I know I can….I know I can….

Posted on by | Leave a comment

10154353_10203677323792582_4540840338547505571_n“No Momma. I put on the diaper by my own self. Not you.”

Pulling the tab across her own belly on her own diaper, Sugarplum giggles with the pleasure of the tab staying in place. Grinning up at me, she reaches her pudgy fingers out to pull my head down to that sweet belly and I inhale the freshly-diapered, powdery smell from the Pampers she still sleeps in. I smile wide in spite of her monkey antics and indignant insistences of independence and tickle her belly lightly as the giggle morphs into a chortle and finally an all-out hoot as she bows her small wiggly body around me. It won’t be long now and there won’t be any diapers on our market lists. A check-off I’m both finally ready for and hesitantly dreading. I clean up the box of wipes and unused crèam tripping over her little matchbox car as she grabs her blankie and flies out of the room yelling at her sisters that it’s time for bed.

 

1441222_10202498882732292_47446696_n“No momma. I do it myself. Not. You. Momma.”

Pulling the math sheet over and away from me, the Quail lays her body across the bottom half as her arm encircles the top so that I can no longer continue to read the instructions to her. At first, it frustrates me. All summer we have set aside a few daily minutes to work on math because it was noticeably hard for her in Kindergarten. And every day this summer it remained hard for her. She speeds through the numbers ignoring the sevens and twelves and thirteens that just last month she recited precisely with carefully articulated consonants and vowels. We would pull out a set of wooden blocks and instead of touch-counting them, she smoothed the chipped paint and textured images of each side as she lined them up oh so precisely that the mere movement of one pushed them all out of line, upsetting her, me and the applecart. But we did it. We didn’t always like it. Sometimes I poured a glass of wine while we worked on it. We counted and pushed the blocks across the table and wrote and erased and smoothed the rubber filings off the page and onto the carpet. Night after night. And now I expect to need to help. In spite of increased ADD medication and classroom support, I assume that her needs remain. And I act accordingly. And then, she stops me with a full sentence. A sentence that a year ago she would have been hard-pressed to articulate. And I grin back and sip my wine and wait. I lean in a couple more times. Old habits die hard for most of us. She eyes me, utters no and starts to shove her hand into mine as a not so friendly reminder of her instructions. And I pull back my hand again and tell her to please tell me if she needs help. And I wait. And she gets the answer right and the next one wrong and I chew my bottom lip debating the merits of my not correcting her and my desire to prepare her to demonstrate more than what people expect of her. To demonstrate what I know she’s capable of. Except, I get it wrong too. As well as I know her, I underestimate her time and time again. Glass houses and all.

Finally she hesitates and turns the eraser to the seven as she notices she wrote the sum rather than the part. We both smile as she erases with enthusiasm and shoves her chair back from the table ready to run to the kitchen. “Show your Dad!” I holler after her as she drops the page on the pantry floor and streaks down the hall after her sword-and-baby-doll-wielding little sister. Picking it up I show Lovey and then carefully tuck it in to her homework folder. That night I wasn’t needed there either.

 

DSC_9993“No. I won’t do it. You don’t know what the teacher said. I know what I’m supposed to do.”

Zuzu’s voice hits a pitch that causes my eyes to swing shut and my lips to form a hard line. I started out calm in what I considered to be a helpful voice pointing out that if she doesn’t do one more math problem tonight she won’t finish them at the pace she set for herself since she has dance on Monday nights starting tomorrow.That’s how it started out. That quickly turned ugly as she heard my implied criticism of her burgeoning time management skills. So I try again with different words in a frank tone to point out that she has only three nights available to do the five problems left, so one a night won’t get them done by Thursday morning. She covers her ears, stomps her feet and storms out of the living room and I open my eyes to the three-year old now standing in front of me interpreting the situation quite simply, “She mad Momma.”

Indeed. As she rushes back in the room to grab up her binder and pencils I tell her she’s right. She doesn’t have to listen to me about this. She can do it her way and see if that works out. Hunching her shoulders against the sudden stillness of my helicopter blades, she turns with her things to the living room and starts over again explaining the rules as she understands them to her father. He, calmer than me at this point, doesn’t elicit much better of a reaction. Sighing, I pick up Sugarplum and carry her in to the kitchen to keep me company while I clear off the table to wash away the scene and the dishes. We frequently clash over homework, Zuzu and I. It used to bother me. I explain what I understand thinking I’m helping her and she starts to cry or yell. Now though, entering third grade I’ve seen this enough to see it for what it really is. Not disrespect or general orneriness or rebellion. It’s anxiety that she might not know something in front of the person she loves so very much and tries to be like at every turn of the day. I wish I could help her. That she would take my suggestions and explanations for what I know to be true about our lives. But she is my daughter. She is strong, confident and sets a high standard for herself. Last year her teacher gave me permission to back off of the homework argument. “She’s not going to let herself fail. It’s not worth your relationship.”

