Williams Syndrome Awareness Week

About 4 1/2 years ago, when Samantha was a baby, a man that worked for me in my old retail life revealed that his young, school-aged daughter, had Williams syndrome.  I had never heard of it, and my only experience with chromosomes was in learning about Down syndrome.  I was so green in this new world surrounding me that I didn't think to ask him more about it.  I had never yet heard the letters I-E-P used together, and was just learning P-T, O-T and S-T.  It was pretty overwhelming already, and learning about some other syndrome that couldn't possibly have such huge ramifications for the parents and the child as Down syndrome did for me, was just a waste of time.  My issues were far greater, and he couldn't understand.  So I asked a few cursory and polite general questions, learned that she had some delays, and moved on with my work days.

The fact is, while it is much more rare than Ds (about 1 in 10,000 babies born has Williams syndrome and 1 in 691 has Down syndrome), there are quite a few similarities.  There are some physical markers (harder to detect in infants), developmental delays in speech and fine and gross motor, learning delays, heart conditions and other traits.  Williams syndrome is the deletion of genetic material from chromosome 7.  Down syndrome is the addition of an extra chromosome 21.

I have recently begun reading the blogs of two parents of children with Williams syndrome, Adventures With Baby J and Bean and I Have the Missing Link and have learned so much more.  Because there are so few markers present at birth to raise red flags, diagnosis often comes very late for children with Ws.  Because the condition is relatively rare, there is so much less information and support out there for families with children with Ws.  With this week being Williams Syndrome Awareness Week, I hope many more people will seek to learn more, and to open their arms in support of these families.

I wish I had taken more time to learn about the daughter of that guy I worked with, but I was so new with my own daughter's diagnosis that I was a bit overwhelmed.  I hope he and his family received the supports we have available to us, and that his daughter is able to thrive in a world that is only just beginning to embrace the differences in people, but that still has a long, long way to go.

Spring Lambs (& Goats, Alligators, Zebras & Big Shaggy Things...)

My friend, Crystle, also one of the volunteer photographers for the 2012 DSANV calendar, invited me along to one of the shoots on Saturday morning.  Heck, it was at the local zoo and with a mother, father and 14-month old boy that I've been wanting to meet, so the stars aligned and off we went. 

My girl has no fear.  Feeding the sheep like an old pro, hand outstretched and proffering pellets of something-sheep-and-goats-like-to-eat-but-looks-like-rabbit-poo, she showed she has the touch.  The touch of a compassionate soul, and of one who nurtures.  That's Samantha, through and through.

The day was absolutely gorgeous, with crystal-blue skies and a soft breeze. I had actually forgotten how amazing it is to visit animals at this time of year, too, when the babies are taking their first breaths, drinking their first gulps of milk, and seeing the sun for the first time. At Crystle's request, the zoo staff had agreed to provide some baby goats for the little boy (and Samantha, of course!) to be photographed with. 

Yes, my girl has the touch.  This little kid's name is Irene.  And, get this, she was 2 days old.  I felt really honored to be in the presence of such a trusting and delicate little creature, allowed to watch two such trusting and delicate little creatures interact with each other.  Samantha is so gentle, and just knows.

I'm pretty sure she would have wanted to go in and give the alligators just such a gentle, delicate welcoming, but I was sure to put the brakes on that by telling her that alligators eat little girls.  Was that wrong?  A little bit of healthy fear can't hurt, right?

I'm not sure if any of you have ever had the opportunity to take a tractor-pulled wagon ride out into the middle of a tundra to meet some pretty shady characters up-close and personal or not, but having done it before, I knew to sit in the center row of seats, leaving the outer seating to my unsuspecting friends, one of whom is not much of an animal person.  She took it all in good-natured stride, though, especially since the ostriches and the huge beast with the 3-foot horns (not pictured here, but in this blog post from last year) happend to visit the other side of the wagon, fortunately.

