7 things you can learn at a kickoff event for Down Syndrome

1. People-first language. When we were new to the world of disability, we thought the whole “person with Down syndrome” structure was cumbersome; it was so much easier to say “Down’s kid.” We thought it was PC nonsense. But I’ve changed my mind, and you should too. Here’s why: you don’t walk around labeling other people by their less-than-”perfect” traits. “Hey, look at that cancer woman.” “This is my selfish kid.” “___is that pimply girl.” To do so implies that said trait is the only thing about that person worthy of note. It reduces them to a single part of who they are. People with a disability are people first, and should be referred to with the full respect granted everyone else in society.

2. The same can be said of families. We are a “Down’s family,” but that’s not all we are. We’re also a musical family, and an Italian-German family, and a foodie family, and an NFP family. (I could go on, but you get the idea.)

3. Disability truly is, as Emily Pearl Kingsley wrote, like landing in Holland instead of Italy–different than you expected, but not bad.

4. There is no standard itinerary for a child with Down syndrome. Just as with typically-developing children, there is a wide range in size and skill level at every stage of the game. Judging by what I saw on Sunday, in fact, it’s even wider than for typically-developing kids.I saw a sixteen-month-old who looked like nine months, and a fifteen-month-old who looked like eighteen months. I saw five-year-olds who were talking way better than Julianna and five-year-olds who were far behind her.

5. Related to that: there is no one-size-fits-all personality. That ought to be obvious to anyone with a reasoning brain, but you’d be amazed how often we all hear our kids referred to as angels who are so happy and sweet all the time. Um. Please don’t patronize us. All children are happy sometimes and royal brats at other times. To try to lump kids with DS (notice that “people-first language?”) into a single category makes everyone nuts, especially the siblings who KNOW their brother/sister is NOT an angel!

6. Never try to guess the age of a person with Down syndrome. I guessed 14. She was 25.

7. Cake pops are yummmmmmmmm. How can I have gone 37 1/2 years never having had cake pops?

(I would love to share more photos but I didn’t ask permission! Ah, well. Can’t have it all.)

Published in: on May 11, 2012 at 7:14 am  Comments (7)  
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Julianna, Unlimited

We made the decision on the spur of the moment. “Julianna, do you want to go to Children’s Liturgy? Like story time at church?”

“Yah!” she said happily, and Alex, beaming with pride, led his two younger siblings out of the church with the rest of the kids.

He returned fifteen minutes later, wearing that long-suffering expression that means little siblings are a pain in the neck. “Did Julianna try to run away?” I whispered.

“Well, a couple times. I had to take her to the bathroom.”

Oh, my. That’s way above and beyond the call of duty for a seven-year-old.

Big surprise: the next week, Alex decided he had outgrown children’s liturgy. So I followed the other two at a distance, giving them the space to go on their own. I sat at the back and kept an eye on Julianna. (Why the 5yo, and not the 3yo? Hm. Keep reading, and thou shalt understand.)

For a while, she did great. But then she saw two boys crawling under the TV cabinet and thought that looked like more fun than stories about Jesus. The leader redirected her, and she settled back down. Two minutes later, she clambered to her feet and began circling the outer rim of the crowd, bopping people on the head: duck…duck…duck…duck…

I intercepted her before she reached “goose.” I made her sit down, and I retreated…but not far. Three minutes later, she looked around, stood up, wiggled her bottom, and plopped down in the lap of some poor little girl two years younger than herself. By the time I got there, the girl had the shell-shocked look of one whose personal space has been summarily violated.

Julianna sat with me for the remainder of Children’s Liturgy.

Aside from the speech delay, the thing that sticks out the most about parenting my daughter with Down syndrome is how difficult it is to teach her limits. She doesn’t “get” it. No, I take that back. She understands that you have to take turns with toys. But when she sees something belonging to an adult, or something left unsupervised, she thinks it’s free for the taking. If she’s thirsty, she’ll go grab someone’s glass, even if it’s a complete stranger. If she sees someone’s purse (oh, how she loves purses…thank the Lord I don’t carry one!), she will stealthily and swiftly empty its contents to the far corners of the room. She chooses random people in any crowd and gives them huge hugs.

Adults deal with it well. They think it’s cute, and sometimes I think she has a sixth sense about who most needs something. How else to account for all those touch points?

