that there were weird kids among us, but very few were actually diagnosed with anything. Some of them disappeared to attend another school at some point. I imagine they were really struggling academically and socially, and the lucky ones weren't exposed to bullies. (Bullying still happens, but at least schools attempt to take more proactive responsibility for it these days.) Nobody ever really talked about it.

Some children with more obvious or severe challenges were self-contained in the special education or "resource" rooms, and those of us in the mainstream had very little - if any - interaction with them. There was that developmentally disabled girl who joined my group at camp. We weren't particularly mean to her, but we weren't nice either. Mostly we just didn't pay much attention to her. She couldn't communicate very well on her own, and the counselors showed no interest or skill in facilitating.

But then something happened that I couldn't ignore. I have recalled this defining moment many times over the years, especially now that I can picture my and my friends' children in the exact same scenario.

Joe (*name changed) spent his days in the "sped" classroom. Back then, I had no idea that SpEd was an unfortunate abbreviation for special education, and clearly never took a second to consider what it meant. This classroom was at the very end of the school hallway, near the back door. Perhaps it was strategically placed there for easy accessibility, but I'm not so confident. Ironically and cruelly, it was right next door to the gifted program classroom, where I had a couple of classes myself (another unsolved mystery).

I can't remember how I knew Joe or his name - maybe he was on my bus or maybe he introduced himself to me as we passed each other in that low-traffic hall - but I smiled and nodded at him each time he passed. Why not? He was harmless, and it made me feel good. I never gave him a second thought.

Until one day, Joe approached me at my locker. I'm pretty sure I was flanked by one or two chatty girlfriends, but Joe didn't even pause. He just marched right up and ASKED ME TO THE SCHOOL DANCE. I was floored. I have no idea whether he could identify facial expressions, but I'm sure mine was not too hard to read: shock and awe. Here's why:

• For starters, this was already the longest "conversation" we've ever had. 
• I was a high school girl. Being asked to a dance by anyone is thrilling. But this guy?
• I always thought I was a nice person, but I am so not going to do this.
• Maybe I'm not such a nice person after all.

I can't remember if I said "no" immediately, or more politely told Joe I'd think about it, and then said "no." My friends teased me a little, but we quickly moved on (and I did not go to that dance with anyone).

My parents said I should have gone to the dance with Joe...but I absolutely did not have the self-esteem to pull that off. It wasn't just that I thought it would mar my high school "reputation" and standing, but I had no idea what I would talk to him about all evening.  Did we have common interests? Without inclusion opportunities, we would never know. I barely knew him. And if a few smiles gave him the impression that we knew each other well enough to go to a dance, what would it mean to him if we actually went to this dance?

You might be under the impression that I regret my decision, but I don't. Not exactly. I did the best I could under the circumstances. Sadly, I don't even know if asking me out was easy for Joe or something that took him preparation and courage. Did Joe's parents know what happened? Were they proud of Joe's social awareness and self-insertion into mainstream, high school culture or horrified? Do you think Joe's mother would have wanted me to say yes - even though it would have been completely and only out of pity and "charity?"

Back to 2012, and my friend's comment: "I don't think things are the same as they used to be." 

Do you?

It's My Blog. I Can Cry If I Want To.

We recently switched security systems in our home, and the offer included camera monitoring technology. So we now can watch and record activity around our house in real-time.

This sounded like a terrific idea...until I realized what that meant: never-before-seen chaos captured on tape! Here's a small taste of what happens when we arrive home from school.

Forgive my amateur video editing. It's a security system camera...and I'm not exactly submitting this to Sundance. Enjoy!

PLAY THIS:

A Letter From My Insurance Provider

Dear Member # at Member Address,

We will not process your claim until you send us your Member # and Address.

We already have spent 10 days "processing" your claim, bothering your provider for codes, and then stamping this letter for delivery through the U.S. Postal Service (since we don't believe in email). But we're not quite ready to pay you yet.

In fact, we really hope you will not read this letter. Or perhaps you will, but you have so many other claims to interpret, appeal and decipher that we realize you probably won't get to this one for quite awhile. Either way, we anticipate that we will never, ever, ever reimburse you.