Two nights later we unload our Happy Meal boxes and as I move her pink striped and owl covered messenger bag from her chair to the pantry I ask if she would mind if I peeked in on her math homework for the week. She eyed me over her cheeseburger and said she knew it was done and not to worry. As I stood their holding the bag silently she acquiesced and said it was fine. Opening the binder I pull out the sheet and notice that she did the extra problem. Not when I asked her to. But on her own terms, in her own time. She wasn’t going to let herself get in trouble for not getting it done. Smiling I closed up the bag as she mutters that she told me she knew what to do.

DSC_5028

It’s clearly visible now, each of their desires to do things all by their own selves and be recognized for the competent little humans they already are. Bittersweet is what it is. This growing, growing they insist on doing while I’m sleeping and working and catching and dropping the balls of our daily circus. I watch for it. I lean in and ask questions and take pictures and listen closely in order to watch for the changes that continuously emerge somehow unseen in their walk, their routines, their words and stories and play and work. Their stories that now have details between their giggles and tears and tantrums like-

“I choose the Frozen shirt not the butterfly shirt Momma!” and

 

“My birthday. Miley. Blair. Laurel. Dance bag like Zuzu. Dark blue. Sleep over. Popcorn.” and

“I am doing competition dance and jump rope team and Quest and Scouts!!! I can do it. It’s not too much”

Stories that really mean

“I know what I want.” and

“I have my own dreams too.” and

“See how I’ve changed? Do you see me?”

Beautiful, if still halting  and hurled phrases whispered and shouted and sang and played out with the Magic-clip dolls and My Little Ponies and rituals and schoolwork by all three of those girls now.

10441349_10204283198659075_8561624171820249073_n

Growing, growing, gone….

Posted on by | Leave a comment

3 girls 2My lip creeps up on one side. Not quite smiling at the inconvenience of the wiggly Sugarplum-child on my lap. I try to angle my head and hands around her fingers that are flying at the keyboard with a precise, if ineffective, imitation of what they see their momma’s do. Really, what they think she does, or did, once upon a time. Sighing before my mood turns into a full-out grimace of frustration, I give up and click the computer into sleep mode. Bending the mere inches that her sandy head now sits from mine when she’s in my lap, I sniff and breathe in deep taking my fingers from the keyboard to her tiny rib frame.

She’s so very big now. So very much herself. No longer the quiet one of the family crowd. The noticeably peace-able one that is not like the others. She’s big enough to contribute her fair share to the daily ruckus that is our family life. She’s 3 now.

“Momma- when I big I going to eat cottage cheese just like you.”

“Momma- first I don’t take a bottle or neh-neh. Then I move up to Ms. Maranda’s class cause I bigger. Then I drive the car.”

“Momma- do you love God? You have to love God.”

“Momma- when I get big I go to dance with Ms. Kahli too. Not now. When I big.”

“Momma- I not big. I little. I said I NOT BIG!!! I want to be little!!!!”

And so it goes, the life and mind of the three year old. We have to be careful to not remind her if she is big or small when we do or don’t want her to do something these days. She takes it to her sweet little almost-healed heart and wails at the injustice of it all. And then, it passes and she calls out for the Quail, “Ab-eeeee-Quail! Come play with me!”

And in comes the Quail. They gather in the kitchen. One perched behind a cabinet door pulling out bowls and cups and plates and rattle off the daily donut special. The other walks up with her moneys and asks to buy ice cream. The shopkeeper, not swayed clarifies that there is no ice cream. Just donuts today. The negotiations go on until someone steps in and suggests it is time to play Odd Squad. Which brings Zuzu running from her you-tubing frenzy in the dining room, vying to be Ms. O. That game, while they could happily play for hours, typically gets cut short when our parental ears tire of flinching at the coarse tones they use with each other in imitation of the tiny tyrannical boss known as Oprah. According to the majority in our house, everyone likes that game except those over the age of 10. Majority does not always rule here though. Not when we get calls and notes of concerns raised by the bossy tones they later implement with each other on the playground.

