31 for 21: Day 30

Posted on October 30, 2014 by Cole | 2 Comments

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“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 20

Posted on October 20, 2014 by Cole | Leave a comment

Her disappointment rose in a wail that pierced the sleeping sounds of the family. I felt the momentary panic rise in me, knowing that I had gotten it all wrong. Hesitating while holding her over her pack and play, I tried again as she uttered a quick syllable sounding like “mo”. “Here is your lovey- mo-mo- is it a mo-mo you want? Or more nursing?” The cry rose a second time. I looked at the angry slash of time in front of me- 4 hours till I had to be up. 4 hours to rest if only, she would give in to sleep…

17 months and already something was this important. One last quick scan on the darkness in front of me and Lovey’s voice echoed alongside her cry, “Sugarplum wants the gauze blanket.” There in the middle of our crumpled bed sheets was the Aden & Anais that she had fisted along with her as I lifted her into our bed for a quick nurse a mere 15 minutes earlier. Only I hadn’t seen her do it in my own sleep haze, responding more on instinct and ancient teachings of what mothers do rather than the latest Ferberized suggestions of my generation. Behavior is communication.

No matter how old you are. Whether the behavior is good or bad. What looks like non-compliance for someone who isn’t articulate is often their way of connecting and telling us what they mean. Through any means necessary.

This has been the lesson surrounding our growth into a family. Zuzu was twelve months old when she had her first tantrum. I still can picture her sweet toddling self. She delicately laid herself prone on the floor in response to my denial of her request, careful not to scrape herself up adding injury to insult, looked back at us and commenced into a full-bore wail, fist and foot pounding session. It lasted mere minutes and she was still at the age where you could tip her upside down and her frown would become a grin and she would giggle and run off. As she grew and as the others came along though that trick became ineffective very quickly. Distraction in response to their requests has become less and less of a viable parenting option.

The Quail, she has had to rely on a physical means of communication for the longest of the three. From early on, even though she didn’t have the ability to take the language in her brain and translate it to spoken words, she has always been so very expressive – both in her pleasure and displeasure. It’s this passion without articulation that has been our main worry as to how she would function in a typical classroom. Her ability to say what she knows and be heard as a child with something to say and not just a as a behavior problem. Even with our thorough knowledge of her preferences and exposure to her dialect, we get it wrong. And boy do we know it when we do. That she can articulate.

Even still, we had so many things going for us heading into this kindergarten year. Over the summer, we made the decision to pursue an augmentative and alternative communication device (AAC) for her use in the classroom. She had done so well in 4k, really the only issues that stood out academically were her inability to articulate a full sentence. When we first met with Sharon; the district’s AAC specialist, she felt confident that the Quail could make good use of a device. She explained it like this: “It’s like going through life with something to say and duct tape covering your mouth. I think we share these values and understandings of the importance of communication. The Quail has things to say and we should give her the means to say it.” The first time we met with Sharon, the Quail spent the first few minutes happily playing by herself while we talked. As I leaned in closer to concentrate on what Sharon was saying, she suddenly interrupted herself and pointed at the Quail who had been tugging at my arm. “That right there is what I mean- she needs the words, “Look Momma.” She wants to show you something. Turning to her I questioned, “Look?” The Quail clapped her hands and showed me the picture she was coloring.

Something as simple as “Look” we hadn’t thought to put in her vocabulary. And that is the difference between her and the other children. She would learn to say look, just as soon as we thought to teach her it. But she had to be taught it. And we can’t always see so easily what it is that she is asking us for a word for. Beyond the basic, everyday words, we absolutely can’t predict what words she may need in the classroom when those of us that know her best aren’t there to even attempt to translate for her. Once she has the words- she uses them with her own intent and pacing. But to get her to that point it takes oral placement and practice before she can own a given word and pull it with ease from her brain to her lips.