But kids are another matter. Kids don’t have the understanding and tolerance their parents do, because those are learned skills, acquired values. I can hardly fault them for regarding with suspicion a person who steals their food, and then the adults yell at them instead of her. She doesn’t exactly fit in anywhere. She’s too old to play with the toddlers, and she can’t keep up with the big kids–those her own age. They tolerate her presence, they take her in stride…but she’s clearly not a part of the group.

It is sad, and unfair, that those I most want her to be able to connect with are the ones least equipped. Yes, it’s great that she creates warm fuzzies with people who can influence her larger future, but that’s a global thing. As far as she’s concerned, her peers are more important.

Understand, I’m not going for a “woe is me” theme. Yesterday I got to meet several self-advocates and teens with Down syndrome, as well as children of all age ranges. I’m still on a high, seeing the community I knew had to be in my area, even if we couldn’t find them for the first several years. But I have to keep it real, too!

Later this week, when I’ve fully processed everything, I might share more about our DS group kickoff event.

Published in: on May 7, 2012 at 7:50 am  Comments (6)  
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When A Non-Cuddler Cuddles…

When a non-cuddler cuddles on a cool, wet spring night, it’s Heaven.

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special needs wordless wednesday

Published in: on May 2, 2012 at 6:25 am  Comments (6)  
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The Magic Chromosome

Today is World Down Syndrome Awareness Day. (3-21. Get it? Three copies…twenty-first chromosome.) Since I wasn’t thinking about that yesterday before I posted my DS thoughts for the week, I thought today I’d reach back into the archives and pick a favorite. I hope you enjoy.

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“There is magic in that extra chromosome, I tell you. Magic.” –Kelle Hampton

I don’t know how she does it.

Everywhere she goes, people see her.

This seems like a stupid thing to say–of course people see my daughter. But in our quest-for-the-perfect-body-without-sacrifice, grab-a-Botox-shot and erase-your-wrinkles world, we don’t really see people with disabilities. Our eyes slide past, because we’re uncomfortable, or because we don’t want to be rude. Even though ignoring is its own form of rudeness. We build walls between Them and Us. (And I do mean “we.” Even now, I sometimes do it, too.)

Julianna is a one-toddler wall demolition girl. Somehow, she walks right through them.

If you don’t have a connection with Down syndrome, this post is one more set of syrup-sweet platitudes. I used to skim, or skip things like this altogether. How can I make you see my girl the way you see the children of every other friend, neighbor or acquaintance?

Aside from the ordinary triumphs of each dearly-bought stepping stone, these are my favorite things about Julianna:

Sympathetic cry-er (you know…as soon as a sibling starts wailing, her face screws up and she follows suit).

Bibliophile extraordinaire. She’s not picky. Given the chance, she’ll choose Child of the Moon or Brown Bear–better yet, a scrapbook–but if they’re not available, she goes for whatever’s close at hand. Batman, Lego instruction manual, hymnal, phone book (I kid you not).

Mommy wannabe. Right down to sitting in front of the computer and making a Really.Big.Mess.

Tomboy and girly girl–a girl after my own heart. Alex can’t stand getting dirty. Julianna? Glories in it. Butt planted in the creek. Mud on the legs. Fingers in the mouth.

Miss America in training. Walking is her favorite activity, best enjoyed when pushing a toy. But if we’re someplace where there are people, but no push toys, she waves. Loudly. What do I mean by that? I mean she tears through the available space, waving and yelling, “AAAAAAAAAA” (translation: “Hi hi hi hi hi hi!”). And everyone smiles.

She’s a button-pusher, “for good or for evil,” as Gandalf would say. If she wants to see you ticked off, she knows just how to do it. In two seconds. But when she wants warm fuzzies, she can do that, too.

One word: Hugs.

Oh…my…goodness. Nothing so heavenly as those plump little arms…squeezing. I’ve waited three years for that sensation. I get goosebumps.

The not picky audience member. She loves music. Any organized sound will do. Jackhammer. The roll call bell at the Capitol. As long as it’s not so close that it deafens, she cheers.

And she does it for “yay,” too. Yay for the food. Yay for Daddy’s homecoming. Yay because everyone else is. She doesn’t need to understand why she’s applauding. She just does. It makes her happy. And at the baseball game, when she claps and yells for five seconds longer than everyone else…people see her. And smile.

But my absolute favorite moment was a school bus moment. One afternoon Miss Holly, the driver, told me that the bus barn was moving Julianna to another driver’s route in the mornings. “Okay,” I said, “great, thanks.”