Have a nice day.

Sincerely,

Your Insurance Provider

School Rant

Occasionally I can be eloquent. I don't anticipate that happening in this particular post. I'm really, really angry. The topic - and any parent of a child with "additional" needs already has had this conversation many times - is school.

When I was growing up, we simply went to school - whether it was a public school or a private school of your family's choice. You started there, and you finished there. If you had learning,  social or any issues at all, they probably were ignored, overlooked, undiagnosed or punished. And somehow, most of us managed to graduate high school and beyond. I'm not saying this was a good thing, but it seemed to work for lots of folks.

Fast forward and you'll find my family. Two kids under 11 that have not once left this county - and they are alum of no fewer than 8 school between them...and counting.

In my circle, we take school year by year. We switch schools for various reasons, whether it be evolving diagnoses/needs, school policy/leadership changes, etc. Sometimes it's because a parent has unrealistic expectations. (I received a huge compliment yesterday when another special needs mom pointed out that she thinks the two of us are pretty in touch with reality when it comes to our kids...many parents aren't. Are you?)

I admit public school is the one fight I haven't pursued, despite a few false starts. Scary tales of IEPs and abuse of nonverbal children keep me up at night. It doesn't help when I have to endure hours of redundant evaluations at ridiculous locations across the city...or I find a school situation/teacher I like, only to be told that nobody knows which school will house the "autism classroom" come Fall, let alone who will teach it. Even thinking about it is exhausting!

I am tempted to just pretend we are a typical family, and register my child to show up the first day of class just like anyone else. Hello 3rd grade, meet your nemesis. Bet that would result in some quick action!

Anyway, to get to the point here, school placement is hard. Inclusion is great, but only if other kids are decent and co-teaching is flawless. It never is. Self-contained can work, but only if those co-contained are a good match. I don't even know what I want to fight for!

So I've become a big fan of niche schools - those that know what they can do and do it well. (Of course there aren't enough of these and they never have enough room, but that's another story.)  These days, it's amusing to watch parents fight and compete to get their children into the "right" school - not the elite, college prep school that prefers legacy families with big pockets...but the LD school that takes "high-functioning" kids that might actually educate our children and not just stick them on a trampoline all day.

I am quite fortunate to have a support system of friends with kids on the spectrum, like mine (some would say this is a gift brought to me through autism). So when one of their kids is accepted and succeeds at a school of their choice, we celebrate. It gives me hope for my child. She's not ready now, but someday perhaps.

But when one of those kids - who I've always considered much more school-friendly than mine - gets literally kicked out of school, it's a huge blow for all of us. Really, SCHOOL, what do you expect from these kids? These are not teenagers...these are babies under 10 years old...teach them! We don't lie about their issues because we know that doesn't help anyone. So if you accept them, ACCEPT THEM.

On the same day, I spoke to another friend whose kid is sooooo much more "high-functioning" than mine who also can't find a satisfactory school placement. He's even been mainstreamed in a few places. He too was rejected from some of my back-up schools! It's so depressing.

We are finding programs that are either so dumbed-down for "lower-functioning" kids (aka passive kids) or, alternatively, stronger academically for "higher-functioning" kids but not capable of handling any behavioral issue. Or they weed you out by verbal vs. nonverbal. So what about my kid who is verbal through ASL or an iPad and needs facilitation? Is that less or more desirable to you than a child who is "verbal" but completely inappropriately, or completely echolalia-like (just made that word up I think)? You want to teach "social skills" but don't want the accompanying behaviors a child who needs this help might also have, resulting from frustration or perseveration? I wish I could pick cherry-pick my kid's high-functioning/low-functioning behavior/skills mix too, but that's not how it works!

I have paid a lot of money to a lot of schools. I have spent a lot of time filling out a lot of paperwork. I know it's hard, and I do not have the answers, but I just want a school that will not overestimate OR underestimate my child. And I don't want that school to be at my kitchen table!

P.S. Please, for God's sake, don't blame her (or me) when she runs out the door after you keep it wide open. I told you she would! Let's teach her together.


END RANT.