Happy World Down Syndrome Day-plus a little treat for any European visitors

William has two godmothers. I figured with an extra chromosome and all, he should have an extra godmother. They are two lovely gals, neighbours from two addresses ago. It was a situation that hearkened back to the 1950's when ladies chatted over the fence and hosted you for dinner. The hubbies also socialized together. We could have given those gentlemen the duty of godfather, but in the tiny country church, space up front was limited. Actually, I think we were only allowed to have two godparents and we didn't want to shut out either family. The guys are just like godfathers to Will and love every chance they get to see him.

It just so happens that one of these "godfathers" is an important person in the world of hockey. He played in the European league for many years and was awarded the top scorer "golden helmet" numerous times. He now plays a key role in the business side of hockey and travels the world in his position.

This is how Will lucks out and gets stuff like this:




I thought some of the visitors here from Europe would appreciate a picture of Will in the Swedish hockey jersey.

And here is a hello and happy World Down Syndrome Day from me and a nice warm hug from Will to all the people around the world who have stopped by to check in on Will and his slightly wacky family :)

We have had visitors from:

Austria

Australia

Belgium

Canada (BC, Alberta, Saskatchewan, Ontario, Quebec, New Brunswick and Nova Scotia)

Croatia

Denmark

Dominican Republic

Finland

France

Germany

Hong Kong

India

Israel

Italy

Japan

Kazakhstan

Latvia

Lithuania

Netherlands

New Zealand

Norway

Philippines

Russian Federation

Saudi Arabia

South Africa

Sweden

Switzerland

Tanzania

Thailand

United Arab Emirates

United Kingdom (England, Ireland, Northern Ireland,Scotland, Wales)

United States (44 different states and Puerto Rico)

Uzbekistan

Vietnam

The not-so-brave new world

I'm sure by now you have heard about the scientific discovery made by a group of Boston based hospitals that connects chromosome 16 with autism. Reading about these types of discoveries makes me automatically wince now. I understand the road this type of discovery becomes. What appears to be promising, life-changing medical discoveries in the beginning turn out to be more of an ending. Identifying the chromosomal culprit to what make people unique is usually the end of the line. Promises of treatments and therapies are actually smoke and mirrors that deflect your attention to the actual application of these discoveries.

Last Updated: Wednesday, January 9, 2008 5:11 PM ET
CBC News

Researchers have identified a chromosomal abnormality that seems to increase a
person's chances of developing autism.
A group of U.S. researchers,
associated with a group of Boston-based hospitals known as the Autism
Consortium, conducted complete genome scans of 1,400 samples of DNA from
families of autistic children.
They found that in one per cent of people with
autism, or similar disorders, a portion of chromosome 16 is either absent or
duplicated. This is not inherited from the parents.
To ensure this
finding held true in other autism patients, researchers then examined the
data of 1,000 patients from Children's Hospital Boston — about fifty per cent of
whom had been formally diagnosed as being autistic or having a developmental
problem.
Among those children with developmental issues, five had the same
deleted section of chromosome 16, and another four had a duplicated
chromosome.
The researchers caution that it is still early days in genetic
research into autism.

"We're still a long way from understanding how this
chromosomal deletion or duplication increases the risk for autism, but this is a
critical first step toward that knowledge," said Mark Daly, the study's senior
author for gene discovery, in a release.
The study is published online
Wednesday in the New England Journal of Medicine.
To date, only 10 per cent
of all autism cases have been traced to genetic and chromosomal abnormalities,
say the authors.
"These large, non-inherited chromosomal deletions are
extremely rare," said Daly, "so finding precisely the same deletion in such a
significant proportion of patients suggests that it is a very strong risk factor
for autism.
"We're now pursuing more detailed genetic studies to figure out
which genes in this region are responsible for this effect in order to gain a
better understanding of the underlying biology and potential clues to
therapeutic approaches."

