Julianna (a 7QT post)

Picnic, playground, Pinnacles 097___1___

The decision was made at the end of last week: Julianna will remain in public schools. I would like to say we made it, but the truth is that the Catholic school decided they simply couldn’t serve her. I was relieved, because for quite some time I’ve been moving toward the conclusion that she is where she should be, and I was dreading having to make the decision ourselves. Christian, however, was not so sanguine.

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As much as anything I think our disappointment stems from the lack that the Catholic school kids suffer by not having her in their midst. Ugh, I sound like one of those insufferable moms who think their kid’s very existence enriches the universe around them, right? Well, I can only plead guilty, but I do have a reason.

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I’ve said before how not-diverse my childhood was, and how difficult that made it for me to translate lessons of equality before God into action. My mom says I have a tendency toward “scrupulosity.” In this case, that means I’ve spent my entire life worrying about whether I’m treating people the same regardless of skin color–or, I discovered later, disability. Knowing something in theory is not the same as having the chance to put it into practice when the lessons are being formed. For this reason I say that kids need to be around my daughter at least as much as she needs to be around them. Other kids need that interaction.

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Our local Catholic school isn’t quite as homogenous as the one I grew up in, but it’s close enough. And last fall, we had a rather disheartening experience at the cub scout family campout, which is entirely Catholic kids. Exhibit A: during Mass out on the lawn, Julianna was reciting prayers loudly and not clearly, as she always does. She got several of those “looks” from the kids. You know, the “you are so weird, what is wrong with you?” looks. Afterward, there were a few little girls running around hand in hand. They were so cute, and Julianna went running over to join them. They, too, gave her The Look and gave her the cold shoulder.

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Understand that nothing like that has ever happened around the public school kids. The only explanation that makes any sense to me is exposure to diversity, or lack thereof.

Take a bow, girly girl

Take a bow, girly girl

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I read something recently that said that although people with Down syndrome have a low intelligence quotient (Julianna’s IQ was measured at 60), they have an emotional quotient that’s much, much higher. That rings true; Julianna is enormously empathetic, sensitive to mood, and seems to be able to pick out the person in the room who most needs loving. As a society we are so focused on intelligence as the primary value, we’ve failed to recognize the contribution that a high emotional quotient has to offer.

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Although Julianna is reading at “level 2.” Level 4 is considered end of kindergarten. Not too shabby, methinks.

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Yesterday her school had a Mothers Tea. It was a concert followed by cookies and fruit punch. The kids were “warming up” with the music teacher when I arrived and sat down. I was just beyond the music teacher, and Julianna was so fixed on her, she didn’t see me at first. But when she did…well, those of you who have met Julianna know how she reacts to delight. Christian says her entire face expands to make room for the size of that smile. “BAH-EE!” she screamed, drowning out the other sixty kindergarteners. So stinking cute. They were doing songs about mothers, and every time they said the word “mom” during the performance, she pointed with her entire arm at me.

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I will not, however, pretend that she’s an angel. She is not. There is way too much brother-torment and button-pushing and deliberate obtuseness in my girl to justify that label. But I’m shredding the idea of seven quick takes now, and I need to mow the lawn. :) Have a great weekend!

7 quick takes sm1 7 Quick Takes Friday (vol. 216)

Published in: on May 10, 2013 at 5:36 am  Comments (16)  
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Motherhood, Mostly (a 7QT post)

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ThisLittleLight_Beatitudes_CoverI’ve been so busy lately, I just now realized I never shared this! We are running a giveaway of This Little Light of Mine on Goodreads. Six copies available, to be “drawn” by Goodreads on May 1st. Click on over and sign up!

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I think every woman–probably everyone–is well aware that the reproductive cycle affects a woman’s Crank-O-Meter. But I always thought it was Phase III, post-ovulation infertility, i.e. PMS, that was the cranky time. But in a recent  column in CCL’s Family Foundations, Dr. Gregory Popcak mentioned that it’s often the transition from Phase I to Phase II–i.e., the time when you’re entering fertility–that you get the most moody. It was like a light went on in my head, because my fuse is wwwwaaaayyy shorter with my kids during that time. (Three guesses why I’m reflecting on THAT this week.)

