31 for 21: Day 29: pause

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Go:

As I sit down on the little red ottoman in the girl’s room to help the Quail put her shoes on, I raise my voice in irritation for Zuzu to just get in here already. We offered to take the girls to the park and have spent the last 30 minutes gathering ourselves for what was intended to be a trip of that same amount of time just to burn off some extra energy.  Zuzu with her selective hearing is bounding through the house gathering the toys to bring along that she already knows we’ll tell her to put back. She’ll push anyways. Making sure that not bringing our inside toys to the park is indeed a rule and not just a guideline we’re likely to waver from given enough chipping away at it on her part.  As she prepares her already lawyerly defense as to why the little ponies have to come with us to the park, I interrupt her to tell her again to just put the toys down and put her shoes on. The Quail, having watched the look on my face and hearing the tone in my voice, turns from her spot on the floor and starts barking “No” to Zuzu. Clear what the rule is herself. Hearing my own gruffness reflected back through her tiny self I feel my cheeks heat up with embarrassment. Looking out over the Quail’s head into the dark hall I see Zuzu finally rummaging through the box for something with velcro just as Sugarplum toddles in to the bedroom, shoes in hand and plops down just about on top of the Quail.

“Shoe.”

The Quail repeats the word, now with as gentle a voice as the look she reads off of my face at the sight of the baby and starts to pull away from me to “help” her as I manage to press her own straps closed. Sugarplum shrieking at the Quail’s advances has apparently forgotten that she chose to sit so close to her oh, so helpful sister. Running away before the baby’s tiny hand can land in protest on her, the older girls start to dance around each other lit up by the twinkling of Zuzu’s fluorescent toes. The Quail starts pulling Zuzu’s arm away from the pile of pony’s to where the coats lay on the ground, urging her to finish getting ready in her own way.

I pull Sugarplum up into my lap and lean in to smell her freshly diapered self. That pause is enough to bring me back down. That warm, compliant, sugar sack weight of a baby on my lap with her little blonde wisps springing out of the tiny plastic heart barrette is enough to deflate my previous irritation. To remind me to look for the intention behind their actions, not just at each action. Last year when I would drop the Quail off at school I would ask how she was doing and hear examples of how she was always trying to tell the other children what to do. She was bothered when someone else wasn’t doing their work or following directions. They would frequently have to remind her to only worry about herself. It was usually told in the form a seemingly good-natured story.  Come the final IEP of the year though, those same tales were told with a decidedly different tone. They were explained to us as examples of her easy distraction, her being too hands-on with the other children. They were seen as problems.  Reasons why she shouldn’t be around the other “typical” children. This year though when I check in with the teacher what I’m told is what a good classmate the Quail is. How she takes care of anyone who is sad or hurt. She’s seen as nurturing and popular with her friends. How they love that about her and wish all the children were adjusting as well as she is.

I reach around and find Sugarplum’s tickle spot as she pulls away from me giggling then leans back in raising her arm imperceptibly for more tickles. Now smiling I repeat the word, “Shoe” waiting for her to parrot it back before strapping it on to her small foot. Setting her down the red shoes squeak with each toddle as she takes off out of the room hollering her sister’s names trying to catch up to them.

Turning off the light I head out to the car. Ready to move on.

Stop.

31 for 21: Day 27: Thin Places

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Go:

Emptying the purple backpack I find a note that the drink we usually send in didn’t make it to class today. They filled her cup with water but wanted to make sure that was ok. A month earlier there had been a similar note regarding the therapeutic straw we send in. It doesn’t happen often but a few times a year our fail-safe plans to keep the Quail from aspirating on thin liquids goes haywire in the morning circus of our weekdays. Grinning I go to the computer to reply to her teacher with our apologies and assurances that what they did was fine.

Once upon a time, it wouldn’t have been. Once upon a time there were frantic phone calls to my cell phone as I continued the morning commute into work and the need to pull over and sort through my options for getting the appropriate drink, cup or straw to the Quail before she finished her morning snack. If Lovey didn’t answer the phone when I called to see if he was at a breaking point in his schedule, I’d start to turn the car around until he called back.

For the most part the Quail has lived a typical life in a typical setting. The little supports that go into keeping her life typical though- they have been manufactured and adjusted regularly as she’s grown. Every six months her early interventionist will review an assessment to see how she’s developing and what concerns we have and what goals we want to focus on for the upcoming set of months.  This miracle worker of ours has guided us from the time the Quail was eight weeks old on up until now, taking the activities that we were blessed to be able to take for granted with Zuzu and measuring them out to the Quail in simpler steps that can be linked together so that months from the onset of a goal she can breeze through an activity alongside her sisters and friends making her efforts look easy-peasy to quote Zuzu. Most of these activities though, were not a matter of her health or safety.