When researchers identified the chromosomal difference that results in Down syndrome I'm sure it was accompanied by great fanfare. Surely treatments and therapies where just around the corner to enhance the lives of people living with T21. That was not the case at all, the research ended right there. The job was done. Now it was up to doctors to use this information to convince mothers that they now had a choice about their unborn child. The new science suddenly made children with Down syndrome optional. I suppose the impetus for the original research was to improve the lives of people with T21, but somehow that morphed into no life is better than a life with Down syndrome. Medical science, itself, became a bastardized version of the "do no harm" medicine we could all have hope and faith in. People are afraid of what the three 21st chromosomes mean, yet the shift from medical care to medical elimination of people with differences seems to go unnoticed. This phenomena is a far scarier societal practice than what any diagnosis brings to us. There is irony in this fact, as we are just learning ourselves what the potential of people with various diagnosis are, medicine shifts to eliminate this whole experience of human discovery. Science is looking far too microscopically at us now and forgetting that those tiny bits of us that raise so much cause for concern are wrapped up by actual living, feeling, contributing, dynamic people that are far more than the sum of their "parts". It's time for scientists to step away from the electron microscopes for a moment, to remember that these fascinating bits and pieces are just that, bits and pieces that tell a fraction of the story of us.

As I listening to the gushing news anchors celebrate these chromosomal discoveries I am hardly impressed, because I know the rest of the story already, and it's got a sad ending.

Today is Special Kids Day!

I didn't know until hearing about it on the radio this morning, today is Special Kids Day!

I didn't know that Will had a special day specifically for the appreciation of him! I'm going to have to do something special, let him know how happy I am that he is in our life. And I'm not going to assume that the extra chromosome is the only thing that makes him special.

When Will was first born I was so worried about what the impact he would have on our family, about what his potential would be. I had heard and read a wide variety of things. Some were scary, some hopeful. Where would we end up? Everything seemed to ride on his potential, his independence, his ability to learn new things. Would he embarrass his siblings? Will he communicate? While we worried in the beginning and while we curiously wondered for the next while, it was Will who was bring us to our human potential.

I have found, on more than one occasion, that doctors love to make stabs at what your child's potential will be. The most hilarious one was the guy who suggested Will may work in a funeral home, because he will be so loving and compassionate. Well, a parent would love to think that their child will be loving and compassionate, but a career in the funeral business is not what immediately leaps into one's mind as places to apply such gifts. I have read about the mom who was told her child would be clinging and drooling on her arm for her child's whole life. (That doctor needs to hand in her medical licence.)

A doctor would never dream of doing that for a typical child, but if you are born "special" you get a label and lots of presumptions about your whole life. Never is there a mention about how the rest of the family would get a huge boost in the humanity department. Without Will we would all still be so dumb to what our own potential was. Potential is a lot of things, some ordinary and expected, totally unsurprising. Then there is the potential you have no inckling about, that could never surface without the gifts a special kid like Will brings to you.

Will, himself, is full of potential, some of it an instinctual feeling I get, some of it knowledge garnered from meeting other people with DS. I am to the point where I can be smug with the naysayers, no matter how "educated" they come off as, they can be dumb as rocks too.

Will loves so many things about life, no less than any other child. Will draws people to him. Teachers run their hands over his head without thinking as they speak to me. Many kneel down to get a goodbye hug from him. They don't do that with any of the other kids. Will is special because he has the innate ability to expand others humanistic experience in such a gentle and assertive way. He draws out understanding. He can divine goodness in other people. That is a hard job. Most people would be afraid to even attempt it, to try to crack the shells we create in an effort at self preservation. Who would dream of taking on a role like that, especially in this day and age? Will does it happily. At home he can be grumpy and challenge us at every turn, but when he is out, he is smiles and hellos to all. He is the the special person who can stand in the chill of society and find it's warm spots.

Happy Special Kids Day Will, and we thank you for making it special for the rest of us too.

A chance meeting with a nice family....and Santa!

Yesterday brought me away from online shopping and to an actual mall. I'm not an enthusiastic mall shopper. I've become the in and outer. I want to park close to a store, unhook Will from his car seat, put him in the stroller, dart in and then get out. Mall shopping means a long protracted trip in and around and up or down and through. Plus the car seat, stroller thing. I used to love mall shopping. I grew up in a mall in Scarborough Ontario. If any readers here are from Ontario, they will know the Scarborough Town Center. If they are my age they will remember the Shirt Stop, where I had a Kristy McNicoll t-shirt made, among others. They'll also remember Santa's pink candy castle between the escalators.