A perfect spring day.  *sigh*

Being a Mother

When I was younger, through my teenage years, I swore up and down that I would never bear a child.  That must have started just after learning how babies made their entrance into the world, and my lasting thoughts were "no way, no how!"  I stated that if I decided I wanted a child, adoption would be the way to go.  Let someone else go through that...

That feeling eventually shifted.  I remember clearly when it did.  Sounds strange, but it was the spring of my Sophomore year at college.  I recall sitting in my English lit class, struggling to stay focused as I drew flowers all over the margins of my notebook in my purple ball-point pen (I loved that pen).  I felt it a little odd that I was doing something so random, so different from the geometric shapes I usually found myself doodling.  On a whim, I looked it up (uh, somewhere, it couldn't have been online, though, since the internet didn't exist yet!) and discovered that it was a sign of fertility.  Interesting, considering it seemed that my thoughts had been shifting as well, and I didn't quite care how a baby arrived, only that I wanted one. 

It wasn't until 18 years later that I eventually conceived and gave birth to what I know is the most special gift I could ever have been given.  A daughter.  And not just any daughter - the most beautiful, bright, fun, sweet, shining star that ever fell to earth.  And she was perfect, extra 21st chromosome and all. 

This post isn't about Down syndrome, it's about motherhood.  Samantha's birth and addition to our family was the perfect culmination of everything I knew I was meant to do in my life.  Everything I do is for her.  A friend of mine who had a baby before me always said that once a child is born, it's not about you anymore.  Truer words were never spoken.  I never thought it would be, and I would certainly hope that would be the case for mothers everywhere (those mothers who don't feel that way honestly shouldn't have children).  I could say so much more here, like how being a mother has taught me to love completely unconditionally, but I'll leave it at that, and keep it short and sweet for now.

My mother brought me up right.  While she was very young when she had me, she had the values and the instinctual know-how to be a GREAT mother.  I know you won't read this post today or probably for a few more weeks Mom (she's travelling without internet access through Europe), but when you do, know that I'm thinking of you today and want to wish you a very Happy Mother's Day!! 

And Happy Mother's Day to all mothers out there.  We have done some pretty spectacular things, and deserve to have a day just for us!

The Power of Compromise

The Kindergarten transition IEP meetings are now officially over.  Two sessions totalling 3 hours finally summed it all up in a manner that was mutually agreeable to all parties.  I have already posted about the first meeting, so I won't rehash it here, but needless to say, I did not burst into tears this time.  On the contrary, this last meeting, held on Wednesday afternoon, was almost festive! 

Odd.

The royal wedding played a big part in the discussion at the beginning, while technical difficulties with the computer's IEP program were ironed out.  Even the people with whom we butted heads last time (notably Sammi's PT) were particularly nice, quite possibly owing to the fact that I had sent cards and small gifts to the teachers and therapists for Teacher Appreciation Week in Sammi's backpack that morning...  (Note to self:  remember this for next year...) 

Eh, can't hurt to butter them up, right?

We knew it wouldn't be a difficult discussion.  We had already pretty much decided on most of the details and just had to plead our case for ESY (summer school).  There's this weird thing where if no agreement can be made at the IEP sitting, it reverts back to the previous year's version, meaning classroom instruction, PT, Speech and OT (which was added as a recommendation by the therapist this year) for ESY.  Which was cool.  But we really didn't want to get it via default - we wanted them to agree, too.  And once we said we did not want Speech or PT and only wanted OT and classroom for her 3 days a week during the 5-week ESY session, and once her OT piped in that due to Sammi's issues with groups and transitions it would be pretty crucial to keep her in the school environment as much as possible prior to Kindergarten (YES!  This is what we've been saying for so long!!), everyone agreed, and the deal was signed.  Compromise, compromise, compromise.  Shoot high, scale back to where you actually want it to go and let them think they came to the decision on their own... (okay, if any of you school folks are reading this, which I don't think you are, just know that what we came up with is truly in Sammi's best interest.  We're not being arbitrary here...) 

