Pool Party Reunion

We had a Spina Bifida Family Reunion!

Our group of families who originally met when our kids were itzy-bitzy and we were all just learning about spina bifida. We started going when Nick was 4 months old and went until they cancelled it 2 years later.

After the program was cancelled I created a FB group to try to keep us in contact at least (and the group has grown to include anyone in Ontario called Our Lives, with Spina Bifida in Ontario)

Of course it isn't all about our kids who were born with spina bifida, it's the siblings too.

And the adults.
Katheryn wanted to get a picture of everyone taking a picture of them!

Afterwards everyone was in the pool!

I can't rave about these puddle jumper floaties enough. Nick just loved swimming around everywhere.

Katheryn wore her floaties as well (she doesn't really need them) her swimming is great, she just needs to increase her confidence with the swimming.
She did show off her cannon balls!

They had a fantastic time in the pool, and playing on the 'boat'

Here are all the kids together, and the siblings were around in the pool

Nick's MACE was fine in the water. I didn't cover it, and he showed it off to everyone. 

They weren't that happy when it was out of the pool

We all had a great time catching up and seeing how everyone kids are growing up.
The adults had time to catch up and talk about everyone's new adventure (mainly starting school) and everyone wanted to hear about Nick's MACE and how it was going.

It was great gettting together with everyone, we definitely need to do it again! It's great for the kids to be around other kids just like them... our kids with spina bifida and the siblings. When I talked to the kids about the party I stressed that it was for both of them!

Thanks to Chris and Meredith for hosting! And making all of that fantastic food!

The end... change is good... righ?!

2 years of going to every SB mom and baby group. Seeing Nickolas going from being the youngest, the smallest to being one of the oldest. Following how other kids Nick's age (Natalie is a month older)

And it ended this week

We had a little party and spent some time just talking.
Talking about how we wanted to continue and what we could do.

And we eventually got our acts together and took some pictures.

It was a sad day for everyone
But Nick was just really happy that there was some watermelon!

This is some of the parents, kids, staff and volunteers.
Our last baby group.

I am going with the idea that this is a good change.

This will provide us parents with the opportunity to direct our group, to maybe reach people who were unable to attend group but were still interested in the support.

We have a couple of ideas and tricks up our sleeve, and hope we can start in September with some kind of plan about how we will be able to expand our changed group and have what we need.

A couple of us have our feelers our to the SBHAO to become a more official parent group, using the facilities and faculties of Holland Bloorview as a resource.

I also went home and great a facebook group to get us started as a place to 'meet' and plan hopefully together.

I was trying to come up with a name for the group.

What I came up with was Our Kids, with spina bifida - Toronto and area.

Because first and foremost they are our kids. And yes they have spina bifida, but they are kids first, and we are parents first.

I'm hoping that this will allow us all to connect with people that receive services at Holland Bloorview that we just didn't know was out there.

I am not sure how the link will work. But if you are reading this and you think hey! We go to Holland Bloorview for services! Then contact me on facebook and we'd love for you to join our group. I say it is for parents, but really we won't deny anyone who is interested. 

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

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...

May there be Poop!

Anyone who is squeamish or not interested when they see the initials T.M.I. you might want to skip this post.

I have been looking and thinking about poop for the last couple of months.
The polite way of discussing poop is 'bowel management'.

I am so ready for some bowel management!
Nickolas has been dry between cathing for a while, so it's just poop right now.

I have dreams of getting him in big boy underwear.
I know it is just a dream right now. I know it. But I still have it.
So I've been looking at ways to get there.

I've talked alot with Julia our nurse at Bloorview, both on email and at baby group, about what we need to do, and she's had a number of suggestions. As well, our January education session involved poop talk, and we all got copies of this chart.

 I have started to record what we get and when, and how. I have a whole excel spreadsheet (that Jennifer - our daycare - has been wonderful in not thinking I'm crazy and filling out).
My plan is to try to figure out what works and what doesn't.

We have been fighting differing degrees of constipation for a while. And I'm really sick of it. I want something to clean him out so we don't have the constipation.
And of course being clean in between.

 I know this is not something that happens over night. And I know that we are super early in trying to get a handle on this. But I still want to try.

I've also been doing my research.
Through SB University and their bowel session. Also I watched a online web session with Dr Levitt at The Colorectal Center through Cincinnati Centre. I've looked all over and can't find the link.
I took notes.
They have a whole bowel management program to get kids out of diapers starting at about 3 years. (OK we aren't at 3 years yet, I know that).
Part of this program is a 1 week program using contrast and x-ray to actually visualize that what you are doing to clean kids out, actually is cleaning them out.

So we are just in the beginning of my clean-out project. I know this is going to be one of the most challenging parts of our spina bifida journey. I know we'll get lots of bumps in the road and I'm probably setting myself up for failure by starting so young, but I'm a bit impatient.

So far our experiences have been
Glycerin suppository - doesn't move anything.
Fleet (or saline) Enema - works, only if it stays in. And very messy
Julia doesn't recommend the enema because it is more difficult to stay in. She recommends going the suppository route for now.
- and after a couple of recent messy attempts that really got us nowhere, I'm finally listening to her.