I digress, yesterdays trip was one of bag lugging and because of the three layers I was wearing when I went in, the trip became sweaty. Will is also not a great shopping companion as he does not like any baggage in his "space". Above the seat, where the canopy of the stroller folds in, or beside him, nothing can be in his space. No food, coats, toys, nothing. He runs a ship shape stroller. So after the basket underneath gets full it's up to me to carry everything. I was visiting the last store, standing at the checkout when a lady approached Will and said I have a son like him, he's 29 now. Of course I was going to drum up a conversation with this woman, who was there with her husband visiting from California to see their daughter and her family. Their daughter was with them as well, with her two young sons. They were a lovely family and I learned a lot about their son. I learned a lot period. Their son was currently away on a trip to Mexico with a friend. He played tennis, soccer and bowled. His dad was the soccer coach. His mom very involved with Special Olympics. He could drive a car.
Really! I told them I had read about people with DS achieving these goals, but had never really met anyone at this point. Now I can say I have! My trip to the mall was worth the heavy bags and the grumpy co-shopper. I came home with more knowledge and understanding than when I left.

As I pushed the stroller for home (with Will's now loud demands of Car! Car!) I spotted Santa sitting in his woodland forest. There was no line-up! So I quick steered that stroller up to Santa. I dropped my armload and unbuckled Will. He approached Santa with his arms out and his baritone exclamations of "Sa-ta!". He sat right up there happy as a clam.

He somehow looks older than he normally does in this picture. He looks taller and thinner. He looks confident here.

Maybe that is just how I see him now, after meeting a nice family from California.

Parent as victim

Any parent of a child with disabilities can attest to feeling as thought they are somehow looked upon as some sort of victim. Maybe family members or coworkers or well meaning "too bads" from friends has made them feel as though they are now part of life's losers.

I don't have to remember back too far to know how it felt. Not that I ever felt like a loser or victim, but that I was viewed as one.

When I really think about the circumstances surrounding the expansion of a family by the welcoming of a child with a disability I can never think victim.

Vic'tim (vik'tim) n. 1, one who suffers from a harmful agency. 2, one who is cheated or duped.

Will, by any stretch of the imagination, cannot be considered a "harmful agency". "Cheated" or "duped" implies that I was outwitted. I was willing to face the unknown, immune from being outwitted.

In my instance, I did not know Will was going to have DS. There are many out there, like me, who did not know. I will assume they were the parents that chose not to have prenatal testing, like myself. By the action of not wanting to know they (we) are standing up to fear. Fear is mostly of the unknown and maybe that is a realization we share, that whatever comes our way, we are ready to stand and deliver. We know we will not shrink from what we must face, but instead show courage and fortitude. How can anyone ever think we are victims when we are the fearless victors? Rising above our fears and uncertainties to discover that the courage we needed in the beginning was a reflection of our character, or at least something we were willing to experience as a means of exposing what we were really made of .

The same can be said for the parents who did know, and also stood tall and relied on their inner strength to face fear. Who, regardless of the pressure they experienced, remained firm, and were brave.

Once while reading from Franklin Goes to the Hospital to my older kids, I came across a quote by Dr. Beaver. She tells Franklin "...just because your afraid doesn't mean you aren't brave. Being brave means doing what you have to do, no matter how scared you feel."

That has stuck with me and now I can see that it applies to everyone, not just kids. In spite of society's effort to reduce the numbers of parents it deems as victims, Parents are being :

Brave (brav) adj. 1,courageous. 2, splendid; handsome. --face with courage; defy.

So, along with the push to eliminate children deemed imperfect, society is also losing adults that are the kind of folk that inspire and mentor, that are examples of what it means to have character. We are the heros in today's world, not because of what we have done, but because of what we are willing to do.