“Well…” she said, and when I saw the crestfallen look on her face–crestfallen for losing my daughter from her afternoon–my heart went, thump.

Oh, my beautiful angel. What wonders will God work through you?

Published in: on March 21, 2012 at 6:40 am  Comments (4)  

When Is It Okay To Laugh?

“Julianna, stop grunting and use your words.” Christian rested wrists on the table, fork in hand, and gave her a stern look, which our little pixie met with a bright smile. “Be-deeya blelua bwee!”

Alex collapsed into giggles, which made me chuckle. He has such an adorable laugh.

But at the end of the table, “stern” turned to “severe.” “You DO NOT LAUGH AT YOUR SISTER,” Christian scolded.

Alex’s face collapsed, and I leaped in. “Christian, he wasn’t making fun of her.”

“But this is where it starts.”

“But this isn’t like that,” I said. “We laughed at Nicholas, too, when he said cute things learning to talk.”

We’re entering a brave new world. For the first five years of her life, Julianna has been protected. At all times she’s been shielded from all the potential unkindness of the world by the presence of her family, except when she’s at school–a school walled off and dedicated to children like her. But in a few months, that’s all over. She’ll walk unprotected into a huge school full of kids who have never seen anyone like her, and who, for better or for worse, will have imbibed their parents’ attitudes (like the bozo I argued with all day on Facebook a few weeks ago, who refused to accept that the colloquial use of the word “retard” is demeaning and hurtful to those who actually fit the description, and wouldn’t admit that said usage came into being as an insult directly and knowingly comparing someone you don’t like to someone like my daughter).

Every time I fret about this, friends remind me that little ones are very open-minded. But the mental image of kids making fun of my kid is very strong, based on some conglomeration of memories whose images have become indistinct in detail, but whose essential truth I don’t doubt. I don’t doubt that at some point in her childhood, Julianna will be laughed at, made fun of, made to feel less-than because of her extra chromosome.

And yet.

Not all laughter is cruel. Human interactions are complex things. Every week at choir practice, we banter, we poke fun at each other, we laugh together at each other’s weaknesses. To suggest that no one can ever laugh at Julianna is to deprive her of the richness of these loving exchanges. If no one is allowed to laugh when she says something funny, that sets her up as different, as Other, as surely as making fun of her does.

Laughter is appropriate and loving at times, cruel and soul-killing at others. It’s all in the intention. But how do you teach a child the difference? It has never, will never, would never occur to Alex to make fun of Julianna. He adores his sister, even though she does drive him nuts sometimes. He’s grown up so integrated with life with special needs that he doesn’t even get why Daddy reacted as he did. Alex laughed because  was reacting as a family member reacts to someone he loves. Yet he needs to be aware that cruelty exists, and that he has a responsibility both as a human being and as Julianna’s brother to stand up and call people down when it occurs.

I have no idea how to communicate this without making him hypersensitive, which is also contrary to my goal of making a wall-less world for my daughter and those like her. But somehow, we have to try.

Published in: on March 20, 2012 at 8:36 am  Comments (5)  
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Children’s Miracle Network: How Many Adults Does It Take To Entertain My Kids?

special needs wordless wednesday

I was offline all day yesterday, and I haven’t even checked my email yet to see what kind of backup I have to claw out from beneath today…so I am merely going to share a few photos from the Children’s Miracle Network radiothon last Thursday, pictures I can subtitle “how many adults does it take to entertain my kids while I’m on live radio?”

Photo courtesy of Y107's Facebook page

I would say the answer is three, based on piece of evidence #1:

and piece of evidence #2:

(Like the flying foam bricks?)

Published in: on March 7, 2012 at 7:11 am  Comments (3)  
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Happy Birthday, Julianna

I take a break from the chronicles of sick this morning to reflect on our little groundhog…in photos only, since it’s 9:23, I have a sick baby and two stir-crazy kids who have been promised a visit to the playground. Enjoy!