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Yes, TMI, I know. But you know how the Europeans are always telling us we’re Puritans at heart? It’s like we want sex and sexuality splashed front and center all over everything–as long as we keep it fun and un-threatening (read that shallow, pointless, and without significance beyond the bedroom). Ladies, if our bodies are causing us to have difficulty with patience at a certain point in the cycle, I think it’s important to acknowledge that and offer each other encouragement in overcoming it.

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Michael is why her glasses are falling off her face in this picture. He had them stretched out.

Michael is why her glasses are falling off her face in this picture. He had them stretched out.

To return to the topic of #2. Julianna’s glasses, in combination with Julianna’s cognitive weakness, are making me IN.SANE this week. The worst part is I can’t yell at anyone about it, because the at-fault person isn’t old enough to “get it.” Yes, you guessed it: Michael. Michael likes to go up to Julianna and rip her glasses off her face, then twist, squeeze, throw and/or hide them. It happens every single day, usually several times a day. But he’s like a dog; if you expect him to connect words and/or consequence with his action, it has to happen right then, and I don’t discover it until some time later, when I look up from dinner prep or dishes-doing or whatever and see her sans glasses again. And of course, she has no earthly idea where they are.

Thursday morning I’d had enough. I called her over. “Julianna, when Michael takes your glasses, what do you say?”

“Thank you.”

“No. You say Mommy help. Say ‘Mommy help.’”

“Bah-ee heh.”

You can see all his Mayhem in this picture...

All his potential for Mayhem shines through in this picture…

“When Michael takes your glasses, what do you say?”

“Thank you.”

“No. You say Mommy help. Say….Mommy help.” She said it with me.

“When Michael takes your glasses, what do you say?”

“Thank you.”

We tried this ten times in a row. I kid you not. TEN. Can I say that loud enough? TEN!!!! And STILL she didn’t get it!

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This encounter, which I tried with variations (what do you DO when Michael takes your glasses?) all the way to school, with very little success, got me to thinking about that “okay?” thing. Modern parents are always getting lambasted for finishing instructions with “okay,” because they’re asking permission of their children instead of taking charge. I try to avoid that word, but not because it’s a sign of asking my kids’ permission. No parent says “Okay?” because they’re asking their kid’s permission. What “okay?” is doing is requesting acknowledgment. It’s akin to “Do you understand?” or “Do you hear me?” All morning I wanted to tack on the word “okay?” to those exchanges with Julianna, because I wanted her to acknowledge that she understood. And I didn’t do it, because you know what? SHE DOESN’T UNDERSTAND.

(Update: At dinner that night, when I asked her what to do when Michael took her glasses, she got it right! Of course, she still didn’t apply the knowledge the next three times Michael yanked her glasses off her face, but…that’s progress, right?)

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Alex 1st Communion 041Oh yes, in case you don’t follow all the time, our household had its first First Communion last Sunday. And this reminds me of a cute thing I never shared. They have an evening of “centers” to review all the theological and Scriptural concepts several weeks before Easter, but the highlight for the kids is getting to try an unconsecrated host and wine. Alex’s reaction to the host was a tip of the head one direction and the other, raised eyebrows, and this comment: “It kind of tastes like popcorn, only flat and with no flavor.” HA!

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Alex 1st Communion 056And you know you need a Nicholas moment, right? The other day he was trying to tell a little friend (not this one) when Julianna’s birthday was. “It’s Februay–Faybeeway–Febyewrehr–Febeeyayee–what is it again, Mommy?”

7 quick takes sm1 7 Quick Takes Friday (vol. 214)

Published in: on April 26, 2013 at 6:58 am  Comments (9)  
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Adventures In Speech Production (and other kid-ness)

J Kindergarten from BartkoskiSunday morning, exhausted after weeks of sick kids and bad nights, we decided…gasp!…to sleep in and go to late Mass. So 8:45 a.m found me on the Nordic Track, attempting to multi-task the time as brain-quiet time. I knew better, of course. Julianna stepped lightly into the room in her white-and-purple dress, her boots on the wrong feet, carrying a book, and held it out to me. “Wee boh?”

