31 for 21: Day 3: awareness*

“When Mrs. C asked me me how I felt about having the Quail in my class next year I said I was so excited! I used to talk to her last year quite a bit when I would see her. I just love her. I know I’ll learn so much from her.”


The Quail’s new first grade teacher’s sincerity brought tears to my own eyes. All summer I had been wondering if this next school year could possibly live up to last school two or if they were just flukes. We’d had our share of pushback in getting a spot for the Quail in a typical classroom. But once she entered that classroom on the first day of her 4k year  her educational team was all in. She’s made friends, gone on field trips, attended birthday parties and playdates. She’s become a Daisy Scout, a dancer, a soccer player and a football fan. She’s learned to read, to write and works hard on her math. She leaves my car in the morning, grabs her backpack, hollering a cheerful, “Bye Mommie! Uv oooo!” as she scans the sidewalk for familiar faces and marches off following her sister. Some days she’s good. Her star chart blooms shades of blue and purple stars. Most days she’s average and tells me about her green star she earned and what she ate for lunch and which activity she went to. Occasionally, she’s naughty. She won’t listen. She’s stubborn. She kisses a boy. But mostly she’s just a kid. She’s shown her community that she really is that…a kid. With good days and bad. With strengths and weaknesses. With talents and enthusiasms and fears and love. By just being herself and showing up. She’s created an awareness that wasn’t there before. She’s made something that was different and scary and historically unfathonable- having a non-typical kid in a typical classroom ok.


Last fall her kindergarten teacher emailed me to ask how we would feel about the school doing an awareness campaign and fundraiser about Down syndrome during the month of October. I was both for and against it. It’s one thing for us to raise awareness indirectly in cyberspace. To not confront people and make them listen, but rather to do our thing day to day with open arms and hearts and minds creating a space for others that are curious to feel comfortable asking a question. It’s another thing, to take a small child and make her the center of a campaign that points out her differences to those around her everyday. I’m not naive. I know 99% of the people that look at her think, “Down syndrome” when they see her already. But children are different. Children don’t naturally categorize different as other and something to avoid at this age. That comes later when they see how society tells them to act. And I admit I was more than a bit fearful that this campaign could single her out and make her self-conscious. As the month progressed we were kept up to date on the funds raised and the facts of Down syndrome shared. The Quail’s class challenged the other classes to bring in “Dollars for Down syndrome” which were given to our local advocacy organization. Zuzu’s teacher told me something that was an unintended side effect, this awareness campaign lent a voice to Zuzu. As her classmates brought in their dollars they often brought them directly to her letting her know they cared. Zuzu in turn would check in with her teacher to see if there were any new donations and then throughout the day, unbidden, go up to each child who had brought a dollar and thank them and tell them a little bit about Down syndrome in her own words with her own understanding- about how Down syndrome is different for everyone that has it and how you know that some kids wear glasses to help them see, well her sister does exercises called bite-bites to help her talk easier.

I heard about this in November. After it had occurred, and was such a matter of course for Zuzu that she didn’t even think to bring it up. For her it was just natural.DSC07267

Our family was invited at the end of the month to an assembly where the total raised was announced and a special guest speaker from the ClemsonLIFE program, a young man with Down syndrome, came to speak to the school about the importance of never giving up and always believing in yourself, because if you tell yourself you can do something you eventually can. For him this was attending a college. At the end of his slide show everyone cheered, Zuzu, who had asked to sit with us rather than her class, ran back to her friends, the Quail clapped, hugged us and ran off with her classmates and we offered up our thanks to this small community that had made a space in it for our girl. And had helped the others who spend their days with her understand that even though she may speak and learn differently then them, she really is just another kid.

“You’re going to make me cry. I don’t think there is anything kinder that a teacher could tell a worried parent then that they are happy to have your child in their classroom. Thank you.” Wiping the tear back, I leaned down to the Quail and asked her if she remembered Mrs. S from last year. Nodding shyly, she scooted out from behind me and walked over to Mrs. S and gave her a hug.

It looked like things just might be ok again.

*Technically today’s prompt from The IDSC was “Down syndrome Awareness shirt”. This right here is one that the Quail went to school in quite a few times when we first got it. I think just her wearing it and living her life, shows what we think.awesome


Growing, growing, gone….

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

“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.

31 for 21: Day 30

“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:








31 for 21: Day 20

10628113_10204706246275001_7232160816180901834_nHer 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.

10378244_10204299764433209_8943734468190431912_nEven 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.

