Fall down six times, Stand up seven. Make that eight.

31 for 21.

Or so they say. And so I’ll do.

The history:

Each October, families that blog about life with Down syndrome commit to a daily exercise of blogging every day (31) in October to raise awareness and acceptance about Down syndrome (T21). For the past seven years I have happily jumped in the fray and shared pictures, stories, resources and information about Down syndrome. I’m entering my eigth year of this beloved practice. The first two years that I joined 31 for 21 after the birth of the Quail, I continued on my typical daily blog posts at that time, taking care to ensure that I did post every day for the month. I was still able to maintain a semblance of order and time to devote to daily writing with the categories I initially organized my thoughts around. The third and fourth year, I had not had the time to post daily musings, in a good while, but I still had an extensive archive of photos I hadn’t had time to edit and share yet. So, I posted mainly images labeled with little tidbits about the Quail that make her both extraordinary and ordinary.
I hit my peek in 2013. In that last year, I LOVED participating. And still have every intention of making it into a book for myself. Our friend Molly Flanagan had shot some wonderful lifestyle photos of our family and our daily goings-on and I had told her that I loved them so much that I could narrate a story about each image. And that is what I did. I continue to go back to these photos and narratives. They are a gift- each single one. And I reread and still nod along as if I’m reading someone else’s writing and story. I still find myself thinking- yes! That’s what MY life is like. And then others shared with me how they felt about this project and how they could relate to it.  And then writers that I love shared it with their friends. And then wonderful things happened. I dug out my brave bones, like I tell my children to every day they go out into the world and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. And the next year we did just as well. Both times I was humbled, and felt so proud to have my village lift me up and help me help myself and others. The response was unexpectedly overwhelmingly positive. People I hadn’t had the pleasure to meet in person contributed and took the time to get in touch to say how Down syndrome is a part of their life and how lovely  and inspiring our Quail is. The good people at my work took it upon themselves to write up our advocacy efforts in our statewide celebration for a nomination for  a humanitarian award which we won this spring. And later that summer I was informed that the nomination was then passed on to the regional competition and we won that as well! If I’m going to be recognized by my workplace- there is no greater joy then realizing that while they appreciate my work- they also appreciate my heart and those it belongs to.  The next year we did the same fundraising and actually had friends join us for the walk. I managed to write and then, well then the big void came on, but all the voidier than even the years past. And in 2015. It was even harder to find the time and energy to write. And I only managed to write for seven days.

But as the saying goes, I’m going to stand up again. Because you only fail if you fail to try. And there’s a little girl counting on me. On us. On every single one of us. And if she can stand up and try again. So can I.

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#IDSC2016 ‪#‎DSAwareness‬ ‪#‎31for21‬ ‪#‎DSAM16 ‪#‎downsyndrome‬ #ordinaryafters #downsyndromeawarenessmonth

31 for 21: Day 4: smile

“She has yours you know.”

I looked over at the stranger who was grinning down at the Quail sitting in my shopping cart.

“Excuse me?”

“Your smile. She looks so much like you.”

I smiled back at the woman wondering if she fully understood the gift she had just given me.

Only hours after the Quail was born the on-call pediatrician was standing over the end of my bed unwrapping the Quail from the pink and blue foot-printed hospital blanket her father had just burritoed her into less than an hour ago. He had been in already to check her toes, her heart, her nasal bone and palms. Looking for a clear sign that she either did or didn’t have Down syndrome. Only a few weeks earlier we had visited the Maternal Fetal Medicine OB/GYN and he had explained that since they were performing the ultrasound so late in the pregnancy they had really not been able to see all the soft markers that would indicate Down syndrome. “She may have it or she may just be a genetic match for your older daughter.” In my first full-term pregnancy I had been to see Dr. G as well. I have a couple of blood clotting disorders, I’d had a couple of miscarriages and I wasn’t exactly a spring chicken by obstetrics standards. During those visits Zuzu had exhibited what I now realize were soft markers for Down syndrome. Only back then, those words hadn’t been uttered. It’s why each month, when the OB would suggest I could go back to Dr. G at any time and I could have any genetic testing I felt like; I smiled and declined. Zuzu had shown hydronephrosis and shortened femurs and other than one urinary tract infection, had been none the worse off. In fact, she measured in the 75th% for height. Shortened femurs be damned. As I’d seen each OB in the practice I used in turn, I’d smiled and turned them down on their offers for additional checking; until Dr. B, by far the most direct in the practice and the one who had delivered Zuzu, said outright that they thought there was a good chance the new baby had Down syndrome and I should really go get a level 2 ultrasound done at least. So I could be prepared. With his frankness, dimming my smile, I had nodded and headed over to see Dr. G. Again. My only clue something was amiss was his question of where my partner was when I stepped in his office to go over the ultrasound results. I had assured him I was fine. As we talked I joked that he should see Zuzu’s height. He nodded, shuffling the papers, remarking that it was less likely as the baby was a girl and assured me that after she was born the pediatrician would take a close look to see if further testing should be done. I agreed better safe than sorry and headed back to my car. Stiff lipped and quiet until Lovey’s voice came on the line and I started to tell him what they had said and the dam finally broke.IMG_1887