“Book,” I corrected.

“Bo-koh.”

“When I’m finished exercising. But it’s going to be half an hour.”

She stood and watched me for a minute, then let out a long stream of jibberish I couldn’t follow. But I caught the words “wa bee bah,” which is watch baby signing times, which is code for “I want a video.” The rest, however, completely escaped me.

She kept repeating that “rest,” however, for the next six hours. Clearly she was trying to communicate something, but “Pee-poh Jah-yu-yigh” did not ring any bells. “People?” I kept asking, and she’d shake her head.

In the afternoon Alex and I went out for a while, and when we came home, among the madhouse that met me at the door was Julianna carrying this:

Christian gave me a wry grin. “That’s what she wants for a movie today,” he said, and Julianna said happily, “Pee-poh Jah-yu-yigh!”

Purple Jazzercise.

(Disclaimer 1: this video was a gift.

Disclaimer 2: there is nothing “burlesque” about this DVD except their annoying tendency to say that every body part is “sexy.” Last week while I was snowed in, the kids alternately watched and danced with me to this and my other workout DVD.)

This reminds me of the last time Julianna desperately wanted to communicate something to me. Another stream of unintelligibility she kept repeating for hours as I wracked my brain and came up with nothing. “Yi-yi wah-oh.” Finally she signed “pool,” and I caught it: swimming lessons.

They weren’t sure their IQ tests were quite accurate this year when they did the re-eval, because she can’t talk. Until now, she’s been pretty easy-going and didn’t have a lot of trouble communicating, because her desires were pretty basic. Now, however, she really wants to talk, and does. It’s a good thing, but hoo-boy, it’s a brain stretcher!

Now, on to the “other random kid-ness” I indicated in the title:

Item 1: Apparently from here on out, thunder snow is the norm for mid-Missouri.

Item 2: What with President’s Day, an intestinal virus, and eleven inches of snow, Alex and Nicholas went to school one day last week; Julianna went two. Our street never did get properly cleared, and now we have another several inches dumping on us again…and another snow day.

Item 3: After last week’s lackadaisical attitude toward closures caused havoc on local streets, everyone is gunshy, and the entire city has closed down: busses, schools, universities….doctors’ offices…

Item 4: Which means it is time for Nicholas to wake up crying at 5:30 a.m. after three days of runny nose…because his ear hurts.

You’ve met a character named Murphy, haven’t you?

Published in: on February 26, 2013 at 8:13 am  Comments (2)  
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What I Learned From A Kindergarten SpEd Re-Eval

J birthday 034

Carousel birthday Cake, a la Mommy

About a month ago, Julianna’s school finished her “re-evaluation.” This is required every three years under the IDEA, presumably to ensure that kids who are receiving expensive special ed services still need them.

Julianna entered the mid-kindergarten eval with a diagnosis of “young child with developmental delay,” a dx that does not carry into the elementary/secondary years (for obvious reasons). So, beginning mid-fall and lasting until Christmas or thereabouts, she underwent a battery of assessments for language, behavior, speech, motor, and academic skills. Even an IQ test, about which we were intensely curious. Hearing the number 60 was a bit of a reality check; it’s one thing to recognize that your child is and will always be delayed; it’s another to see it quantified. Somewhere deep inside, you keep hoping your kid will pull out a 69 and almost squeeze into the “normal” range.

In any case, the end result of this re-eval was–wait for it–an IEP meeting in which we went over the report and incorporated the results into a new plan. Ten people in the room, copies for everyone–nauseating amounts of paper, because the god Privacy forbids electronic dissemination. We moved quickly, with many interruptions caused by the three children in the room (one of whom was trying to eat every toy block in sight), so it wasn’t until the formal report came that I sat down to really read and process it in depth.

carousel craft

Apple, straws, peanut butter & animal crackers = a great, edible carousel birthday party craft.

When your child goes off to school, you automatically lose a certain intimacy. No matter what you do, you can never quite pry out of them what their day is like now. Their routines are unremarkable to them, so they don’t see anything to share. You ask “What did you learn in science today?” and you hear: “We didn’t have science.” You know they must have, they just didn’t recognize it as such, but without a beginning point there’s no way to pry the layers back and understand exactly what’s going on in the hours he or she is away from you.

