31 for 21: Day 1: I’m back….again.

31 for 21.

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 six years I have happily jumped in the fray and shared pictures, stories, resources and information about Down syndrome. I’m entering my seventh 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 borrowed the cowardly lion’s heart and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. I had never been 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.

Each November 1, I breathe a little easier that I made it through the month. And each month following November 1, I find that I write and share less and less. It’s not that I have less to say. It’s that I have more to do. More I want to do. In real life. And then, I read an especially insightful passage or post that I have so very much to say about and I think I’ll make my own post and get back to regular writing because it really feels so much better when I do make the time….

…and then it’s time to sing the “Rise and Shine” morning song to three little sets of ears that pretend not to hear me as they burrow under their blankets until I get good and loud and practically heave them from their sleeping nests to herd them to their respective dressers, followed by their frantic dickering over plastic bowl and spoon colors and proper craisined and raisined proportions of Cheerios, Kashi and Chex Mix like they are buying and selling stock on Wall Street. This continues until it is time to lecture them that they are again running late and we must leave for school precisely three minutes ago and why has no one brushed their own hair or taken their allergy meds and what do you mean you don’t know where your dance shoes are and that you had jump-rope team starting five minutes ago and no you don’t need your hoodie zipped but you do need a clean straw and cup and hurry to the car and the neighbors are probably getting an unpleasant earful and I promise you Sugarplum that Momma’s need to go to work today is no different than it’s been every weekday for the last three years and of course I’ll come home and take care of you and please let go of my leg and go back in the house.

And somehow we all end up singing “Shake it Off” or “Bad Blood” only minutes later as we screech into the drop off line and wave to the teachers and bless the safety patrol for their “Have a good day!” wishes and switch off the Taylor Swift after maybe one more song, cause it’s really for their tweeny hearts and click on the audiobook for 40 minutes of peaceful drive-dreaming on the way to work.  Almost ten hours later, I arrive back at the daycare that’s really their second home after almost nine years and reassure the new staff that we’re happy to pick them up sandy and sweaty and grinning with questions of if it is a McDonald’s night or a pizza and a movie night as I attempt to herd them back to the car before answering in the negative to avoid the semi-routine public scenes we are so prone to so that we can hurry home to ignore the piles of laundry; not so lovingly referred to as Mt. Washmore, and unload the dishwasher and bribe the almost nine-year old with quarters to refill it and tear the nerf sword out of the three-year-old’s tightly gripping, blue markered hand again and look up the answer to the six year old’s question about if she has computer lab or P.E tomorrow and set my alarm for 4:45 a.m. with an intention to go for a run and take my melatonin and start the nightly Netflix debate of Dr. Who versus The Bridge with Lovey after which I *may*sneak a pack of chocolate covered banana dippers from the back of the freezer where they are hidden from the world before falling in to bed to start the whole process over again, maybe a little bit better rested, maybe a bit better prepared, maybe a bit calmer….or maybe just again.

So all of that is to say that I’m not quite sure what I want to focus on this month. But I wish that I did know. At least then I could stop feeling bad that I’m certain I don’t have time to participate this year and just start writing. Last night during our nightly Netflix hour, I said to Lovey that I was sad I couldn’t do the blogging challenge this month. His response was that was nonsense, just pick a photo and write what you think and feel. It doesn’t have to be a novel.

Then this morning, while I glazed over Facebook with my spoon in my Cheerios after not running, I saw an article share about the importance of really questioning yourself about who cares if you are running slow. About how most athletes are hounded by negative self-talk- whether they routinely run a 6 minute mile or a 15 minute mile. While the fact of the matter is both of those extremes are still running. And I got it. Again. That when you tell yourself you can’t do something you want to do, you begin to believe it as fact rather than the negative self-talk opinion that it actually is. And then, you don’t even try.

This.

This relates to so much more in life than just running. You can say the same about writing and cooking and traveling and parenting and friend-making and group-joining and education and inclusion. When you tell yourself you can’t, you don’t put much effort into seeing if you possibly could. It shapes your actions and your intentions. You don’t work hard, because you gave up before you even start trying.

If I run slow, and write less and start my non-dieting lifestyle over yet again and cancel my plans and page back to reread that chapter on my kindle and have to say “I’m sorry I raised my voice” to my children and husband and “We’re going to try it in spite of those issues” to the Quail’s IEP team and Zuzu’s dreams of competitive dancing while wiping off Sugarplum’s skinned knee with her polk-n-dotted shirt that, while clean remains unfolded on top of Mt. Washmore, then that’s what I’ll do.

Again.

day1

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

31 for 21: Day 29: corner view: traditions

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

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