This little pack of girls is tight these days. There has been some alignment shifts. Much more pairings of the two youngers when the elder is off with a friend, at dance, at Girl Scouts, doing homework, playing computer games or watching a show that the other two don’t care for yet. The separation tries to happen naturally but the girls, they fight it.

When Lovey picks up the Quail from summer camp to go to therapy. Zuzu begs to go along.

When I drop off the two elders for their hip-hop dance class, the baby begs to go too.

When one girl is invited to a play date or birthday party, all three cry if the invitation isn’t vague enough to interpret themselves into it.

Last week was the first one back to school. We now have a 3k-er, a first grader and a third grader. I’ve talked a lot in the past about the struggles we’ve had keeping the Quail in a typical classroom. I am happy to say that is in the distant past right now. For now, she keeps up, follows along, enjoys a wide variety of friendships and activities and is a general rock star of her little community. She couldn’t be more loved if she tried. She’s bonded with her teachers, the students, her therapists, her community. People are just as likely to come say hi to her when we walk through the school and store aisles now as they do with Zuzu. Leaving us parents to wonder at how they became the socialites and us the wallflowers.

This year Zuzu has some extra classes to spur her learning along. She’s also made her first team commitment to competition dance. I worried about this. I’m not exactly “dance mom” material. However, I supposed I can google “competition dance make-up application” as well as the next mom. Zuzu and the Quail attended a Frozen party last January at a new studio and fell in love. With the studio, the teachers, the music and the movement.

The teacher, she was a rare gem.

After that first event, she sought us out to inquire if we had thought about putting the Quail in to a dance class. We had in fact. When she was a baby and Zuzu was in a weekly class. Not so much thought, as worried. Worried if she would be welcome in a typical class. Worried if she would be capable of the steps and enjoy the commotion of a group of kids busting erratic moves. When we watched the little Frozen song that the girls had learned in that single 2 hour session, my jaw dropped. The Quail, she was right in the thick of it. Twirling along with stern concentrated movements.

She got it. She loved it.

We decided to give it a try and as soon as Zuzu heard we would be taking the Quail, she frantically grabbed a schedule for herself and politely informed us which four classes she was ready to take. It took some trial and error and many generous offers of carpooling and rescheduling before we worked it out but the two girls each took a class and learned their steps in time to be recital ready. Three performances later the girls wanted more. So they took a hip-hop class together and Zuzu begged to join the competition team. We agreed to let her take the technique classes over the summer to see if she was really wanting to do this thing. When I discussed the possibility with the teacher I am disappointed to say that I was the party pooper. I recalled story after story of what she didn’t like when she was 3, 4 and 5 and in a dance class. How nervous she was. How she didn’t want to separate from me. How while it is charming when the three year old peers over the stage lights in a frantic search of the 400 person filled auditorium for her Momma, it seemed a lot less charming at 8. The funny thing was, the teacher looked at me quizzically. Surprised to hear that this girl who shows great intent at learning her steps and leadership amongst her peers and joy when the music plays would be nervous. And then it clicked. She’s not the girl she was at 3, 4 and 5. She’s a big kid. With a mind and heart and intensity all her own. A fierce, smart, hard-working, rule-oriented, energized young girl who feels strongly about her own style as a dancer and a student. One who doesn’t like to let herself fail and likes to take charge yet still wishes she could sleep each night in her parents room with her loveys most nights, but no longer asks unless one of her parents is headed out of town.

The Quail, she’s grown so much this past year as well. She’s a Daisy Scout. A dancer. A student, a reader, a writer and a friend. She loves to sing and to dance and to tumble and bake and draw and play with her sisters and tell us, “I’m serious mom!” and “No cake for you.” and “I really, really need help.” and “No Momma. No tuck me in. Next week. I love you next week. Daddy right now.”

And while her syntax is discombobulated, the words are finally there. She reads small kindergarten books and writes her name and practices her spelling and sight words around her newest big-kid tooth gap. She asks for help with her math and eventually halts the protests to speech practice and getting dressed and going potty and eating what’s on her plate when given an explanation that if she does it now, she can watch Wynx Club or play Magic-Clip Dolls or Donut shop after. She asks Sugarplum to come play with her. She snuggles. She troops along. And this community we are in, they are ready for her and expect her. They’ve made a place for her and she accepts it with much joy. Her teacher for this year brought me to tears when we met and she told me of her excitement when she heard she could be teaching the Quail this fall. She told me she just knew she would learn so much from her and would do her best to make sure that the Quail was taken care of. There is not much more that a momma’s heart needs to hear than that her children are welcome and loved. And her education and therapy teams have followed suit and asked how to make this learning process cohesive for her. How to arrange the daily schedule so that she takes part in all that she can but still gets the individualized attention that is necessary to make sure the information is filtered in a way that makes sense to her. And this team, this team eats the donuts together and we think together and we grow and learn together.