Only the thin liquids were that.

When she was 14 months old we discovered a two-fold cause of her repeated, daily throw-ups- a duodenal stenosis, that could be easily corrected through a surgical removal of the membranous webbing the next month, and a series of swallowing issues that amounted to a neurogenic swallowing disorder that would take years to correct if at all. Every few months we would take her back to a speech therapist for a new swallow study to see if she was doing any better and might be able to drink regular thin liquids. Every other time she alternated improvement with worsening. The therapist finally explained that with every growth spurt, it was like she was gaining a new set of equipment and would have to relearn how to coordinate and control her swallow to prevent the liquids from going into her lungs and making her sick. We could compensate for this by thickening all liquids and only allowing her to drink from a straw-cup.

This past summer though the result of the follow up testing showed that she was controlling all liquids- meaning she could now drink plain, old, regular water, milk or juice. We still needed it to be chilled  and drunk through a straw to assist in her controlling where it went, but she could control it with those supports.

This. Was. Huge.

This meant when the Quail went off to big-kid school this fall, she was no longer at risk of accidentally aspirating if unbeknownst to us, a substitute teacher, therapist or staff member filled in with her snacks and meals. It’s one thing to reiterate to a small staff in a private daycare what they need to do to keep your kid safe from something as innocuous as water, another thing entirely to be sending her off to an elementary school with a population of approximately 800 students.  

Just as I hit send on the email to the teacher the Quail comes running back into the office with her strawcup in hand:

“Momma. Keeee—fir. Me. Drink.”

I reach down to take the cup from her. “Absolutely. Did you have a good day at school?”

“Yeah. Play. Eat. Silly!” She waggles her hands in the sign for silly as she laughs and dances her way to the fridge to pull her beloved kefir out. Easy-peasy.

Stop.

31 for 21: Day 26: breakdown

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Go:

I hear the bedroom door creak open and jammied feet pad softly down the hall. Looking at the computer screen I note that  it’s after 6 a.m. Technically they can be up now. She pokes her sleepy head into the room rubbing her eyes.

“Momma. Eat? Drink?” Her question makes me chuckle, although I turn from her until I can pull my serious face back together, not wanting to encourage this pattern. Years ago our housecat would wake earlier and earlier to eat. Eventually I learned to switch from morning to nighttime feedings so he wouldn’t wake me earlier and earlier to be fed. That’s not really an option in this scenario, although it sure would be handy.

“No, Quail. Not yet. Potty. Then bite-bites. Then breakfast.” Her face folds up in disgust as she stomps her foot and leaves the room. Only for a minute though, she leans back in to try again.

“Book?” Signing as she says it I sigh and swivel my chair back towards her. The book. We didn’t read the book last night.

In the regular 4k class that we fought so hard to get her into, a daily part of the program is a take-home book that we are to read each night and return to exchange for another one. Last week when I was visiting the school for Zuzu’s field trip we took a brief detour to go down to the Quail’s class and peek in on her. She was tickled to see us and grinned and waved from her square on the carpet as her teacher worked through the cubbies pointing out to the children who had put their things away correctly and who still needed to try again. The first group had their backpacks hung up and their orange folders emptied with the Bookflood books returned to the basket. As she edged towards the Quail’s cubby I notice her purple backpack laying on the bottom of the cubby. Still zipped tight from the morning rush.

“Quail, come back over here let’s try again.” As the Quail hesitated my helicopter’s main rotor blade starts to turn and I stand up, then sit back down, willing my hands to stay still and let the teacher do her job. The Quail walks quietly over and starts to unzip the backpack fumbling over the plush owl attached to the front of it. The teacher looks up at me and comments that her assistant isn’t in today. Usually she helps the Quail get things where they need to go. We both pause, slightly embarrassed, not really sure what to do next. Eventually I stand and go to kneel at the Quail’s cubby as she struggles with the zipper and the teacher steps over to the next cubby. I make a mental note to add having her open and empty her backpack to our evening routine.

Except , our routines are more chaotic piles of need-tos and should-have-done-the-night-or-weekend-befores  rather than orderly-lists-ticked-off-and-put-away-before-bedtime and it’s hard to add even something this simple into our small window of time between pick up from school and drop off to sleep. Still though, the ability to easily open her backpack, take the book out of the orange folder, return the folder to the bag, zip the pack and hang it on the hook next to her coat is a daily expectation in this “regular” class. It’s those little details that in and of themselves are not complicated but added up together and explained and practiced with a 4-year-old with severe motor planning delays that we stumble over until the breakdown of the steps breaks us down.

