Approaching 10 years of Will!

I have a hard time knowing where to start this post.  I could have whipped up an "Update" post and covered where Will is in a quick photo essay and gone back to the many demands this house is always filled with.  I could write a whole novel that details the happy times and  neat things and unexpected surprises we have encountered over the last few years.  Vented about some of the frustrations and challenges we have faced.  I think my goal will be something in between.  A quickish journey to where Will and our family is today.

I remember when Will was just a toddler, there seemed a great need for mothers of kids with DS to show the world what possibilities we saw for our children.  Will was born at a time when the advent of blogging created a neat way for mothers to reach out to one another, for mothers to chronicle the numerous emotions and discoveries and questions they had on their journey to their new normal.  The internet also became a battleground between these new "advocate" moms and other women who chose not to carry their children with Ds, and aborted them.  On one message board I remember one woman who assured us that after all the cute-ness of babies and toddlers with Ds had worn off it would be an unending drudgery.  They noted that you never heard about the 6, 12, 17, 32 year olds with Ds.  Their parents, they assured us, had hidden them away.  That day I vowed I would make sure every age and stage of our journey was laid plain and open for all people to see, and I vowed to never go back to those dark message boards again.

And then normal got in the way.  My new life of wonder and learning ebbed away as it became more about peanut butter smears and missing socks and filling the car up with gas and the cupboards up with food than it was about admiring all this newness that had entered my life.  My journalling became quick post-and-runs on Facebook and hundreds of pictures in my computers hard drive waiting to be shared.  A new baby came along, and he was nothing like my patient and content Will.  He is demanding and irascible and not understanding of a leisurely write with a cup of coffee.  Will spoiled me back in those early days.  And while I have yearned to get back to writing, there was always something more pressing to take care of.

Will is going to be 10 this May.  10!  If you are wondering if I have secluded Will into our basement or attic, I can assure you, and that mystery woman with all that "knowledge"of people with Ds, that no, I have not.  Will is a busy, happy, involved, connected, respected, participating kid whose horizons broaden more and more as the months fly by.

My wonderment about school when Will was one and two was pretty much all encompassing.  I didn't know what a regular school day would look like for him.  I wondered about school peers, and how he would fit in.  Will's school day looks a lot like most kids days, with an EA at his side for most of the day, Will gets to work on what the class is doing, sometimes modified, sometimes not.  I find each year, individual teachers approach Will differently.  Some dive right in and completely wow me with ideas and approaches and goals they have.  Will's first and third grade teachers were huge reading advocates and got him reading to the point he was somewhere in the median of classroom ability.  His third grade math teacher took a summer course on teaching math to visual, hands on learners and collected a variety of manipulatives to teach him math.  Some teachers are more hesitant and unsure.  In my experience though, communication between the school and home is important.  I keep the relationship light, but convey my expectations clearly.  When I am in the school, I more often than not have teachers stopping me to tell me about achievements Will has made.  Like a story he wrote and produced on the computer, or a castle he built, or his ability on the piano.  Yes, Will takes piano lessons through the school.  And boy does he love it, not as much as his piano teacher loves him though.  She has stopped me outside of school to tell me that herself.  He has run cross country for his school team and has no problem performing on stage for a school theatrical performance.  As for friends, well, I remember dropping off Will at school after an appointment and walking through the halls at the end of recess, when the halls were full of kids.  "Hi Wills" and "Hey Wills" filled the hallway as kids from every grade, and staff too, all wanted to greet him.  It was surreal to see it and it made me feel great inside.  That said, there are times Will has confided in me that he was alone at recess and no one played with him.  I know that is not the case everyday, because he does come home with stories that involve other children.  I am aware of it, and I let the school know to.  They like to be aware of this type thing and sometimes come up with novel ways to address it.  One time he was given an orange vest and told to reward kids who were being good friends on the playground by giving them a sticker.  I didn't hear much about it until I welcomed a new dad to the school and we exchanged our kids names and ages and he remarked about Will, who had given his son a sticker on his first day at the new school.  Will sure doesn't have hang ups about approaching new kids, and he was the boy that new student went home to talk about.

Will in the big wide world was always a goal of mine, but again, hard to picture with a two or three year old.  Will loves what he loves, and that is music, hockey, golf, swimming, fishing, boating, video gaming and please, please, please a sleepover mom.  That last thing hasn't happened yet, but he keeps reminding me he would like to have a sleepover at a friends house.  One day I'm sure it will happen.  I probably have more problems with it than he does.  Will plays hockey on a Special Hockey International team near our home.  He loves taking the face-off and a goal is icing on the cake.  He skates independently and is the master of the "game-face".  You won't see too many pictures of him in hockey gear and smiling at the same time.  Game face doesn't come off until he has left the arena parking lot.  Will looks up to his biggest brother, who is now off to university, musically.  We often find Will playing his beat up guitar in the office, where he has set up the Mac photo booth to record himself playing and singing.  I think a big chunk of computer memory space is taken up with Will's music video productions.  Piano is a natural outlet for his love of music and although it takes him a while to learn a piece, once he knows it he plays it again and again and again and…well, you get the picture.  Currently Will has a "job".  He will be modelling for a project I am not allowed to discuss at this point, but he sure is proud that he is doing some work, like his older brother and sister.