That first meeting was in January of 2013. When we brought our plan to our IEP team, it was met with resistance. The Quail was making progress in her actual speech and had a glossary of signs to accompany it. The SLP at that time thought that really it would act more as a crutch than bridge to get her where she needed to be. We found ourselves in a triangle of opinions on which means of communication to approach most aggressively for the Quail- a PECS, an AAC, sign, speech? There were only so many hours in the day and most of the Quail’s day at that point was around people who knew her fairly well. So a decision was put off until we could more fully commit to it. Even during her 4k year, her teacher told us that while she had been so nervous about not being able to understand the Quail, she found by the end of the year that somehow she knew what the Quail was saying, however she was best able to say it. We are so thankful that it has worked out that way. And that she has managed to survive, even thrive in an environment separate from us. But as the lessons get progressively more complex it is hard to know how long it will take for frustration at not being understood will overtake patience and repeated attempts to articulate. Time will tell if a device will be the bridge to get her to where she wants to be speechwise. It will be up to her and our team to make it a viable option that is both useful and user friendly. We’ve made the decision though to go forward with it and now we wait for insurance approval.

In the meantime, she’s managed to make a place for herself in her class. She has a gaggle of besties that she plays with and talks about and asks to see. I get glimpses inside her head when she starts to share with me what she wants for her birthday this year and starts to tick off the friends she wants to celebrate with. Her teacher tells us how she has honed in on the difference in her body language when she is honestly confused. How she looks you in the eye, shrugs her shoulders and asks for help versus when she chooses to look down and away. Crossing her arms and very much acting out the part of an obstinate five year old- which to hear her teacher tell it, is really not so very different from anyone else.

31 for 21: Day 7

Posted on October 7, 2014 by Cole | Leave a comment

“This is not apraxia. It is still a severe motor planning issue, but not apraxia. She has worked diligently and made tremendous progress in the last two years. If it was apraxia, she wouldn’t be able to talk as well as she does now.”

Lovey and I both heard her say it and it wasn’t what we were expecting. It had been two and a half years since we last had been able to spend time with Sara Rosenfeld Johnson. When you see someone every day, sometimes the subtle changes are hard to recognize. On the drive up to the appointment the Quail had napped in the backseat while we debated how much change had actually occurred since our last visit. Lovey and I had different ideas of how much had changed. Certainly, there were more words the Quail could approximate now. Absolutely we heard examples of two word phrases from her and at times even more when she tacked a name or angry no to what she wanted. But at 5 years old, she still didn’t have the capacity to tell us everything she felt the need to, and for her- that was an incredibly frustrating process.

“No shirt. NOOOOO!”

A version of that phrase was a common morning routine. The Quail, she knows what she wants to wear. And this summer that consisted of what she called her “Frozen” or “Camp High-Five” shirt. The thing is, there are seven days in the week and that is only two shirts. Two shirts that after a single wearing would morph from white to sand and red clay colored with an outline of her lunch of dinosaur noodles with red sauce, the remnants of the purple or brown marker she had used to draw with, the dripped pattern of the purple popsicle, frosted cupcake or juice she had enjoyed during an afternoon snack. In other words, she was limited to a single wearing a week because her parents couldn’t find a few free weeknight hours to spray, rub, soak and wash her beloved shirts back to their original (or something closely approximating) shade of white. That meant 5 days a week of early morning, tired, hungry and grumpy negotiations about what she was to wear that day. Fortunately Zuzu eventually gave up her Camp High-Five shirt to the cause and another family friend had a spare and donated it as well. And yes. All three of those shirts would get worn each and every week. Her sister’s Frozen shirt- well that was off limits. But we all have our limits.

“You wore Camp High-Five on Monday Quail. It’s dirty remember? You had Dinosaurs for lunch that day and it was hot outside. It’s coated in sand and sauce. You can wear it next week.”

Leaning down, I reopen the dresser drawer that the Quail has just slammed shut in frustration. Quickly pulling my fingers back as she reaches to push it closed again I see her face twist in anger.

“Are you angry honey?”