10454924_10204633619859386_2652745411715658649_nIn 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 15- corner view: rough

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.


“Quail. We need to talk about drop-off, ok?”

She ducks her head and scuffs her purple shoe back and forth. I’m sitting on the floor in front of her doing my best imitation of placid…

The Quail looks guilty and irritated. Clearly not happy about what I want to talk about. I started dropping her off at school approximately two years ago. I admit- taking a three year old to school, it took something out of me. The staff at the school were beyond kind and accommodating. Each day on the drive there we would sing and talk and practice our A,B,Cs and 1,2,3s. We used that time to connect and practice her approximations and articulations in an environment free from sisters proclamations and involvement. She loved those rides and so did I. When we would pull up to the school we were allowed to park in the lot, avoiding the drop-off line while her teacher came out to meet us. Sometimes walking with her, sometimes carrying her- always greeting her with a hello, how are you and talk of the day to come. For the most part the Quail enjoyed the drop-off. She would have momentary lapses of shyness, but she generally played along nicely. The next year drop-offs weren’t my job. She was spending 5 half-days at school, but they started mid-morning so the public school bus would arrive at her daycare each day at the same time and Ray the driver would greet her and off they would go. I was told the driver and assistant loved their jobs and would sing and count and talk with the children. The Quail loved Ray so much that her teachers told me how one day the district switched the bus without any notice and as the Quail stepped out of the daycare doors and saw a bus that was clearly not hers she stepped back saying, “No bus. Curley’s bus. No Quail bus.” She only agreed to get on at the point that Ray stuck his head out calling her name, at which point she cheered and ran over to him. At the end of the year, I met a mother of another kiddo in her class and she talked about how each day when she met the bus with her own son she would see the Quail peering out the window at her and would wave. The Quail looked at her stoically until one day in the late spring, she waved back. The  mother smiled back. This small act made her come up to us at the 4k graduation to tell us about it and how much she looked forward to seeing the Quail each day. That she just looked so capable and independent.

Earlier this fall, a mutual friend asked me to give this same woman a call. She had given birth to  a baby girl over the summer. Her fifth- and the sweet little girl was diagnosed quite unexpectedly with Down syndrome. When we spoke she told me that within an hour of her infant being born she looked at her and wondered if she might have Down syndrome and her next thought was of the cautious little girl on the school bus who one day decided to open up to her and wave back. She said she hoped that life would be as good for her daughter as it seems to be for the Quail. This filled my heart and eyes. That the Quail had provided hope for another little one and her mother just by being herself out on her own in her community.

This year the Quail is in school for a full day. Which means she now gets to go to and from school with her sister. Both she and Zuzu have been planning how this would go throughout the summer months. They traded lunch boxes, parceled out who got which dresses from the bi-annual consignment sale, traded seats in the car and talked and practiced endlesslyu about when and how these drop-offs would work. Lovey did the first week of drop-offs and for him there were no issues. They drove up, Zuzu got out, then the Quail did and everyone went off to their days. Then I started the drop off. I pulled up. Zuzu reached over to help undo the five-point harness that we still strap the Quail into and the Quail protested. She wanted my help. Easy enough. I put the car in park and leaned back and undid it. Zuzu got out, the Quail grabbed her backpack and then balked. It was a long step down. So Zuzu stepped in again, took her backpack from her and offered her hand. The Quail squawked at her, but climbed out. I slowly pulled away eyeing them through my rearview mirrors. Ignoring the cars in line behind me that surely wished I would just pull out already. The girls weren’t moving. Zuzu looked irritated as she tried to coax the Quail to come with her. I finally pulled into a parking spot and got out to watch. As it continued I got more anxious and just as I started to walk up to them, the Quail acquiesced and in the building they went. The next day we all repeated this scene. And the next day more of the same. Then I happened to ask about what happened when they went in the school. Zuzu happily informed me that the Quail refused to get up to go when the kindergarteners were called and loved it when she took her to her classroom. As I mentioned earlier– I had laid down the law about this. The Quail needs to learn to get there on her own and follow the expected routine. That didn’t go over well then, and it continues to not go over well now.