“I’m 75% sure she doesn’t have it but we’re going to draw blood and send it in for analysis.” The on-call pediatrician called in his colleague for a second opinion and between the two of them they really weren’t sure.

“Do her eyes look like anyone in your family?” Lovey and I shook our heads resignedly. Not really. It was too soon to know by color. But her newbornness, was definitely unique to herself and not that genetic match of Zuzu we were expecting.

Three weeks passed before the call would come and our own pediatrician would give us the final call on her genetic make up. He assured us in an involved and loving home like ours, most of what she would experience as somewhat limiting, could be medically managed nowadays. As he ran down a list of what to keep an eye out for, I sank down on the bed. The smile that had lit up my face as I snuggled the Quail close to me and breathed in her baby head just minutes before, once again faded from my lips. Earlier that day I had made a round of angry phone calls to the geneticist, the hospital, the pediatrician. Tired of wondering. But at that one moment, as time stopped and our doctor explained how an Early Intervention expert would be calling us for more information in the coming week, my place in the world had shifted and I wished I hadn’t been so damn ready to know. I longed to not be so damn sure. I was the recipient now. No longer the public servant. I had a daughter with Down syndrome. A daughter whose eyes didn’t look like mine. A daughter who hadn’t shown me her smile yet. A smile that would mold into my own in the months and years to come, but not right then. Over the next few days I continued to snap pictures but eyed them all speculatively before sharing them. Did she look like what I thought of when I heard Down syndrome? Sometimes. Sometimes I could see just the baby, my baby and sometimes I saw the otherness. I hid those pictures. I wanted other people to see her, and me still. Not the otherness. I cried when I flipped through those pictures. Then the time came to make our birth announcement. We needed a photo. I wasn’t comfortable with a single one I had taken so far. Lovey cleared off our mattress in the magic hour of afternoon light and laid out our sheepskin that had been a gift when Zuzu was born. Her jaundiced skin contrasted it as she slept on, oblivious to our arranging of her limbs. He snapped a few shots, moved her a bit more, angled himself level with our bed and backed up as I looked solemnly on over his shoulder not smiling or laughing. Not confident at all in how we would do this….

The next day as I sat at the computer editing the shots from the afternoon, I smiled seeing that the magic hour had done its job. Her sweet rounded cheeks gave way to her button nose which looked a lot like her sisters and my baby pictures. Her feathery locks of hair folded over her soft forehead. Her small pinky curled up by her ear. And there was my baby again. The one that had snuggled iin to me before the call verifying her otherness. Lovey had given me a great gift. A view of the Quail that I had known was there but still faltered over finding as my maternal hormones had their last bit of way with me.

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“I know. She’s all me. And a little bit more. Thank you.”

Smiling warmly at the woman, I turned back and grinned down at the Quail as she giggled and mirrored my smiling face back. Together we turned the cart and went back outside.

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‎#IDSC2015‬ ‪#‎DSAwareness‬ ‪#‎31for21‬ ‪#‎dsam15‬ ‪#‎downsyndrome‬ #ordinaryafters

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.”

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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.

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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

 

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:

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

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

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

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

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

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

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