Wednesday, October 27, 2010

Mission accomplished

Ellors Madak (right) has been found, and is being held, at a nearby Book City where Ben left him a couple of weeks ago. Ellors -- who teaches anyone who will pay him how to fly spaceships -- is one of Ben's beloved Star Wars characters. Ben has a habit of leaving characters in places where I can only imagine they undertake special missions. Ben has been going into and pulling up Ellors every night to remind me that he's missing. So imagine our surprise when I called Book City last night and they confirmed that Ellors was being held at the cash and we could pick him up today. Hopefully he's no worse for the wear!

We learned today that BLOOM won bronze in the 2010 Digital Magazine Awards in the health and beauty category (not sure why they are paired together!). Our brilliant designer Sara Purves had put in an entry which was a fabulous surprise to me.

Flame is a band from upstate New York made up of people with a variety of physical and developmental disabilities. Check them out.

And finally, next Friday I'll be in Ottawa at a national roundtable on the health of parents of children with disabilities. As part of this roundtable, I'm filling out a survey on Oct. 28 (tomorrow!). I'd love your input on the following two questions:

1. What are the most important caregiver-related issues that need to be the subject of future research?

2. What needs to happen to support families of children with disabilities more effectively?

Remember, this is in relation to the health of parents! Please send me your thoughts!


Regular, real respite.
Regular, real respite.
Regular, real respite from the beginning.

We need the funding to make the Special Services at Home, and Passport, wait lists a non entity. Families should not be on a never-ending wait list for respite funding, and if you want our children to be fully included productive members of our communities families need Passport funding to make it a reality.

Give us a break!

Thank you Elizabeth! I will communicate this loud and clear!

I encourage our other readers to share their responses as well!

1) Respite is important

2) We struggle with not knowing what we can do for our daughter (CP, GMFCS 5). What I mean is that we feel left on our own to discover potential alternative therapies and alternatives to traditional medicare based stuff. We live in Ottawa so we have access to a mid sized children's hospital and a mid sized organization geared to children with disabilities. Even though we have what I'm sure would seem to many as fantastic resources, it is clear that if the specific capabilities don't exist at CHEO or the Ottaw Children's Treatment Center we just don't hear about them. Whether it is a surgery or therapy technique or alternative therapy we just don't hear about it and are on our own to explore a pretty expansive world of helth care for our daughter.

It might be nice if there was a way for somebody to have a large list of all the options out there and how to contact the people providing the services. This doesn't imply I'm looking for somebody to recommend the services but if I just knew they existed I could research them. It is quite frustrating knowing that we don't know our options.

Not sure who could administer such a list as the medical industry often appears brutally protectionist. A lot of bright people with either closed minds or an unhealthy does of self preservation.

Not sure if I have articulated this as best as I could, sorry if that's the case.

PS> I Love bloom and read pretty much every posting this I know, is not realistic, but this is what I truly need in my life:

1) A Personal Secretary to maintain my busy schedule of appointments.

2) A chauffeur to drive us through the busy Boston streets to Childrens Hospital

3) A lawyer to fight with state agencies and insurance companies.

4) An advocate to fight with the schools and participate in all those IEP's

5) A chef and housekeeper since that always seems to be the least of my priorities but thing that bothers me the most.

6) And most importantly as Elizabeth states...respite, respite, respite.

7) And to really stretch the scope of all expense paid vacation complete with reliable babysitters.....

Oh well......I can wish.......