(Feb. 2007)

July 2007, post-heart-surgery at Cardinal Glennon’s PICU

First birthday, Feb. 2008

PT, January 2009

Big sister, March 2009

School supply shopping, August 2010: The future’s so bright, I gotta wear shades

First day of preschool, Feb. 2, 2010

Winter 2011, with baby cousin

Kitchen Aid, June 2011

At the pool, summer 2011

Holding Michael, December 2011

At Michael’s baptism

February 2, 2012: five years old. Happy birthday, sweetie!

special needs wordless wednesday

Published in: on February 2, 2012 at 9:56 am  Comments (12)  
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The Comedienne

There comes a time in every young child’s life when he or she suddenly discovers humor. It’s a gratifying moment for a parent to see the development of a new cognitive level…but it forces you to put up with incomprehensible jokes. Lucky me: my middle two have reached their jokester stage at the same time. They think they are sooooooooo funny. They sit on my bed while I’m nursing Michael and crack themselves up. It’s absolutely adorable, and one of those times when the more-or-less-twinning of the littles shows itself to be alive and well.

Julianna’s the ringleader of this little comic group, and her repertoire of jokes consists of one: She signs “eat” and points to random objects–the baby’s nose, the pillow, the wall, my jeans, the phone–and giggles hysterically.

The first time, I admit, I was slow on the uptake (as I often am with jokes). “You’re gonna eat the phone?” I said blankly, and she fell on the pillow, overcome by mirth. Now that was funny. You poor people out there in the e-verse have no way of comprehending how magical Julianna’s laugh is. I was powerless against it. The first time, anyway.

Nicholas found it so hysterical, he couldn’t even sit up. Instantly, he adopted the joke as his own, wholly forgetting that he can talk.

Although–and I hope you’ll permit me the tangent; my story’s finished anyway–Julianna actually is talking now. She almost always asks for “milk please” and names a whole bunch of colors, as well as counting one to ten. You have to know the context; you wouldn’t just recognize the words automatically–but she is saying them. Yesterday her big speech therapy task was to learn to say “go home.” I’m so proud of my little girl. Except when she’s sitting motionless, pretending she can’t hear me issuing instructions, that is. That girl can use her disability to play stupid when she doesn’t want to do something. We really have to stay on our toes to try not to get manipulated. I know she’s winning some of the battles…like the chores battle. Nicholas is way farther than she is on the “complies with instructions” continuum. I know I have to fight that battle eventually, but I don’t have the time and emotional energy to deal with them simultaneously. Let’s just hope I manage to do it before Michael gets old enough to need the lesson!

(By the way–I’m well aware that today is Wednesday, not Thursday, but I have a special post prepared that requires editorial approval, so I’m doing Motherhood Moment a day early today to make room for it! Stay tuned!)

special needs wordless wednesday

Published in: on January 25, 2012 at 7:40 am  Comments (7)  
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Jonah, Marines, and prenatal diagnosis

Jonah Cast Forth By The Whale, by Gustave Doré.

Image via Wikipedia

Jonah had a really bad attitude. God gave him a job he didn’t want to do– the people of Nineveh weren’t worth his trouble–so he took off in the opposite direction, only to find himself stuck in the belly of a fish. When he proved indigestible (how lucky for him he was spit out near shore!), he did as he was told…but he did it with bad grace. The people of Nineveh repented, and God spared them.

Jonah should have been ecstatic. Who gets that kind of chance to change the world? Instead, he pouted because he thought God had made him look stupid. So he went into the desert to die. When his shade tree died, he threw a little hissy fit, and God said, “How can you get so upset over the death of this little plant, and simultaneously be completely insensitive to the deaths of the people of an entire city?”

This is the story our associate pastor told in the homily yesterday. It reminded me of a column from our diocesan newspaper this week, addressing the story about the Marines who urinated on the bodies of dead Taliban members. I won’t share it all because I don’t have permission, but this part really stopped me in my tracks:

“The irony is so great that we don’t get it. A sterile liquid produced by the kidney and streamed onto a cadaver is morally debated, but the hail of bullets that penetrated those bodies, making inanimate what was only minutes before a breathing, sentient being, does not enter the discourse. War gets reduced to an etiquette that shows more respect for the dead than the living.”

Christian and I spent Saturday morning at a training session to learn how to talk to parents receiving a diagnosis of Down syndrome–part of our local effort to start a hospital visitation program. Right now, the presenter told us, most people are being “surprised in the delivery room.” But very soon the paradigm will shift to almost exclusively prenatal diagnoses, because of the new tests. She reiterated that the Down Syndrome Guild is “pro-information,” not “pro-life,” a position I have always thought was untenable–how can you advocate for people without taking a stand that they are inherently worth taking a stand for?

