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.
›š
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.
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
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
