The Club

The above is advertising a special event for kids under 12 who have special needs or are siblings of a kid with special needs. Sounds great - the Wilderbeats are supposed to be really great. This event at "The Club" will be really great for kids with special needs and their siblings. A friend of mine was one of the founders of The Club. She has a background in working with adults with special needs and just a month or so before she and her family moved to Halifax her second child was born with Ds. So instead of finding a job she devoted a couple of years to volunteering to start "The Club", was one of the authors of a major grant that was successful last year and is now paid (on a part-time basis) for the ongoing work that she does.

I admire her immensely because she saw a void that needs to be filled in order to help ensure quality programming for her child and others many years down the road and she went ahead and went after it. Something I can only aspire to. If you live in Halifax and have young kids (under 12), come on out to see the Wilderbeats and have great time on November 12.

Mary Ellen





Pumpkin Patch

We made a trip to the Valley to Willowbank Farm today. We picked out some pumpkins and squash, visited a small petting zoo, picked some apples, had a hay ride and Donovan had a pony ride! Grama and Grampa Rainey came along too. Both boys seemed to enjoy it - the apple orchard was rough on Malcolm as he was determined to walk around and pick apples by himself, unaided, but there were so many apples on the ground he kept stepping on them and falling...only to get up with determination and grace and keep on going. He can teach us all a thing or two about resilience!

Mary Ellen

Down Syndrome Societies

There is some great stuff on the US NDSS website - in particular you might like the stories at this link. The Canadian CDSS website is also good. The UK counterpart is DSS. These organizations have been around for a long time and offer support to parents and individuals with Ds, and are a good source of basic info about Ds. Happy reading...

Oops I almost forgot to mention that Jan and his research lab are featured in a short video developed to promote the importance of one of the NS health research granting agencies (NSHRF). Happy viewing...

Mary Ellen

Family Centred Care

Last night I thought I had published a blog entry but it did not post properly so it seems to be lost forever. Luckily it was a fairly short one so no harm done. It was a quick update on what the boys are learning - Donovan has been counting by tens, threes and twos at home (for fun - he likes math!) and Malcolm is ready to learn his shapes I think - he can identify many different animals so I just need to make shapes fun (ideas?!) and no doubt he will catch on quite quickly.

So that's basically what I thought I had posted last night. I think I also made the comment that it is harder than I thought to write something on this blog every single night for a whole month. At any rate, on to tonight's topic...

I attended my monthly Family Leadership Council meeting at the hospital today. I'm a "family advisor" on the Council, which is comprised of representatives of patients and family who are receiving or have received care, as well as staff at all levels - upper administration, physician, nurse, other staff. The purpose of the group is to promote Patient and Family Centred Care (PFCC) at the hospital. Part of our time is spent on consults - providing advice on initiatives that various groups in the hospital may be considering. Part of our time is spent on devising ways to promote PFCC within the hospital, which is a huge culture shift. Most children's hospitals, and some adult hospitals, in the US and Canada have these types of bodies that are trying to promote patient/family advocacy and involvement in care, which ultimately leads to better outcomes, such as higher quality of care and a safer environment for patients.

I became involved with the group in 2009, about 8 months after Malcolm was born. Hearing the stories and experiences of some of the other family advisors, I hardly felt qualified to be a part of the group (several of them had had lengthy hospital stays and some had lost their children). Fast forward to today - I have no qualms about stating my views and hoping that they will be heard. I look forward to the coming year and promoting PFCC at the hospital so that other patients and families feel more valued and involved in their care. Surely it is a shame that this is not already embedded in hospital culture?

Mary Ellen

Local stuff

I found a blog recently that is based here in Nova Scotia that has info on it on community events geared towards those with special needs as well as some great legal info. It was nice to run across something so useful that is also local. There are many organizations here in Nova Scotia geared towards helping out people with special needs. An incomplete sampling:

Progress Centre
EINS
NS Association for Community Living
NSDSS

I'm sure we'll get to know many more as Malcolm goes through life stages. We had a great day today, filled with parks and bike riding and leftover turkey.

Mary Ellen

Happy Thanksgiving

We had a great day today on our freakishly warm Thanksgiving weekend. Malcolm is a going concern as usual and he had a great time playing with some toy dinosaurs in his highchair after supper. He knows the sign for dinosaurs because, since he has a dinosaur-obsessed brother, we actually use the word a lot in our house. He was saying "roarrrr" and making their heads butt - and then laughing so hard he had to stop. Then he took his facecloth and starting to wash each dinosaur's face. It was too cute.

We have many things to be thankful for and good health and happiness are certainly at the top of the list.

Mary Ellen

Learning

Wow I must say it is harder than I thought to write something on this blog every day for a whole month. There are some topics that I would like to explore but they require some time to think about and write and time seems to be in short supply these days.

So for tonight I will simply assure you that both boys continue to do really well. Donovan entertained us tonight by counting by tens all the way to 700. Then he got bored and told us that he would finish later. Donovan has also been counting by twos and threes so we are thinking they must be doing a lot of this type of pattern stuff in school - glad he likes it so well! I am intending to work more with Malcolm to learn his shapes. He can match pictures of different shapes quite well and I'm thinking he is starting to recognize shapes more generally. He is able to identify many different animals in different contexts so am sure if I can make shapes fun (ideas?!) it won't take him long...

Mary Ellen