Our newest line of defence, which seems to be working is another suppository. Child version (5 mg - or half of the 10mg).

Sorry again if this is all TMI, but I did warn you.

I have also been looking at getting out of the store diapers and into more cotton ones - more big boy underwear?
Not really ready yet, but these are where I've looked so far.

http://www.etsy.com/listing/72908455/cotton-toddler-boys-training-underwear

And these from Pampered Tush - Gretchen raves about them, and so they have experience with spina bifida.

http://thepamperedtush.com/gallery/cotton/trainers/

I'm amazed at the products that are out there today!

Take That spina bifida!

Thought I'd start off with a bang!

That is Nick with his new walker - the newest one (and the winner).
And that is Nick walking independently with it. I'm not helping his feet or moving the walker. He is doing it ALL BY HIMSELF! And we were all there!
And he was happy!

So Take That! Spina bifida!!

Of course it had to happen when Nick was wearing his new Take That! Shirt. We wore it to our spina bifida group and showed it off. It was the fundraising brainchild of Colleen (Nate's mom) along with the facebook group.

That word

They have used that word with my child. They are starting to think that it is time. It caught me completely off guard.

A wheelchair.

For my child.

My child in a wheelchair.

Yes I know why, I do. Independence.

But it’s still a shot in the gut, a slap in the face, a slewfoot. Can we give penalties and take 2 minutes? (Yes hockey season has officially started again – and my Maple Leafs are 2 – 0).

I see other kids in wheelchairs and the independence they gain. They don’t have to be with mommy all the time, they want something over there? They can go and get it. I know he will love it. I know it will be great for him.

I know all of these things, but for me, today, right now. It’s a wheelchair. For my child.

So let’s step back a sec.

Where did all of this come from?

On Thursday, we had our mom and baby sb group. We came home with a  castor cart (sorry, his jaguar). But before that Nick had been fussing, he is cranky and not feeling well. So I put him in his stroller hoping he’d fall asleep.

Now, Nick is a big boy. He is tall, he is big for his stroller.  He is also almost 2 years old. Do 2 year olds want to go wherever their parents want them to go? No way! They want to do things their own way, make their own mistakes and figure things out, on their own.

So put this all together, and the OT and PT at the baby group felt that it was time.
I am so lucky that I was a little pre-warned. Another mom heard what they were saying and warned me. Our group is 1 hour of parents, kids and therapists, then 1 hour of the parents leaving to talk about a specific topic. So at the end of the group when we discussed that when we meet next month we’ll look at getting him a wheelchair (it just makes me cringe writing that) I was a little bit more prepared. No tears, no sad face, I could put on my analytical, I understand and agree, face and not my emotional, mommy screaming not yet, face.

It was one day at group this year (When Nick was 18 months old) that it even occurred to me that he would need a wheelchair as a child. In my mind I was thinking 3 years old. That was my plan in my mind. That was my timeline.

I spent the entire drive home going over and over with myself why this is a good thing. Why this is actually a blessing. So I was prepared when I brought the topic up with Kyle. I was prepared when he asked the question that has been haunting me.

“Doesn’t it feel like we are giving up on his walking?”
No. Never.

I will Never give up on his walking. This is not about walking. We will still work just as hard on his walking, his walker, his mobility. We will concentrate on physiotherapy and conductive education and anything else we can get our hands on just as hard.
But, this is about his independence. Those times when he is in a stroller, just sitting there, being pushed around by mom or dad. When if he had his own wheelchair (smaller cringe) he didn’t have to rely on us. It would only be in replace of the stroller. It would not be in the house.

When we go to the mall, when we go to the park, when we go to the zoo. Can you just imagine how much fun he will have at the zoo?! Going where he wants to go, instead of being pushed around all day in a stroller or a wagon. I can’t wait!
Wait a second, did I just say that? I can’t wait to get him a wheelchair. I can’t wait for a wheelchair to give him independence. Did I just type/say wheelchair without the cringe? I want what is best for my child, and even if I have some hold-ups about a wheel chair – he won’t. He won’t see it as something negative (unless I tell him it is). He will see it for what it is – freedom.

Here are some kids that have really inspired me. And I don’t think I would be so calm about the wheelchair if they hadn’t gone first.

Kingsley
Carson (he is just a day or 2 old than Nick)
Alex
And I can look at some of the older kids
Like Caleb
And Madi

I am missing so many more. But for family and friends who want to see what a child in a wheelchair looks like, can look back. Because it is not sad faces and sickness. It is smiles and freedom all around!

Our very own jaguar

After our monthly mom and baby SB group we came home with a little surprise!

This is called a castor cart. It is nice and low to the ground, and allows Nick to move himself around at a speed an almost 2 year old should be going!
He hasn't gotten the speed of it yet - imagine that - my cautious little boy is taking his time.

Katheryn thought that Nick's new car was great too.
Whatcha doing back there? You'd better not be messing with my wheels!

Every new set of wheels needs an emblem.
What do you think?

Nick's jaguar!