Little things that we have to know to teach her to be independent with; like climbing into our car and further up into her car seat. Buckling and unbuckling her car seat harness.  Opening the car door to let herself out at drop off.  Buttoning  and unbuttoning her coat and then easing in and out of it. Putting her backpack on and off.  Reaching up to a hook in her cubby and looping the backpack over it. Opening the container her snack is in. Articulating clear enough so that she doesn’t end up angry with the teacher misunderstanding her lunch choice and in turn even angrier when her four-year-old mind insists on not eating the lunch that she didn’t ask for even though her four-year-old body very much needs to. Carrying her lunch tray without spilling. Punching in the code to purchase her lunch, staying in the class line as they walk from one area of the school to another without lagging behind or worse- hiding when the children are called to line up. Pulling her clothes easily on and off when she has to go potty. Hoisting herself up on the potty that, while kid-sized, are still just a bit high for her small frame. Wiping after she goes so that she doesn’t end up in pain with a rash. Climbing onto the swing she loves so dearly and not falling off of it as she wills her legs to pump at recess. It’s those little things that you can’t possibly think to prepare for until you find yourself wholly unprepared. Things that individually are simple and she’s capable of and cumulatively will cause your brain to melt. That is, what’s left of your brain, you know- the portion the children haven’t already taken for themselves.

“Yes, go get your backpack. Let’s read your book.” She runs off to the pantry and tumbles quickly back into my lap with the pack as I set my coffee down and she works her fingers around the small zipper pull. This time the book was too big for the orange folder so she quickly pulls it out of the pack easily and climbs into my lap. She pushes my hand away as I reach for the book, and traces her finger over the title. “O-N-E. She sounds it out and leans back into me with a grin.

“Yes. Good reading.  O-N-E” My finger traces the invisible line hers created connecting the sounds. “One Rainy Day. You like this one right?” She nods and turns the page as we start this story we mostly know by heart now.

Stop.

31 for 21: Day 25: five minute friday: together

…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

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Go:

Turning off the shower and stepping out into the steamy bathroom I yawn. It’s too early and there is too much to do and my sinuses are pounding. It’s Friday and I have to be ready to leave for work in 30 minutes. I leave earlier than other weekday mornings so that I can return earlier and have a date with Lovey before daycare shuts down. Before we spend the weekend together as a family. The pain is worth the gain. But I miss the girls on these mornings. I miss driving Zuzu in to school and hearing the thoughts that are forming in her head, her life, her world. I miss being together. It’s these moments where it is just the two of us that I’m most likely to hear what she’s proud of, what she’s afraid of, what she plans to eat, and say, and do that day. It’s 10 minutes together and it tells me more about her then the other 23 hours and 50 minutes combined. 

“Does weather come from God or science Momma?”

“I’m scared that my teacher is getting married Momma.”

“Lucy is my best friend Momma. I’m going to play with her at recess.”

“JW got into purple Momma. He gets into purple more than anyone. I’m going to get into purple today.”

“I’m in the hard reading group now and that means that I get to pick non-fiction books.”

“I’m scared to be in the hard reading group Momma. The books are too hard.”

“Erika & Julia don’t want to play with me Momma.”

“I don’t like Monday afternoons. There’s no one to play with once the Quail goes to therapy.”

“I broke my record yesterday and got all my homework for the week done.”

“Everyone else is going to be lunchbox on the field trip Momma. I’m the only one with a school lunch. Please?”

Pushing a brush through my wet hair I peek through the bathroom door and see Lovey sitting at the computer with the Quail on his lap. She has her arms wrapped around his neck and his eyes are closed. The rest of the house is still.  I smile and quietly close the door shut hoping she won’t see me yet. I know that hug. It goes to who she runs into when she first wakes. When she comes to life and starts to tick off the morning activities on her small fingers. Before her will collides with our need. Before chaos and rush and petulance settles in feathering our best laid intentions.

When I finally leave the bathroom the office is quiet and I hear the sound of the small whistle float from the living room. Lovey and the Quail run through the daily “bite-bites”, the small acts that create big words. I move around the periphery of the house willing the baby and Zuzu to stay asleep and the Quail to cooperate while my coffee pours quickly and I escape back to the computer for a few minutes to be alone, before we are again, together.

Stop.

