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!

Thursday, September 6, 2012

Voice of the Family

I was approached at the beginning of the summer about an opportunity to talk to the Board of Trustees at Grandview Children's Centre about our experiences there. It is a program called the Voice of the Family.
Of course I jumped at the opportunity.
I had a 'interview' with a representative so that the board had something to read ahead of time. And then I made notes (like a blog post) from there. I couldn't just read off my notes. So what I brought with me were just point form that I wanted to talk about. But these are my original notes/post.

It went great. They were very thankful to hear about our experiences, the good, the bad and the ugly.

Thank you. My name is Amanda and I would like to talk to you about our experiences with Grandview Children's Centre. My husband and I live in Oshawa with our 2 kids, both receive services at Grandview. Katheryn is 4 1/2, and Nickolas is almost 3. We primarily come for services for Nickolas.
Who am I?

Nickolas is a very happy and easy going kid and he loves to make people laugh. He loves his family and especially his sister. Nick also is very, very stubborn. Which he likes to show during physiotherapy or when we try to get him to do something he doesn’t want to do.

I found out that Nickolas was going to be born with spina bifida when I was 22 weeks pregnant. (In their read-ahead-of-time stuff it explained what spina bifida and hydrocephalus is. Nickolas also developed hydrocephalus when he was 2 weeks old and has a vp shunt (which was not unexpected). We were scared by the doctors about what to expect with a child with spina bifida. I researched a lot online, and found online support and hope from other parents that had children with spina bifida. I found that there is a whole blogging community. While I was pregnant I started my own blog to share our story and provide hope to others. I also have an educational blog to help explain what spina bifida is, in simple and easy to understand language. And I talk to students at Centennial College to educate them about what spina bifida and hydrocephalus looks like.
There was also links and the actual address for the 2 blogs.
Nickolas was born November 2009 and immediately transferred to Sick Kids, where he had surgery to close his back at 24 hours old. He stayed in the hospital for 2 weeks before being discharged home. While we were there he was referred to the Infant development program in Durham, as well as the spina bifida  clinic at Holland Bloorview, and the program at Grandview.

 In February 2010 we had our intake assessment. I found it stressful for that initial visit. We sat around in a circle in one of the treatment rooms and everyone asked me about what he was doing. But Nick was only 3 months old, and he wasn’t doing very much. After the visit we were told that he was going to be admitted to OT and PT, but that their wait list was about 9-12 months long. Speech said that right now he was age appropriate and there wasn’t any need to admit him. (This changed by the time he was a year)

In the meantime we also had our initial visit at Holland Bloorview and found out about a monthly mom/baby group where it offered support to parents, education and an hour with all of our therapists (nurse, PT, OT, ST, SW). In May/June I talked with the physio at Holland Bloorview who offered to take us weekly to Holland Bloorview until we get picked up at Grandview.

It was hard to make the journey weekly through the summer and fall. It took about 1 hour to get there, 1 hour of therapy and 1 hour to get home. But we did it to get Nickolas what he needed. It felt like it took a whole day. We weren’t able to take Katheryn with us, so she stayed in daycare on those days. It was hard on our family because we were still trying to adjust having an infant, getting him what he needs, but balancing it with what the rest of the family needs, especially making sure that Katheryn didn’t feel left out.

It felt like we were making very slow progress, even though I knew that Nick had the ability to do things he just wasn’t doing it. He rolled over for the first time at 10 months. He stood up for the first time at 15 months.

When we found out that we had finally got picked up at Grandview I was really happy to get 2 hours of our lives back. But I was still afraid of losing someone who was so versed in spina bifida.

For the first 2 years Nickolas showed his stubborn streak. He hated therapy. He cried and screamed and often wouldn’t last the whole session without needing a break (or 2 or 3). Some days he refused to do anything by ‘hugging the floor’.

We had an assessment in the fall of 2010 and started a block of PT/OT in winter 2010/2011 when our block unexpectedly ended. Right when Nick was starting to do things (sitting unassisted, standing by himself for the first time). We were told we had to wait 6 months for more therapy because of restructuring – after 5 sessions since being picked up. I was furious, and upset. I didn’t know what to do.
I felt abandoned and lost and didn’t know where to go or who could help.

We started to investigate private PT services (and maxed out our benefits very quickly) as well as alternative therapy such as conductive education. We also had the opportunity to talk to PT and OT monthly at our mom and baby group. Nickolas was just getting used to having his AFO’s and standing frame, but at home we didn’t have the structured time that PT provided.

We were picked up again in July 2011, with a new PT, and I wanted a concrete plan and something to continue with at home. I wanted a walker. Together Melissa and Sheka worked with me over the rest of 2011 to get a walker that worked for Nickolas, we trialed a variety of different types through the preschool lending program. And in April 2012 Nickolas brought home his own walker, and he is now functionally walking with his walker.

