Monday, April 25, 2011

Checking off the 'to do' list

My husband always tells me to focus on one thing at a time.

But sometimes the list of things 'to do' for your child can seem alarmingly long. Your mind is in a state of constant vigilance, trying to keep all of the various balls you juggle in the air.

Sometimes we forget to acknowledge that in fact we have made some progress. So I thought I'd do that today.

Here are some things to be grateful for at our house:

The IPRC went better than expected. Ben was given the designation mild intellectual disability and everyone at the table agreed he should be doing more academic work at his level. I have an appointment to discuss his IEP at the school this Thursday.

I found a reading tutor for Ben, and she came for her first visit last week. Check out this site she showed us:

We held Ben's first life plan meeting and were encouraged by the support of those who attended.

As a result of the life plan meeting, Ben is going to his Uncle Ian's house for dinner this Friday with Sallyanne.

Another friend offered to take Ben to the movies with her son. Ben got invited to a sleepover.

I followed up on the suggestion of some respite funding (which I was sure we wouldn't be able to access). It sounds like we might be able to receive a small amount towards our workers when Ben goes to overnight camp this summer.

As we've now clearly stated that Ben is interested in being a zookeeper, a BLOOM reader suggested she may have a strong connection we could work at the zoo for the opportunity of volunteer work. In addition, Ben received a computer game where the object is to create zoo exhibits and care for animals.

Matt came for a visit on the weekend, bringing Ben two Transformer movies. Matt, as you know, is a frequent commenter on the BLOOM blog and is also a friend of Ben's. Matt, coincidentally, happens to live right by the zoo!

I've played telephone tag with a contact at the Catholic School Board to find out about possible schools there, but haven't had time to follow through.

Ben is still going to the club with D'Arcy.

I have to follow up with the Toronto board about going out to see some potential schools. As you know, it is hard to fit all of these things in!

Next week I am joining a team from Holland Bloorview for intensive training in patient- and family-centred care in St. Louis. Family-centred care is about recognizing families as equal partners with professionals. Almost 450 participants are attending from across North America and further afield.

It's easy to get focused on obstacles and areas where progress hasn't been made. What items have you checked off the 'to-do' list related to your child. Tell us!


The conference sounds like it will be great. I have worked for years with a similar organization that does collaborative work for improvement -- it's called the National Institute for Children with Special Healthcare Needs and is based in Boston. I'll be interested to hear what you take away from the workshops.

So glad to read these updates Louise and glad things are going well with Ben.
I am excited to hear about the conference.

I spoke to the school board special ed coordinator and it seems as though the transition to school may go well. I was told integration is the goal. I could not be happier.

Wow! Lots of changes and progress for you and for Ben. Congrats! I love your idea of documenting accomplishments and steps forward. Something we all forget to do as we plug through our special needs parenting to-do lists.


We all support and wish you well at the upcoming patient-and family-centred care conference in St. Louis, as I know that are always looking for new ways to foster social media and family advocacy within the healthcare system. Please, bring back some reading material, allowing us to put our heads together, to better inform parents, children, young adults and doctors.

For, I may be, in the words of Jeff Adams, "A traditional non-conformist", but there is a method to my madness."

Matt Kamaratakis