31 for 21: Day 24: belong

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Go:

“Quail-eee! Quail-eee!” her small chants echo down the hall as I carry her from the bedroom in the morning light. During the week Zuzu and I are gone by the time Sugarplum wakes up. On the weekends though she and I are usually the last to rise. The older girls wake before the sun most days and if I’m lucky, Lovey does too and corrals them in the front of the house. Grasping the ancient glass doorknob leading from the pantry into the dining room, I feel it thread loose and come out of the door into my hand as I try to open the swollen rectangle from its frame. Swearing under my breath I hand the knob to the baby who promptly drops it with a clank to the wood floor. As we ease through the rooms where the other children sit, it’s unclear who is more delighted to see whom. The girls jump up and start hollering each other’s names with enough gusto that one would think they had been separated by weeks and miles rather than soft snores and blankets. It is clear however that I need coffee and I attempt to hand the baby over the girl’s clamoring hands into the lap of Lovey. They pounce, Zuzu leaning in too close to press her hands into Sugarplum’s solemn face.  The baby protests the release from my hip, reaching for me and hollering over the Quail’s approximations of the words describing her morning:

“Momma. Sleep. Sug. Sleep.” She signs sleep as she says it and pats the air down with her hands indicating they were trying to be quiet while mom and baby slept.

“Maddie. TV. Me. Paa” Indeed, Netflix is set to Zuzu’s latest obsession, My Little Pony and the Ipad shows a handwriting app open to the letter H. Lovey puts aside his laptop and stands up with the baby heading into the kitchen to warm a bottle for her. We trail after him the Quail chanting, “Eat. Drink.”

Sugarplum peeking back at us starts chanting again over his shoulder, “Quail-eee! Quail-eee” now safely up high on perch in his arms to call to her sister without risking being sat on in excited response.

The relationship between these three is something to watch grow. As the baby becomes more verbal, she has managed to learn the Quail’s name before Zuzus. Yet, she often seems understandably more comfortable with Zuzu’s handling of her than her exuberant four-year-old sister’s attempts to “mother”. I would guess it stems from the fact that the two younger girls spend their mornings together when Zuzu and I head out into the day. She physically hears the Quail’s name more frequently than Zuzus, so it comes more easily to her.

Yet there is no denying the bond that threads the triad together. When the Quail first moved into the one-year-old room at her pre-school she started spending her recess time out on the sandy playground just a fence away from her idolized big sister. In turn, Zuzu would frequently bring her own gaggle of girls to the fence and holler for the Quail if she wasn’t immediately there. This group of girls would keep their eye on the Quail and were loud and quick to flag down a teacher at the impending threat of a big kid snatching the Quail’s toy or playing too roughly with her. Often when I would arrive at the end of the day to pick them up my heart would be warmed with stories of how they would hold hands through the fence during their recess-time.

Then one day one of the gaggle girls approached me at pick-up eyeing my very pregnant belly.

“Ms. Cole- what if Zuzu likes the new baby better than the Quail?”

I stared at her silently, reminding myself that this was an innocent only-child’s question. Not something to be read into with a deeper meaning and concern regarding sibling relationships when a disability is involved. This was not a question of the Quail’s worth in our family, the community, our home or this school.

She simply wanted to know if it was possible for one sibling to like another more.  

“I don’t know dear. Zuzu loves the Quail AND she’ll love Sugarplum (Zuzu had already named her this by my third trimester). Sometimes sisters get along and sometimes they need some time apart.”

My voice trailed off as the friend raced back to the swings that had opened up and Zuzu came running towards me letting me know which of the therapists visited the Quail that day at school and how she had said hi to them and wanted to know when they could come to babysit her.

This past week though, a new chapter in their story started to unfold mirroring the past. As I stood holding Sugarplum to have her face wiped down her teacher told me how Sugarplum now comes to the fence and hollers “Quail-eeee!” AND “Zuzu!!” until she catches their attention and they run in tandem to her to reach their small hands through the metal into hers.

These girls, they love each other. Their relationship is tender and volatile and intimate and easily taken for granted for now. They don’t question who loves whom best and who can do what. They slow their own pacing naturally to catch each other up in their play. They carry one another, physically and emotionally. They fight. They resist. They love. They depend.

They just are.

Stop.

31 for 21: Day 22: art-work

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Go:

“You want to show Momma?” I hear the question come through the open door as I sit nursing the baby.

“Momma. Yeah.”

She comes into the living room and spying the baby in my lap, immediately drops her construction paper while she starts to wiggle onto the couch pressing her kisses up against Sugarplum’s damp head. In return, Sugarplum frees her hand from the gauzy Aden & Anais and pushes her away, half territorially, half in jest. Looking down and seeing the baby’s eyes glitter as she grins around me I decide to not intervene for the moment.  

“Show me Quail.” She climbs back down off of the couch and picks up her artwork grinning as she holds it up to me. In the bottom left hand corner is her name written with green marker in her newly developed four year-old-scrawl. The coordinating stain on her shirtsleeve confirms it as her work.  In the center is a bright orange jack-o-lantern. Cut. Painted. Pasted.

