My Journal - Week 54 (30Aug10)

All the projects go round and round... 
Or - at least make MY mind go round and round!

I feel so badly, I am sure many of you have noticed my blog has taken a back seat for a few days here and there while I attempt to work on and complete many of the projects that I have undertaken.  With that in mind, I figured that I should tell the world what I have been working on!  Mind you, the list actually helps me to remember what I need to focus on, and what else is left to complete.

The projects:

  • "Welcome to Our House"  (Our Down syndrome Journey - The First Year) - The 250+ page book of our first year.  This is and has been the number one reason for my blog.  I am still currently writing this book....
  • "I Have Down syndrome, What Does That Mean?" - This is the 2nd book I have written.  It is a children's book specifically about Down syndrome for anyone curious to know about Down syndrome.  I have finally completed the publishing aspect of this book and I have received my shipment from my printer.  I am now in the process of shipping this book out.  Orders can be placed from my "Sandi's Publication" page here in this blog or through my new websites when they are up and running.
  •   / "Welcome to Our House - Ds"  This is my new website where you will be able to find positive information and resources all about Down syndrome.  Putting together this website has been a huge undertaking.  But it's coming along.  I estimate my new websites being ready in about 2 weeks.
  • Stories and Photos  -  I have requested short stories of discovery regarding Down syndrome diagnoses from everyone and anyone willing to contribute.  I have requested these stories & photos from many support sites and from members of the DSAO.  These stories and photos are going to be added to my new website, and also as a final chapter to my 4th book, Welcome to Our House.
  • Down syndrome Conference DSAO (Niagara Falls Ontario 15-17 October 2010).  While my focus to attend this conference is primarily to gain information and resources, I am also promoting and selling my book while I am there.  I have paid for an Author's Booth at the Conference, so I hope to do well.
  • Down syndrome Awareness & Advocate Ribbon Magnet.  As a Canadian mommy who has a son with Ds, I searched locally high and low for a Ribbon magnet and could not find one.  I decided that instead of re-purchasing more magnets from elsewhere, I would design and make my own!  I hope to have this ready for the conference to sell, but I will also be selling them from my new websites once it is up and running.
  • Graphic Logo Licence Plates in Ontario.  The Ministry of Transportation Ontario (MTO) sells over 100 different types of graphic logo licence plates from sports teams to charity organizations.  I have contacted them with the hopes of adding my newly created Down syndrome Awareness/Advocate Ribbon Design.  If I can get this done, advocates all over ONTARIO will be able to order their own Ds graphic logo licence plate.
  • Market my first two books with Chapters/Indigo for sale.  I have recently signed off my first book, Charlie's Adventure with and Barnes&  I am told that Charlie's Adventure will now be able to ordered at the most popular Online retailers around the world.  The unfortunate part is that currently, the online distribution only will print soft cover.  I am hopeful that at some point they will print my books in hardcover, the way they were meant to be sold.  Availability of my book from those online retailers should be in about 4 weeks.  Fortunately, everyone can order the books (at a lower price) directly from me through my "Sandi's Publications" page here in my blog, and also on my new website, & - coming soon.
  • Parent/Child support & play group - for children with special needs.  I decided back in November 2009 after attending various play groups for a few weeks, to ask the YMCA Ontario Early Years Centres if they had any groups for children with Down syndrome.  They told me they did not.  I decided that this was a group that needed to be created and run.  Apparently the YMCA agreed with me and suggested I be the one to create and coordinate one!  I have been working with them since that time to get this new group running, which will start Fall 2010.  My last meeting with them to finalize details will be this 7th of September.
  • Parent Support Guide - Appointed by the Genetics Clinic at the Rouge Valley Health System Hospital in Toronto,  I provide support for parents who receive prenatal/postnatal diagnosis of Down sydnrome.  My name and phone number is given to families who receive a diagnosis, who may want to talk, ask questions or find themselves in the very same position I was in when I received my son's prenatal diagnosis of Down syndrome being 18 weeks pregnant.  It is something I know many parents do not consider doing when they first get the diagnosis, but later wished they did.  It truly is an eye opener to talk to someone who is in the shoes you may have to wear but are afraid to.  The contact with a support person helps you to discover things that no book or article can tell you.
  • MedHelp (  These are supports I do on a daily basis.  MedHelp is a medical resource & forum website that approached me to ask if I would be the Community Leader of three of their forums.  Down syndrome, Genetics and Children - Special Needs.  I provide resources, information and support to anyone who needs it through the forums or via private message.
I am sure that I have missed a few things here and there, but these 10 things are the most important projects I am currently working on.  Now that I have typed them out, I see why I am exhausted!  Everyone asks me, how do you do all of this?  The short answer is, I don't know!  I just work, work, work.  Not to mention, Hunter always comes first.  It is definitely why I am up most nights until at least 3 am.  I find it very hard to work on my projects (even in small amounts) during the day.  Obviously Hunter's activities, such as learning, playing and early intervention therapies are my primary focus, so once he goes to sleep (nap or bedtime), I work on my list of projects.  But, I always remind myself - it is for Hunter that I do these things.  Not one of these projects are for anything other then Hunter or Down syndrome.  It is my personal way of giving back and advocating for Down syndrome.  If you can believe it, I also gave some thought to creating a Down syndrome Foundation or Charity - but I am told that it is a huge undertaking.  My mother tells me that it is not easy (as she volunteers all of her time to Kiwanis and has been a past president and is currently the treasurer or secretary... I am not sure - it changes yearly) but I believe I can do it.  I usually am able to do whatever I put my mind to, so like all the other things I have done so far, why can't I do a foundation or charity organization? 

Anyway, I think tomorrow or my next post I will spend more time talking about Hunter bunny, as yesterday (Sunday) we spent the afternoon at the Canadian National Exhibition.  I did forget my camera (shame shame on me) if you can believe that, so you will have to suffer with my descriptive rendition of the day.  It is a milestone for sure, as it is for any Canadian Child (more specifically children in the Ontario area) who visits the CNE for the first time.


  1. The playgroup at the YMCA is a great idea! I might ask our YMCA if they'll do that here too. I know the Program Director has a child with DS.


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