“Ye-ah” Her face crumples as she sits criss-cross applesauce in front of the dresser. What she wears should be her choice. And for the most part it is. Zuzu runs over and pulls her own Frozen shirt from her drawer and the site of it stirs the Quail’s cooling anger again. “NO Zuzu! No! My Frozen. Mine!” Her little hand curls into her chest as she pushes herself up from the ground about to launch her small but stout self after her twiggy sister who dances just out of reach from her. Zuzu opens her mouth to tattle that the Quail is being mean even though I’m sitting there witnessing it in real time. I intervene, suggesting Zuzu dress in the bathroom and push aside the dozen shirts that continue to go unworn in the months since they were last washed. “How about this one. You like purple- it has purple stripes.”

“NO MOMMA. NO. Dah-rk puu-ple.”

Ah- dark purple- this I can do. Lifting up the tangled mass of patterned and striped yellow, red, blue, pink and white shirts I find one of two dark purple shirts that she favors at the bottom of the drawer. “This one?”

“YES!!!!” She squeals leaning in to do a little dance of happiness as her small soft hands unfurl to clasp my cheeks and she presses her nose to mine. Yes. That shirt, the dark purple one is the one she wanted to wear. The one that until recently she couldn’t articulate the difference between it and a dozen others in a clear enough speech pattern for me to get it right on the first or the forty-first try. Softly inhaling her morning breath , I smile and pull her down into my lap to help her get the shirt on before moving on to the pants. And the socks. And the shoes. And the hairclip. The things that I know matter to her but that she has to work so very hard to make understood. It’s these little basic, ordinary, everyday choices that we all make without a second thought that urge Lovey and I on to work and work and work on her speech. It’s not because we think she isn’t whole. It’s not because we think she isn’t perfect the way she is. It is not because we think if she doesn’t walk and talk and act like the mainstream she doesn’t deserve her place in it.

Not. At. All.

It’s completely the opposite. Once upon a time, a child with a label of Down syndrome (or a thousand other special needs labels) would not be considered worth medical and educational care. They were seen as less than, incomplete, a mistake, someone not worth affording the opportunities to receive basic care that the rest of us can take for granted that we have a choice to either sign-up for or not. When my older sister was 6 years old she had yet to be able to walk. My mother, she asked her doctor to refer her to physical therapy so that they could learn the exercises that would strengthen her muscles and help them remain pliable so that she wouldn’t end up unable to move by unintentional neglect. But that doctor did what was common in that time. He said no. That it would do no good so he wasn’t going to waste everyone’s time, effort and money. At that time the only way to receive specialized care was to live in a specialized setting. An institution. Ironic isn’t it? In the year that she was seven, after having been at the institution and under the specialized care and therapies that the doctor had sworn would not benefit her she took her first steps.

The Quail, she is still learning to talk. To put together the words that will tell the world who she is, what she knows, what she wants and how she feels in her own words and way. Because those things exist. Her thoughts, her preferences, her opinions they matter. She works hard each and every day to do what the rest of us are blessed to come by easily and take for granted. Our visit with Sara was a heart-warming one. One that said she has progressed and will most likely continue to progress. That the effort and love we put into helping her say the things that matter to her are worth the effort. That she is worth the effort. That just because it isn’t coming easily to her doesn’t mean that we should lower our expectations for her. It’s best to shoot for the moon as Mr. Peale says, even if we miss we’ll land among the stars.

Or in our case, the dark purple shirts and quiet mornings.

3/21: A day in the life

Posted on March 20, 2014 by Cole | Leave a comment

This post is part of the series “A Day in the Life” that is a celebration of World Down syndrome Day – 3/21. For lots of other posts on “A Day in the Life” – or to contribute your own post, please visit Down syndrome Blogs.

Shortly after I hear one door close another one opens. I turn away from the machine, my coffee steaming as I take a sip and spy her small hand reach around the doorframe. Sleepily she creaks the door further and pads over to where I’m standing. I lean down to kiss her tousled strawberry mop, sinking onto the floor in front of the kitchen sink. As I make a lap she folds herself onto it, hiding her face from the fluorescent light she wasn’t quite ready for.

