Unringing the Bell

What the Heck Are We Doing??

Now to get back to that little subject of school. We have chosen to retain Georgia in her general ed public school pre-k next year. It was originally the last thing I thought I would consider. For several reasons, I originally thought I wanted Georgia to move on with her same-aged peers. I thought she'd get bored, she's already five, I think she needs more than two hours and forty minutes of school a day, and quite frankly, I need her to be doing something more than two hours and forty minutes of school a day.

I hope that doesn't sound harsh, but the fact of the matter is we've been sort of driving each other crazy with these long afternoons. (She gave up napping about a year ago.) She also just REALLY REALLY thrives in structure. Well...to an extent.

Anyhow, we weren't even considering it at first even though it was the only of the three options (gen ed k, self-contained K with inclusion "opportunities," and repeating pre-k) that anyone around the IEP team table felt strongly about. I visited all the options in person and in my mind over and over. Ultimately, I know that in terms of the academics Georgia would fit right in in the gen ed K. Right now, that is not as big a struggle for her. She definitely has things to work on in that arena, but I think she can keep up.

However, Georgia has had a tough year in terms of her anxiety which directly effects her behavior. Though we have been working with various specialists to get the anxiety under control, it has really put a damper on her social progress. Also, this year marked Georgia's third school in two and a half years. Her forth in three, if you count the pirvate little church school where this all began. She has had virtually no consistency in her schooling life whatsoever. And believe me when I say that while I think for the most part she has done wonderfully with the transitions, I DO think it's taken it's toll on all of us.

Our goal is to have Georgia in the general ed Kindergarten. I could have pushed her there this year and it might have gone ok. However, it might have gone horribly sour. I don't want to send the message that we made the decision we made out of fear or pessimism. I think we've made the decision we made out of knowing Georgia and knowing what might set her out on a good and healthy (especially for her mental health) path towards being in the general ed K next year.

I could get into specifics, but I am feeling pretty good with our decision, so I will leave it at that. It helped that the people with a strong opinion on the matter--her general educator, her aide, and her speech therapist--are the three people who work with, and therefore know Georgia, the most in her schooling life. It also spoke volumes to me that they wanted her to repeat. To essentially STAY with them. Georgia, I don't want to be vague here, has been a tough kid this year. That the teacher wants her to stay in her class, I think, says a lot. I appreciate that. They (and we) want to give Georgia another foundation year. We want her  to experience success because she has not been granted many opportunities yet. Right now she loves school and we are hoping to build on that rather than throw her into a situation where I can easily see her growing to hate school.

I have learned a lot in this process. I fully believe that caring and thoughtful parents make the best decisions for their individual children as best they can with the information they have at the time they have it. It might not always look like what you think you would do, but none of us are privy to the deeply personal and individual lives of each other's children. I remember sort of wondering about other people's school decisions (people with kids who are older than my G) from afar in the past. While I'd always assumed there was more to the story and that they were making the best decision for their children out of the options and situations in front of them, I don't think I truly understood how agonizing it can be until confronted with it myself.

When you are IN it, you really have to suss out what is your ideal theoretical choice and what is your real life good choice for your child. I had the motto "FIrst do no harm," in my head a lot over the last few months. I made my decision based on that motto. I am all for pushing a bird out of its nest, but I think the thing we sometimes forget when referring to that saying is that the mama bird knows the bird is going to fly. I have faith in Georgia, I think she WILL fly when we do push her out of this particular nest, but I am not going to do it until I am sure her wings are strong enough. I don't want to break her wings in the process.

I admit, I feel a *little* sad about her not moving onto K. There is a whole slew of other children around her age that we know (both locally and online) that are going to K next year and in a tiny way it feels like we're being left behind, not through any fault of anyone, but by virture of circumstance.

Ultimately I know that's silly. And I know we are making the right decision. But I'd be lying if I denied those tiny pangs.