A simple piece of kid’s artwork.

Except that it isn’t quite as simple as it first appears. In reality, more work than art.

This bright, seasonal piece is the work of a therapy session. Occupational therapy. She would have been refining her fine motor skills for a good piece of the session, most likely over multiple sessions to finish this. She would have had to verbally identify the paper color with enough articulation to make her choice clear. She would have been asked what color a pumpkin is and had to locate the paint that looks just right. The painting of the pumpkin itself would have been pure pleasure for her now. If there is one medium that inspires this girl it is paint- oil, acrylic or water no matter. Pull out a paintbrush and she would even turn off Barney willingly. The fact that she can swish enough water on the brush, then visually aim the brush to the small oval of orange, coaxing her arm to move the way her mind knows it should, next coat the brush and apply it mostly within the black-pre-marked picture with ease- well that’s a testament to the amount of time she has spent practicing. Once the paint was dry enough the tough task would have begun. Holding the painted page in her left hand she would slip her forefinger and thumb into the child scissors, now the ones that she has to open and close independently, having graduated up from the ones that spring back open on their own and carefully turn the page as she cut so that her scissors are able to follow the black outline of the pumpkin. Once her pumpkin was cut out, she would have needed to be able to open the glue bottle, turn it upside down and squeeze with enough force to get the dots from bottle to page.  I don’t know if she drew in the face. That isn’t a skill I’ve witnessed yet. But once the picture was complete she would have been expected to write her own name in the corner, also a hard-earned, recent skill.

Literally years of weekly practice at what most of us would consider work. But to her- it’s art, and fun, and playtime and a pumpkin picture- just like her friends make that she was asked to sign her name to and that will spend the fall season on our refrigerator, magneted next to the family tree Zuzu brought home. Or at least it will be hung there. Considering the emerging fine motor skills of her baby sister, odds are it won’t remain for long.

Maybe- more art than work.

Smiling at the picture I ask- “Did Jodie help you with this?”

“No.”

“Did Ginger help?”

“No.”

“Ms. Jan or Amanda?”

“No.”

Finally it occurs to me that all of these skills that have been bundled into this simple picture- those would have come from her public school class.

“Ms. Lee or Ms. Dobson?”

“No.”

“Ms. Patty?”

“No.”

“Ms. Tricia?”

“YEAH!!!!”

I grinned. That was the last person I expected based on the most recent progress report we received on her IEP. It had appeared that perhaps our Quail was not being, shall we say- the most cooperative- with her new school OT. I’d been intending to send her a note, making sure she knew that what the Quail was able to do so that she wouldn’t be snowed into thinking she was not capable. The Quail, if she knows you’ll help her, she asks for it.

I’ve yet to confirm if this was the case, that she did all of this with the new OT, but regardless of what I find out, the fact of all of that work that went into this art still remains. Her pride in her work still remains. Her pride in her art still remains. The picture still remains. The promise of more to come remains.

Now- more art than work.

As I start to praise her efforts and progress, the Quail reaches over to snatch Sugarplum’s blanket. The baby roars up with her own tiny but fierce protests. Zuzu comes clamoring up on the couch grabbing for the remote. At the end of a long weekday they are back together and more pressing matters like whose turn to choose a show it is and whose lovey is being handled by a sister. I swipe the pumpkin picture up from the squabble just as the Quail lets go of the blanket. Zuzu starts up Netflix and the Quail starts chanting Barney over Sugarplum hollers for Elmo. Heading back into the kitchen I pin the picture up to the side of the fridge and reach into the cold to start dinner before the triad notices it hasn’t been served yet.

Stop.

31 for 21: Day 21: (3) on the 21st: A Blog Hop

photo-11-e1374422584166

 

This monthly blog hop is a community project created by one of my pals Meriah over at With a Little Moxie.

One truth (about Ds/our lives with Ds): The fact that your child has Down syndrome is not a reason in and of itself to not have any more children.

When word got out that I was pregnant with Sugarplum, not all the responses were what one expects to hear in response to a pregnancy announcement. Don’t get me wrong, there certainly were plenty of folks that were thrilled for us, and sent their congratulations. And for the most part, that’s what I remember, the gracious generosity surrounding the welcoming of Sugarplum. But, then came the warnings, from “well-meaning friends”.

“Just so you know, don’t expect everyone to be happy for you. Since you already have a child with special needs, some people think it’s not good that you are having another.”

