My Journal - Week 80 (09Mar11)

Down syndrome Awareness & the Durham Down syndrome Association....
And why I want to be apart of it!

This month of March (precisely the 21st day) is World Down syndrome Day.  The date was chosen because of it's relevancy to Down syndrome.  "3-21".  Three of the 21st Chromosome is Down syndrome.  While it isn't the 21st of the month yet, I thought it was appropriate to talk about a meeting I was able to attend just yesterday.  The Durham Down syndrome Association or DDSA hosted it's Annual General Meeting meeting and I decided to attend.  Of all the associations around me, I was not yet a member of the DDSA.  The reason this is ironic is because I live in Durham!  It's hard to get out to all the associations let alone be a part of them all, but I wanted very much to become part of this one so I attended the meeting.  The DDSA had a wonderful meeting which included information that was constructive for me as a parent and also relevant for Hunter.  Examples included a speech Pathologist who was there to present information on the topic (this is currently of interest for us now with Hunter using and signing words), a financial investment specialist who spoke about the new Registered Disability Savings Plan and much more.  Along with all the presentations and information the current Chairman announced that the DDSA was in need of some new and willing people to help run the executive and the board of directors.  Interestingly, I had already planned on asking the association if I could become part of their organization in a more involved way such as being a part of their executive/board of directors.  It seemed almost "fate" that there were openings within the organization and that they were looking.  (I have about 10 years experience with being all the different parts to Executive's committees in my past).  Who would have guessed that it would be possible for me to become involved in such a useful way that is specific to Ds and where better then in my own area.  My mission to educate, advocate and support is on its way to being even better then I could have ever imagined.  So as it stands, I have volunteered and will subsequently be attending the next meeting this coming 22nd of March where the determination of the Board of Directors and planning for 2011 will take place.  I am very excited for this opportunity and endeavour.

I was able to introduce myself to the key people of the association while also reacquainting myself with the DDSA's co-chair (who is also the president of the Down syndrome Association of Ontario), and also to several families and members who already are a part of the DDSA.  It was a great evening altogether.  I had my family with me including my mother who is an integral part in helping me with Ds advocacy.  I am so excited to have a chance to become involved in this way with this association and more over to be a member with a purpose.  If I could volunteer for every aspect or position within or of the association, I probably would have but I would be happy with whatever position I am able to do in order to help.

Speaking of helping and presentations, just a few weeks ago I had the wonderful opportunity to speak and present about Down syndrome to the Kiwanis Club of Riverdale.  This is the volunteer charity organization my mother is an executive member of (and has been for about 15 years).  Helping seems to run in our family!  I was asked by the organization to attend one of their meetings and educate their members about Ds.  I was so very pleased to do so.  The comments I received afterwards is also part of what made it so special.  The members had some preconceived ideas (as most people generally do before hearing anything about Ds) and they were completely in awe and so attentive, literally hanging on to every word I spoke.  Regarding their enjoyment with my presentation, I was probably just as surprised and amazed by their reactions as they were about my presentation.  It was definitely a success.  I also have another presentation to do in May at the request of my Family Doctor.  Simply put, speaking and presenting is something that I love to do, that I am comfortable doing (as if it were like second nature) and want so very badly to continue doing.  I believe I may have more presentations in the near future, based upon some connections I had recently made and of course ones I am currently making.  Ultimately, I hope if I am able to become part of the DDSA's executive committee and or Board of Directors, that I can further help and expand in this area and do what I do best.  Help, Educate, Support and Advocate about Down sydnrome.

Ultimately what is nice is that I am able to help educate about Ds but more amazing is the many connections I was able to make from the meeting (all the wonderful families) and new friends!  I learned from this meeting that there are over 200 (known) people in the Durham area alone who have Down syndrome.  While this number sounds large, it doesn't surprise me.  According to the World Wide Web, in 2008 the "total population" for the Durham Region was quoted as being 590,000 with an average of 10,000 new residents per year.  (That ratio would be about 1:3000 which makes the actual number of people with Ds small in comparison) In the past, before Hunter - that number would have completely blown me away.  The reality is, there are more people with Ds in our community then anyone might have guessed and it is my/our job to help find these families and be there - whether to help provide resources, support, information, opportunity or even just friendship.  This is my goal - besides plain old advocacy.  Which will in turn make it a much better world for my son and anyone who has Ds.

And back to "Hunter", it's official.... Next week Friday (18th Mar) will mark his first actual swimming lesson with the B & C  Aquatics swimming club!  It will also mark the first time I "hand" over my son (to a person he doesn't know) for a period of time.  While having a baby/child is full of milestones and discovery for the child, so is it also for the parent.  I know I have already rambled on and on in past posts about how it will likely affect me more than him, I can't help but stress about the upcoming separation.  Clearly, it's why they call it "separation anxiety".  Hopefully it wont be as bad as I am feeling it might be (the separation, that is).  Perhaps I will get it all out of my system before the 18th.... Of course the reality is "then again, probably not". 
  • Reminder to self:  "Hunter is/will greatly benefiting by learning to swim and this is more important than my separation anxiety".  
  • Repeat reminder every so often up to 100 times a day.
  • If repeat fails to hinder anxiety, cry and eat an Oreo Cookie and blame current pregnancy hormones.
Updates (as always) to come!


  1. It's good to hear that there has this association in which built to help the affected by Down syndrome. It also provide good education yourself.


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