All of this is to point you to the understanding that Will is pretty much a regular, normal kid.  I suppose that is why those gushing new baby blogs dwindle over time.   It's hard to write compelling, emotional stories about normal.  We got in the car, shoved all the hockey equipment in the back and headed out into the snowstorm to play hockey in a town an hour away.  From the back, Will asked if he could have McDonald's after the game….and when was he going to get to have a sleepover…

There is certainly a nice feeling of contentment when you reach normal, and any writer will tell you, contentment is a hard place to write from.

Congratulations Dr. Karen Gaffney

Karen Gaffney is a pioneer in today's world, forging a path for others with Down syndrome to follow.  Today the dreams and aspirations of people with Down syndrome are limitless and watching their successful achievements is awe inspiring for everyone.  This is especially so for the parents of children with Down syndrome, as we turn from biased information and advice and realize that the horizon line is wide open and people with Down syndrome are burdened mostly by the nay sayers of the world.  The world is a better place with Karen and every other person with Down syndrome in it.

It's an exciting time to be a parent of a child with DS. :)

World Down Syndrome Day

Happy World Down Syndrome Day!

 

Perfect

Maybe this has made the rounds already, but no one can say this could ever be "over exposed". I could watch it again and again. This brought me back to the day with my Friday morning coffee ladies. I was the club's newest member, my infant boy bundled in a stroller, his Down syndrome my reason for being there. I immediately felt right at home with their company. We were very different women, and yes, we all had a beautiful child with Ds, but that wasn't the most significant thing we shared. The place we all found ourselves was the most poignant similarity. I can only describe this place by telling the story of one of the moms recounting the addition of her daughter to her family. Her response was almost wordless. Since watching her express how deeply glad she was that her daughter was who she was, I have seen other parents struggle to express their gladness. They never can, really. But they all do, by pausing in their attempt. They all pause and slowly shake their heads and they look up at you and their eyes are full of tears. Thats because there are no words. We use words like happy and glad and blessed and joyful all the time, for great reasons. It's never the right word in the case of relating what its like welcoming the unexpected child. There is no word that comes close to describing the thankfulness, the emotional journey to realizing the treasure a son or daughter is when they shift all of your assumptions and perspectives to a place you have never been before, and are so glad you arrived there. It's hard to really explain, you have to see it for your self, and when you do, you understand. Heath White reminded me of these moments again.

Spring is in full swing...for 2 more days

But we have all been busy!

Will had his birthday party, where he changed from host with the most to....Spiderman!:








The funny part about this must be the fact that Will actually requested Spiderman stuff. He was not disappointed either and he received the costume and a web launcher (that all boys right up to twenty somethings had fun trying out). He wore the costume until he got too hot. He rolled around the backyard with the boys and ran around fighting crime in the kitchen, living room, rec room. After getting into his pjs he tried the outfit on one more time and looked in the bathroom mirror. He got quiet, then he got freaked out. Off came the costume and away went the web launcher. I later found the costume components balled up together and crammed under my bed. This is part of an ongoing love/hate relationship Will has with spiders. He loves to look at them and see them in books. He is intrigued by them, but I think they come back to haunt him in his dreams and he is once again afraid of them. He once dreamed Theo was a spider.

When he was little we had a cloth "Old lady who swallowed a fly" doll who ate a stuffed fly, bird, cat, dog, horse etc. That
"Ol' lady" absolutely freaked Will out. If he spotted her in a room he would refuse to go in. After moving a couple of times "Ol' Lady" would invariably show up unexpectedly and Will would be horrified to be confronted by her once again. Just the other night I tried reading "Gifts" by Barbara Reid, the plasticine artist. It features a grandmother travelling around the world bringing back treasures for her granddaughter. Well, I guess that grandmother resembled "Ol' Lady" a little too much because I had to cease and desist with the book and I later found it jammed behind his nightstand, least I get any ideas about future readings.

On an always happy note...golf has started! Will loves getting out on Monday nights with the SO golfers in our area. He also hits the range with dad on weekends too!





Will has laser beam focus on his game...until he spots, hey, is that a caterpillar?

The Last Supper

Artist Raoef Mamedov created this depiction of the Last Supper in a unique and provocative way.  Here we see Jesus and his 12 disciples portrayed by 13 men with Down syndrome.  Personally I find it beautiful and deeply moving.  Knowing someone with Ds intimately, deep feelings stir within me as I draw parallels between my experiences with William, and others I have met with Down syndrome, and the familiar Easter story of the last supper.

I did do some research on Mamedov, to see why he includes models with Ds in many of his pieces.  This is all the information I could find:

Moscow-based Mamedov utilizes the process of film direction by collaborating with a painter,
photographer, computer technician, and actors to produce extrasensory photographs. Though the scenes viewed in the final works are complex with multiple players, each actor is
separately photographed with Mamedov directing the actors’ emotions and providing the vision for the subsequent digitization and computer placement. Adding a strange conceptual
twist, his “actors” range from institutionalized mental patients to individuals with Down Syndrome enabling him to utilize the true abilities of the actors’ minds as an art medium that
heighten the pieces’ cultural connections and meanings. 

