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!

Saturday, May 12, 2012

The Letter

After I wrote last week about the end of our spina bifida group and posted it on my facebook (what I do for some of my better posts). I was contacted by someone from media relations at Grandview Children's Centre. She offered support, if possible, but also presented me with an oppurtunity to have a voice.
I have not been the kindest with my feelings about the care we have received from Grandview. Especially when I was furious when we lost our physiotherapy at the beginning of 2011.
But talking back and forth I have agreed to do a 20 minute presentation to the Board of Trustees at a Grandview  meeting in September. To talk about our experiences, triumphs and difficulties. It is called Voice of a Parent.
I can't wait!

But I started of my blog to post my letter.
This letter is what I am sending to the manager of the spina bifida and spinal cord injury department, as well as a couple of other people at Bloorview. (What is it with all of these -view names?!). I am also planning to email it to our team at our spina bifida group.
I hope the letter is compelling.


May 12, 2012
To whom it may concern,

I am writing to tell you about a wonderful program at the Holland Bloorview Children’s Rehabilitation Spina Bifida program. To relate to you our experience with the Spina Bifida Parent-Child group that runs the first Thursday of every month. I want to tell you how this unique and valuable program has changed our lives (which we were notified of last week). I want to implore you to reconsider the permanent cancellation of this program. I would like to work together to problem solve ways to keep this program running to benefit my own family, but also other families following us, who are affected by spina bifida.
My son, Nickolas was born November 2009 with spina bifida and hydrocephalus. We first started attending Holland Bloorview when Nickolas was 3 months old. For more than 2 years we have been making the trek to Holland Bloorview every month for spina bifida group (taking the summer off). We only missed one group when Nickolas was hospitalized.

Spina bifida group is a group for children who have spina bifida and their caregivers to attend a 2 hour session each month. The session begins with a 1 hour opportunity for team members to assess and discuss current progress, the second hour allows caregivers/parents to have an education session with one of our team members, and also have the opportunity to talk as adults amongst ourselves. It is amazing how much 2 hours a month has had on our journey with spina bifida.

My first concern when we were told about the cancellation of our spina bifida group is the loss of social support that I get from meeting with other parents who have been there, and are still here. It is the parents who know the terminology, they have received the same words, been offered the same choices, have waited the same wait, and hope the same hope. There is nothing to compare sitting down every month with families who just understand. I belong to a number of online communities and forums but it doesn’t compare to actually sitting in the same room with someone.

 Last week when we were told by management that our group was going to be cancelled we discussed ways to continue this aspect of group through a support group. Parent mentorship was mentioned, but it is the group aspect not one on one that was important to me. As a parent I find that a support group is such an important part of keeping myself connected. But as a parent of a child who has special needs it is hard for me to do things solely for myself. I don’t know if I can make the same commitment to go to a support group that I can to go to spina bifida group. Because spina bifida group is much more than just parent support.

Nickolas would not be where he is today without our spina bifida group.

This is the place where we have monthly face-to-face contact with our professional team. It is in a safe, leisurely environment that Nickolas trusts. It allows myself, as a parent, to ask questions and voice concerns in an atmosphere that does not have a time limit.
It is an environment that provides an opportunity for rapport and a relationship. This is truly where my parent-professional relationship flourishes and where Nickolas’ client-professional relationship has started. This is a relationship that has slowly developed over time as Nickolas has started to trust his team. This is something just isn’t possible in an appointment time in a clinic room every 6-9 months. I am terrified to lose this relationship and the trust that Nickolas has built with his spina bifida team.

This group provides the opportunity for Nickolas to be seen and where I could go with questions on concerns between treatment. The team is who I went to while we were on a one year PT/OT waiting list at our local centre, Grandview Children’s Centre; and again when we were on a 6 month wait list last year. They are the ones who addressed my worries that Nickolas was losing valuable therapy time and opportunity.
I did not realize that Nickolas had outgrown his first pair of AFO’s until Kim, our physiotherapist, at spina bifida group noticed. I have been worried about different bruises and red marks on Nick’s feet and have been able to get Julia, our nurse, to look at it after we have seen orthotics.