If it’s that hard with a verbal child, imagine the dearth of information when your child doesn’t communicate by speech at all, or at least, only at the most surface level. So this report was really enlightening. It didn’t tell me about the school days or the routines, but every so often a nugget would pop out that I recognized so clearly, I could picture the entire scene:

“It was often unclear whether she was simply repeating the presented words rather than making an attempt to respond to the items.” Check.

“When asked to write numerals in sequence, Julianna wrote the number 1. When asked to write other numbers, she wrote the number 1 again.” Ouch.

“Julianna would sometimes point to several pictures on the page and was reminded that she could only point to one. This test was given over 2 sessions as she would start pointing randomly.” And giggling with a sly Miss Charming look on her face, no doubt.

“Julianna appears to enjoy socializing” (you think?) “and will wave hi and bye to many adults and peers.” Yup.

“She is a risk-taker.” Uh, yeah.

Concurrent with this is the formal discernment by the Catholic school administration as to whether they can realistically serve Julianna there. I am so torn on the subject. I want her in an environment where faith formation is “in the air,” and I want to have one PTA, one fundraiser, one school calendar to deal with.

And yet…she really needs speech intervention every day, and I will have to transport her myself (barring carpools, but you can’t count on that.) The public school has been wonderful–I love all the people. Her speech therapist calls her “chickadee,” and it makes me all warm and gooey inside. Her para and her teacher are particularly wonderful, and all the necessary infrastructure is right there. Her classmates are incredibly sweet to her. It has been a wholly positive experience, and even considering moving her feels disloyal.

It’s a good position to be in, so don’t take these reflections as complaint. But this is a part of the special needs parenting process, so I share it for the benefit of…well, whoever needs it.

I am being paged for a game of Spot-It. Bowing out for the day.

Published in: on February 11, 2013 at 8:52 am  Comments (7)  
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One of THOSE Stories

Sad face

Sad face (Photo credit: Wikipedia)

At eleven p.m. on Sunday night, I was the only one in the house awake. Maybe I was only half awake, but when the screams started from Julianna’s room, I was out of bed and down the hall before she drew her first breath, hoping against hope to get her calmed down before she woke her roommate.

No such luck. I flew past Michael, standing in his crib and wailing, and gathered his big sister into my arms. “Shh, honey, it’s okay,” I said, assuming she’d had a nightmare or heard a firework or a fire engine siren. She didn’t stop screaming, and underneath the noise I heard a rumble from her midsection. I realized instantly what was coming. I scooped her up and ran for the bathroom. And Michael? Michael saw me ignore his wailing and LEAVE THE ROOM. You can imagine the outcry that followed!

We made it–she fought me as I tried to hold her hair back and get her to target the toilet instead of the floor. And all the while, Michael continued screaming. I was standing there thinking, There is NO WAY Christian is sleeping through this. Finally I yelled, “CHRISTIAN! A LITTLE HELP, PLEASE!” And just at that moment I heard his soothing voice and realized he was already in the room with Michael. Michael, who was, if anything, even more upset that the wrong parent had come to comfort him.

I will spare you the details of my half of the job (you can thank me with zucchini bread and book sales, ;) ). I did the worst of the dirty work and then washed my hands and went to trade kids with my husband. At that point, Michael had just calmed down. But he still launched himself into my arms. I laid down with him chest to chest for a few minutes while Christian put Julianna in bed. I do like the feel of baby…oh, well, all right, he’s a toddler now, I have to admit it…against me. His poor heart was pounding. When it calmed down I rolled out of bed and put him back in his crib.

Due to that little drama, Julianna stayed home from school yesterday. And I spent a good portion of the day watching her anxiously and trying to make sure she got hydrated and got a bit of food in her. It took me most of the morning to write yesterday’s epic blog post, and I got very little done all day other than snuggle Julianna and clear out some minor jobs I’ve been procrastinating for lack of opportunity. (Call the dentist. Respond to that program survey.)

