Downs, The History of a Disability

The DSAH is very proud to be involved with the launch of the book Downs, The History of a Disability, at My Dog Joe’s Cafe in Westdale.

Written by Dr. David Wright of McGill University, Downs traces the history of the syndrome we know so well from it’s original assessment by a Doctor and avid amateur photographer, to it’s current levels of acceptance in society and the community.

Dr. Wright has written a fascinating account (you may recall I sent around a notice regarding the story on CBC’s Quirks and Quarks radio show a few months back – here is the link in case you missed it – you have to scroll down a ways to find it), and it promises to be a fun evening.

The launch is on Tuesday March 13th from 7:30 to 9:30, although by no means do you need to stay for the whole thing.  The formal portion of the evening will start at around 8:00.

The good news is that Dr. Wright is an engaging and interesting person that you will get to meet, and ask him about his research.  The further good news is that My Dog Joe has arguably the best coffee and baked treats of any coffee shop in Hamilton.  There is no bad news.

Just so the Cafe can staff up appropriately, can you drop us a quick line to contactus@dsah.ca to let us know if you’ll be coming?  We do hope to see as many people as possible there, and show our support for Dr. Wright’s important work.

Finally, there will be copies of the book available for purchase at the event, but if you plan to pick one up in advance, I would (on a personal note) encourage you to do so at one of Hamilton’s independent book stores, Bryan Prince or Epic Books.

Thanks, and we hope to see you there.

STAR Article about Prenatal Testing of Down Syndrome

A thoughtful and well written article in the Star today.  Should prompt some good discussion.  Please share and repost.

The issue of prenatal testing is complex and important.  Glad to hear it’s getting a thoughtful airing.

Busy Winter, Busy Spring

Just a quick update on the goings on with DSAH.  We have announced the date and location of our Golf Tournament (Century Pines on June 22nd), and the Cooking Club is underway for our older kids, and we are gearing up for a great event at the end of this month.

Last Thursday we welcomed Michael LeClair from the Monarch School that was in Burlington several years ago.  He described the ups and downs of running a program with amazing results, and high expectations to boot.  Monarch is no more, and while there has been much thinking with the DSAH and DADS groups about the desire to run such a program in Hamilton, what we need more than the money at this point is a strong volunteer base.

Did you child participate in the Fun Club.  Is he or she part of the Cooking Club?  If you would like to see more regular, and frequent programming like that, think of how you might be able to contribute, for instance by finding golfers for our golf tournament,  shopping for toys for the Christmas party or even flipping burgers at the Barbeque; and drop us a line.  Many hands make light work, as they say, so don’t be shy.

Together, we can build a strong organization and can continue to do the great work of Celebrating our Kids, Educating them and the community at large and Advocating for a more fair place for them in society.

The last year has been amazing, and with ‘Celebrate, Educate, Advocate’ as a fresh way of seeing our work, I can’t wait to see what this year brings.

Busy Fall

It’s been a busy couple of week at the DSAH.  In last September we held an amazing night to help parents navigate the ins and outs of the IEP World.  Judy and James did a great job of clarifying some of the mysteries, including just how specific to get with your iep (very!) and when it is due (October 17th!).  If you weren’t able to make it, and would like the info, just let us know.

Also, coming up in October is our annual Halloween social.  It’s on October 27th at 6:30 in the Community Room at Fortino’s Eastgate.  We’re going to have a Pizza making party for the older kids, and candy apple decorating for the younger ones.  There will also be other games and activities, including ‘bobbing for donuts’ (you’ll have to come and see for yourself).  It plans to be a great time, so make sure to send us a note at contactus@dsah.ca to let us know you’ll be there.

Also – there is only one week left before the DSAO conference in Niagara Falls.  From what I understand, the hotel rooms are all booked, but check the website at dsao.ca for details on late registration should you wish to commute back and forth.

Hopefully everybody is having a great fall, and settling in nicely.  As always, if there’s anything we can do to help, please let us know.

Jason

A few updates from our last exec meeting.

Hi all,

I just wanted to provide a couple of updates from our last meeting.  Some of these may impact you financially, so please read carefully.

We have decided to suspend the reimbursement of any Speech Pathology receipts dated after June 30th, so as to give the exec time to draft a functional, fair and transparent reimbursement policy that will actually be used by a broad cross-section of the membership, and that will also not bankrupt the organization.

We will be having a meeting in September to discuss this, and it will be the first item on our agenda.  At this point, the direction we are leaning towards is a bursary with a set amount, similar to how thing are done in Kitchener Waterloo.

Once this is in place, we will communicate the program thoroughly with everyone.  In the meantime, if you have any questions, please feel free to email me at contactus@dsah.ca

The second news – is that the Boat Cruise is coming up on Friday  August 12th at 6:30pm aboard the Hamilton Harbour Queen.  Celtic Music prodigy Liam McGloshan will be putting in an appearance, and the dinner and dancing will be second to none.  Tickets are only $80 each, and are available by emailing contactus@dsah.ca.