Because I DO think G needs more structure in her day, and because I can see where she is lacking socially and with her communication, we are also sending her to a private preschool at the local university. It is a speech and language preschool--run by the same people who run her summer speech camp which was so successful last year and which she will be attending again this summer. They focus a lot, of course, on speech, but they also work on social skills and fine motor. If I had to list where Georgia's strengths are in order I think social skills and fine motor would be along the bottom.

I am excited! Despite the pangs I listed above, I think next year is going to be a great year for Georgia. I am so glad the school system made an exception for us and that they are letting Georgia repeat her pre-k class, I am so glad we got accepted into the private program (though I am not looking forward to the tuition checks we'll be writing!!!!), and I am happy that Georgia will get another year of learning through play. (Because holy smokes, it ain't your mama's kindergarten anymore, baby! That stuff is serious!)

Georgia is going to forgo extended school year this summer and will also not get therapies. She quaified, but we opted out because she sees a private OT every week and because she will be in speech camp. In addition, she is going to go to a school-related camp the rest of the week and we might be signing her up for an oral motor clinic at Kennedy Krieger. She is going to be one busy gal, but thankfully, she looks forward to these things. While I generally subscribe to the "Kathy Snow school" about a lot of things, I am generally a cherry-picker and find that some things work and some things don't. And at different times it's different things.

Right now, therapies are very much needed, very much helping, and Georgia looks forward to them. To be honest, I wish we'd had the money to do the private OT sooner. Or rather, I wish we'd had a crystal ball to be able to see that the OT would have helped a lot had we started much sooner, in which case we would have come up with the money!!

Anyhow, I think I am verging on "I'll put that in another post" territory. There is so much to say about my little gal. She's complex, that one!

So anyhow, now I haven't left anyone hanging. If anyone wants to hear more about how we came to our conclusions for school, please feel free to ask. I don't mind talking about it if it's helpful.

Question

Hey, dudes. 'S up?

Uuuuuummmmm. Yeah.

So.

I really appreciate the comments on my last blog post. It's kind of funny. The next day I went to the store and I half expected to see Holly and her brother there. I kind of thought if I did I might say something to them, but alas, they weren't. I probably wouldn't have said anything all that much anyway. I don't think. Maybe? Who knows.

Anyhoo. I have a question for you folks with children. I am particularly interested in hearing from people who have kids with DS, but I definitely would love to hear from any and every parent who will take the time to comment. I would like to know, given a 100 percent scale, how much of the day...or maybe the week, let's say, would you estimate that your child is agitated? How old is your child? When did the agitation start? Was your child ONCE agitated fairly often, but not anymore? If so, when did it stop?

Okay, I guess I have a lot of questions.

Clearly, if you've been reading me for any length of time you know I can be neurotic, but I just have to know. Is my child the only one who doesn't fit that always happy DS mold? (I know most kids with DS don't, they all certainly have a range of emotions and moods like anybody else, but even the experts, people like Dr. Capone at the Kennedy Krieger Institute who is one of our personal doctors and whom I respect deeply, will tell you there is a generally happy demeanor emenating from our kids with DS. I find the whole thing weird and enthralling. And I can't relate. At all.)

Sometimes I get a kick out her moods, but sometimes (okay, a lot of the time), it can be downright painful. It's frustrating and nervewracking and annoying and sad the amount of time Georgia spends just plain, flat out, pissed off.

She wasn't always that way. I'd say it started around two and a half. Is this just normal? Is my kid just one of the kids who doesn't fit into the sterotype in this regard? I know she gets really frustrated with issues surrounding communication. But for many many months Alex and I have asked each other "Is this it? Is this just how she's going to be? Is this her personality?" She really was a pretty danged happy baby. I mean, she wasn't one of those toothy-grinned, apple-cheeked droolers, she was always a tad serious, but she used to at least relax. And while she was generally serious, she could be funny as all get out.