We were out the other weekend when a friend came up to me chuckling about how he was initially worried when he pulled up to drop off his kids and saw the Quail standing on the sidewalk but our car gone. He explained that there were about 10 children milling around her trying to convince her to go inside. Sigh. I felt simultaneously annoyed and grateful. Annoyed that this routine is not the routine I think it should be- the routine that safely delivers her from our car into the school building filled with in-charge adults and grateful that she has become so ingrained in her community that others don’t just walk on by. That they stop to talk and lend a convincing hand. And considering we pick her up everyday at the end of the day- all has been well in the end. It still worries me though. She’s never been a runner. Neither at home or out and about. But still. I want her to just get out of the car and go inside. I already gave in to the fact that her sister likes to walk her to class, the teachers think that is fine and the Quail thinks that is fine. After watching her for a few days I realized what was going on. She was looking for her friends. One day Miley got out and they ran off into school together. Another day it was last year’s classmate Hunter. I heard him call her name and as he walked up they joined hands and went in together. Another day as I was squawking at her to get out of the car already- dear Mrs. P- Zuzu’s former teacher popped her head in asking if we needed help. The Quail turned on the charm and reached right out to her. Another day it was her own teacher from last year. People are wonderful- they really are taking care of her. Still though- I find this drop off rough….the roughest part of this entire adjustment from a preschooler to an elementary schooler. The feelings I had watching Zuzu walk off into the school by herself that first year are just amplified by all the what-ifs that I’ve trained my mind to watch for and problemsolve before they actually reach that level. It’s rough to settle my own feathers and watch her spread her wings. And it’s rough to know when to helicopter in for a landing and when to hover further back.

In the meantime while we continue to work this out- I’m grateful for all the feather smoothing our community has been providing for us.

…”So I need you to just go inside when you get out of the car. Ok Quail? If your friends are there you can walk in with them, but if they are not, you are to go in with your sister and not wait for someone else to walk off.- Got it?”


“So what do you do when I pull up to the school?”

“Get out.”

“And if you don’t, what will happen?”

“Momma angy. No cake. No TV.”

“Right. But you know to go inside right? No more waiting outside- Go. In.”

“Yeah!!! Go in!” She does a little dance and leans in plumping my cheeks with her hands as she rubs our noses together and I finally grin. She lets go, grabs her backpack and as she swings it on her small shoulders hollers for her sisters.

“Bye Sug! Zuzu come on!”

31 for 21: Day 11

“She’s a beat behind is all. Really that’s all I saw.”

This news came about a year ago from a friend who was subbing for the Quail’s 4k class. I blinked when she told me that. A beat. A pause. A showing of her motor-planning getting the best of her for the moment.

“When it came time for snack and a drink her friends told me that her cup was in the fridge, but when I turned around to get it she was already there opening the door to help herself.” To help herself. She was in her class and helping herself. Following the routine that she knew from the days she had spent there already. When the children danced- she danced. When the children recited both The Pledge of Allegiance and the State of South Carolina Pledge, she put her hand to her heart and turned to the flags. When the children lined up- she lined up.

Or mostly so. She went to the back of the line giggling in an attempt to start a round of hide-and-seek in the classroom. When Mrs. D told us, we were as concerned as she was. Maybe more. A big part of public school is learning to follow the rules- the rules that keep things organized, fun and safe for everyone. This slight deviation from the organized chaos was really only a concern in the event of an emergency if the chaos were to become unorganized. We would have to talk to the Quail about this. She was already familiar with our family’s well-worn mantra, “There’s food time and there’s play time.” We would have to adapt it to there is “There is listen and line up time and there is play time.”

“I’m so glad you pushed against the school’s concerns.” This came in an email from the teacher after having been with the Quail for a good bit of the school year. “The Quail is very popular and has a lot of friends. She is nurturing and takes care of anyone who is sad or hurt. We love that about her.” “ She is doing very well in the classroom. I wish all of the children were doing as well as she is.” Those words let me breathe out. It’s one thing to be philosophically certain of your stance on an issue, such as say- inclusion. It’s another thing to stand back and watch it play out in real time as it wavers between validating and mocking your intent.

But it went well. Put simply- she did fine. I expected less than fine. I expected a bumpy transition. I expected multiple meetings and whispered warnings of this good thing coming to an end. I was prepared with the legalese in the recesses of my brain for any hint that it wasn’t going as it needed to. The Quail- she didn’t need to keep up- that beat, that pause…that was fine. She just had to make progress. That’s what the law requires, what the law allows for and as the previous principal had stated after much scolding and scuffling-in the well-orchestrated dance of an IEP, they will meet her needs individually and legally.

And so they did.

But they did more than that really. They met the Quail with open arms and hearts and brought her into their classroom, now her classroom into her community and welcomed and loved and taught her. She learned so very much last year. The progress- while subtle, was undeniable. Her happiness at getting to go was undeniable. She wanted to be there. She was happy to be there.