Finally, we are gearing up for our annual DADS barbeque, which this year will be on Saturday August 27th.  It promises to be at least as much fun as last year, but due to some flooding damage in Dundas Driving Park, the location may be changing.  We will keep you posted.  In the meantime, if there are any dads available to help out the day of – specifically in arranging games (soccer, frisbee, etc), for flipping burgers, or for helping set up and take down, it would be very much appreciated.  For more info, or to volunteer, please talk to Mike at dads@dsah.ca

Thank, and as always, we look forward to your feedback – please feel free to leave it in the comments section below.

Jason

Ray of Hope

I don’t know if you have been following the extremely difficult story out of BC of the 15-year-old girl with DS who was found with the body of her drug addicted mother who had been dead for 9 days.

It’s a story of the breakdown of an overstretched system, and up until now, was just an unending string of sadness and horrors, especially for a parent of a kid with Down Syndrome.

Today, however, the Globe and Mail printed this story:

http://www.theglobeandmail.com/news/national/british-columbia/gary_mason/caring-respite-worker-went-far-above-and-beyond-for-teen-with-down-syndrome/article2084265/

It tells the story of a respite worker who ended up caring for the teen for a few days as her ordeal came to an end.

It’s also the first ray of hope I’ve had in this whole miserable affair, but it is in fact a very bright ray.

As parents of kids with Down Syndrome, we are often tired, and exhausted, and stretched to the limit, but we are so incredibly fortunate to have supports out in the community who care for, and educate, and fix the teeth, and prescribe the glasses, and do a million other little things for our kids.  All the while without any kind of hurtful remark, or subtle disapproval.

Yes there are those who fall short of the mark, but I trust (I hope!) that all of us have a professional or caregiver in our life who is wonderful and supportive of our kids in every way.

These professionals, and friends and neighbors really do love our kids, and they see their potential, sometimes even more brightly than we do.  It is often said that it takes a village to raise a child, and these people are very much our little village within a city.

Canada Day for me  is kind of like a mini-Thanksgiving, where I take a moment to celebrate all of the great things about living in such a wonderful country.

After reading the story of an until-now anonymous respite worker in BC who gave so much of herself, for so little return, for a kid that the rest of society had completely forgotten about, I’m reminded that despite how bad things got – there are still people and professionals who make Canada a wonderful and enriching place to be for our kids each and every day.

Let’s all find one and thank them today.

2011 Golf Tournament A Success!

Our Golf Tournament went off without a hitch yesterday and appears to be a resounding success!!

Even the efforts of the Golf Committee, who gathered en masse Wednesday morning to stand atop the King’s Forest club house to collectively blow the rain clouds away,  were rewarded with not just a lack of rain, but some warm sunny weather despite the forecasted predictions! Well done!!

Click on the link to the right to view some of the early uploaded photos taken yesterday.

feel free to offer your comments below!

What was the highlight of the day for you?

Thoughtful, balanced article.

For those of you who don’t know, there is a blood test that will be available on the market in the next year or two in the U.S. (and probably shortly after in Canada) that will be able to determine the presence of Down Syndrome in a fetus at around 9-10 weeks gestation, with a very high level of accuracy.

Some people feel that this could lead to the ‘extinction’ of people with Down Syndrome, or certainly to a very great reduction in the number of babies born with the condition.

This could have huge implications when it comes to issues such as services available in the community, integration in schools, and acceptance of our children in broader society.

Just a few comments on my part:

The London Down Syndrome Association (just up the 401) has been attending Neo-Natal fairs in that city (basically a trade show for expecting parents) for a few years now, and armed with good information and great stories, they have seen a bit of a baby boom of kids with DS.

It seems that when parents have accurate information about what it’s like to have a kid with Down Syndrome, they are more likely to choose to carry the baby to term.

The CDSS is working hard on a policy on this issue, and will be working to build awareness in the very near future, specifically on the issue of pre-natal testing.

In the meantime, I thought the following article in the Toronto Star,

http://www.parentcentral.ca/parent/babiespregnancy/pregnancy/article/1007427–earlier-test-for-down-syndrome-is-close-means-tough-choice-for-parents

was extremely well-balanced and thoughtful.  It quotes Brian Skotko, who is a Harvard educated professor, and leading advocate for the rights of those with intellectual disabilities.  Those who were at the DSAO conference two years ago know exactly who I’m talking about.  You should also know that Brian has a sister with DS about whom he tells the most loving…and hilarious…stories.

Please take a moment to read the article, it’s worth your time.

