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.

Watch Your Mailboxes

Our Spring mailing is going to the post office on Wednesday, March 30th.

As with all of our Spring mailings, each package is chock full of important information for all of our members. Look for:

• your spring newsletter – please read it carefully – there’s lots of info there;
• your 2011-2012 Membership Renewal Form. Please complete it in full so that we can update and correct our records. Mail it back to us in the enclosed self-addressed stamped envelope as soon as possible with your fee. The membership renewal deadline has been extended to May 1st.
• your Spring Social invitation – be sure to RSVP as soon as possible so we can confirm numbers;
• an information notice for our pilot speech pathology program for DSAH members aged 3-9. Registration for the 12 spots is first come first served. Check your mailing for details;
• two brochures for our upcoming Golf Tournament – please give them to someone!

We are also asking members to include a gift card in support of our Golf Tournament with your membership renewals.

The Newsletter will be available online April 1st.

Our New Look

The Down Syndrome Association of Hamilton is pleased to present our new online look. More efficient, streamlined, and updated, our online presence now has a few more goodies.

Visitors to our newly interactive website can now

• enjoy regular updates and notices here on our homepage – front and center; all updates will be consistently showcased and easy to find,
• have easy access to past articles – they will be available, categorized, and easy to find by following the links to the right,
• conveniently subscribe to have updates e-mailed directly into their mailboxes, without having to go online,
• find current information about the upcoming events,
• contact us directly from the website without having to use their email – perfect for when they’re not on their home computer,
• submit photos, announcements, comments, links, etc. directly to us via our Contact Us form,
• interact with other members and visitors by leaving comments, ratings, and replies right here on our website,
• share an informative article with family members, teachers, health care professionals, by email, printing a hardcopy,Twitter, or Facebook, directly from the links located right under each posting,
• make a donation using a credit card through CanadaHelps.org

The following upgrades over the next few weeks will allow visitors to

• download and print membership forms so they can be filled in and mailed to us with a cheque,
• submit forms and payment for both new and returning memberships right here online, securely, using your credit card via PayPal,
• submit golfer registration forms, support commitments, and payment directly from the website, using a credit card via PayPal,
• download Golf Tournament forms to print, fill out, and mail in with a cheque,
• subscribe to our quarterly e-newsletter, having it delivered directly to their inboxes.

All of these exciting changes make for a more user friendly, forward thinking, online experience for our visitors. We welcome all comments and suggestions while we tweek the details. Let us know if we’ve missed something, messed something, or aced something.