I probably shouldn’t put that in quotes. Those weren’t the exact words. It was the sum of the message. Behind it were thoughts that we were crazy to have another, because couldn’t we already see- one child was born with a disability. Why would you want to risk that again?  Other’s thought we were selfish- poor Zuzu already can’t possibly get the attention she needs with all of the Quail’s needs, and now you are going to add to that? And what about the Quail- considering all you do for her how could you possibly have time for another child. Surely you’ll quit work to stay home with your children now!

Those statements, those are all speculation, opinions and worry. They aren’t truth, at least not mine.

The truth is we have little spare time in our day. The truth is our days would be jam-packed if the Quail didn’t have Down syndrome- that time spent going to and practicing what we’ve learned in therapy- well we would fill it with something else. Those visits don’t bother the Quail- she enjoys the activities in therapy, the therapists, the time out of her day going somewhere with her Mom & Dad.

The truth is, we worried too- but the fact is- you find the time to do what you need to do- and whatever might be taken up in terms of one on one time from a child when a sibling is added to the mix, is more than made up for in love.

This is our truth- our three girls- they love each other. They play together. When one of them rises in the morning they ask after the others. When one of them is sick and misses a day at school, the others want to know where she is and go straight for her the minute they return home. When one of them has a solo activity, the others pipe up with an eager, “Me too”. This past week we had Zuzu’s first grade parent-teacher conference. Zuzu is, well to put it mildly- “in charge” most everywhere she goes. Sometimes this comes across as leadership, sometimes as a Bossy Bessy doll come to life. But the fact of the matter is, she’s good at taking charge. She’s still working on finessing her approach, but she’s good. And a large part of that comes from being the eldest in her Sistred and having been given the opportunity to help out with her sisters in a variety of ways. No she’s not obligated to do any particular thing for the Quail (or Sugarplum for that matter). But she sees the intrinsic reward in being a helper. Her teacher told us unprompted-

“I’ve seen Zuzu with her sister- she’s so attentive and kind and patient- that carries over into the classroom- it’s what we see with how she is with the other students- she is good with them. If I need help- I know who to ask.”

This isn’t a one time compliment either. Her dance teacher used to praise, “If I can get Zuzu to her mark- the others follow, so I focus on her. She’s my helper.”

And last year in Kindergarten, “I always give the substitute teacher Zuzu’s name, if I’m out she could run the class.”

And in her daycare, “I hope you don’t mind, but I’ve asked Zuzu to help teach him his site words.”

And Zuzu, when she tells me her version of the above examples, it’s with pride, self-confidence and expectation. Like any seven year old- she has her moments where she’d like no one to touch her toys, her clothes, her homework. She has her tantrums, her whines, her complaints. But more and more, that’s not the sum of her, more and more I see that she is showing the world what she is capable of and what she knows about how we treat others.

The impact on Sugarplum is yet to be seen, but to date I can say she’s the most light-hearted of all of us. The one quickest to smile, the most content, the most laid back, equally strong-willed and equally happy to take part in her sister’s antics.

The truth is, all three girls are an integral part of our family.  Our lives are chaotic, crazy busy and we have more to do than time to do it. And I wouldn’t have it any other way. Except, maybe with a few more hours of sleep and a few more home-cooked meals….

 

One tip (information on something related to Ds/raising a child with Ds/or just parenting in general).  That’s not to say that you shouldn’t pay attention to the impact of disability within a sibling group. You should, the truth is that it isn’t a given that it is a bad thing. How each child responds to the fact of disability in their home though- that is something to help them understand and work through if you notice they are struggling. There are a lot of resources out there- but one of the most helpful is the work of Dr. Brian Skotko. Below are also some links to research regarding siblings and Down syndrome.

http://www.down-syndrome.org/research-highlights/2043/

https://www.ndss.org/Resources/Caring-for-Your-Family/

http://www.sheknows.com/parenting/articles/981881/siblings-of-children-with-down-syndrome

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31 for 21: Day 20: Boundaries

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I roll my eyes to the ceiling as I hear the squabble start down the hall.

“Momma!!!!! The Quail spit at me! I wasn’t doin’ ANYTHING!!! And she just spit! MOMMMMMAA!!!!”

Sighing, I pull my flat-iron through my hair once, twice, three times. The sound of feet running in two different directions fills the office.

Just as I see the ruffled edge of the Quail’s nightgown through the cracked bathroom door I hear another door slam and Zuzu scream in frustration. Leaning my head through the door I look the Quail in the eye and raise my finger to my lips. She answers in return with her own raised finger, “Shhhhhhh….” Too late, the baby cries out from our room and we all stand still as statues pretending we weren’t the one to make that last sound that roused her. I want to tell Zuzu to stop storming. I want to tell the Quail to never spit again. I want to tell them both that it isn’t even 7 a.m. yet and I haven’t even finished one cup of coffee. I want to drink three cups of coffee. I want to send them all back to bed and start over.