Thinking it through, it is those who give up, give in and are unwilling to have strong shoulders who are life's victims. They are duped by manipulative talks by ill advised medical doctors and their harmful agencies.

In the end, the fearlessness only had to be temporary, the unknown became understanding and I was rewarded, like the heroine of a movie, with the happy ending.

This life changing experience has given me strength, understanding, courage. How much better am I now equipped in this world.

I am no victim. I am the victor, and to me, go the spoils.

Visit this special lilac garden

Yankee, over at The Right To Live a Joyful Life had posted the most beautiful story about what she encountered in her garden this spring. Have a kleenex handy.

The Lilacs Will be Beautiful

I loved this short video

and if you have a few moments I urge you to watch it. It's about more than a person with DS finding a way to be successful. You will come away inspired. Click here to watch.

Thanks to Mommy Lifefor the chance to see this.

May 1st- Blogging against disablism day

This is my eleventh hour posting. I am squeezing this in just in time. Two days ago I don't think I would have had anything to write here. It just so happened I had my eyebrows raised when I least expected it. Will is only two and is cute and cuddly and a beam of sunshine for the most part. I have not really run into a situation where I thought Will was being discriminated against. Or so I thought.

As most readers know, we are Canadians, and Will is dual. We are just now going through the process of obtaining Green Cards and part of the process is having a physical done. The United States wants to make sure we are not carriers of anything nasty. (although we have been here for over 4 years so I guess if we test positive for anything it could very well be an American variety of nastiness). Of course there is a detailed form to be filled out about each of our physical conditions. Near the top, right after the general name, address, age info is a section called "class A conditions" I imagine that class "A" conditions are those that raise red flags. They include items like active TB, HIV, Gonorrhea, Syphilis, infectious Hansen's disease. I can understand the government wanting to keep a lid on that stuff. Further class A's include sexual deviation (I don't know if that is an actual physical anomaly of one's private area or a propensity to like folks the same sex as you in a romantic way), insanity or previous attacks of insanity, and a few other items that sound pretty concerning. Mental retardation is also a class "A" condition. So, along with the poor folks who have had the misfortune to contract some terrible diseases are the ladies and gents who, even though they might be healthy as horses are cast into the leper colony because of a lower IQ. I feel a little smug about the fact that Will is a mentally retarded American, but the fact that all of the class "A"s can be cured or controlled with drugs and therapies except for the MR makes me wonder what is the point of calling MR a condition that could jeopardize one chances of living in the US. Why is MR included with communicable diseases?
"Give us your poor and huddled masses" apparently does not include those scoring below average on the IQ test. To be honest, I do not actually know what happens to a person applying with a class "A". The fact that they are asking tells me that it can't be a positive for your application. I am going to ask the government approved doctor when I visit to see if he has the scoop on the situation.
I have always maintained the world needs more people with DS. Countries should be welcoming them with open arms, not turning them away. Like the class "A" diseases that can spread possible infection, MR often spreads acceptance and understanding and give every citizen the opportunity to become better people and better, more selfless people make a better country. MR should be an automatic free pass in. In my opinion.

Visit Diary of a Goldfish to learn more about Blogging against disablism day.

UPDATE: The very nice doctor I spoke to about the application medical did some checking on his own time(!) and found that the forms were outdated and someone with MR cannot be barred from pursuing naturalization. When I asked him about this his first response was that it didn't sound legal to discriminate against someone with a lower IQ. After his search he said that there are instances that someone with MR can be barred. Those would involve people being a threat to themselves or others. So, it seems that the government is enlightened on the subject after all. Well, at least the beaurocrats are.

What I need here is a video clip

You should all see the extremely non-elegant, yet adorable way Will has of getting around. He is now an independent walker, but I must use the term "walker" with some restraint. Will's body swaying left to right reminds me of a western showdown. If Will was packing a Colt 45 on each thigh his gait would make a lot more sense and would appear manly.
I went out and bought some euro-styled walking boots at his PT's suggestion. It was the last step (pun intended) before orthotics were going to be pursued. I was ecstatic when I saw the euro styling as I was expecting another pair of miniature army boots.
That ankle support did the trick and Will was off and getting into more trouble than I had counted on. Still, his off and running style was more of a 'howdy, pardner' sashay. Don't think for one minute that a pendulating cowboy walk is slower than another form of ambulation though.