Don't get me wrong, she can be wicked sweet and funny now, too. She can be engaging and charming and hilarious. But she spends a lot of time wound up so tight. She is very rarely relaxed. At times, I almost feel I can see the steam rising up out of her little body. I swear, if she weren't so small I would think she was 15 the way she reacts to me. And there are times--look, I feel sheepish admitting this because I don't want to be one of those people--but there are times...kind of a lot of them...when I think, "This kid just does not like me."

There, I said it.

And I so like her.

We have a bit of an unrequited love affair.

Oh, occasionally she will just love on me, wrap her arms and legs around me, and we'll laugh together. She'll appease me with a kiss (or a head leaned in for a kiss) when I ask her for one. Every now and again, and it's the light of my own little existence when it happens, she will be genuinely happy to see me and she lunge for me saying "Mommy!"

But she doesn't give it out freely.

She gets so annoyed with me. Though, I have to admit, she comes by her impatience honestly. (Dad, you're reading, right? I was never the most...easy-going kid, was I?)

I think I was prone to anxiousness myself, I was voted "Most Argumentative" in 8th grade, and to this day I am embarrisingly earnest and serious and sensitive.

Georgia is her mother's daughter, and a Daddy's girl.

But all joking aside, sometimes it really worries me. In some ways I like that she doesn't just give it away freely, it seems somehow more honest (although perhaps I am just trying to put a positive spin on it). It's a rare gift if she acknowledges you, let alone gives you a hug.

The funny thing is that she has a real thing for young pretty women. I think it's because all her teachers are young. But it's kind of humorous to me.

But this constant wound up agitation. Will she ever lighten up? For our sakes, yes, but also for her own? Will she ever be able to just kick back? Her teachers tell me they don't see the anxiety that we have described in the classroom, so that is good, but her main teacher also qualified it by saying, "But I can definitely see how she might be anxious in certain situations."

She then went on to describe how Georgia is routine-oriented (we know), and that once the next step or activity is divulged she has a hard time finishing up the original activity. Say, if they are doing a craft (admittedly one of her least favorite things to do) and she knows snack time is next (one of her favorite things) and they need to wash hands before getting her bag and going to the table, she has a hard time finishing the project. She wants to clean it up quick, dump the crayons or what have you back in their containers and GET THIS SHOW ON THE ROAD.

I use that scenario, but it's not always about crafts (which she hates) and snack (which she loves). It's any first/then scenario. Maybe not always, but often.

And she never just relaxes at home. She has her techniques for centering herself (music, videos, dangling things [have I not mentioned she's a stimmer?]), but she rarely just let's out a sigh and sits back. Occasionally. I mean, she WILL sit down with some books, or come give me a big hug, but more often than not the hugs turn into requests for dancing or bouncing and the books...they too eventually get shoved aside.

I am losing my train of thought. It's really all hard to explain. In the trying to explain, maybe it even sounds normal and I just sound like a whackaloon. (Here's hopin'?)

But there's something to be said for gut feelings, I think. And it's hard for me to forget about the teenager at a dance for people with DS I went to last year who even at 16 or so couldn't bring herself to enter the gymnasium because it was dark and loud and there were so many people there. She sat outside, close by her mother. Her friends came out to see her and bring her sodas and cupcakes, but they couldn't persuade her to go in and dance. Even after the dj turned down the music--a special request just for her.

I don't want life to be so....hard for Georgia. I guess I should say any MORE hard for her.

Honestly, DS alone is not what tends to make our day-to-day life difficult.

But tell me about your kids. Particularly your preschool-aged ones, or tell me about when they were that age, or if they are anything like Georgia is now at an earlier age. I feel hungry for more information about other kids. Have been feeling this way for awhile. I try not to compare too much, but it certainly makes you feel less lonely when you know if other people are experiencing the same things.

And if you are not, maybe I need to examine it a little more. I feel compelled to say, this is not the first we've...looked into it. I've had some conversations with Dr. C about it, with our behavior therapists, with friends, and other parents. We've decided to take a wait-and-see approach to all things behavior-related at the moment because these years are so full with change and development.