She perked up considerably after dinner and some chicken noodle soup, so I’m crossing my fingers for a back-to-school day today, so I can return to normal programming. Which brings me to another point:

I want your help. I want to do a fiction prompt this week for the Write On Edge people, who have asked us to be inspired by two of the most enchanting words I know: gossamer and affinity. But for some reason, I always do better with a third parameter; it seems to pinpoint a structure for the other two. So throw some ideas at me. A concept, a relationship, a place, a scenario–my poor brain is shot after the revolving bugs we’ve been fighting since school started again. I need your help!

Published in: on January 15, 2013 at 7:38 am  Comments (8)  
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When You Are Raising A Daughter With Special Needs (or: Borrowing Trouble)

It must have been the convergence of James Bond with a bedtime call from my sister, announcing the birth of her first baby, a girl. Maybe it was superimposing the image of her baby upon my own baby girl, no longer a baby, upon the image of the Bond girl, once victim of the sex trade and now caught in a supposedly even scarier net.

I don’t know what caused it. All I know is that I laid awake that night for an hour, two, three, tossing and turning, my insides churning.

When you’re raising a girl with special needs–especially one as beautiful as Julianna–certain subjects are bound to be especially worrisome. When Julianna was a baby, we attended the National Down Syndrome Congress convention, and for some reason I landed in a session on sexuality. It was taken for granted that you’d put your chromosomally-gifted child of a certain age on birth control, just for precaution. It was the first time it had occurred to me that what is already a high-stakes area in any family (particularly one with both philosophical and religious objections to manipulating the reproductive system), is even more fraught with terror in my own parenting journey.

The first time, but not the last.

I want Julianna to move out on her own, be independent, make her own decisions. But let’s be frank. The idea of raising my chromosomally gifted daughter’s chromosomally gifted child is enough to make me understand why so many parents keep their kids close under their wing into their twilight years. The fear of Julianna being taken advantage of, or simply having her feelings run away with her, strikes terror deep into my heart. Call me selfish, but I want my kids out of the house; I want the freedom and coupledom that is the heart of the empty nest experience. I have no interest in raising my grandchildren, and particularly not in starting this whole process over again–therapies, IEPs, and high maintenance everything–at the age of fifty or fifty-five.

Of course, there’s only a 50% chance that a child of Julianna’s would have the extra chromosome. That opens up another whole line of thinking. Imagine raising a child who’s bound to discover at some point, probably just about the time she hits adolescent rebellion, that she knows more and can do more than her mother.

This entire line of thinking is called Borrowing Trouble, and it’s beyond nonproductive. I’m well aware of that. It’s not like I live my life in terror over these issues. But it would be beyond foolhardy to take a Scarlett O’Hara approach to this and think, “I’ll think about that some other day.” If there is a safe path through these perilous waters, it comes by laying foundations so solid, so wide and deep, that nothing can shake what sits on top. Foundations are built now: today, tomorrow and the next day, amid lost teeth and learning to write her name. Waiting until Julianna is ten or eleven to be thinking about it isn’t an option.

Published in: on November 12, 2012 at 8:58 am  Comments (14)  
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Julianna Shows Off

When you’re raising a child with a disability, you have a fine line to walk. You can’t set the bar at an unattainable level; it sets you up for disappointment and frustration, and your child for feeling never good enough. But neither can you set it too low, because we all know kids will live down to expectations as well as up.

The best plan is to stay free of expectations altogether, and just watch as things unfold. None of us are perfect at this, of course, but you do get a certain amount of practice when you raise a child who doesn’t walk until 2 1/2 and at 5 still communicates primarily by grunt and sound effect.

And in that case, the achievements pierce you with wonder, but also something else, something sharper, like a fine cheese or a fine wine that feeds both body and soul. A fine point of joy, carving designs on the boundaries of the soul, making room for it to expand.

You already know Julianna can read. I’m told that kids with DS have trouble “generalizing”; in other words, she can recognize the words on the screen or the cards but not in other places. But Christian wrote “orange,” “red” and “green” on a piece of paper and she read them with confidence.

