Park Place

We had a play date at the park recently. With cousins Madison and baby Austin.

Driving over - we have a great big one by the lake (incidentally where our SWWR walk is going to start from this year), I started wondering what exactly Nickolas will be able to play with and access.
And so I started to worry.
Should I bring his walker? What if other kids knock him down? What about the wheelchair? What if he just doesn't want to do anything?
Is this how it is always going to be at the park?

There is a big pirate ship with slides and everything. And it starts with a ramp.
The wheelchair wasn't really an option - I did bring it, but pretty much it just sat in the corner and got stuck when we tried to take it off road.
Nickolas did go up the ramp and down the slide a couple of times - walking, holding my hands (he is on a bit of a walker-strike).
And he loves going down the slide with me!

OK so maybe I shouldn't have worried so much.

Nickolas did have fun - mostly with the kiddie train - he could move around the area - he is the cruising master right now!
Nickolas even played a bit with his cousin Madison - there is only 7 months between them, but Madison and Katheryn are much closer.

We even got some picture time with baby Austin (we probably have to stop saying baby - he's 10 months old - and already walking!)

 After the park, Katheryn really wanted to go down by the beach.

So we played on the rocks for a bit

Took some pictures with grandma!

Tried to take a nice mommy and kids picture.
Well all 3 of us are in the picture!

And grandma showed them how to get their shoes wet!

And throw sand in the water!

It was a great spring day.
The kids had a great time, Nickolas definitely showed me that I was worried about nothing.

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.

›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.

 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

Mobility Awareness month

I recently saw and ad that said that May was mobility awareness month.
I tried looking it up, but it seems to be a new movement out there. And I'm all for it!

Someone on FB posted this video, and I just wanted to share.

Sibling Conductive Education

This semester of conductive education we are the only ones in the group. Which means that we have lost some of the group aspects that I like.

But it also means that I was able to bring Katheryn with us on one of the days she wasn't in daycare.

So Nickolas created his own little group.

The theme this week was learning about a dentist. Look at that concentration! I wish he spent this much time brushing his own teeth!

It was obviously a tongue-out kind of day.
Lots of thinking (and working)

One of the newest things we have been doing is getting Nickolas to walk between 2 of the plinths holding a rope.

The rope (of course) is not as stable as a table or chair (or walker) and it gives Nickolas that support he feels he needs while also getting him to work on his balance.

Katheryn really just wanted to do a puppet show.
She had us sit as an audience (and of course Nick had to walk to our seats - with his 'sticks') and she did a little show.

Then to top it all off, Nick decided that he really did want to walk in his walker - all the way down the hall and around the corner - almost to the front door!

We've signed up for the summer session of conductive education.

We had originally planned on attending the parent/child session for kids under 3. But Abigail thinks that he is ready for the older group. So in July Nickolas will be attending by himself in the 3-8 years group.

They think that it will be a great fit for him with kids who are doing the same things that he is doing.

I am a little nervous about leaving him. But I know it will be good for him.

Hope it'll be good for mommy too!

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...