Not Thankful

Americans are wonderful at being competitive, even in their gratitude. That competition tends to warp off into this, ‘I’m-grateful-I don’t-have-it-as-bad-as-those-starving-people…’ yadda yadda.

Should our gratitude be dependent on being higher up the totem pole than some other poor shmoe? We all have problems. They are very real and powerful to each of us. This isn’t a competition. This is LIFE.

And I am grateful. I am grateful for a life that some people might point at and say, ‘I’m grateful I don’t have that life’. I’m grateful for my daughter, who is beautiful. Who, at ten years old, still loves to cuddle. Who makes people stop and stare. Who can go from screaming and crying to laughing with delight merely by hearing a song. Who has cerebral palsy. Who doesn’t move her arms or legs effectively. Who can’t speak. Who lights up my life and dominates my life with her existence. Who teaches me things nobody else ever could. I’m thankful, not because things could be worse – things can always, always be worse, and they can pretty much always be better. I am grateful for her in her entirety.

And I am thankful for my littlest girl. Who scares me to death with her fearlessness, and makes me so proud right at the same time. Who doesn’t walk places – she frolics. Who has been wearing the same tutu for two years now (I have washed it, I promise), and tells me she wants to be a ballerina doctor when she grows up. I don’t know what that means – I think I’ll sit back and watch what happens. She puts on a heck of a show.

My life wouldn’t be what it is without my babies. If you need to say, ‘I’m thankful my child doesn’t have cerebral palsy’, then go ahead. But please don’t say it to me. I’m thankful for my children. One of them has cerebral palsy. It’s part of the package. And I adore the package.

peace

Super Ballerina!

It’s a small, small world

The best definition I’ve ever heard for inclusion is this: everybody everywhere. Inclusion means letting the people with disabilities be where they are, whether that’s right alongside a neighbor without a disability, whether that’s working in a local store, or going to a local school. Inclusion means that everybody gets to be part of our greater community to whatever extent they want.

My daughter’s school district claims to understand this concept. They say that they are incorporating practices of inclusion in their greater plan.

No. They aren’t.

Katie has spent the last several years in what is locally called a cluster program. (I was tempted to use quotes there, but then I’d have to stop and make air quotes at myself, and that probably wouldn’t be good.) The cluster program could also be called a special ed room, or a self contained classroom.

Our school district has somewhere around thirty elementary schools. They have elementary “cluster sites” at three of them. (See, I shouldn’t have done the quotes, now I’m gesturing to myself in front of my computer. Add that to the muttering I’ve been doing lately, and someone is bound to take notice.)

So, despite the fact that we live in a neighborhood with lots of other little kids, and that there is an elementary school two blocks away, I get up at a quarter to six every morning, so that I can get my girl onto a school bus before seven. The bus will go on an hour long route and end up at a “cluster site” (yep, there I go again. Gotta quit that.) that is about two miles away.

About an hour later, I can look out my window and see all of the local children walking down my sidewalk to the elementary school that’s a stone’s throw from my house.

I admit that this isn’t as simple as getting the green light from the school. “Okay, Katie can go to school over here now.” She does have severe disabilities. It isn’t realistic to expect her to sit through fifth grade math, or English, or science. She needs therapies. She needs special equipment. She needs a teacher that can give her individual attention…

Wait. Why can’t she get those things at our local school?

Ah, yes. Money. If the school (ware)houses all the kids with special needs in one place, they only need one room. One teacher. One set of special equipment. One set of specialists.

At this point, Katie has become part of her current school’s community, and it would be a huge jolt to her if we changed the program. It will be changing, though. Because next year, she’ll start middle school. And, while this school district has been bussing her to one edge of the city for her elementary education, they now plan to bus her to another edge of the city for her middle school education. This means that, not only does she not get inclusion into her local neighborhood, next she wont even have the inclusion of the community of children who she has gone to school with for the last five and a half years. Except, of course, those who have also been stuffed into the cluster room.

I have spoken to the school board about this. They nodded politely (well, they weren’t all polite) and basically said they can do whatever they want.

I am honestly tempted to walk away. People who know me well know how extreme that is – I seem to have some sort of biological condition that prevents me from giving up even when it’s clearly the end game. But I am finding myself perusing housing listings in other districts, because right now I am so disgusted with this one.