3 girls 3 - CopySo when these sisters sit still I try to notice. I try to lean in and be accessible to them. When I sit on the couch they still clamor over to Velcro in to me. When I wake on the weekends, I hear their little questions to Lovey asking when Momma will wake up. When I drive them to school and dance and therapy I ask them details of their day and let them choose to tell me or to tell me what radio station we should tune in to so that we all can sing.

And I don’t write about it. Not so much anymore. I don’t really have the time and some of the stories, well, they just aren’t mine to tell anymore. I can’t promise myself and pretend that if I set a writing schedule the writing will happen. The opportunities to just sit and think are filled up with dishes and laundry and dance shoes and Girl Scout lessons and running and sleeping and repeating myself for a seventh time. I still try to notice those ordinary moments and file them away. Lately with the help of Instagram more than my DSLR and prose.

Every now and then though, a phrase runs through my mind in to my heart and I start to put it down for later.

Tickling her ribs softly I lean in to kiss her sparkling eyes and appling cheeks. This giggling Sugarplum pulls away from my hands before banging back in to me for more snuggles and tickles. I stand from the chair lifting her over my shoulder along with the slew of blankies she clutches to her face. It’s better I give in now and giggle with her rather than try to document the last story I heard from her. There won’t be time for writing later. But there won’t be time for this version of her later either.

3 girls

 

Beginnings and Endings

Posted on by | Leave a comment
????????????????????????????????????
????????????????????????????????????
????????????????????????????????????
????????????????????????????????????
????????????????????????????????????
????????????????????????????????????

“Momma. Seriously. Flip-flops. Johnson said Quail Friday Flip-flops. Pleaaaasssseeee.”

“Momma, why are you crying? That was a nice letter.”

Wiping the tears off that are quickly running down my cheeks, I tuck away the letter that the Quail’s kindergarten teacher sent home to each of her children. A time capsule memento to be savored by us parents today and our babies when they aren’t so very little one day in the future. The girls look at me like maybe they should be worried. And then the moment passes. Sugarplum falls off her chair with an almost comedic, “Wooaahhh…weehaw!” as she scrambles up and out of the room before she can be scolded for not sitting still. The Quail shoves her pink sparkle flip-flops up to my nose for emphasis and Zuzu puzzles over why I would cry over what sounded to her like a pretty typical summary of what kindergarten is.

And it was. A summary of what a typical kindergarten experience is. What it was for our girl this past year. What it had been for Zuzu two years earlier and what it would most likely be for Sugarplum two years from now. Our girl, who a few years ago though, didn’t have a certain assurance of a spot in her community school. When our EI would sit crosslegged next to me on our living room rug at the end of each annual IFSP  planning meeting and ask what our goals were for the Quail, I would include how I wanted her to go to the same school her sisters would attend. How I wanted her to be in a regular class until she showed us it was too much for her. She would nod and write it down. And then tell me what would happen “typically” for someone like our daughter. And that was ok. We needed to be prepared. If the Quail needed a higher level of self-contained support to receive an education than I wasn’t going to keep that from her. On the other hand, if she could be a part of the same classes that all the little children she has grown up with attended, well that was the goal.

“It is a very nice letter Zuzu. I like it very much. I’m not crying because I’m sad. I’m crying happy tears, because we all worked really hard for the Quail to get to do those things because we thought she could do them and she would love them. Does the Quail like school do you think?”

“Um, yeah. Every night and every morning she asks if it’s a school day and if it is she cheers, Yay!!!!!”

“That’s right. She loves school and she gets to go. Do you remember my sister Aunt Shel? When she was growing up, children like her didn’t live in their homes or go to the same school as their brothers and sisters.”

Now if you’ll excuse me I need to go read, “The night before Summer Vacation” to the girls. It was a present from the Quail’s Kindergarten teacher and she’s itching to hear the story and show me which popcorn words are in it.

And, But, Or….

Posted on by | 2 Comments

It’s been a while. 4 months to be exact. I want to write. I want to document. I want the pictures on my camera to live here not there. I want to put what’s in my head down for later so that I won’t forget how grateful and grumpy and lucky and angry and  blessed and happy and tired and content I feel.