What exactly is Mamedov trying to say through this portrayal is left to the observer to discern, but two themes seem to evolve through the handful of websites I visited that allowed commentary.  People who were generally ignorant about Down syndrome, or had never met someone with Down syndrome seemed to find this more controversial than those who had an understanding of Ds.  Interestingly, of those who were offended or disturbed, quite a few somehow felt the models were being taken advantage of or were being abused.  Some comments went so far as to say that the models would have had no understanding of what they were being asked to do.  Those who were familiar with Down syndrome seemed at ease to look at the art and find beauty and deeper meaning.

Beyond the traditional religious significance of the Last Supper, this portrayal has also created a sort of divining mechanism that causes an observer to confront their feelings about disability.  Unconditional love, sacrifice,  steadfastness, selflessness and loyalty are themes derived from the Easter story and to a person who loves someone with Down syndrome those themes will seem very familiar.  To the uninitiated, they could not see past the disability and find the beauty and passion of the Last Supper.

Perhaps that is what Mamedov wants us to confront.  The barriers we have to finding Christ.  Perhaps he is giving the observer a chance to notice the condition of our hearts, are they open to seeing Christ in our brothers or are they so badly tainted by our superficial world that there is no longer a way in?

I also have to add that the treatment of the photographs to create the feeling of a classic painting is very appealing and welcoming.  To me it gives me an impression of historical record, as though we need to remember that people with Down syndrome have lived in the time of Jesus, in the time of Da Vinci, and today.  They may not have played a role that made a mark on history, but they were there.  Mamedov has changed that now by including people with Down syndrome in a significant piece of art.  Maybe he thought it was finally time.

The curious case of the disappearing child.

I think any parent of five children will admit that they are a little more relaxed in their approach to child rearing.  The days of helicoptering over toddlers are gone and make shift pens and historical observations of your child's behavior give you a sense of security that you have a grip on what a 14 month might get up to.  Kitchen cupboards, ya no biggie.  Pushing the buttons on the washing machine mid cycle (grrr) ya, seen it.  Finding the drawers where the markers are hid, that's what those Mr. Clean scrubby things are for.

Such was the case this morning.  Theo and I followed our regular routine where I perform light cleaning/tidying/playing until his mid morning nap time and then I delve into those jobs that I can't do with my, ahem, "helper".  So just after 10:30 I sat Theo in the highchair with a few little snacky tid bits and just like clockwork, he was asleep in 6 minutes. (For those of you who don't know, Theo ONLY naps in his highchair.  Theo can cry at demanding and hysterical operatic levels for two hours if he is in his crib during daytime hours and I would be having vodka in my coffee if that went on everyday, so this is the much safer alternative.)

Anyway, as soon as the familiar head bobbing starts I reline the chair and beat it the heck out of the kitchen.  Today, ironing was on the docket and I opened up the board fast, so the weird squeak it makes would be short and painless, as opposed to the long, freaky dragged-out squeak it would make if I was trying to be quiet.  I am one of those rare people who actually likes ironing, if I am alone and can kinda bum wiggle to the music from the radio I have in the laundry room.  Yes, a radio, and considering the amount of time I spend in that room, I should have a plasma TV, bar fridge and a coffee maker.  Anyway, I got all my tea towels nice and crisp, got through a small pile of shirts and finished off with the flimsy tank tops that Olivia had left in a heap after taking them out of the dryer.  She says she doesn't care, but I try to explain to her that when young people are out in the world looking frumpy, observers wonder what's wrong with the kid's MOTHER!

When I completed my job I took the cold remnants of my coffee and went to my Pinterest boards. (Yes, it's like I'm at a real job, where a portion of your day is spent screwing around unproductively.)  After a while I hear whimpering and crying.  Usual, "I'm bored mom, where are you?" kinda crying.  I walked out of the office and my sixth sense detected that the crying wasn't coming from the highchair quadrant of the house.  It's amazing how a routine is so chemically imprinted on your brain.  That crying was geographically off and I knew it from 40 feet away.  That sent some sort of subconscious alert that possibly only mothers get.  I got goose bumps and I began to have a physical emergency response reaction.  When I got to the kitchen the highchair was empty!  Theo was no where around it.  I had to search for him.  His crying was still a low-level "I'm still bored here!" and I found him under the breakfast bar hanging onto the side of a stool.

I have no idea how he got out of that chair without a sound, no whimpering or crying, no grunting sounds.  It had been stealth.  It had been Mission Impossible.

So, where a first time parent would be having the vapours over such a close call, I am finding the situation one of interesting intrigue.  How did he do it?  I'll never know if he went over the edge, or slithered down through the leg hole.  One thing is sure, I have tightened the belt to the point where it borderline is gonna feel uncomfortable if he has a big meal.  I was a little more lax on the restraining tightness of the belt 'cause I figure you can't enjoy a good meal  with such an important part of your anatomy under physical duress.

But Theo has upped the ante for me.  He's going to get me back on my toes again.