Also, just a note that this month’s exec meeting will NOT be on the 23rd, as that’s the day after the Golf Tournament, and we’ll all be knackered.  Instead, we’re going to hold it on the 30th.  Location still TBD, but I will update here once we know.  Of course if you’d like to come and help with the golf tournament, many hands make light work, and we’d love to have you.  Just send us a note and we’ll fill you in on the details.

Jason

Annual General Meeting

Well, it’s official.  We’ve had our AGM, and the ‘new year’ has now started for the  DSAH.  Our new executive has been elected, and thanks to everyone who stepped up to volunteer.  Special thanks to Maddi Cain who was kind of press-ganged from the floor, but it’s all good.  Maddi, you’re a valuable new member of the team, and we can’t wait to get working with you.

We heard about lots of initiatives tonight – about Tara and the New Mom’s group.  Stay tuned here for more info.

We also heard about the great Boat Cruise the DADS are putting on as a fundraiser.  Come one come all to this great event in August.  It’s going to be a fun evening for adults to come together and be … adults.  Rather than parents, or even ‘parents of kids with special needs.’  It promises to be a good time to reconnect, so stay tuned for more details.

Also, the next DADS meeting is at Milestone’s on the Mountain on June 10th at 7:00 pm.  We would love any and all fathers of kids with Down Syndrome (whether you’re association members or not) to come by – many hands make light work, and you’ll feel like you’re doing something intensely practical to improve life for your kid, and for all the kids with Down Syndrome in Hamilton.

Finally, I would be remiss in my duties (as the newly elected Prez, btw) if I failed to thank our three outgoing members for all their hard work.  Judi Pavlechenko put in a huge number of hours over the years to keep our Nevada fundraising up to date, and for that we’re thankful.

Leslie Rockwood has given up plenty more Saturdays than we had a right to ask for in service to the Down Syndrome Association of Ontario, and is leaving such a gap, that the Vice Chair of DSAO is basically begging her to stay.  You will be missed.

And last but not least, Alex, our fearless (and indeed, an utter lack of fear was required sometimes) leader, who sacrificed endless amounts of time in a role that she very quickly realized wasn’t ideally suited to her.  But instead of pulling a “Sarah Palin”, she stuck it out, honoured her commitment, and saw us through to some great new beginnings.  Under her watch, the DADS group was formed, the Fun Club was started, and for the first time (in ages, if not ever) we started offering age specific socials.  She didn’t do all that, but she helped us to get going, and when needed, she got the heck out of the way.  She won’t be at home with her feet up for long, and to whichever group she turns her attention to next, we say congratulations.

And for the rest of us?  Well, we’ve got some work to do.  We have events to organize, a golf tournament to pull off (have you registered yet?  Why not?), and plans to make for the coming year(s).  If you haven’t spoken one on one with an exec in a while, get ready for the phone to start ringing.  My goal is to have reached out to every family in the DSAH by the end of the summer, to find out how we can help. and if and how you’d like to help.  Together, we can make a city where our kids are just as loved and accepted by others as they are by us.

We’ve got a ways to go, but it’s a fight that is most worth fighting.

Where To Start?

One of the features we want for our new website is a constantly refreshed, up-to-the-minute information system for our members and community. Super easy to do in this format. The problem comes right now in that there is a mound of information backed up and waiting to hit the web!

So where do we start?

Two options.

One – just put everything out there. Categorize it. Tag it. Sort it. And then visitors can muddle through it all and find what they need – fairly easily, mind you. But put it all up there at once.

Or two – start putting one item out there almost everyday. Dribble it all out there slowly so that regular visitors can catch it all as it goes by.

After much deliberation and consideration, we’re going with the first choice – for a few reasons:

1. It’s easier. The webmaster right now consists of one parent volunteer. To sit at the computer and load all of the relevant information onto the site in one or two days is preferable to having to sift through it all daily for what will likely amount to more than a couple hours a day for more than a month. With regular updates after that.
2. It’s more convenient to our visitors. There are visitors out there who need relevant information now. Not when a particular topic’s number comes up. Let’s get it all out there as fast as we can.
3. The new format really does have a great filing system. You can find what you need by several different search criteria: recent posts, archived posts, categories, topics (tags), or choose your own search. Use the search options to the right, a little ways down, to find the information you need. And of course, if you need any help at all, just drop us a line.
4. And the absolute best way to keep up with everything DSAH and Down syndrome, is to subscribe to our updates by email. Just click on the ‘sign me up button’ to the right and you will receive all of our updates by email. You will have the option of choosing how often you receive your updates – immediately, daily, weekly, etc. And you can unsubscribe any time you wish. It’s an automatic thing. We won’t be spamming you.

And so, without further ado, we will be loading up the website with everything we’ve got to date. Please drop us a note if we’ve missed something. It’s all being added in no particular order of importance, relevance, or preference.

Thanks for your patience as we grow a little bigger and better.