Instead I reach out and the Quail’s hand locks in mine automatically. “Come on, come say sorry to your sister.” I feel the slight pull as she considers refusing and the release as she decides a stern Momma’s attention is better than none at all and follows me silently back to her room.

When to intervene and when to let them work it out is a riddle to me. I talk too much. I say the wrong words. I say them too loudly. I say them too often. I nag. I coddle. I cajole. I threaten and I warn. I take away privileges. I step in. I turn away.  I say I’m sorry. I instruct them to do the same. I lift them up and I let them go. I mother. I parent. I boss. I love. I’m at a loss.

Zuzu, she’s bossy with her sisters. And she’s loving. Her voice has turned from hard edged to charmingly coaxing when they aren’t following her pied piping these days. She takes the model of her kindergarten and first grade teachers and plays out her own school days in little dioramas of her toy-filled bedroom. The change is noticeable. I’m fairly certain it hasn’t come from my instruction either. She’s learned the power of honey over vinegar and is harnessing it in her own time. Still ever so delicate in heart, she’s not one to be mean. Bossy. Instructive. In charge. Yes. Mean no. When someone takes her toy, calls her a robot, says they don’t want to play My Little Ponies or Barbies, her heart is truly crumpled and she pulls back with a sour look until she can find her way to melt back into your side.

The Quail on the other hand. Is usually the first to follow the teachings of Zuzu. Where Zuzu goes, she goes. What Zuzu does, she does. What Zuzu eats, she eats. What Zuzu dresses up as for Halloween, she dresses up as for Halloween. On the other hand. She’s not one to be told what to do. That decision to take her sister’s lead- that’s all her. Should Zuzu take her toy. She shouts No and takes it back. Should her sister’s turn on the swing go on too long. She stares her down till she “chooses” to give her a turn. Should someone say she can’t come in the sandbox to play , she pulls their pigtail down to the ground and sits on them. Should her sisters include her in what they are doing, her grin cracks wide open lighting up her eyes and the hearts of those around her. She may not always be able to articulate exactly what she wants, but she is crystal clear in what she loves and hates.

And then along came Sugarplum. This sweet and quiet plum of a baby woke up one day this summer and came into her own. What was once a quiet, serene, easy-going little sweetie-pie was no longer willing to give up her toys and books at the whim of an older sister.  Much to everyone’s surprise one day when the Quail sat down on the pink Dora couch next to her and reached over to pluck the book she was looking at from her pudgy hands, her own cheek was met with a small slap and a quick, “No!” The pause in the room was palpable as Zuzu looked up from her Ramona & Beezus chapter book and the Quail let go. Even Sugarplum seemed surprised at the effect of her small might. 

Strong-willed they say. In equal yet different parts. The Venn diagram of what that means in their relationship is still being worked out among them.

For now, we kneel down between this triad and issue reminders that we don’t hit, we don’t spit or bite or sit on our sisters. We are kind and gentle and helpful to our family and friends. That it is ok to be angry, and to be sad and to be scared and frustrated. But it isn’t ok to take it out on each other or to take what’s precious to one another away. We ask for a turn. For now, we hug and sign our apologies and move on with our day. Until the next storm comes, the next squabble erupts; the next rascaling match needs to be broken up and sorted out.

Stop.

31 for 21: Day 19: Thank you.

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I sit here grinning ear to ear as emails pop up on my work computer screen with a multitude of compliments on how gorgeous our grinning four-year old is from people around the state that I have never met before.

I wasn’t sure I could do it. I wasn’t sure I could or should step out of my comfort zone and ask the state Commissioner for Vocational Rehabilitation to sponsor a statewide fundraiser for the local Buddy Walk. With all of my experience advocating for people with disabilities, my vulnerability rises to the top when it comes to putting myself out there still. It’s one thing to do my job. It’s one thing to step in and facilitate a situation that I see my children needing help in. It’s one thing to donate my own time, money and energy. It’s something else entirely to put yourself in the position of asking others to help you.