But….I have three kids.

Full days and weeks and months and holidays and school days and home days and work days. And unfortunately quite a few full nights during this past cold and flu season.

And the more out of practice I get of documenting the small things, the more each small thing seems monumental, and a moment fettered out into the wind. And I hope I remember what I want to say but the fact of the matter is my brain is a bit swiss cheese-like of late as the children consume large chunks of it for their own growth. Where to begin…where I left off? And if so, do I consider leaving off as after the last time I posted routinely for Down Syndrome Awareness month, or the time that I had a good streak before that? Do I just start with now and how shocked I am that even though I’ve been home for over a week with a flu-ridden middle child I still haven’t had time to update or focus on the fact that she turned 6. And that’s huge. And she had the best party. And so many people came. And she had it in her new dance studio which makes her heart sing and her feet fly. And if I’m going to start with her birthday I should go back to her sister’s birthdays because they weren’t properly documented either.

Or do I just stick with the ordinary afters that are the real beauty of the fortunate days and nights we have together, where we climbed the tall, tall cedar in our yard and we baked apple cobblers and learned to write our name and pee in a potty and played soccer and took up dancing and wrote out our valentines and learned to speak in little sentences and made pictures for our BFFs who made loving drawings for us? Do I start with the trips to the Mountains and Atlanta and South Dakota and California and Kentucky and the circus and family camp?

Maybe I begin with me and the fact that since starting running in October 2013 I’ve logged more than 500 miles which for someone who thinks of herself as “not an athlete” is a pretty big deal. Or the fact that I now color my hair and wax areas I shouldn’t bring to your attention, wear pants that could be accurately described as maternity pants for non-pregnant people or yoga pants for work, drink a good bit of caffeine daily and again, signed up for my first ever yoga retreat, became a Girl Scout Troop Leader, fell in and out of love with Benedict Cumberbatch, started reading fan fiction and listening to mindless trash and podcasts, had some manicures and pedicures and decided never to get gel nails ever again. Cut my hair short and in a style that is inspired by the haircuts I gave my own kids. Started wearing some eye make-up. Hoarded information and ideas on Pinterest. Started eating brussel sprouts and cooked spinach. Said good-bye to friends that have moved and welcomed new friends into the village as well as got my own BFF back in my daily life. Admitted I love Frozen as much as my children. Lied that I don’t know where the Frozen soundtrack is. Enacted the candy tax.  Bought my third pair of running shoes. Visited the bakery that I thought had shut down years ago but found it open again in a new location and still making the custard brioche with the sugar crystals on top. Rana race. Received a Humanitarian award from my work. Lamented that our local bakery was sold to a new owner and the french bread doesn’t taste quite the same. Started getting up at 4:45 a. m. to go running two mornings a week with friends and slept a couple hours later on the weekend and then ran over 5 miles at a stretch. Had the flu and an ear infection and went to the circus and dressed up for Halloween and became a Girl Scout and went to sleep-away camp and ice skated for the first time in at least  20 years myself. Volunteered at my children’s school and stood by Lovey as he was recognized for his hard work and dedication on a football field on national television.

Do I tell you about the wiggley teeth, the closed fontanels, the genetically missing teeth, the future braces, the removal of an apraxia diagnosis, the unthickened liquids and articulated consonants and the swimming and boat rides, the graduations and performances and the ice cream and cakes and Popsicles? The sessions of cook, playing mommy and doctor and teacher and painting, drawing, stickering, glueing, cutting and markering on the porch? The IEP and meetings leading up to it? The date night meals coffees and drinks and movies and concerts that Lovey and I got to have and GNO activities and old friends that traveled to us and we traveled to visit? The report cards and progress reports and worries and problems? The nursings we gave up and continue to do but no longer talk about publicly? The fireflies we caught and the flowers we drew and photographed? The birthday and Christmas, and weekend and Girl Scout and back to school and end of school and pool and potluck and meat parties we attended and threw?

How we faced so many of our fears by ziplining and hugging a tiger and sleeping at a friend’s house and raising money, and going out with new friends and offering a hug and telling friends that while we like playing with them we want to sleep at our own house and running farther and earlier than we thought we could and driving through a canyon and getting shots and echocardiograms and taking yucky medication and trusting new friends and teachers and helpers and asking for what we needed and staying calm in hard conversations and fighting the people and recurring scenes in our nightmares and flying away from our family and visiting long-lost relatives and mourning the loss of family members and friends and saying yes and no and sorry and being ok with the maybes?