Yesterday was Will's MFE (Multi-factored evaluation) and I sat at a table with 8 professionals who had assessed Will last week. They were evaluating if Will was eligible for special services at school next year. (If you are a new parent or are expecting a child with DS, don't you kind of assume that it's automatic? I did, but that is apparently not the case.) Anyway, after the PT reviewed her assessment of Will I told her I was going to quote directly from it here. Her description of how Will walks made me laugh when I heard it explained in a clinical and right to the point fashion.

Will uses a bearwalk stance to come to standing.(That's good they tell me)He ambulates independently using an immature waddling gait pattern, semi-high guard position of the upper extremities, exaggerated trunk sway, decreased trunk rotation and extension, and decreased heel-toe progression.

Will did qualify for PT, ST and OT after all, but interestingly, he scored boring old normal in the behavior, emotional and cognitive areas. We now refer to normal as average, and isn't average a touch blase? I understand that Will is not apt to stay average forever, but for right now the unpredictable and extra-energetic lifestyle of a two year old puts him at "normal".

The analogy of walking down a lesser travelled path for families who include a child with DS is often used. So here we are, a family progressing down a relatively quiet thoroughfare, following a very small, tow-headed cowboy who is ready to take on the world.

National Siblings Day

Thanks to Jodi at Reimer Reason for enlightening us all about the fact that it's National Siblings Day today. What a great group of people to honour for, at the very least, one day a year.

I remember the day my three kids became these kind of special siblings. As I dealt with my own shock and panic on that first day I can remember the little narrative my brain was having with itself. I vaguely remember a small voice inside my head postulating about the fact that "this is gonna get way worse". I paid very little attention to it as I was otherwise busy with my own despair and bewilderment. What seemed like a little distraction to my troubles became louder and more evident as the day went on until finally I realized what it was saying. "What are you going to tell the kids!?". That started another wave of panic because I had no reasonable answer at the moment. As an aside, the thought of telling the people closest to you that your child was born with DS seems like the most daunting task because up until the moment you do there can still be the chance for disbelief or self-denial of the truth. In our experience we found that as we told people the better we felt about it.
So, what to tell the kids was something I had to figure out and approach with the common sense that had packed up and left post diagnosis and I was clinging to pure faith. All I could come up with was KISS, the "keep it simple sweetheart" slogan that once hung in one of my high school classrooms. Well, it was a start. So I decided to stick to the facts and handle the fallout as it happened. There was to be no tears or twisted faces from me as I didn't want the kids to think it was the end of the world because clearly it wasn't as the sun still came up that morning and the kids all called with happy excited voices. In the end, it was the kids way of dealing with it that inspired me. We told them and they digested for a moment, thinking through whatever it was they needed to process to understand what this meant for them and their new brother. Then the sensible questions came. Not many, but somewhat all encompassing ones like, what do you mean different and what is Down Syndrome? Olivia got very upset when we said Will would look a little different. To save a lot of explaining I found a picture of a little girl on the internet and showed it to her. She didn't think the girl looked all that different and her tears quickly dried. Knowing that their brother had DS did not even put a short detour in their journey to know and love their brother. They still all wanted to hold him or help change or bath him. They fully understand that Will has special needs and they are enthusiastically there fulfilling those needs. I took a few lessons from them in how to see past the diagnosis and see the person, the brother, the new baby boy.
I have stood back in amazement at seeing my older children become people I could never in my wildest dreams have imagined. It is not only my observations of their character that surprise me, but that of teachers, acquaintances and friends who share with me their impressions of three kids who carry a special knowledge and understanding. I am so proud of Mitchell, Olivia and Jack. Seeing them with their brother is usually seeing them at their best. They make the footsteps that Will is going to follow and I think they are aware of that. I don't think they are yet aware that they are making footsteps for many though, as they have become greater people because of their devotion to making life better for Will.