But I just want to throw it out there on the table. See what your experiences are.

Thanks!

The Future?

Something so seemingly personally profound and significant just happened while I was standing in line at the grocery store that when I came home I asked Alex if he would put the groceries away so I could go directly to my room and write about it.

So here I am.

With the impending storm, the store was crowded and I got on line reminding myself that I had no place I had to be. I could afford to be patient. When the woman in front of me turned around, I saw that she had Down syndrome. She was shorter than me, wore an Obama baseball cap and a Ravens jacket, baggy jeans, and dingy sneakers, all of which were decidedly in need of a wash. Most of her fingernails, I noticed when she brought them up to scratch an itch on her face, were yellow and thick, eaten away with fungus. I remember noting to myself that I needed to keep on top of my own daughter’s fingernails. 

It was hard to tell how old she was, I didn’t even venture a guess—something I consciously do around people with Down syndrome because I am seldom correct—but she looked to be easily in her thirties, though could easily have been much older. She had that old-young quality that I find many adults with Down syndrome have. She was behind  the cart, directly in front of me in line, a tall man with white hair and beard wearing overalls was in front of it near the belt.

The cart was piled high with paper products, diet cola, and root and leafy vegetables. There was a large package of Poise sanitary cups which I note because I remember thinking about what an intimate product they were as the man, clearly a working sort, picked them up and placed them on the counter with his big hand. That’s when he said, “Oh! I meant to get pretzels,” to the woman behind the cart. He instructed her to come around to the front of the cart near the conveyor belt and start putting things on the belt if the line started moving (there seemed to be a hold up in front of them).

“I’ll be right back, Holly. I am just going to get pretzels,” he must have assured her two or three times.

She didn’t seem too concerned. That’s when I realized maybe he was assuring me? Maybe he was worried that I would sigh, or roll my eyes. Maybe he worried I might be thinking something like “You’re going to leave her in charge?” I smiled trying to assure him. I was in no rush.

Oddly, I remember thinking something like “I am supposed to be in this line.” I remember thinking, the perhaps incongruous thought, “If anyone says anything rude to this woman, I am going to freak out on them.” I think I read so much about other people’s encounters with people who have DS in the community that I am, myself, poised. I want to learn some great deep secret, or be prepared to fight injustice should it arise. I mentally DARED someone to say the word “retard.”

 I should note that around me people were sighing left and right about the turtle’s pace of the lines. I was bound and determined to keep positive and patient myself, but it didn’t seem that most others were on the same page.

I needn’t have worried. Our line wasn’t moving because of something going on with the woman in front of Holly. If anyone was going to complain about how slow it was going it would not be her fault. (Writing this, I wonder what this supposition says about me and my expectations. I am not unaware of that.) As slow as the line was going, I was bound and determined to stay in it. I am going to admit something that probably sounds ridiculous to most, but I know my other DS moms, most of them anyway, can relate. I needed to be near this woman. I wanted to be. I get a little surge of excitement when I see people with Down syndrome out in the community, perhaps because I so rarely do, and while it has spiked and abated at various times since I became a member of “the club,” tonight, I was ready to observe. What is life like for this woman? I know she has poor general hygiene. That’s a bummer. But the man with her seems so concerned and nice. Speaking of which, who IS that man? etc etc etc….my mind raced.

If I thought it was hard to determine Holly’s age, it was equally difficult to determine the man’s. I thought it could be her father, then perhaps someone who was hired to be there with her. With his white beard and big hands, the way he spoke to her, though, he seemed related.