“Morning Baby.” I lean in smelling her night’s sleep and carefully place the overflowing coffee away from us as she pushes her hair out of her eyes.

“Momma. Zuzu sleep. 6. 1. 5. me. Shannon. Me sleep done. No potty. Eat cereal.”

It’s Wednesday morning and it is early. 6:16 AM to be precise. Each day I intend to wake early enough to have a quiet cup of coffee by myself and do a little writing. Each actual day I wake a minute before the alarm sounds, turn it off, and roll on my side to listen to the soft snores of the baby before lightly stepping past her into the bathroom. Strangely, now that Sugarplum sleeps through the night, I find myself needing more and more sleep rather than less. I’m not sure if it’s the creak of my slippers down the hall, the flick of the light in the kitchen or the press of the Keurig as I snap my k-cup into place and add the cup of water, but the sounds of my morning starting have been consistently triggering the Quail’s weekday morning starts for a good while now. She seeks out a quiet moment to soak me in before her day starts and really, I don’t mind. I can write later.

“You woke up at 6:15 Quail?”

“Yes.6-1-5 me. Zuzu sleep.”

“Zuzu is still asleep?”

“Yes.” She makes the sign for sleep and grins up at me, the precision of her yes pronunciation drawing out steady and confident. She shares a bed with her sister and while the cry of “She’s on my side of the bed again!!!” and “MOOOOVVVVEEEE!!!!” sound frequently from both of them, it’s what they know. What they expect.

“What day is it?”

“Wednesday! Shannon! Jan. Bobson. Lee. Oriana. Nekaelah”

While a stranger might not know what she is saying, contextually I understand her still garbled day of the week and that she is telling me that she knows she has speech therapy with Shannon before heading in to begin her school day with first Ms. Jan, then on to Ms. Dobson and Ms. Lee. She knows that when the school day is done she will look forward to heading back to her private school for after-school care and playtime with her favorite kiddos, her friends Oriana and Nekaelah. She knows her routine and what to expect.

“Who will you play with at school today?”

“Or-ee-annn-a. Ni-KAY-la.” She carefully sounds out their names again. Names that she has taken great care to learn to pronounce so that no one can be unclear these are her friends. Who she looks forward to seeing and playing with each day. These are friends she has made on her own. Not friends of our family’s, not anyone we know outside of her introduction to them.

Shifting my weight a little she stands up and asks again. “Eat?” her sly smile telling me she already knows the answer. A year ago I would have just told her no, not yet; not expecting any further conversation on the matter, only fury at my denial of her request. Now though, it’s a good chance to engage, to talk, to practice pronouncing our every day vocabulary and thankfully, avoid a tantrum.

“You want to eat? What do you want to eat?”

“Um….” Her little finger goes up to her lips as she raises her eyes in contemplation then starts touching one finger to another as she labels out each item in turn, “cereal, rai-sin, keeee-fir, go-go squeeze! Cake?”

“We’re out of go-go squeezes and cake. We can buy more of the squeezes this weekend though. What do you do before we eat?”

“Potty. Bite-bite. Clothes. No potty. No.”

Still avoiding the fight, I ask, “Do you want me to pick out your clothes while you go potty or do you want to?”

“Me!!!! Purple. New shoes.” At this she turns and runs down the hall, stepping quickly around the tiny shopping cart overflowing with toys. She pauses briefly at the living room door, looking longingly at a neat stack of books on the side-table just waiting to be read and played with before checking back to see if I was coming with her or not before continuing into the bathroom.

“Momma! Sit!”

I lower myself on to the side of the tub finishing my coffee as she tries to undo the snap on her fuzzy, feeted pajamas before letting out a scream of frustration a few inches from my ear.

“No, ma’am. No screaming. Ask for help if you can’t get it undone.” She quickly signs help and then pulls back away to work on the zipper once the snap has been opened. Patting the side of the tub, she signs for me to move closer and leans her head on my knees while she finishes up.