But as the morning progressed, I began to see the wisdom, or at least the necessity, of such a position. If we come out all guns blazing, laying down a blanket “law” via a prolife message, we will never get the opportunity to witness at all; people will never let us near them, because they will know that we are more about our soapbox than we are about helping them. The fact is that abortion is an option, whether we like it or not. If we hope to be credible witnesses, we have to acknowledge that, and say “Look, we know what you’ve heard about Down’s is scary. Here’s the part the doctors can’t tell you”–without trying to “guilt” people into proper behavior at a time when they’re wounded and bewildered. If we can’t do that, then we can’t be trusted to have a family’s best interest at heart, and we have no right to be doing this work at all.

Sometimes we get so focused on the unborn child that we forget the wounded parents before us. And that’s why I bring it up in connection with Jonah and the dead Taliban. We must respect the dignity of every person–even when they are considering an action we find morally reprehensible–even when the dignity of another life is at stake. The risk to the baby’s life does not negate our responsibility to respect the parent as well.

I don’t have my thoughts all in order on this topic yet; I can’t help feeling there are holes in my logic that I haven’t yet identified. So I’ll be interested to see your thoughts.

Published in: on January 23, 2012 at 6:47 am  Comments (8)  
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Great Expectations

Last Friday was Julianna’s kindergarten IEP meeting. The wisdom of my fellow parents-of-kids-with-special-needs told me I needed backup for it. Several people offered to accompany me. If I’d remembered before the meeting, I probably would have availed myself of the offer, but as I said earlier this week, my life is crazy, and I only remember the essentials…you know, diaper changes, feedings…because the need makes itself obvious. ;)

However, I have a good relationship with all the people who work with Julianna in preschool, soI wasn’t worried. it was generally a positive experience. It takes an hour or so to go through current skills strengths, weaknesses and goal-setting, and then we got to the part where we say “how many minutes in the regular classroom, and how many minutes of special instruction?” At that point, I sensed everyone in the room taking a deep breath, and I thought, Uh-oh.

The problem, her classroom teacher pointed out, is that the people at the new school don’t really know Julianna, don’t really know what she’s capable of. So while we, and specifically she (the teacher), know her to be more than capable of a high level of inclusion, the new team wants to play it cautious. After all, we’d rather over-support her and withdraw it quickly than under-support her and have her begin kindergarten with frustration or failure.

It makes perfect sense, and for that reason I took a deep breath and signed off on something utterly contrary to everything I want for my daughter: namely, putting her in a self-contained classroom for all regular instruction, with only her “specials” happening with her typically-developing peers. I did so with a very clear instruction that I wanted it in the plan that re-evaluation would begin immediately, and not late in October or November. And only after taking down three different names for people within the new school whose phone lines I can burn down to make sure it doesn’t get set aside.

I signed, but I have tears in my eyes thinking about it, and a vague sense of nausea. Because I know how hard it is to move a bureaucracy unless you have an advocate within…and my whole support system is at the early childhood center, not at the elementary school. And our goal for the kindergarten year is to see if Julianna can function in the classroom without that support, because only then can we explore the possibility of sending her to Catholic school with her brothers.

I spent all week watching her outdo the expectations for a child with Down’s. They think she needs special P.E. because she’ll need help with stamina navigating a school so big. Knowing my child, I shook my head and smiled. I smiled bigger three days later when she pushed a stroller containing a child almost as big as she is up a huge hill, down the hill, around the corner, 2/3 of a mile from the fire station to our house. Stamina: check.

I watched her name colors and identify letters, and shook my head at 65% special instruction, because she really isn’t much behind other almost-5-year-olds in terms of her knowledge…only in speech.

And then, as I worked on a music list before choir practice yesterday afternoon, she settled at my feet with the cards from the “Your Baby Can Read” box. I’ve ceased to wonder why she’s interested in a bunch of cards with no pictures, only words; she just likes shuffling through them. In the middle of scribbling notes to myself, Julianna uttered her usual “pay attention to me” grunt. I turned around to see her making a sign I didn’t recognize: her hands crossing in front of each other repeatedly, as if drawing attention to her ribs. “I don’t know that sign,” I said, but she kept signing insistently. I glanced at the card on her lap. It said “zebra.” “Zebra?” I said halfheartedly.

“Euh!” she said happily, and signed all the more furiously.

I frowned, trying hard to squelch the leap in my chest, and turned to the computer. And I found this link. And my breath caught.

My girl can’t talk, but she can read…at least a little.

My breath caught, because now I know I have reason to fight for what I always said I wanted for her.

Published in: on January 19, 2012 at 8:29 am  Comments (7)  
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