Congratulations to Elle’s EA, Cassie Doucette, winner of Paraprofessional Award from C.E.C. Brant-Haldimand-Norfolk.

When it comes time for a first-born child to go to school for the first time, every parent has more than a few moments of apprehension as they hand their child over to a school they may not be familiar with and to a teacher they do not know.  As parents of a special needs child, these moments are that much more pronounced and intense. 

Elle has always really struggled with change, and although we knew that she would eventually adapt to the change, what we were not prepared for was how smoothly it would happen.  Upon meeting Elle’s EA, Cassie Doucet, she immediately eased our fears in that she was genuinely interested in hearing all about our daughter.  Not only has Ms. Doucet ensured that all of Elle’s needs are met, she has consistently gone above and beyond.  We, as parents, are so thankful to have her as Elle’s first EA.  Not only did we get the sense that our daughter would be in a safe and caring environment, but Ms. Doucet’s passion for education gave us the confidence that kindergarten would also be a place of great learning for our daughter.  Ms. Doucet welcomed Elle to the school with open arms, which let her know from the start that her classroom would be a great place where she would learn, laugh, grow and flourish – Elle fell in love with Ms. Doucet within the first few weeks of school.

 We know and trust that Ms. Doucet cares for Elle in a manner that she would want her own children to be cared for.  Whether it is to check in with us following increased seizure activity, or send home a get well card and comfy PJ’s after hospitalization. 

 In the fall, Elle had a flurry of seizure activity.  Her seizures cause paralysis, making her unable to sit up on her own, let alone walk.  One of these days happened to be on the day in which the class had a trip planned to Myrtleville House.  Despite the on-going seizure activity and paralysis, Ms. Doucet, advocated for Elle to be able to go on the trip because she had been really looking forward to making cookies.  Notwithstanding the challenges that this posed for Ms. Doucet directly, in that she would have to carry Elle (who weighs nearly 50lbs), Ms. Doucet did not even hesitate to convince us that it wasn’t necessary to pick her up, and that she was more than prepared to make this work for Elle.  This is just one example of the many times that Ms. Doucet has gone beyond the expectation of an EA.

 Not only has Ms. Doucet helped Elle to integrate into her school environment, she has also helped us as parents to understand her role in supporting Elle.  It makes it much easier to send Elle to school when she is having an ‘off’ day, knowing that Ms. Doucet is there for her and able to understand her needs.  Ms. Doucet once said to us while trying to ease our worries about leaving Elle; “this is my job and you need to go do your job”.

Ms. Doucet has found ways to encourage Elle’s development and is constantly coming up with creative ways to engage her in activities, and to help her find and celebrate the small successes.  With Ms. Doucet’s support, since September, we have seen our daughter develop in a way that we only hoped to be possible.  We see evidence in the work that she brings home (drawing lines, colouring pictures) and the fact that she now shows interest in, and asks to make crafts at home.  We hear about her participation with her peers in the classroom, during gym class and outside on the playground at recess.

 Ms. Doucet has also been open to on-going communication with us as parents.  She writes to us daily about Elle’s day, what she did, observations related to development, struggles etc.  The communication is always strengths-based and child-focused, and allows us as parents to clearly know what she is working on with Elle so that we can continue that work at home.   When asked to keep track about different things (ie rumination, seizure activity, lethargy etc), not only does Ms. Doucet report back, but she has developed charts and logs in which she is able to keep track of the information, and we can in turn share that information with the medical professionals.

 In January, when we hosted our fundraising event for Rett Syndrome.  Not only did Ms. Doucet offer to take our flyers to insert them into the newspapers that her children deliver in their neighborhood, but she and her family also attended the event.  We cannot express how much it meant to us as parents, and particularly to Elle, to have Ms. Doucet’s support.

 To say that Ms. Doucet goes above and beyond would be an understatement, and as parents we constantly struggle to find a way to say thank you to her for all of the care, love and support that she shows our daughter.  We truly believe that Ms. Doucet deserves to be recognized for her outstanding work, as she has filled our daughter with a passion for learning, confidence that she can accomplish anything that she puts her mind to, and we believe, that she has started our little girl on a great path that will lead her to great places. 

 

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Grandville Invitational

It’s amazing what can happen when caring people come together for some great golf, good food and companionship – all in the name of bringing a neighbourhood together while at the same time raising some funds to support a local charity.  That’s what happened this weekend in our neighbourhood.  The Grandville Invitational, organized by Wes Willard and Mike Wilkinson, came to life and raised over $1300.00 for Ref4Rett.  We can’t thank everyone enough for the continued support.  