I settled on father. Before he came back with two large bags of Snyder’s pretzels, as he was walking towards us, Holly turned and looked at me again. It almost felt like she was staring into my very soul. I know that sounds a bit much, and I am hardly the sort who believes people with Down syndrome are angels. But there you go. It looked like you might imagine it would look if someone were trying to look deep into your soul. In hindsight, I think she was just focusing her eyes, but in the moment, it felt intense and I didn’t want to look away. She reached out her hand, closer to me than you might think one would for the action she was about to make, and waved at me. No words, but a small, the slightest really, smile, and her small hand with its infected fingernails shook quickly back and forth in my direction. I smiled at her. In a small voice, I said “Hi.”

The man came up to us saying, “This ought to do, huh, Holly? I thought we’d get hungry while we’re waiting for supper to get on the table.”

He smiled at me. He seemed intent on talking to me. I don’t remember the exact discourse of our conversation, but we talked about waiting to eat, waiting in lines, waiting for the storm. He told me when he was younger he used to sink all his money into his car, but at some point he stopped sinking it into the car and just sunk it into the car stereo. He had to make the ride from Charles Village to Silver Spring everyday and he said his friends would joke that at 5 o’clock they knew where to find him, “On the highway, with 30,000 of my closest friends.” I wondered what work he once did. Somewhere in the course of the conversation I had gleaned that he no longer did it, whatever it was.

Holly’s jacket brushed against a display of gift cards knocking several of them down and when she didn’t notice, the man told her she ought to pick them up so no one stepped on them. She did and as she was bending down she pointed at a display of Diet Coke.

“Diet Coke,” she said, smiling at the man.

“Yeah. Diet Coke,” he said. “Everywhere we go, you always spot the Diet Coke.”

She indicated that she might want it, but he reminded her they had diet cola in the cart and that it was much cheaper in the cans. He ribbed her saying “You should have been called Caffeine!”

When it was finally their turn at the cashier, the man knew the woman behind the counter.

“Hi, Carole,” he said. (I know she spelled it with an ‘e’ because it was on her name tag.) “Haven’t seen you in awhile!”

Carole agreed. It had been ages.

They got to chatting. The man mentioned that they’d been spending a lot of time in the hospital over the last several months. I noted the prescription bags in the front of the shopping cart.

“Oh, really, for who?” Carole asked.

“Well, actually, all of us. My mom’s been in and out for the last four months. My sister…,” he said, the sentence trailing off, as he nodded his head in Holly’s direction.

His sister? Now that you mention it, I thought, he wasn’t nearly old enough to be her father.

His sister? I found myself having to let that sink in. So he wasn’t Alex in this fantasy scenario I was creating about our possible future selves?

 You see, I’d created this whole world. I’d even wondered if Holly’s mother (or, as the case may be,*I*) was home or if she (I) had maybe left them…or died. But this man wasn’t Alex. He was Rainer!

The man went on chatting with Carole. “I was in the hospital myself back in April.”

“Oh, really?” Carole asked, concerned.

“Yeah, I fell off the roof of the house!” the man said, mocking himself more than bragging. “25 feet! I went up there to clear off some branches that fell in a storm, and next thing I know I’m lying on my back on the ground! I landed right on my neck.”

Carole looked ready to ask a question when the man said, “I didn’t break a thing”

Carole looked at him incredulous.

“I just remember lying there and thinking, ‘How did I get here?’ I must have been laying there for twenty minutes when I finalized realized I had my cell phone in my pocket and I called 911. They did a bunch of tests, but didn’t find anything. Learned my lesson about always carrying my cell phone, though!”

Carole looked at him with all the surprise and compassion a checkout person is supposed to use when talking with a customer. “Wow.” And “My goodness!”

 I sound cynical, but she did seem genuinely concerned.

“How didn’t you break anything?” she marveled.

I was hanging onto every bit of this conversation like they were playing out the scenes of my own son’s potential future life. Holly, for her part, was helping bag groceries.

The man said, “Well. I don’t know how. But I know why.”

Carole looked at him with interest, “Oh yeah?” she asked, “Why’s that?”

The man sort of glanced over at Holly, a gesture meant to be discrete from his sister, and said, “I’ve got people who need me.”