Image of Will and Olivia's footwear. Olivia was so happy to see I found some Crocs in Will's size. Matching footprints.

World Down Syndrome Day!

Click here to go to the official World Down Syndrome Day web site!

Today is the day that everyone should take a moment to really think about misperceptions they have carried with them for too long. Today is a day of learning and understanding as we appreciate what people with DS bring to our lives and our society.


Here is Will snuggled under a quilt I am working on. It's an "I Spy" type quilt made with the DS awareness colours. He is doing one of his favorite things...looking through a book. Too bad he has a cold!

Jimmy/Radiohead

This is a great video I found at I Never Thought. An excellent point gets made in this video with the added bonus of great music.

Will, a homily.

Last Sunday Jack and I attended an instructional mass in preparation for his upcoming first communion. Fr. D. was presiding and he took the 100 or so kids through the various parts of the Sunday service. Besides the illumination of the altar, the church lights were all off and sunlight streamed through the stained glass of the sanctuary. I half listened to Fr.D. and half let my mind wander over some of the things he was saying.
He asked the kids what followed the readings and a few little hands went up and said the reading of the Gospel. Then he asked again what followed that, naptime? A few parents chuckled and some kids answered the homily. Fr.D. explained that the homily is the chance for the priest to give the words of the Bible relevance in our everyday lives. A way for everyone to see how those very old words are still something we live with in our modern lives.
I let my mind stir these thoughts around. I have always maintained with anyone I'm comfortable sharing with, that Will's arrival affirmed God's presence here. I know that this opinion could be met with astonishment by some. I can quote sections of the Bible that instruct us to love everyone and that those who are last shall be first and being knit in the womb exactly how God intended. It is more than that though because Will answers some of the why questions for me.
Will demonstrates how far we have moved to a place where the gifts of every person born become irrelevant due to a new, modern idea of "gifts". I think Will's life is a homily, a reminder of what is important and what is not. He is a directional sign that points back to a place where loving and joy is given equal standing to IQ points.
I have heard this theme many times from parents who have kids with DS, how they feel that their child somewhat centered their life and gave it a new and deeper meaning. How lucky we were to have the opportunity to get such clarity. I would never have known this had Will not arrived. To me, Will's life has a greater call than we can imagine. He is an opportunity for each of us to become more. He has the most to give me, our family and society. His selfless gift reminds us of the life that the bible calls us to live, and that indeed, makes him a homily.

Blind Dalmatians

This photograph, called Blind Dalmatians, was one I stumbled across when looking through the archives at daily dose of imagery. It was a textural curiosity. Then I read the caption underneath. I found it chilling. "I was going through my archive of Whitby's abandoned psychiatric hospital photos and found this from the children's ward."
This picture was taken at the Whitby Psychiatric Hospital. As I mentioned earlier about this photographic blog, it covers the Toronto area, where I grew up. I am very familiar with the Whitby Psychiatric Hospital. Growing up it was common to zing a friend with a "you belong in Whitby" or "did you just get out of Whitby?". We were aware of who resided in that place and we imagined all sorts of scenarios about men and women who had come to the edge of their sensibilities and found solace behind the barred windows of the "funny farm".
I never imagined the above scenario. I never imagined the kids. I never thought that a child would be a resident there. I think that is a common oversight. In the comments that ran beneath this picture a few wondered why there would be a children's ward at the psychiatric hospital.
But now I know. I understand who would have looked upon these walls, eight years previous to this picture being taken, when the hospital was still open. This picture was taken just before the demolition crew came in. It had been abandoned and left to shrink into history. That explains the cracked and peeling paint. It's the two dogs that got me, their lack of eyes. It hit me all at once, the children's ward at the mental institution, the weeping dogs. I realized all at once that those children were the ones abandoned at birth because they were going to be a "burden". They were "never going to learn". They would "never know their parents, never communicate". They were born with DS, they had an extra chromosome. Here is a wall in a place that housed the kids society had given up on, had decided they would never get a chance. And so the dogs wept, cried at the waste of a child left to shrink into history. Or was it a compassionate soul blinding them from the what had to be such a sorrowful thing to have to watch.
Let me emphasize that this ward held children as recently as eight years earlier. There are doctors out there who can only imagine kids with DS in this scenario. The medical books would still discuss this as fact. Those broken walls and those weeping dogs are gone now. Terrible memories that, sadly, are still the point of reference for many in the medical community. It's ironic we can close the doors on those types of places, yet we can't open the minds of people who can't or don't want to see how wrong and mistaken that all was. That time when parents were deprived of an immense joy and an earthly understanding of love that transcends any of medicine's rationalities.
Maybe I'm the fool for thinking things have changed. Maybe it is just that the medical field has found other, more effective methods for dealing with "these" children.
Somewhere out there those dogs are still weeping.