The idea that Nickolas could benefit from a wheelchair was first brought up in spina bifida group. Both Kim and Beth, our occupational therapist, noticed how Nickolas was outgrowing his stroller. And I was prepared for my child to be in a wheelchair after an education session earlier in the year. The idea had never even crossed my mind. And the wheelchair has given Nickolas his independence in a way I never would have imagined. We would not have this without our spina bifida group . There just isn’t the time allowance, relationship or subsequent realization, in a clinic that is 6-12 months apart.

Spina bifida group has also been an outlet for Nickolas (and me) to try different assistance devices that I didn’t realize was needed. From the corner chair to castor cart and different walker options – posterior, anterior, cart etc.
Nickolas was struggling with his speech last year, and I knew that the spina bifida group was a place to strategize with Sukaina, our speech-language therapist. I was encouraged and hopeful that we would eventually get there. And when Nickolas started talking – we could celebrate together.

When Nickolas was starting solids I had the opportunity to discuss this with Julia, our nurse. When constipation subsequently started I felt comfortable to email Julia, right before a long weekend, with my concerns. This relationship started in our spina bifida group. When a similar situation occurred this past winter we had face to face, personal contact to problem solve together. This spring we are working on bowel management and Julia’s input and problem solving has been invaluable. When issues come up, I know that I’ll have the opportunity to ask questions and deal with concerns, in person, at least once a month
 I strongly believe that Nickolas is where he is, and doing so well because of the time, relationship and assessment that we have gained with our spina bifida group.

The education component is helpful, but it becomes repetitive after a while. But as a new mom it provided a lot of helpful knowledge. It has given us an opportunity to be presented with knowledge and information in a group setting that is specific for the needs of my own child. It has also provided a chance for my spouse to come and learn and ask questions. This is not possible during clinic. Online or paper education modules are already available if you know where to look. But it does not compare to personal education about someone who knows your child and can teach what you want to know.
I think that losing this educational aspect of group would be disadvantageous to families who are following us in our spina bifida journey. The knowledge I’ve gained has helped me to feel more confident with different aspects of spina bifida. It has also given me an understanding of what questions or concerns to address during our clinic visits.

I implore you to reconsider the cancellation of this spina bifida group. I believe that it is necessary for the continuing care and future abilities of my son. It has provided us with a family-centered partnership. I am terrified about the detrimental effect on our lives and abilities with spina bifida after the permanent disbandment of this spina bifida group.
I was looking forward to continuing group for one more year before the beginning the next step of our child as Nickolas enters the school system. I was anxious for the knowledge, experience and support that this monthly group provides when it is time to make this transition.

I have a regular blog in which I discuss our journey with spina bifida. I have discussed the impact that spina bifida group has in our lives on my blog, as well as writing about my initial worries and fears and experiences after learning that the spina bifida group is being dissolved. I encourage you to visit my blog to read about our experiences and link into specific experiences in which spina bifida group has positively impacted our lives. http://www.riddingfamily.blogspot.ca/2012/05/end.html
I ask for time and opportunity to problem solve to maintain this service which is so essential for our care. If parental input is needed before such a drastic change in our care I’d like to offer to work together to come up with a positive plan that will not have such an impact on my child.

I have some ideas that I would be willing to discuss further including meeting every other month, decreasing times between clinics (i.e. every 3 months instead of every 6-12 months) this would allow the support component and the relationship to continue to flourish. Fundraising for a financial need, contacting the SBHAO to assist in problem solving, setting up a supplementary support group through the mentorship program. I know there are other ideas out there and would propose a focus group with other parents and management to attempt to explore other opportunities.
Thank you for your consideration,

Amanda Ridding
Mother to Nickolas Ridding

1 comment:

  1. That sounds like a great program! I'd be thrilled if we had something like that here and heartbroken if it ended. We have a parent group that meets weekly, but it's any and all clients of the children's centre who go. Still awesome to talk to other moms of kids with extras, but to actually meet with a group of people who 'get' SB would be incredible.