That’s when I almost started crying. At my imagined son all grown up. At his love and sense of duty for his sister and, I realized when he stepped back and I saw the frail woman sitting at the bench at the end of the aisle, long white hair draped down on both sides of her face, a bright pink jacket on, his mother—me.

In this fantasy version of my potential future, I was the frail woman sitting on the bench, Holly, my “daughter,” came and sat next to me while her brother paid.

When Holly and her mother stood to leave, I noted how her mother hunched and stood about as tall as Holly. The two of them pushed the cart out together as their son/brother said goodbye to Carole and I, and ushered the girls out to the parking lot.

“Hi,” Carole said to me, taking my store card from my outstretched hand.

 “Hi.” I smiled at her.

 She handed me my card.

 “Good man,” she said.

“Yes,” I said.

Carole swiped my bottles of kefir over the scanner, “Good, good man.”

When I walked out to the parking lot after I’d given Carole my money and bid her goodbye, Holly, her brother, and her mom, were still winding their way to their car. I was tempted to keep following them, although of course I wouldn’t. I was tempted to drive past them when I was leaving, roll down my window and say to the man, “I didn’t catch your name. You are a good, good man.”

 I was tempted to ask him things like “What’s it like? What’s it like to be her brother? To be her son? Can we talk? Let me ask you questions. Let me ask Holly. Let me ask your mom. What made her keep your sister at a time when most people were not keeping their children with Down syndrome? What made her strong enough to know? Is it okay with you, this life? That you clearly have people relying on you? That one of them is your sister? Is she happy? Is she happy? Are you happy? And your mom? And your sister? Where’s your father?”

So many questions that weren’t even really words yet in my mind. Some of them I thought about on the way home as I wound my way home through our little village.

I know it’s a little funny that I even pretend those people are us. Sure Holly and Georgia both have Down syndrome, but their lives are no more OUR lives than my life is Carole's, or anyone else’s in the supermarket. Early intervention and the changing attitudes of people with Down syndrome aside, we are different people, cut from different cloths, living in a different time, with different beliefs and ideas and experiences…I could go on and on why their life is not a prescription for ours.

But driving away from the store it felt profound to ponder what it might be like one day. Georgia and her brother grocery shopping together before a storm, him speaking gently to her and handling her delicate matters. Me, frail and old. And what of Alex?

For what it’s worth, I hope it doesn’t happen like that. Nothing against that family and how it’s working out for them (and it DOES seem to be working), but I hope to have a little more vim and vigor in my old age, I hope Georgia is more independent, and I hope Rainer is not tied to us by bonds of blood and honor. I hope Alex is in the picture, too!

But it felt profound on this Monday evening. It felt profound and beautiful and scary and wonderous. And I wanted to share.

Thoughts

We went to a birthday party for a little girl we know this weekend. Georgia did better than she had been doing around strangers--adults, particularly. She has been, generally, better. Still excruciatingly...shy? I guess.

I don't really know what to call it. Anxiety seems like such a loaded word, but Georgia, let's face it, is a loaded gal.

To cope, Georgia spent the majority of the party in a back bedroom. Sometimes she was alone, though thankfully the kids were periodically playing in there. She's fine with the kids. She doesn't like the adults. She kept closing the door. Eventually, after we more or less forced her to join the kids at the table, with the help of food, she came out to the living room to join the rest of us. Ultimately she ended up sitting on the couch in the same room with everyone else next to her father.

She's so quiet. Beyond the typical. I mean, I know she doesn't always TALK per se, but she's usually more...animated. Lively. She was somewhat lively when the other kids engaged her. But really, she was more or less left in the dust. Even by the other little girl who has DS. Granted, that little girl is a year and a half older than Georgia, but social fear she has not!

The not talking and the isolating herself are big concerns of mine. I want her to shine. I want people to be able to see the bright shining star that she is. I only hope she doesn't dim her own light before they can see it.