Life has been marvelous and tiring and entertaining and connected and chaotic and over-booked and full of laughs, smiles, tears, colds, hugs, planning, wonderings and naps.

And then I yawn. I finish my coffee. One napper stirs and another one cries out. And it occurs to me if I’m going to nap I really need to lay down now. And I’d like to read and I’d like to see what everyone else is up to on IG and FB and I’d like to watch some Netflix and order Just Dance 2015 and I should fold the laundry, start the next load, empty the dishwasher, read with Zuzu, break-down the boxes the Christmas presents arrived in, sort the Girl Scout cookies, play a game of Go Fish with the Quail. Talk to Sugarplum. Go for a run. Edit some pictures. Get the duplicate pictures out of my blog’s media file. Read my camera manual. Read a parenting manual. Read a Down syndrome therapy manual. Read a momma memoir. Read my friend’s blog. Organize the next Girl Scout lesson. Send an email to a friend. Brush my teeth. Eat some cookies while no one is watching. Eat some cookies with my girls who are no longer asleep. Roast some brussel sprouts so I won’t eat the cookies. Take a shower. Pack my running and yoga clothes for the next week. Declutter the pantry. Take my antibiotic and anti-viral. Cook something in the freezer. Get the fall leaf pile off the lawn and the grass it most certainly has killed. Do nothing. Roast a chicken. Do everything. Organize my brain. Take a nap. Order a duvet cover. Sort the socks. Watch the DVRed recordings of Late Night with Seth Myers, The Big Bang Theory and SNL.

Hit publish.

But before all that, let me share the pictures from this Christmas where we found out that the Quail; who puts up a fuss at the practically weekly December visits to Santa as he shows up at our Down Syndrome Family Alliance Holiday gathering, our Tacky Sweater Christmas party and our brunch with Santa one week after the other and insisted on telling each one that she wants underwear for Christmas as she stood off to the side, barely in the camera frame, managed to hide from her family the fact that in spite of the dramatic interpretation she provides of a child scared of Santa she actually sat willingly and dare I say happily on his lap when he came to her kindergarten classroom. Let me show you the pictures of this Christmas where we had three little cookie bakers and decorators and a tree that had lots of low-hanging ornaments and twinkle lights but no actual topper as we never got that far once the two year old succumbed to a bout of sickness. Let me share how this year each girl helped wrap and label her sister’s presents and searched most mornings for TJ the Elf who for some reason or another seemed to keep finding a spot he would like and reappear in for days on end before he managed to move to a new one. And how Zuzu decided it was the most important thing ever that she finally get an American Girl Doll and that she was absolutely certain that Santa knew exactly which one she wanted because she wrote the item code on her Christmas list and Momma really shouldn’t worry about how she should act if by some unforeseen reason he brought a doll that was similar but not the exact one because there is no reason for him to get it wrong and that when she opened the present containing said doll her first question was, “Where is the item number?” And how the tiniest of the Sistred decided she would tell Santa she wanted a butterfly for Christmas and this Momma took to the sage that is FB to help her identify options that wouldn’t die in the winter and could withstand the loving of her tiny busy hands. And how all of this was after there had been multiple pleas for all things Frozen from underwear to shirts to dolls to blankets and more dolls. Dolls that were tiny with little clip dresses and dolls that were Barbie sized to soft plush snuggley Anna and Elsa and Olafs to dolls that were toddler versions with big blue eyes and satin dresses. How our sweet two year old took to present opening with such gusto that she was air-borne in more than one of the pictures from Christmas morning. How the girls in spite of their diatribes about what they wanted thought a lot about their sisters and played with and snuggled and included them in ways that would melt your heart. Let me start there….

Let me stop there and hit publish so that I can go take that nap. Or fold those clothes. Or watch a show…   Oh wait- let me add in this year’s annual trek to the North Carolina Mountains where we go each year in the second weekend of December, not too early and not too late, to cut down a Frazier fir tree for our Christmas. One that will last through the twelfth night when we plan to take it down and the following weekend when it actually will come down.  One that we see as we say hello to the sweet family that grows them and then bound off to the bakery for some coffee and hot chocolate and apricot brioche.

gratitude

Posted on by | Leave a comment

1185004_10202034632526327_412508624_n1. snow in the south on November 1st!