All that to set up a single photo. This is Julianna’s October homework packet. All month she’s been writing single letters, five each: five Ls, five ls, and so on. But this one was different: draw a face on the pumpkin, and write a sentence about it. Julianna asked for help, so I held her hand. But I did not move it for her. I only gave her support and told her what letters to write.

She’s blossoming in kindergarten, and…wow. Just…wow.

Published in: on October 31, 2012 at 6:40 am  Comments (5)  
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She Picked Me

She always picks Daddy–always–so on Wednesday night, when Christian asked Julianna which parent she wanted to take her down to “church school” (religious ed), I rolled my eyes and wondered why he bothered. She didn’t answer at all, and we went about the craziness of clearing dinner and getting kids rounded up for the weekly trip to church.

Somewhere in the middle of the chaos, we realized Julianna was trying to say something. “Go…dyoo…goo…Bah-ee,” she said.

“What did you say?” Christian asked her, but I took a wild stab. “You want Mommy to take you to church school?” (dyoo=church; goo=school, and Bah-ee is, well, me)

“Yeah!” she said, her voice about three octaves higher than usual, and threw her arms open to me with a huge smile.

“You picked ME?” I shouted. I ran to her and scooped her up, and she locked her arms around my neck giggling with that wild abandonment of dignity that renders her beauty angelic. I can’t capture that smile on the camera, but it knocks me out.

At church, I put her on my back and carried her down the stairs as if she was a much younger child, shaking her from side to side to make her giggle again. When it was time to leave her in the room, she came running to cling to me again, not out of anxiety, but just an unselfconscious display of love.

The standard stereotype of a person with Down syndrome is that they are very social, very loving children. That very afternoon, I heard from a fellow parent who picked her up for me when the bus broke down while I was teaching lessons: “She has quite a following at that school,” he said. “She was waving and yelling ‘bye’ to everyone.’”

But my children are all very loving, and very demonstrative about it. This is not about Down syndrome, per se, but about mothers and daughters. As a mother I adore boyhood. (Most of it. I can’t stand the propensity for breakage, but yanno.) But there’s some part of me that craves the love of a girl, and it’s not a gift I get very often. I used to have regular dreams in which Julianna called me “Mommy.” I have yet to hear the word in anything resembling a true form; it’s special, and it’s cute, but “Bah-ee” doesn’t quite have the same ring to it. So this night was pure gift. And I guess that’s all the conclusion I need for this post.

Published in: on October 24, 2012 at 7:12 am  Comments (5)  
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Miss Pooey Goes To Kindergarten

The first Friday of kindergarten, Julianna brought home a progress report. In typical kindergarten fashion, it was a list of attributes the kids need to have to be successful students–following directions, self-control, and so on. There are no grades in kindergarten, only +, √, and -. I got quite a shock when I saw her page filled with “-” and a smattering of √s. Not a + on the page anywhere.

Now, I’m sure you will not be surprised to learn that I have been a straight-A student my whole life, a meticulous rule follower. Alex is the same way. So to see a report like this was quite a shock to my system.

Who was she being measured against? What were they trying to communicate? Was she not living up to the standard of a typically-developing kindergartener (in other words, this was par for the course), or was she not living up to what is reasonable to expect for her? Does it matter? After all, if we want her in a regular classroom, we have to expect her to be held to the higher standard–and that’s what we want, right?

Such are the agonies of a parent of a child with special needs.

I didn’t realize it, but I have always taken kindergarten more seriously than preschool. When we needed to go somewhere, I just pulled Julianna out of preschool. We didn’t know all that much about the daily routine–we weren’t able to have a conversation with her about what she did all day, or what they talked about–but that was okay. Preschool was really about intensive therapy.

Kindergarten is a whole new world. This is where she’s actually supposed to be learning academic concepts. This is where she’s actually interacting with typically-developing peers, laying the foundations for whatever life she’s going to live as an adult. Suddenly, the stakes seem so much higher. Suddenly, it bugs me that I don’t know her classmates and she can’t tell me about them–that I don’t know her routines, and she can’t share them.