image: Sam Javanrouh

Cute, Cute, Cute!

Do these three caterpillars vaguely remind you of something? I'm sure most of the readers here have come across some similar shapes before....those three guys up there represent the three twenty-first chromosomes! The designer combination that creates Down syndrome...T21.These cute caterpillars are the creation of Becky Bowen. She knows a thing or two about DS as her daughter was the inspiration behind them. The best part is that you can have these caterpillars in your own home. Becky has started an online business that makes these "Go your own way" caterpillars into wall art or note cards or totebags or t-shirts. It's worth a visit to her site BSB Creations.

I have already placed my order and am waiting patiently while she creates my items by hand!

image: BSB Creations

Post 100. Anger with Eloquence.

I just visited Motherhood-Unscripted and I am still in awe of the speech I just read at her site. It was written by a high school student who is obviously angry. I can't blame him, I am too. He was eloquent and had a captive audience, which is now larger than the group of students and teachers assembled in his high school auditorium. I firmly believe that today and throughout history, things people do for themselves are only ever noticed by one person, but what men and women do for others propel them to greatness. It looks like the young Mr. Palumbo is destined for great things.

Stop by and take the time to read the speech in it's entirety.

That's Entertainment!

I have just added the _Gifts_ montage to the sidebar so you are just one click away from the inspiring collection of our kiddos! I can watch it over and over, it always leaves me feeling happy and blessed. There is also a link to the _Gifts_ blog there, so you can see what is developing with the re-release of the book.

Lifejacket

You'll notice that further down in my sidebar is an invitation to visit Hurricane Point. This is the place our family just purchased in the fall. It is an old cottage on a beautiful lake in Canada. Anyway, with spring around the corner we are busy trying to get things ready for a relaxing summer holiday. I don't know exactly how relaxing it will actually be having a two year old spend an extended summer vacation on 195 ft. of shoreline. We are busy retrofitting a few safety items in and around the cottage. Door alarms, locking gates, a totally enclosed deck, and a metal gate at the dock. That's where we have started. The next thing was making the list of rules that all the kids were going to have to follow, like rule #1, if Will is outside of the cottage he must be wearing a lifejacket. No ifs ands or buts. Always.


So, with rule#1 in mind I set out researching lifejackets. Will has sported lifejackets before, usually in dry, safety precaution conditions. When I had taken Will to the moms and tots swimming lessons and he wore a traditional jacket, I noticed that he rather enjoyed planting his face forward into the water, curious as to what was down there I guess. This scenario is not great if a child is wearing a traditional lifejacket. That padded flap on the back of a lifejacket's neck is supposed to turn a kiddo on their back and keep their face out of water, however it is not always the case and a child's weight distribution and activity level in the water can actually roll them and hold them on their face. Each child should try a few different lifejackets to ensure that they find one that is suited best for them.







For instance, Will is now at 29lbs. At 30lbs. most lifejackets are at their weight capacity and it is time to move up into what, in most cases, is a life vest. A life vest will not help a child hold their head out of water. I have been searching for a lifejacket that has a weight capacity of up to 35lbs. I came upon a Canadian company that makes jackets just for differently-abled people. They make a jacket that has most of it's floatation pads in a circle around the shoulders, keeping all faces out of the water! That seems like a good idea for Will. It also gives more room around the body for freedom of motion to learn kicking, strokes and treading water.