I turn on the light to their room and sing out to Zuzu that it is time to get up and get ready for school as the Quail yanks on her dresser drawers pulling out a half dozen pants looking for a pair with purple on them.

Zuzu used to be our early riser. So early that a rule of not leaving your room before 6 AM on a weekday had to be enforced the previous year solely because of her. Now, she needs to be woken each school day and urged to do the half dozen tasks it takes to get herself ready before we leave by 7:10 to get her to school and me to work on time.

The Quail slams her shirt drawer shut and dives into her sister who has crawled up on my lap. As Zuzu protests at the slight dislodging this causes, the Quail’s voice trails up with hers and I shush them both with a reminder that we want to let Sugarplum sleep.

Lovey comes in fresh from the shower and takes the reins as I sigh at the clock’s having moved too far forward for me to do any writing or manage a second cup of coffee before we need to leave in our manic out-the-door-right-this-very-second-what-did-we-forget-this-time-hurry-up-we’re-going-to-be-late-if-you-don’t-put-your shoes-on-right-now-privileges-will-be-taken-away-I-mean-it-we-have-to-go-hug-your-sister-yes-you-have-to-wear-a-coat-where-is-the-sunscreen-who-took-my-shoes-shit-we’re-late-again daily rush.

I kiss the Quail’s head as she sets down the Ipad and tries to scramble away from Lovey who has gotten out her oral-motor exercises. “HUG!!!” She bellows as I lean in to acquiesce. “Bye-bye. Momma. Work.” Turning away from her I breathe in the fading scent of her sleep and hustle to the door.

That evening I’ll pick her up from after-school care, covered in sand, sunscreen and smiles and she’ll test my tired-out-patience as she darts in and out of the little school’s rooms giggling at the freedom now that the teachers have gone home for the day. “Donald’s?” she’ll ask. I’ll tell her no, reminding her we ate McDonald’s the night before and ask how her day was. She won’t answer- she’ll be too busy chasing Sugarplum and Zuzu.

As we pull out of the parking lot, carseat buckles secured, I’ll ask if they want their windows down or the radio up. “YEAH!!!! Drive fast Momma! Turn on a girl song. Make the windows lower!”

“Yeah!!!!” the Quail will chime in mirroring Zuzu’s enthusiasm for the car ride. As the latest pop song chimes through the windows I find myself surprised to hear not just one, but two voices bubbling along now from the backseat. By the time we’re home though, she will have rested her chin on her chest and be fast asleep. Between her insistently early start to the day, a therapy session, private 4k, public 4k, after-school care and the students we bring in daily to help her practice the activities she learns in therapy, her little self is usually beat.

Getting out of the car at home, I come around to carry her into the house as she snuggles up to me whispering. “Peg. Cat. Eat. Drink” in my ear. I answer with the need for her to empty the sand out of her shoes on the porch and then go potty first and her head jerks up off my shoulder in protest. As we settle into the bathroom for the millionth time of the day I not-so-patiently contemplate how much it would cost to switch our bathroom with our living room so that we could have more space in the room we actually seem to live in.

After tubbies are done, I reach for Sugarplum for a quick nurse before heading into the kitchen to see what Lovey is getting out for dinner. All seems quiet until the Quail peels herself away from PBS to look for us. I hear her questions before I see her, “Eat? Drink?” As she pulls her grinning self up on to the bed next to us she peppers us with questions, “Bread? Kee-fir? Ba-na-na? Pizza? Cake?” as she proceeds to pounce on top of the previously quietly nursing baby. Giggling Sugarplum lets go and engages in the rascaling as I sigh, cover myself up and head back to the kitchen.

Finishing up her dinner with slight disappointment over the lack of cake and pizza. The Quail asks for more to drink and then stomps her anger out of the room as Lovey lets her know she can have another cup of kefir after we do her bite-bites. Finishing up my own dinner I let the baby out of the high-chair and holler for Zuzu to come back and practice for her math quiz while Lovey loads up the dishwasher.