I really didn’t have much to say about the school year as it progressed. The weeks went by smoothly with very little back and forth in the adjustment to half days of school, bus rides, lunch ordering and learning to read. In the early spring, we did receive a phone call from the therapists, one day the OT, the next the PT. Both asking for adjustments to the IEP. The Quail- she did not want to leave her class to go with them. Once in the hall, she dallied. She danced. She did everything but walk in an orderly fashion from the class to the therapy room. That first call day she had plopped down on the floor. She wasn’t getting up. She wasn’t moving. And this was a problem. As the therapist detailed the specifics to Lovey over the phone it came out that it had been an issue for a while now, the Quail’s not wanting to leave her class and her friends to go with them. Some days worse than others. The IEP progress update that came home later that month indicated a lack of willingness to not only go to the other room, but to do the work asked of her once in it. Ironically her report card from the regular class had also come home and showed good marks in most everything except the ability to articulate a clear sentence. It seemed she was acing K4 and blowing Special Ed. Later when we met with Mrs. D she talked about the day we had gotten the phone call. That the therapist had been expected 20 minutes earlier and hadn’t shown. That when she did come, the Quail had already had her coat buttoned and was in line, in clear view of the playground- ready for recess. That was what had made her angry. That is why she had plopped down. That was also why therapy is so important- maybe, just maybe if she had been able to articulate what was upsetting her- maybe, it wouldn’t have just come across as bad behavior. Maybe. I don’t really know. The irony is that 2 of the 3 goals on the IEP- well they were playground friendly. The therapist could have worked on those on the playground rather than turning the hallway in to Thunderdome. The update to the IEP helped. They asked permission to move from individual to small group therapy. Once the Quail befriended the little girl, things went back to the typical chaotic calm.

We survived that week. I can’t say that things got tremendously better with the therapists. Notes on later progress reports seemed to center around “working on compliance”. Which I read as therapist speak to explain why little else was getting done. In spite of that nothing peaked or boiled over though. I ran into the district’s behavioral specialist at a gathering at one point and introduced myself. She told me she was aware of us, but fortunately hadn’t had the “pleasure” of being called in to formally meet the Quail. For that we were grateful. Nervously grateful.

In addition to the books, art projects, pictures, songs and dancing the class put on 3 little plays- a Thanksgiving Pilgrim and Indian one, a Christmas Gingerbread one and a Cowboy salute at their mini-graduation. I’m proud to report I cried my little heart out at each and every one. The Quail- her little star shown up on stage as she danced and sang and cheered and bowed. She was all in. And for that super start to her educational career- we remain grateful.

five minute friday: hands

…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.



“Quail- do you want to go see your sister’s end of the year show this morning?” Her face lights up as she hollers yes, jumps twice for good measure and starts to tell the baby what is on the agenda. These sisters- they are there for each other. They don’t think about it they just are.

As we press open the weighted door to the first grade classroom I spy Zuzu sitting criss-cross applesauce by a set of desks close to the door. Our eyes meet and crinkle simultaneously as we slip into the full classroom near her spot. We are headed to a therapy appointment for the Quail within the hour and Zuzu’s teacher generously offered to let Zuzu’s group go first for their Reader’s Theater performance knowing how much it would mean to Zuzu that we are there to bare witness. Her group reads “The Fourth Little Pig” and Zuzu narrates her highlighted sections from her paper script. When they finish she rushes back to the area we are seated in and presses herself as close between the two desks separating us as she can manage so that she can momentarily bridge the gap between her school and home life. As the last group finishes up and I reach to the desk to set the camera down I see the girl’s hands entwined under the desk. The Quail’s small hand gently stroking Zuzu’s skinny fingers as she grips the Quail’s leg. They aren’t looking at each other and don’t appear to be otherwise aware of each other. Except they know. They orbit each other unconsciously. Drawing each other into their days and worlds.

This unconscious grace and acceptance, it has been there since Zuzu was first made a sister. As I sat on my rumpled bedsheets in the afternoon light nursing my newborn Quail, Zuzu crawled up to us all doe-eyed cautiousness not wanting to disrupt the nursing she herself held dear. I invited her in and as she joined us I looked down to see her hand protectively hovering over her new baby sisters, expressing more than she was able to say.



31 for 21: Day 29: pause

View More: http://mollyflanaganphotography.pass.us/starkey-family-2013


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.


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.