I went through this with Alex. Sending your child off to school automatically requires the parent to give up some control. The child doesn’t know what you want to know, and you can’t formulate the questions properly to get them to understand. It was very illuminating to go into Alex’s classroom for an hour one morning, and I’m in the baby stage of trying to work out logistics to visit Julianna’s classroom for a peek.

In the meantime, we’re more or less dependent on her teacher, who has been very good about sending us detailed reports. Many of which make us go, “Whaaaa…?” For instance, in the early weeks, when the para was not working directly with her, she would get up and move somewhere else (totally believe that), poke other kids (probably trying to be cute), and pull hair (uh…what?). She was uncooperative in P.E. and adaptive P.E., where there was less structure. Now, Miss Pooey has always been pretty cooperative with non-parental adults, so this caused us some consternation. But we haven’t yet begun enforcing “if…then” consequences with her, because we don’t have the sense that she “gets” it. If we had gotten a report like that on Alex in kindergarten, there would have been repercussions at home: lost movies, etc. But how do we address this with Julianna?

At last I found my entry point. She likes to watch her signing times and “your baby can read” videos from a distance of one inch from the TV screen. We’ve been yelling at her about it for a long time, but I realized suddenly last week that here is an opportunity for immediate consequences. So now, if she goes up to the TV, she loses the privilege. We’ll see if that makes a difference.

I have many other reflections on the experience of sending Julianna to kindergarten, but that’s plenty for one day. This week, she brought home one extra √, and her teacher said the problem behaviors were easing off. So maybe, twenty-five days in to the elementary years, Julianna’s finding her stride. Go get ‘em, girly-girl.

Published in: on September 18, 2012 at 6:46 am  Comments (4)  
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Julianna’s New Schoolyear

I owe you an update. You might remember that when we first had Julianna’s kindergarten IEP meeting, back in January, the representative from her elementary school, who knew very little about her, recommended that she be in a self-contained classroom for 65% of the day. I was very upset about this on a number of levels–the most basic being: if the assumption is that kids with disabilities are going to be walled off, and they have to fight their way into the general population by proving they don’t really have a disability, then society is setting them up for remaining behind that wall their whole lives.

Christian and I set up an appointment with the school last spring. He took a day off so we wouldn’t be rushed, and we spent over an hour meeting with people at the school expressing our concerns. Julianna’s peers need to be around her at least as much as she needs to be around them, we stressed. And after all, we’re realistic about her academic future. There are a limited number of skills she needs to learn in order to function in the world: reading, writing, some basic math. And she has thirteen years to learn those skills. What she really needs is to learn how to interact with typically-developing peers–because those are the people she’s going to have to interact with as an adult. We want her schooling to prepare her to live in the community, not behind a wall.

The team was cautious in their response to us–cautious, though supportive in theory. I spent most of the summer thinking I was going to spend this school year skirting the fine line between advocate and pain in the school’s @$$. But about three weeks ago, the head of special ed at the school emailed us and said, “Hey, let’s do this IEP meeting now instead of in September.”

Really?

Wow!

So the day before school started, we had an IEP meeting in Julianna’s classroom at her new school, a meeting that included the principal and a representative from the district (I’m not sure if that second one is standard, but I’m pretty sure the principal’s presence is not). It was a good thing on many levels. Our ideas for goals have solidified in the past few months, for one, and this allowed us to formalize those goals. It also served to introduce us to the team, and best of all, the school was on board with a much greater level of inclusion. They reversed the proportions. Now, Julianna is spending the day in her regular classroom, and being pulled out for PT, OT, and speech therapy, plus adaptive PE and a little bit of extra instructional time. It boils down to this: Julianna’s in a regular ed classroom around 70% of the time.

I’m very pleased with the school so far. There are the quirks I don’t care for–like the chocolate Teddy grahams at breakfast that first day, and the fact that the bus didn’t even show up yesterday morning (but that’s a problem with the bus company, not the school)–but the feel of the school, and the vibes from the staff, have been 100% positive. Very supportive, very sweet, very professional and empathetic–in a nutshell, everything you could ask for in the people who are going to be working with your child. And I put this out in the e-universe as a word of hope to those who are viewing the transitions with trepidation.

Published in: on August 21, 2012 at 7:10 am  Comments (11)  
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