Once we finish up our oral-motor exercises, the Quail climbs back down off the couch. “Drink. Kefir. More. Backpack. 3-1.” I trail after her back into the kitchen to refill her strawcup as she unzips her backpack pulling out her book that came home from public school for us to read together. Gently she turns it over pointing out the number 31 on the back cover. She may not be able to pronounce, “The Elves and the Shoemaker”; but she knows it’s her favorite story from the collection at school and she knows its number 31. And now we do as well. Sitting back at the kitchen table we finish the story and she packs it back away as I rinse out her cup.

“Up” her little hands reach up to me as she asks me to carry her back to her room. 7:45 pm. A little before bedtime. Lifting her up into my arms with all my good intentions to finish up the evenings chores after the girls have gone down to bed, we head back into the living room to kiss the other’s goodnight and Lovey joins us while we tuck her in alongside her duck lovies, yellow doggy blanket, cabbage-patch kid named Niles and Abby doll. Just as I start to tell her how very much I love her, my words are met with soft snores.

The day is done.

Lovey turns on her dreamlight, I set the sound machine to soft birdcalls and we back out of the room and close the door behind us.

31 for 21: Day 28: without

Posted on October 28, 2013 by Cole | 1 Comment

Go:

As soon as the backdoor clicks shut I hear a wail come up from the end of the hall. Rushing back I see the Quail sitting on the carpet with her shoe box dumped on its side around her. Big, wet tears are making tracks down her cheeks and she’s trying to force a pink and yellow flowered sandal over her jammy-clad foot. Kneeling down beside her I start to gather the shoes back to the box. I’d spent the better part of the morning sorting and folding the seasonal exchange of children’s clothes that had been landsliding through our home for the last two weeks. Eyeing the new mess in the hall, I was none-too-pleased.

“Quail, stop. Help me pick these up.” Rather than helping. She starts screaming what sounds like, “Cookie!” to me as she shoves my hands out of the way and continues to try to get her shoe on her foot.

“Quail. Stop. No. No cookies. Clean up.”

We continue misunderstanding each other as her frustration races my irritation to the culmination of her meltdown. Finally I get up and leave the hall. Sometimes I just need to step away. Time-outs, they are wasted on the young in my opinion. She follows me into the kitchen continuing to chant cookie and grabs the plastic pumpkin bucket off of the kitchen table. Shoving it up into my hands she tries again. “Cookie.” Peering into the pumpkin. I repeat the name for it, “Pumpkin?”

“Yeah. Pump-kin. Daddy. Sug. Zuzu. Me!” She bangs her small hand against her heaving chest gathering the pumpkin up with her shoes and runs to the backdoor.

Not cookie. Not angry. Not out-of-control. Not trying to make a mess. Just not able to articulate in her panic, her desire to be included.

When Lovey got ready to go to market this morning, I had gone up to the attic to find our trick-or-treating buckets because I was fairly certain that we only had two to go between the three girls this coming week. One pumpkin. One Elmo head. Zuzu had dressed Sugarplum in a striped and pumpkined sweater and in all her baby-cuteness I had grabbed her, Elmo and the camera to photograph her quickly in the morning light before strapping her into her carseat. Unbeknownst to me, the Quail had seen the buckets and my camera and had thought they were going trick-or-treating. Without her. The day before she had been sick and the girls and Charlie had gone to the school’s fall festival while she and I stayed home.

“Did you think we were going Trick-or-Treating?”

“Yeah. Boo!!!!” She waggles her fingers scarily at me and we both laugh. I explain that Lovey and the girls were just going to the store. They would be back and we would all go the pumpkin patch later.

