A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Sunday, May 6, 2012

The end

The first Thursday of every month we head out to Holland Bloorview for our spina bifida group. This is a sacred time for us, NOTHING gets scheduled during this time and we make the 1 hour trek there and 1 1/2 hour trek back (it's rush hour) every month for our 2 hour group.


We have only missed 2, one was when Nick had his shunt revised and the other time group was cancelled by Bloorview because of staffing. We started going when Nickolas was 3 months old and I found out about the group.

I've talked about this group before. It is a great group; it provides support, a professional therapeutic relationship, education as well as social interaction with other parents.

We get an hour to see all of our team; PT/OT/ST/SW/RN (physiotherapy~Kim/Kelly, occupational therapy~Beth/Lorie, speech therapist~Sukaina/Susanne, social work~Gert and nurse~Julia/Elaine). We get some face to face time, we have developed a relationship and an opportunity to ask questions or make plans. It is also an opportunity for Nickolas to foster this relationship and show off what he is doing.
During this time we are all together and we can see what other kids are doing. This was so important when we were one of the youngest (now we are one of the oldest) in the group. It's an opportunity to see a couple of years into our future.

The second hour is when all the parents leave, and the rest of the team stays with the kids. It is an opportunity for us to learn a bit about each other, but also to learn about spina bifida. I know as a parent we use this time as an opportunity to support each other, and sometimes we hijack the education aspect of it. But it is an adult environment and we can talk about what we've been doing, what we know and a bit about who we are. Where we can actually talk with each other.

The last aspect of our group is the education. During this hour we also have one of our professionals facilitate the hour and help us learn more about things we should know about. ie. poop and constipation, bladder issues, functional and spinal levels, assistant devises, seating and skin issues, speech and communication, psychology services, beginning school, social and support issues, and explore our experiences. Just to name a few of the topics we have talked about during our education sessions over the years.

I love going to these groups. But that is all ending now.

This is Nick's whaaaat face

This past week the manager of the SB clinic came and talked with us, for about 15 minutes at the end of our session. She told us that over the last year they are rethinking and trying to improve clinic days. Our last clinic was in January and our next clinic is in the fall (so right now there is 9 months between clinics). This past clinic in January we I think experienced this new clinic? In the morning we saw physiotherapy and occupational therapy and nursing and in the afternoon it was time for the doctors. As she's talking I'm wondering what she is here to tell us? Something good? Something bad? It can't be good when a manager comes to talk with us.
Then she says that it is something that should be said face to face, and not in a letter (that sounds bad). We were told that because of trying to revamp the clinic and other issues (staffing, financial) they are cancelling baby group; next month is the last group. She said that if we had any suggestions we could talk about them.
This month there was only 3 families present, and one was a new mom. Other months there are 6 or more families, most of us 'regulars'.
The first thing that struck me was that I was losing the social support of other parents. This was were I got to meet Stefanie face to face, and Antonella, it's where we met Romu, Dawn and Derek, Rabba, also Meredith and Chris, and other parents!  This is something that is important and can't be replaced with online chats or forums. I brought this up to the manager, and so did another father. The manager had some suggestions about who we could contact to continue in the role of a social parent support group. That part made me feel a bit better - not much, but a bit.

But the more I thought about it, the more upset I became. And stressed. And terrified.
I have been trying to write this blog post for the last 3 days. And a letter that will be sent to the manager and anyone else I can think of to make them LISTEN.

And now I'm getting angry.
Are we as parents that low in the eyes of management that we get a whole 15 minutes to be told something that so drastically changes our care at Bloorview. Was there really no other way than to cancel this group. These hospitals seem to like focus groups and parental input (so they say) there wasn't any thought for a focus group or some kind of parental input into changes.
There wasn't any thought to make these groups every other month? Or try to adjust it a bit to make it more cost effective? Nope, it is on the chopping block. Has management even thought about attending one of these groups to see what is going on in it? Or talk to parents about what they get out of 2 hours a month?
I think I'm kidding myself to think that a simple letter will help to save this program. I'm wondering if it is possible to save it? What is needed to save it? Who would be able to save it? In one form or another.

I'm upset about what we are losing with the end of our spina bifida group.
It's an amazing feeling to walk into a room and feel that these people know you and you know them. Even though you have never met before. It is a group of people, moms, dads, grandparents, caregivers who know the terminology and don't need explanation for simple things you and your child are going through. They fear the same fears, have heard the same words, have been offered the same choices, and waited the same wait. They have the same story and a different story. We are a community.
Once every month I can meet with other people who understand, who don't say "I don't know how you do it" because they do it too.

This picture was taken in Fall 2010 
when we were still the youngest
(I did get permission to take the picture from the families)
I am terrified. Terrified of what we will lose. It wasn't until I'm faced with losing baby group can I realize how much this group has brought us. I really and truly don't think that we are where we are today without the support we get from baby group.

We had our first group in March 2010 and I met other children and their parents. I had such a feeling that I had met these women before (of course I hadn't). And even in those first couple of months of baby group Nickolas started to trust our team and show off during group. Nickolas needs alot of time to trust other people and actually do things that he does at home.
At subsequent groups we were able to connect with physiotherapy even though we hadn't been picked up at Grandview yet (and wouldn't be for 1 year). I know that it is because of baby group we were able to get Nickolas the physiotherapy he needed and our local children rehab centre was not able to provide.
It was through baby group that Nickolas has been able to try out and get some of his assistant devices. Nick got his corner chair after a baby group, he also got to borrow a castor car, and then there is the wheelchair.
It was last May that I first had the realization that Nickolas would need a wheelchair as a child through one of the education sessions. It laid the groundwork for this past fall when it was at baby group that it was suggested that it is time to look at a wheelchair. It was also at baby group that I first saw another little boy go through the same thing we did, so even though that family wasn't at group any more - they still helped me that day.

Nickolas wouldn't be where he is without that wheelchair! He came into himself, learned independence in his wheelchair. Somehow I don't think that the need for a wheelchair would be realized or verbalized with a clinic visit every 9 months. And Grandview has been no help in this area. It was something that we didn't even know we needed until it was suggested - at baby group.

In the quest to find the right walker baby group has given us the opportunity to try different things. Just this past week we tried a heavier childrens shopping cart to see how Nick took to it (he didn't).
And that is just the physical stuff. My relationship with Julia, the nurse, has helped me with our (what seems like a constant) battle with constipation, my concerns about ditropan, and even when to increase catheter sizes or UTI concerns. Knowing that I will see someone once a month and be able to be face to face and ask questions and voice concerns has helped me to be confident in where we are in Nick's care.

I am terrified that we are losing this resource and there isn't anything to replace it. Not Grandview, not our pediatrician and certainly not clinic at Bloorview every 9 months!
This is so much more than a support group, it is more than parent education. This is a group that has made such a tremendous difference in our lives.


I can't believe it is going to end. In the anger and frustration, the stress and the worry is also some denial. As if there is actually something I can do so that this group doesn't end.
I have some ideas, I have a letter forming in my mind - and also coming from this blog. I won't let this end without a fight...

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