Easy peasy.

I don't know if I had mentioned before how much we love her OT.  She has seriously been in our (well, Sammi's) corner 100% the whole way.  All through the year she's been the only person who has communicated with us consistently, putting entries in Sammi's notebook to inform us of exactly what they worked on each week.  She has also worked hard to create fun activities for Samantha, involving things that Samantha is interested in.  You could sense her sadness in one note she sent home accompanying a large, spiral-bound book of letter-building activities that she had been working on with Sammi all year.  Sad because it meant so much to her, and it was hard for her to pass it along to us.  I wrote her a heart-felt thank you note in return.  She has also been the one to champion our ideas in the last two IEP meetings, and has stated that while she is not necessarily the therapist-on-duty this summer for whatever summer school Samantha will be attending, she wants to be the one to do her OT herself, and will work with us to find the best times/locations in which to do the sessions outside of the classroom.   

So this is how Kindy's going to look:

*AM session 5 days per week, with a 1:1 aide for as long as is necessary (Sammi proved to us this year that once she became familiar and comfortable with the people and the routines in the classroom, she could do it on her own), to be re-assessed quarterly, or as-needed.

*An extra hour of resource time after the AM session, to review the lessons and reinforce what was learned in class that day.

*An extra 1/2 hour two days a week after the resource time for therapies.

And no transportation, as the school is about 100 yards from the house.  I'm actually quite looking forward to being able to walk her to school next year!  I so rarely get to have a glimpse into the classroom or school environment, and I think having those few moments to talk to her teacher or watch Sammi's interactions with the children will be invaluable.

All is done for another year.  Kindergarten starts in a mere 4 months.  Samantha turns 5 in a scant 3 weeks.  Mommy is adding new grey hairs by the handful (skillfully covered by that box of dye I treasure...), and the sun rises and sets right on schedule. 

It's all good.

Someone's Gettin' Played...

Samantha's new aide, M., speaks barely a lick of English.  And while that can certainly pose some problems (trust me, it does), it should have absolutely. no. bearing. on common sense when it comes to caring for a child.

Unless that child happens to be Samantha.

My girl has this uncanny way of bending people to her will, exercising her right to use Jedi mind tricks on those unwary, unsuspecting Suckers (yes, with a capital S).  Mommy is occasionally on the receiving end.  Currently it's M.  And man, she's got it bad.  

Now, tell me, in a world of logic and common sense, WHEN is it OKAY to let a child draw all over their arms and clothes with magic marker?  Can you answer that?  Huh?

Right.  Didn't think so.  

When questioned about it, M. (through signs and gestures and those few words of English that she does know) explained that Samantha started doing it, then began to cry when M. tried to stop her, so she stopped trying.  Really?  That's all it took?  She seriously just sat back and watched as Samantha created her latest masterpiece in red, all. over. her. jeans. 

Today I'm feeling very grateful for washable markers.

What if that had been the couch?

Let's just say Samantha got a stern talking-to when Daddy got home...

I did a check-for-understanding when I came home lastnight:  "Samantha, where do you use markers?"  "On paper, mommy."  Good.

And this hasn't been the only incident, either.  Apparently, little Miss Manipulative has been telling M. that she'll go use the potty if she can have a cookie. 

Ohhhhhh, some things are just soooooo not negotiable.  Nice try, kiddo.  We're on to you now...

A Match? Yes! A Match!

There is truly nothing quite like a memory matching game – so very simple, yet you can almost watch it shaping young minds as they test and stretch their cognitive skills. Traditionally it was played with a deck of cards, but has morphed over time into a myriad of visually-enticing, brain-twisting options. SO many options! I remember as a child absolutely loving my Memory game. I have a strong memory (no pun intended) of sitting on the floor in our basement TV room, playing it with my parents. However, my memory is not sharp enough to recall what the images on the little square cards were.