Three years ago a co-worker who had just finished coordinating her own Jeans Day Fundraiser at work stopped by my office to ask if I had considered coordinating one related to Down syndrome. She noted that our commissioner and our senior staff were fond of these fundraisers as it was both a great way to boost morale, to come together as an agency and to contribute to our community around us. Everyone enjoys wearing jeans to work and for a mere $5, a person could make a donation to the sponsored charity and together we would as public servants stand with those in need in our community. I smiled and said I would try to put something together. The next year she stopped by again after another successful fundraiser and mentioned it again. Again I smiled and made a note to draft a letter requesting this. As a family we had participated in our local Buddy Walk before. We had made our own donation, just as we had happily donated when friends and family asked us to with other charities. There is a sense of power and benevolence that comes with being the giver- it makes you feel good about yourself and the larger community you are a part of. There is a sense of vulnerability that comes with asking for help. And as the mother to a child with special needs, there isn’t much time for vulnerability in my day or make-up. Last year I managed to put together a blog post and share it on Facebook. I kept it up in the weeks preceding the Buddy Walk and by the time of the walk last October, our friends and family had come together to donate over $600. As a family we were humbled and awed by their love and support. Because as vulnerable as you feel asking, the warm glow that fills you up when you get the note of a new donation outweighs it. Just before last year’s walk I put together my proposal and sent it off to my supervisors who kindly approved it and passed it on to the Commissioner. A few days later I received a phone call from the administrator for the Commissioner exclaiming over the proposal. She told me she was putting it to the top of her list for the coming year and that it was just what the intent behind the program was- to support our family of employees in their communities. I was thrilled.

As the details got worked out and the date grew closer the email announcement of the fundraiser was sent out statewide. Within the first hour I received the first of several emails:

“You don’t know me, but I just have to reply…  Your daughter is beautiful, and I love her happy smile!  I am glad to participate in this one!”

I grinned and sent a quick thank you for her kind words. 30 minutes later came the next one:

“Hi Nicole – I work in Human Resources – I walked in the Buddy Walk here in Columbia a couple of years ago in support of Lily who attends the school my kids go to.   Love to support this organization!!”

This time a tear welled up. As the fundraising day grew closer I received a couple more and quietly grinned at the framed picture of our Quail on my desk. How far this little girl had carried me from being the new staff member fumbling through my back-breaking stack of training manuals  ten years ago to today.

Over the next several weeks the donations arrived and folks stopped by to check in and see how it was going. In total we received $1210 from SCVR. Friends and family also donated an additional $500.

When the donations finally trickled off I put together a thank you email to go back out to the staff. It’s hard to express the deep, heartfelt appreciation that had grown for me over these small acts from individuals that I both knew and didn’t know without it sounding cliché. When the thank you email went out it of course included pictures of our girl- both at the Buddy Walk and my current favorite that to me exudes the light and spirit that makes her up. The email went out at 2:15 pm.

At 2:47 I received:

“Every hair on my body is standing on end as I read your heartfelt comments, Nicole! What a lucky child is darling Abby to have  a mother like YOU!”

At 2:51:

“These are great pictures that really capture her personality.  She is so beautiful.  Thank you for sharing.”

At 2:57:

“She is so obviously devilish.  A real cutie pie. “

At 3:06:

“She’s so pretty! You and Charlie do good work!”

At 3:08:

“Hello.  If those pictures in the Jeans Day email you sent were of your daughter, I just wanted to tell you she is absolutely beautiful.  The picture of her with hands by her face is precious.”

At 3:09:

“Is that your little girl in the pictures? She is like the cutest thing ever! She is so precious!!! ( I have a little girl too, I’m very impartial!) ;)”

At 3:14:

“Abby is beautiful.  I miss your work newsletter—I was able to watch her grow :)”

At 3:22:

 “Absolutely adorable—go Abby!”

The simple act of those words- these people having taken the time to send encouragement, love and kindness to someone they don’t know after having given already of themselves.. .I was floored. It’s not professional to tear up at work. That said, the human kindness in a place of business letting you know that they see you and your family in a time of need- is priceless. Sometimes you have to push past your comfort zone to find an even softer place to land.

I know I did.

I am so very grateful to all those out there that took the time to stop, read about and look at the face of a child, our child, who represents both herself and the larger community.

Each person who sent in $5- together it added up to well over $1000 worth of support that will go to further advocate and encourage awareness on behalf of those with Down syndrome and their families. Not only was money contributed by these efforts but a sense of community grew out of it. As the mother of a spunky four-year old who has Down syndrome I am heartened by all of the generosity, support and kind words of all of you. It’s this awareness, support and inclusion that is changing the world we live in ensuring that individuals like the Quail have every opportunity. The fact that this extends beyond her is a wonderfully synergistic  and reciprical opportunity that benefits both those who gave and those who receive.  It shows our community of people who my work serves on a daily basis the heart of the workers processing their claims as well as putting an actual person to the claims that pass over their desks.

From the bottom of our hearts to the top of yours. Truly, we are humbled. Thank you.

To those that still wish to donate, Abby’s Buddy Page will be staying up year round:

http://www.dsfagreenville.org/buddy_list/abigail_starkey.html