2. snow melting

3. Two Annas, an Elsa, An Olaf & Sven

4. Restaurants handing out cups of hot pie at the town trick or treating

5. The candy tax

6. The fact that my children like the suckers best and I don’t. That makes the candy tax much less painful for all involved.

7. Halloween Donuts

8. Cake offers

9. 4.62 miles at a 12 minute mile

10. Friends willing to take your kids while you attempt to clean

11. cool air

12. friends to run with

13. Running friends to drink coffee with

14. volunteering at your children’s Halloween party

15. a school raising funds and awareness on behalf of your child

16. a work place raising funds and awareness on behalf of your child

17. V8 & cottage cheese after a week of too many sugary indulgences

18. Vest season

19. your kid’s friends

20. Trick or Treating

21. Good report cards!

31 for 21: Day 30

Posted on by | 2 Comments

“The Quail can read.”

 

I turned to look at Lovey as he said these four words as a statement of fact. The Quail had just finished her Monday night homework. Each week in kindergarten they study two letters and part of the lesson plan is creating a book for the letter with a picture of something starting with that letter for them to color and a simple sentence such as “I is for ink.” There are usually 4 pages to the story of things the letter stands for with the last sentence being slightly different from the first three but rhyming with one of the objects. The first few weeks we struggled through these books with one of us reading each word, pausing and waiting for the Quail to repeat it before turning the page. Somewhere between G-H and I, we stopped reading it to her and she started taking the book in her lap, pointing to each word as she articulated it oh so carefully before turning the page and moving on to the next sentence. When she came to a particular word that was hard we would point to the picture and pause seeing if that clue would help her and if it wouldn’t, then quietly starting the sounds of the word until she jumped in. She can read. She has Down syndrome. She is five years old. She can read. These things are all true and ordinary and yet, amazing. This newest fact about her, it snuck up on us. The practice of learning to read has so infiltrated our daily activities for the last three years that by the time she switched from learning her letters to actually reading, it was just a fact of our day, unspoken, until Lovey voiced it out loud.

 

We had been working on her “reading” some simpler board books with repeating or rhyming patterns over the last year. Pointing to each word, us saying the word as the approximation she was capable of saying, then her repeating it. Prior to our offering up approximations of the words on the page when we would ask her to repeat a word, she responded with a simple no or shake of her head. She knows what she can do and what she can’t and if it was a word that she didn’t have the motor planning for, she wasn’t going to attempt it simply to amuse us. Once we started speaking her language though, it was like we had opened up a whole new world for her. She enjoyed it and eventually could go through a couple of board books with us pointing to each word but not needing our verbal prompt. A lot of this was memorization more than anything else, but then one morning with the book that came home from school she was trying to sound out the word “One” in the title and was running her finger under the word as she spoke.

 

Back in her second year, we were in a physical therapy session where the Quail was not being cooperative. Or even very nice about the lack of cooperation. And had been having a string of not-very-nice-non-cooperating sessions. It was understandable that the therapist was burnt out on her. Unfortunately, he didn’t express the issue as that. He chose to say, “She’s never going to crawl. We’re not going to work on that anymore.”

It was time for a new therapist. If crawling came easily to her, we wouldn’t have been taking her to weekly sessions, writing down the exercise instructions and putting her through the paces on a daily basis. And then, there are all the ramifications of not crawling to consider. Telling us that she isn’t going to crawl is not just about her not crawling and choosing a different mode of ambulation. If we accept that statement as a fact, simply because it is being presented by the professional as one, then that sets us up for a series of other facts to expect as development expectations for her get even harder. Will she learn to read? How will her speech that is already impacted by her low tone suffer? This therapist’s single minded decision that crawling wasn’t something he was going to continue working on really wasn’t just about physical therapy- it had an impact on her future vision, her reading, her speech. The motor functions and speech production parts of the brain are both co-located in the frontal lobe. And the cerebellum, at the back of the brain not only coordinates motor functions, but also coordinates higher functions such as language. The repetitive crawling movements help to weave together both sides of the brain with the contra-lateral movements. This is one of the first opportunities for the child to learn how to use both halves of his body initially independently and then together. This develops their binocular vision, it teaches the eyes to cross the midline. This is a skill they will need in order to read. They will have to look from their hands to the path in front of them in order to keep motoring forward. This sets the pattern needed in school to transfer information given in front of them to the work on their desk. Research has shown that there is a strong correlation between crawling and the ability to comprehend written language. Space perception and object permanence are learned during this developmental period as well. When the reflex is inhibited that can lead to future problems attaining more complex skills. For most typical children, this isn’t an issue. But when your child has motor planning issues that are significant, you end up teaching them the patterns until they can move through them more independently and fluidly. Let alone the social and emotional development that comes from a baby being free to explore their environment and develop a sense of control and independence. When significant hypotonia is thrown in the mix it doesn’t mean that your child can’t use their muscles, but it does mean that they have to exert more effort to strengthen the muscles. Both the effort going into each muscular action and the number of actions needed to move and strengthen that muscle. Maybe not crawling won’t cause future problems with vision, reading, speech. I understand that the potential for those issues is seen as being rooted in the basic Down syndrome diagnosis. But from what I can see for the Quail- the motor planning and hypotonia are the foundations of what prevents her easing past her developmental milestones. Once she knows how to do something- she does it. But we have to make the effort to teach her to do one skill after another so that she has the foundation available to her. This isn’t the same for every child and person with Down syndrome. How Down syndrome effects a particular child is individualized.