Because the game can be introduced to a child as young as three years old, and because it can be appealing to people of almost any age, it can easily be found and adapted. We have several. My boss, not one to indulge in gift-giving, but who has a daughter the same age as Samantha, gave Sammi this Chelona Memo Fantasy game, made in Germany. It consists of several wooden boards, printed on each side with images of nature (one has bugs, one has flowers, another with butterflies, and yet another with ladybugs) and a few paper templates with which to make your own (by adhering stickers, photos, etc.). They are set over four dowels to keep them in place. Little wooden snails are set on top of each image, covering them from view, and each player, in turn, removes two at a time. If they reveal two matching images, the snails stay off and remain in that person’s possession. The person with the most snails at the end wins. It is beautifully crafted, and fits my fantasy of what toys we would have exclusively for Samantha as she grew up – wooden, educational, throwbacks to a simpler time. A fantasy I had before she was born, and which dissolved into an impossible dream almost instantly, the moment Ernie and Bert reared their ugly heads, followed quickly by Dora and the Disney Princesses.

Speaking of whom…the next game is the Kai-lan memory match game. We also have the Disney Princess version. And seriously, these games are hard!! How many little square cards can you have with pictures that are almost exactly like the others? They’re like finding a needle in a haystack. Not like games should always be easy, but they should at least be playable without dissolution into frustration by both parent and child.  Maybe it's just me...?  Needless to say, these boxes don’t come out all that often (don’t let that torn corner fool you…).

My parents gave Sammi Tea Party Smarty, another memory match game, by Hallmark. I love this one. Cards big enough to actually see, pictures bright and individual enough to discern the differences at a glance (none of that is-Cinderella’s-hair-in-a-ponytail-or-in-a-sweeping-updo? stuff…), with images of items found at a tea party (duh). 50 cards can be a bit daunting at first, but are easily pared down for smaller games.

(I love how hard she's concentrating here...)

You really can make a match game out of just about anything, the more creative, the better.  Do you have any favorites?

I particularly love the version where my girl sorts her own lovely, rainbow-hued socks fresh out of the dryer. ;-)

A match?

Yes, baby, it’s a match.

The Yard Picnic

We knew ahead of time that we were in for a perfectly beautiful Saturday.  After Thursday morning's tornado scares, leaving us hunkered down in our basement watching the blip of the radar move across the tv screen (showing the unsettled weather passing a mere mile to our west), we felt that we deserved a beautiful day or two.  Really. 

So I asked the young, blond-haired, blue-eyed decision-maker of the family what she thought of having a picnic on Saturday.  Like I didn't already know the answer...  Steve had already committed to yardwork, making an early-morning run to Home Depot for mulch, flowers, and the oh-so-necessary ant and termite termination spray.  I know what he's like - he'll skip anything resembling breakfast and get so engrossed in his job at hand that he forgets to eat all day.  I knew that a lunchtime picnic would benefit us all.  Sammi helped me plan the menu (uh...the predictable peanut butter and jelly sandwiches, of course, supplemented by ham and cheese, veggie straws, broccoli salad and the likely-to-be-left-uneaten-by-the-anti-vegetable-princess carrot and celery sticks) and at 1pm we trooped out to the brightest spot in the front yard to pitch our blanket and soak in the fresh air and sunshine.

Samantha is wearing one of Steve's mother's beautiful creations, sent last week from England.

Sliced strawberries and grapes in honey and lemon juice.  I've got to have the weirdest kid on the planet, who won't. eat. strawberries.  I'm assuming it's because they're pretty hit-or-miss in the sweetness department, depending on the time of year and the crop location.  I guess she's been burned too many times with the sour ones that she figures it's better just to not to chance it.  Grapes, on the other hand, are not an issue.

But my, oh my, don't they look delicious??

See that building in the background?  That's the school Sammi will be attending starting next fall.  I seriously don't think it could be any more convenient.  :-)