I thought I would provide a link to the company here, so you can check it out for yourself. They are pricey, but I wonder, since they are an adaptive tool, they might qualify for some sort of grant. Your local pool might also consider purchasing 1 or 2 if children with disabilities are regular visitors. It seems the company sells mostly to organizations, schools etc.

image: Lifejacket-Adapted inc.

Suggestion

I don't know how many people who have children with DS are involved with fundraising, education, advocacy. I'm sort of involved. A little fundraising here, a little advocacy and education there. I have a two year old and two year olds keep you from some of your good intentions.

I do have a suggestion though. I know, people who are knee or neck deep in time commitments to organizations do not want to hear suggestions from us casual helpers, but I'm going to make one anyway.

I notice that there are a large number of golf fundraisers out there. A chance for families to get together and raise some cash while having fun and sharing a great meal. I think that, since all the organization of these events have by now had all the wrinkles ironed out of them and they have become annual events for the most part it could be time to change their focus. Maybe instead of friends and celebrities playing alongside people with DS and their families we should invite some of the golf playing members of the medical community. Let some of the doctors who have not had the opportunity to see DS for themselves other than through paragraphs in books. Let them see that a hand with the single palmar crease can efficiently wrap itself around a club and contribute to a decent swing. Let them see that enlarged tongue can contribute to a hearty laugh or maybe a subdued "damn" after a not so good shot. Let them see those short legs travel the 9 or 18 holes on foot and then learn that the player had major open heart surgery shortly after his birth. Let the doctors wonder about the slanted eyes that are shielded by a pair of sunglasses and a visor. Let the doctors realize that all those things they discuss in their offices are really besides the point.

I think that the DS community needs to open the doors to fundraising activities to doctors who are needy of the life experience of actually meeting someone with DS. Imagine what they will return to their office with. Instead of the "will be a burden" sort of comments, they will feel compelled to talk about the person they played golf with.

Again, just a suggestion.

Continuing education

In the last couple of months many families that include a member of the T21 club have been exasperated by some of the medical communities response to prenatal testing for DS. Rightly so, for that response has been one that paints such a negative picture of what life with DS is.

These families have been put on alert and are getting aggressive at getting the truth out there. Books, newspaper articles, websites all aim to provide expectant parents with realistic snapshots of life with a little more. These tools are going to provide valuable watershed moments to expanding families. It is a very hopeful feeling to see families enthusiastically adding their own experiences to the the story of Down Syndrome, letting people see that there is a "happily ever after" component to the story. To let expectant or new parents understand that there actually is a story of Down Syndrome, and that it is not just a short footnote to parents trying to shape the perfect family.

The story of Down Syndrome always begins with a dramatic jolt, always begins with many raw emotions that make you believe that this story will be too sad or wrenching to continue. Reading on, you discover a story that is compelling and revealing and hopeful. Reading on provides both self discovery and surprising enlightenment. The story weaves joy, encouragement, accomplishment. It shares pain and frustration. It gives us humour and excitement.

The story of Down Syndrome is remarkably similar the the story of any life lived, any life that holds dreams and expectations and love and a remarkable journey. The story of DS is one of more drama, more unknowns, more surprises and any writer will tell you that these qualities make a better story.

In light of the medical community's efforts to close the book on the story of Down Syndrome, families are beginning to introduce us to their own tale of a life worth living. And while these families share their children's accomplishments and demonstrate that the perceptions are false and shed light on the abilities rather than the disabilities, step back and look at something else. Look closely at the faces, look at how they love and respect one another and how their journey, their story is mostly about discovering places within themselves that gives their experiences more depth, more meaning, and more value.

The story of Down Syndrome starts out with the medical explanation of an extra copy of the 21st chromosome, of a baby being given more than other children. It is a theme that runs through their life, their story. A story of more.

So it is left up to us, the active participants in the wondrous story of DS, to defy the critics of our children's lives. To remind people that the critics have never even read the book, for if they had the beginning of our story might not be so dramatic, might not have that bleak pall cast over the very first chapter.