A very special thank you to Wes and Mike for taking on this enormous task.  For helping to bring our community together and for supporting Ref4Rett.  

A great time was had by all!!

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Ref4Rett @ WGSHT

For the fourth consecutive season, a group of friends, fellow referees and I have entered a team into the Walter Gretzky Street Hockey Tournament (#WGSHT).

This year, in an effort to continue to raise awareness for Rett Syndrome, we have changed our team name to REF4RETT and have created a custom jersey for the tournament.  This year, we have some new faces in the line up and are expecting a stronger team and a better finish than our best finish of 16th last year.

Our games are at Lion’s Park in Brantford and we play the following  games on Saturday June 1:

11:00 am- Rink 5 (Parking Lot) vs. Zidilicky My Balls

2:00 pm- Rink 6 (Parking Lot) vs. Premature Shooters

5:00 pm- rink 15 (Anges HodgeSchool) vs. Sober Bullets.
We are also hoping for some playoff action on Sunday June 2 as well. 

Please feel free to come down and cheer us on (we need the support), follow the score on this website, http://bhitourney.goalline.ca/schedule.php?league_id=8287&lang=1 or watch for our twitter updates.

Custom Ref4Rett Jersey for the Walter Gretzky Street Hockey Tournament
Custom Ref4Rett Jersey for the Walter Gretzky Street Hockey Tournament

2012-2013 Season in Review

Well, it is the end of the 2012-2013 hockey season and also the end of the 2012-2013 Ref4Rett season.  It was a relatively successful hockey season, I skated in the OHA Schmaltz Cup quarter-finals, which is as far as any team in our region made it.

The 2012-2013 Ref4Rett season was unbelievable, even though we got a late start (October 26, 2012) we managed to raise an extraordinary $48,166.26.  This was significantly more that the $15,000 goal we set in November and could not have been possible without the support of so many individuals and groups.  On top of everyone that we have previously thanked, a special thanks needs to go out to an old friend of ours who currently plays in the NHL for making a significant donation from his charity in the United States to Ref4Rett and the Ontario Rett Syndrome Association.

The plan now is to enjoy the summer and start the planning for 2013-2014 hockey season, and to start to put together our plan for the 2013-2014 Ref4Rett season.

Over the summer, I am going to take advantage of the extra time that I have at home with all my girls.  Lory and I are busy planning day trips, weekend’s away and fun stuff to do so that we can have as “normal” of a life as possible.  This means buying a special trailer bike so that we can go on family bike rides.   The reality is that no matter how hard we try, there is no forgetting Rett and the impact that it has on Elle and our daily lives.  Just a couple of weeks ago, I had to carry Elle through an indoor playground many times so that she can enjoy playing with friends at one of their birthday parties after seizures left her with full body paralysis.  Regardless of the circumstances, Elle had a great time and has some great friends.

While our plan is to take the summer off from fundraising, we have had individuals contact us to show their support for Elle and Ref4Rett.  The organizer of a small one day ball hockey tournament recently donated the proceeds of his tournament to Ref4Rett.  We also recently learned that Wes Willard & Mike Wilkinson, have organized the Grandville Invitational Charity Golf & Potluck Barbeque for June 8th, 2013  in our neighbourhood.  Proceeds will be donated to Ref4Rett.  The on-going support continues to overwhelm Lory and I, and we are completely grateful for it.

Also, this summer a team of my officiating colleagues are playing in the Walter Gretzky Street Hockey Tournament for the fourth straight year and this season we are team ‘Ref4Rett’ in a continued effort to raise awareness.

We also know that it is the goal of ORSA’s Board of Directors along with Dr. Patrick McLeod to launch the Canadian Rett Syndrome Registry this year.  We are so proud that all of the money raised by Ref4Rett has been allocated towards this registry.  It is the hope that all those living with Rett Syndrome in Canada will register and be considered for future drug trials and we are looking forward to registering Elle.

Raffle Winners…..

The Raffle was drawn tonight at Legends Taphouse and Grill.  The winners are as follows:

1st Prize – $1000.00 – Ralph Baker
2nd Prize – $500.00 – Lois Morton
3rd Prize – $250.00 – Mike Meszaros

Congratulations to the winners and thank you to everyone who support the raffle!!