Wednesday, 4 July 2012

Nick's Home Had a Birthday!


When Nicholas was born in August of 1988, we thought he was perfectly healthy and normal - except perhaps for the fact that he was premature and weighed under four pounds.  It was five months later, after several trips to the emergency room for dehydration due to Nick's inability to suck and swallow that we received the news that all of our baby's symptoms were due to a neurological injury of some sort.  Soon, I began to gather information about cerebral palsy and the various associations in our city that could help Nick and our family.



One of those organizations was the Ottawa Rotary Home.  The Rotary Home offered 21 nights of respite for children with disabilities.  Many of the children served by the home had very complex conditions and some had difficult behaviours.  All were loved and cared for by highly trained staff in a homey, cheerful environment.  When I talk about the early days of using Rotary for respite, I find it hard not to cry.  In those days, Nicholas cried and cried.  He screamed and cried - once for 37 hours in a row.  Jim and I were so sleep deprived that one day, I locked the keys in the car three times in one day - with the car running!  We were exhausted, desperately loving our baby, but afraid that we could not keep up with his complex needs. 

Fast forward to last Saturday, June 30.  Nicholas now lives in the new Rotary Home adult house and for us, the Home still embodies the message on their logo - "Keeping families strong - helping them together".  Our family is strong because we love one another.  We are together because we had blessed sleep for 21 nights a year in the early days and more recently, a place for Nick to call his own home when we became too old to look after our beloved son and no other facility in the city would accept him.  Last Saturday, Rotary Home celebrated its 30th anniversary and of course, we helped with the celebrations!

Here is Nicholas with me and Member of Parliament for Ottawa South, David McGuinty.  
We are grateful for the Ottawa Rotary Home, then and now.  Happy Birthday to our community heroes - everyone at Rotary!

3 comments:

Anonymous said...

Donna,

Both you and your son are extremely fortunate to have the assistance of the Rotary Home adult house. However, I cannot help but think of the many others, with complex health needs (medically fragile), who are not receiving adequate care in conventional housing for those with disabilities. Thus, I find myself overcome with questions.

For example:

1) Does one to reside in Ottawa before applying to Rotary Home adult house or, can they simply be a resident of Ontario (What are the prerequisites for admission)?

2) It terms of Nicholas' care, what is, or is not, funded by the provincial government?

3) Which agencies or organizations provide financial aid?

4) What expenses should families save for or expect to bare?


I ask these questions knowing full well, "If parents knew that their children were better cared for, they would gladly drive up to Ottawa every weekend."

Matt kamaratakis

Donna Thomson said...

Hi Matt,
The Home is both for respite and permanent residence. The children's respite is funded by MCSS and parents pay a small amount per night as a contribution. Also, there's a charitable foundation attached that buys things that the govt does pay for - to make it fun and homey. The adult respite side is built but did not receive government funding, so it's currently running as a charity, although sometimes it's used for emergency housing when families have a crisis, then funding comes from the government for that individual. The permanent residents are older folks with disabilities, most from the Rideau Regional Centre which closed its door a few years ago. Nicholas got a permanent bed in the adult respite section of the home as a one off situation because all the other facilities in the city turned him down (Yay!). His costs are mostly covered by Min of Health but some elements are covered by MCSS. Also, his pension benefits pay his 'rent' So, cost sharing is a good thing. We pay Nick's luxuries such as phone, TV, Senators tickets, spending money, eating out, transportation, all that stuff. And yes, you have to be an Ottawa resident to use Rotary. Isn't there a respite facility in Toronto? Take care and thanks for your question!

Anonymous said...

Donna,

There are twenty-four care facilities for those with severe disabilities in Toronto, but none are equip to adequately address medical fragility.

For example, you have blogged about Nick's care during the night. Without that care, how many hospitalizations could Nick survive before not coming back to you? People are dying and no one is saying a thing. And yet, all the books I read (even yours), depict how people with disabilities are vital to our community and a gift to their parents. No parent should watch their child parish.

love
matt