Here is Nick and Katheryn trying out the new wheels!

Sisterly encouragement - Take That spina bifida!

18 months

I know it is a little early (Nick is 18 months next Lucky Friday the 13th - but it is something that has been on my mind alot lately).

I thought that 18 months would make me excited. I thought it would be a happy age, a good landmark. It has always been one of those ages for me, the ones you look back and gauge things against.

I was warned.

I was warned that 18 months is a hard time for us parents.

It marks a time when some of the motor deficits become very obvious. When I see Nick pulling himself along on the floor and all the other kids his age are running around. Not just taking tentative, shaky steps, but running, everywhere. I remember Katheryn at that age (just before I had Nick), and he is nowhere near where she was, in so many areas!

I need a new mantra, I need to remember that this is not a race, it is not a contest. Nick will do things in his own time, but he will do them.

And by comparing him to other kids at 18 months isn't going to do any of us any good.

But I just can't help it some days.

I was invited to get together with some moms from my babyville mom and baby group. The last time I saw most of them, was when Nick was 1 year old. And yes some kids were walking and standing, but not all of them. This get-together, I was working and wasn't able to go. I am very glad I wasn't able to go. I realized later that how different Nick would be from these kids. How delayed he would look. How sad it would have made me (and how sad it makes me now). And it makes me sad that I'm glad I didn't go. (Yes, I know, I can't really win with myself!)

I hate thinking of Nick in those terms. different, delayed, disabled. Those are not words that I want to use to describe my beautiful, happy boy. These are words that I can forget when I stay in my little Nickolas bubble. Where Nick is making great big strides, working hard (harder than he wants) and making progress. Meterstones.

Our current working goal is getting him stronger
lying to sitting. So basic, and we are still working on it!
AND we still haven't been picked back up from Grandview! (For PT).

Oh yeah, and today at our SB mom and baby group I realized that Nick will probably need a wheelchair as a child. (Even if just for distance, like the zoo or Canada's Wonderland). Which shouldn't make me upset, it is something to give him control and independence. But I'm still a little raw about it. Even though I shouldn't be surprised - and we aren't anywhere near to needing it now.

So we are hitting the 18 month mark a little grumpy. A little depressed. A little sad.
I don't want my baby to grow up. Can't he stay the same age for a little longer and then catch up? Let the Nick timeline and the calender timeline sync just a little?

 At the same time, I know that today I might be sad. Today I might be under my own little rain cloud. But tomorrow Nick will do something fantastic and the sun will shine again. And Nick doesn't think that there is anything wrong with some rain!

BTW - the pictures are from our trip to the Toronto Zoo on Easter weekend.

Physio, physio, physio - Back to Basics

I have a feeling I’m going to have a lot to say about this in the coming weeks.

We’ve been looking at our options after being ‘dumped’ by Grandview. Yes I know that is not what actually happened. But that is how it feels, so I’m going with it.

We met with Katie, our infant development worker (who we LOVE) and she brought us information on private physio. Today we went to mom and baby group at the SB clinic at Bloorview. We have assessment by the RN/PT/OT/SLT/SW (I think those are all the letters) for an hour, then parents leave for our own private education and group. We end up socializing and talking amongst ourselves for about half the time and squeezing in some education at the end. It’s almost as if we need another hour to socialize and get to know each other. (Actually we talked today about meeting at noon for lunch and socializing before group).

At group today I had the opportunity to talk to the physio at Bloorview. We talked a little about what he was doing (because he really refused to show off anything). We talked about what went on with Grandview, and how I feel we really need to get more physio.

I left kinda feeling like we have been totally on the wrong track for the last couple of months. And I’m not sure how we got off track. OK that’s not true. I do know where we got off track. We tried to skip some steps.

So I have some goals, some plans to follow up on. We are going to work A LOT at home. A LOT more than we have been doing. Thank you Gretchen for helping me realize that we will be doing the actual doing of physio (commenting on my post when we got 'dumped'). So a break doesn’t actually mean no physio, it just means more effort on our part. As long as we have some guidance of what to do and not to do.

So our plan. Standing frame, standing frame, standing frame (I guess I just feel like repeating myself a lot today). Work on lie to sit. Consistently. As well as hands and knees, and kneeling. All of these I know Nick can do. It’s just getting him to do it more often. Also more ball work (core, core, core).

These are basic. And they’ll lead to the next steps. Stronger legs, stronger core, more confidence. So that when he’s standing at the couch, he’ll be stronger and more ready to take those steps. Because then he will have some basics behind him.

I think before we were concentrating more on the standing (which is great), but not enough on making sure he had the skills to back it up.

It reminds me a little about learning how to play piano. I took piano lessons when I was younger. I enjoyed it, mostly. But what I really wanted to do was play my Les Miserable and Phantom of the Opera. So once I took a couple of years of lessons, played lots of very basic stuff and learned how to read music. I could read the music, and could play some of the music and stopped lessons. I can play sorta well with my right hand, and only 1 or 2 songs with my left hand. I can do a couple of the songs but that is it. I am not a very good piano player. Pretty much, because I skipped a bunch of steps. The basics.