Only in the last year or so Nickolas has started to click with therapy and realize it helps him to be independent. This year that he started to show some interest and went a whole therapy session without crying. He is starting to enjoy himself, to actually laugh! During physio! This last session has been the best yet, Nickolas is having fun and playing while working. No tears. Katheryn has also been able to come and join us.

It is as if something has finally clicked. Realizing that he can do the things that we are asking him.

Last July I had a goal to get Nickolas a walker. This was after our initial block ended. I wanted to have something to work on at home, a plan. Worked well together to help me to reach my goal and by April we had our permanent walker, so that the real fun/work can be done.

Currently we are completing a block of PT only therapy. We have been working with Sheka from OT from the beginning of our experience at Grandview, but she left us this past spring. Nickolas is doing very well with his PT-only sessions and has begun to enjoy himself. We saw our new OT in August and have been cleared to be reassessed in 4-6 months.

Over time I have found it difficult when we have an issue with services, or to know what the proper protocol is. There isn’t one person for us to go to with problems. If we are between services I need to find the letter that was last mailed, to find the most appropriate person to call if we have questions. We do not have a social worker at Grandview, but there is one at Holland Bloorview in the spina bifida clinic. A lot of times I use our infant development worker as the go-to person.

Through the SB clinic at Holland-Bloorview we would see our team monthly at groups, as well at have a clinic visit every 4-6 months. Now that Nickolas is almost 3 years old our clinic visits are going to be annually. They also cancelled our monthly group, so this summer I have lost a vital support network of families and professionals. I don’t see how Grandview would be able to fill in this gap. It was through reaching out online that I found about this opportunity to share our story.

During our initial intake meeting in February 2010 we saw the developmental pediatrician, Dr Hunt. We were told to follow up in 1 year. In January 2011 I phoned for an appointment and was told that we would be put on a waiting list “because of summer vacations”. I was still put on the list, but we were never called. We see the developmental pediatrician at Holland Bloorview in December 2011, as well as Nickolas’ own pediatrician. I was concerned about doubling up on services and talked about it with our pediatrician and never followed up.

During the summer of 2010 we also used the Audiology program. I started to get concerned that Nickolas wasn’t turning to look at me when I was talking to him. We were seen and assessed fairly quickly. And after 3 tests he was finally able to show that his hearing was appropriate.

Speech has been a journey. In February 2011, at 15 months we were reassessed for after noticing that Nick’s speech was severely delayed in his language (I don’t remember how long the wait was), and we were admitted to the service. March 2011 we were involved in a speech group. This group was difficult for us, as Nickolas had mobility needs and seemed so much younger than the other children that had more advanced issues. In the fall of 2011 we started some weekly individual sessions with Sabrina (sometime between the spring and fall we had a turn over of speech therapists).

Nickolas had always shown comprehension, but just didn’t talk. At all.

During the winter of 2011/2012 was when Nickolas really started to talk. And we just finished a reassessment in August with Sabrina and we are cleared for 4-6 months.

 We have already had experience with the speech services with Katheryn. I referred her to the speech and language program at 18 months old. At the time there was a 9 month waiting list. We have seen 4 or 5 therapists between both kids over the years. It wasn’t until the beginning of this year that Sabrina (Nick’s S/L) asked why we didn’t have both kids with one person. It made a huge difference to have one single speech person to see. We know that Katheryn only has 1 more year of service before she ages out. At the moment she still has what is categorized as a severe speech delay and waiting for a reassessment this month.

We have had a number of different experiences with Grandview. Katheryn has received good care with the SL program and I’m nervous about when she ages out.
I have been satisfied from the actual care we get from PT and how they really listen and respect what I want and work with me.
I have felt isolated through our experiences with Grandview. I only recently discovered that they have an orthotics clinic which would help us from needing to go to Bloorview for our new orthotics in November. The PT/OT combined therapy helped for continuous care. But the services don’t seem to work together for a team approach to our care. There doesn’t seem to be any kind of overlying person or group that helps to put everything together.

If I had a wish list to add to what we currently are receiving at Grandview:

I have looked into recreational programs but there has not been many opportunities we can participate in. I have looked into skating last year, and looked at swimming lessons but find dates difficult.

I wish there was more opportunities for support for parents through Grandview. When we first started at Grandview I contacted someone about the Parent to parent feature offered, but I never heard anything back. Through online support and the Bloorview group I know of 4 families who live in the Durham area who have children with spina bifida.

Thank you for giving me the opportunity to talk to you about our families experiences.

They really enjoyed hearing my story. They told me about some changes they are making that would hopefully address some of our past issues. I'm happy that I was given an opportunity to have a voice.



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