 

Zuzu said it best when earlier this month their school did their first ever Down syndrome awareness campaign and fundraiser in honor of the Quail and another child in their school. When Zuzu’s teacher was talking to her class about what Down syndrome is her dear teacher asked her if she would like to explain Down syndrome and Zuzu was pleased as punch to tell me about it.
“Momma- I told them that everybody’s Down syndrome is different. For the Quail it means it is hard for her to talk and her family does lots of things to teach her how to talk. We call them bite-bites. They make her strong so she can say what she thinks. For other kids they can talk fine but their Down syndrome makes it hard for them to do other things like walking. Everybody is different.”

 

Absolutely. And what works for us and our family is to educate ourselves on what the potential is if we do a particular activity and if we don’t. What are the pros and cons. The potential risk and benefits. If we accept that the Quail “won’t crawl” as a fact about her- what might that mean for her future development. We know that crawling is hard for her. It isn’t a reflex reaction that comes naturally. We will have to find a way to motivate and practice with her.

 

And so we did. And she did eventually crawl. Not before she walked. She did walk first. But we continued teaching her crawl. And eventually it became fun for her. A way to race her sister. A way to get to the TV remote or the snack that we Hansel & Gretaled through the path of our home so that there was an immediate reward to tide her over to the larger rewards to come later in life.

 

And now- she’s reading. And writing. The possibilities set before her by these small acts- they open up her world in ways that we can’t even imagine.
For more information on the influences and effects that crawling has on development see below:

http://www.whattoexpect.com/blogs/himmeandbabymakes3/crawling-and-its-impact-on-speech-and-reading

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2833284/

http://www.autismhelpforyou.com/book%203%20-%2032%20-%20possible%20connection%20between%20crawling%20speech%20production.htm

http://occupationaltherapyforchildren.over-blog.com/article-crawling-85544642.html

http://visiontherapyblog.com/to-crawl-or-not-to-crawl-that-is-the-question/

http://www.medcentral.org/main/Whatssoimportantaboutcrawling.aspx

http://jillurbane.typepad.com/thementormom/2006/08/the_importance_.html

31 for 21: Day 29: corner view: traditions

Posted on by | 3 Comments

Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar.

Traditions this time of year lead us galloping from one month to the next. When school starts up we are thrown into a pattern of apples and pumpkins and gatherings and celebrations that leave us wondering how another year can pass in the blink of an eye. We have school activities and parties, camping and apple picking. Birthdays and Buddy Walks. Pumpkin patches and Festivals. Visits to the mountains and beaches. Unfortunately that leaves little time for writing and reminiscing as I’ve noticed that my ability to organize the multitude of stills and phrases in my head drops off significantly as our activity level builds. The joy of having school age children is there is much celebrating to be done before the actual holiday even starts. With that said- here was last year’s Halloween festivities. We’re never quite sure at what stage the children will start understanding what we are doing and why. Last year we thought our little Bunny would still be in a watchful mode. But she strode around our town’s festivities with her candy bucket going from person to person just like she knew what to do, only stopping when it was time to unwrap another sucker. When the girls went to the face-painting booth, I naively assumed that it would just be for the two elders. But that little bunny of ours stood her ground, tipping her cheek for the paint and carefully selecting a large, veiny eyeball to decorate her sweet costume, while her two rock star sister’s went with slightly sweeter adornments. The first year that the Quail was able to walk through the festivities she looked down at the first piece of candy in her bucket, plucked it out and deposited it in the next candy giver’s stash. She made her way through the parking lot that way, giving as much as she got.