“Me. Boo.” Satisfied that she was not being left out. She moves back to the living room to resume her Barney-marathon. That’s the thing these days. I still repeatedly underestimate how much of the commotion around her she is taking in and processing. Whatever her sisters are doing. She wants to be doing. Be it- going to school, to the park, to the market or pumpkin patch. If Zuzu is twirling through the yard in a rock-star costume. The Quail is only a beat behind. If Zuzu gathers her backpack to head out the door. The Quail is making sure hers is packed with her Bookflood Book and folder. If Zuzu grabs her swimsuit to fill up the little plastic pools, the Quail grabs the towels. All for one. One for all. Sometimes it just takes me a while to catch up to speed.

Putting the last shoe back in the box and returning the plastic pumpkin to the kitchen table I reach into the fridge for the tub of Tollhouse dough. Suddenly I’m exhausted and hungry for cookies.

Stop.

31 for 21: Day 17: understand

Posted on October 17, 2013 by Cole | Leave a comment

Go:

“Momma- you can’t bring a beard on the field trip tomorrow. Here’s a milk instead.” I was cleaning up the kitchen while Zuzu packed our lunches for our first field trip together with school. She’s been bustling with excitement that I was going to chaperone for a couple of weeks now and this evening had gotten serious with me over the do and don’ts of good parent chaperoning in the audience of her beloved teacher.

“Beards?”

“Yes- beards- you know- what you and Daddy like to drink.”

Ah yes- those. Good thing she thought to mention it, considering the risk of her mother bringing alcohol on her first school field trip with her first grader.

And with that a new entry in the family dictionary was born. You know the family dictionary, the words that your family uses regularly for everyday occurrences, certain that the rest of the world does as well? Ours includes the likes of Sistred, rascaling, story-time manners, monstering, monster-spray, seat-cart, cramera, and now beards. These were brought into our days mostly by a pint-sized Zuzu. The one whose chatter starts before the sun comes up and before she could actually speak. As Sugarplum has now entered the pterodactyl stage of toddlerhood (You don’t refer to 9 months on as that in your home?) she’s taken her sister’s lead and jumped headlong into silly strings of jibberish that can only be described as having been modeled after Brad Pitt’s lilting British Pikey accent from the movie Snatch. Much like when I saw that movie, sub-titles, would be helpful. To date phrases that have been puzzled out like “I don’t know.” and “It sure does!” in response to my clucking are a wonder to hear in this little person after having adjusted our expectations to the apraxic speech development of the Quail.

While we live with and understand the motor-planning difficulties that the Quail works hard to push her thoughts through into our understanding; we’ve become so accustomed to apraxia’s theft of our child’s words that I find myself still routinely doubting the permanence of the words the Quail and Sugarplum contribute to our days. Early on I breathed in a small circle of words from the Quail’s sweet mouth to my ears, “Ove you Momma.” One time. Over three years ago. As she laid her head on my shoulder while I carried her sweet sugar-sacked body into bed. And still I wait for those words to come again.

I know they will. Eventually.

Eventually she will speak them in the same manner that other non-apraxic 46-chromosomed little ones do. For now though, we create ways for our family to understand each other in less traditional means. With naming and telling of the Sistred’s antics to show them both uniquely and as a whole to ourselves and our community. Through rascaling-bear- cub sister’s antics where half-nelson’s are gentle enough for half-pints. Through story-time manners where there is always a free hand to lasso the chubby leg of our littlest pterodactyl as she trustingly edges her grinning self over the cliff of the bed-rail- again. To tickle-monstering sneak-attacks when a grown-up sits unawares blogging or philosophizing. To gingerbreaded- monster sprays that protect the nights and dreamlands of the biggest sister who is still little enough to be protected by her imagination. To patience and room for sisters to teach and help each other as one explains how to buckle into her seat-cart when another one insists on doing it themselves after pushing away their frustrated parents hands. With both silly and paused hugs offered up for the stills and stories captured and shared from Momma’s cramera .

With arms circled tight around my neck as a wriggling four year old, chants with soft pride- “My Momma, My Momma” again and again after months of articulating work with her Daddy on her /m/ sound and is answered with, “I know. I love you too.”

Stop.