But, that isn’t serving my community. Inclusion is good for everyone, not just people with disabilities. Unfortunately, an awful lot of people can’t seem to understand that fact.

You can read more about the Sioux Falls Schools Disctrict’s plans at .

A random story

Over the years, I have met hundreds of amazing people, simply by being Katie’s mom. This is one of many great stories I’ve been told.

When Katie was a toddler, I took her swimming at he local community center. A mom was there with her adult son. He was able to walk and talk, but an intellectual disability had been a significant factor in his life.

The mom told me that Jim was her second child. He had an older sister named Elizabeth. Elizabeth was only a year older than Jim, and a grade ahead of him in school.

One day years ago, their high school was having an assembly in the gym. This was Elizabeth’s sophomore year, and she was just starting to feel like she fit in. There were kids already on the bleachers who called her to come sit by them. She found her place, and waited for the assembly to get going.

Then she saw her little brother, sitting on the lowest step of the bleachers. This was his first year of high school, and it was hard for him to grasp new places and routines quickly. He hadn’t made any friends yet.

Elizabeth glanced at the group that had welcomed her in. These were the cool kids – the ones that would be cheerleaders, basketball stars, homecoming royalty.

She looked back down at her brother. Elizabeth knew, she knew, that if she aligned herself with him, she would never be accepted back into this group, back into this pack of kids that would rule the school.

“Excuse me.” Elizabeth said as she grabbed her jacket and stood. She could feel their eyes on her back as she made her way down the bleachers. She held her head up.

Elizabeth settled in next to Jim, and he looked over at her. A fabulous smile broke the clouds around his head.

The assembly was boring, as most are, and went until the school day was over.

The next day was amazing. But it was amazing in a very unusual way: nothing changed. Noone said, ‘Hey Lizzie! This isn’t the resource room!’. Noone stuck their nose in the air as she went by, or threw a cold shoulder or condescending glare at her.

Nothing changed.

Sometimes we make assumptions about people. A lot of the time we’re right- that’s why assumptions are formed in the first place. But sometimes we let our perceptions of what others think act as a barrier to being true to ourselves. And sometimes, when we overcome our barriers, we find they really weren’t that big.

So. Sweet story. What does it have to do with Katie, or me? Not much, but I liked it. And I do think that it had an impact on me – after all, I still remember it many years later. I think that it was a bit of a boost for me during a time when all I wanted to do was stay home with my screaming baby and not deal with all those people glaring at me. People who wanted me to control my kid. People who would ostracize us, or turn a cold shoulder.

Those people were as much a creation of my perception as anything. I have gotten braver about taking my child out in public. Granted, she doesn’t scream all that much now. But if she does, I don’t stress too much about it. I am much, much more likely to have people approach us in a gentle, almost reverent fashion, wanting to learn more about her.

How we Halloween

Katie was a cheerleader. Anna changed her mind at the last second, transforming herself from a monkey into a ballerina. She is a ballerina at least five days a week, so it wasn’t too tough for her to make that swap.

My husband was busy with work, so it was just me and the girls. Anna is four, and this was the first year she was really excited about trick or treating. Katie, I think, can take it or leave it.

We started down the block, and got into a rhythm pretty quickly. Anna got over her stage fright after the first or second piece of candy. Once she had mastered the rhythm (ding dong, trick or treat!, thank you!), she was happy to to set the pace.

Katie had her own rhythm, in counterpoint to her sister. Roll up as close as possible to be seen from the door, wait for her sister to do her trick or treat routine, and wait. Katie can’t actually say, ‘trick or treat’, but she can smile and be adorable.

The treaters were suitably impressed with my little ballerina. After taking care of her treat needs, they would usually glance out and spot her sister. Most of them would give Anna a couple more pieces of candy, with instructions to give them to her sister. Three people brought the candy out to her themselves. There were also a couple who weren’t able to see her at all.

Over the last few years, I have become a fan of ‘trunk or treat’ events. I’m sure they have lots of redeeming values, but I only care about one. They are held in PARKING LOTS. Parking lots are awesome for a girl on wheels.