Up Up and Away

The last few days have felt like an incredible roller coaster, but the good kind for once: the dips have lead right into these amazing highs that have sent shivers up our spines with hopefulness and finally culminated in today.

It was Lily’s first day of Junior Kindergarten.  It wasn’t perfect, not by a long shot.  We had to wake her up and she was cranky; she vomited up her entire breakfast (luckily before she was dressed) and then, during our unexpected morning bath, she pooped in the tub; she screamed through having her hair bruised and refused to look at the camera while I tried, desperately, to get that iconic “first day of school” photo, with my perfectly printed sign and her adorable first day of school outfit.  Her teacher and EA seem wonderful and took the time to listen to the few things we were able to tell them this morning and are excited to get working on walking and eating.   The other kids in her class are adorable and are just a little more advanced than she is at this point, which is exactly what we were hoping for – that she would end up in a classroom where the other kids might help to motivate her.  However, right now Lily doesn’t really love other kids and while they told us that she did okay, reading between the lines we were able to tell that she was feeling out of her element for most of the day and had no issues voicing that.

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But do you know what? This is all okay.  This is nothing we weren’t expecting with Lily and frankly is nothing that all parents go through: somedays don’t work out the way that they do in your imagination, sometimes your kid vomits at the worst possible time, sometimes they’re not the amazing kid that you know them to be.  This is the life of being a parent that were relishing.  A little less worry about therapies and feeding schedules and heart conditions, and more focus on making the transition into school the best one for her.  So while this day certainly didn’t match the vision I always had of the first day of school, I’m still flying fairly high on the fact that this is where our life is and how nice it is to be experiencing something at the same time as all of the other kindergarten parents.  I never, ever thought that putting together a back-pack for school would include diapers and a foley catheter instead of crayons and lunch, but in the end it’s the backpack that matters, not the contents.

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One of the things we were happy to bring along today was Lily’s new walker! While she had been fit for it earlier in the year, there was some back-and-forth between us and my insurance company about whether they were going to cover the cost that comes out of our pocket (we’re lucky in Ontario that the Assistive Devices Program does cover 75% of the cost of the walker) and we couldn’t complete the order until that got worked out.  It finally did at the end of July and her pretty blue mustang walker arrived just in time for school.  When we first tried it out months ago, Lily needed a lot of support to take even the most tentative steps – a lot of crouching behind her and prompting her legs to go through the motions.  We’ve spent a lot of time with her therapists from Bloorview working on getting her legs ready and the difference it made was incredible.  While she was cautious when we first got her in place, it only took a couple of minutes for her to put the pieces together and she took some incredible confident steps….and then she did it again and again and again.  She may not be running a marathon anytime soon, but I can actually see a time in the not very distant future where she’ll be walking to school instead of being strolled there and there are actually zero words to describe how incredible that hope feels.  She’s standing on this huge verge, this incredible milestone, and there is no greater feeling than watching her work out how to make it happen.

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The truth is, I’m prouder of this little girl than I have ever been of my own self, and I really do think that she is going to do amazing things; it may not be some big elaborate gift that she brings to the world – she may not cure cancer or write the most incredible book of sonnets, but I don’t think a girl who works so hard and is so determined can get through life without touching people.  In fact, I think it may have already started.  Last week I had an incredibly interesting encounter through Twitter with an individual that I had never met, in person or online.  My brother-in-law had been at a TFC game and was taken aback when he heard two of the employees at BMO Field calling each other “retards”.  He tweeted both TFC and BMO Field to bring their attention to it and I re-tweeted and echoed my own sentiment that I hoped this was something they would address with their employees.  This random person sent me a tweet back with a horrible response and I was completely shocked.  I thought about ignoring him and blocking him so that I didn’t have to deal with his stupidity, but then I remembered this experience and knew that, in order to be the mother that I want to be, I had to address it and not just passively accept the behaviour.  I attached a photo of Lily, standing proudly in her new walker, and sent him a tweet thanking him for sending such a useless response.  To be perfectly honest, I expected the encounter to end there because honestly, who would respond to this?  Well it turns out, this person would.  Not only did he acknowledge that his original tweet was pathetic, apologize profusely and promise me that he would never use the r-word again, he then made a donation to the National Down Syndrome Association to show that he truly meant everything that he said.  It was beyond anything that I had ever expected and made me so happy that Lily was able to help create this small change in the world.  I can only hope that this change spurs another – that he really will never use this type of word again and maybe take a minute to share this experience with someone else and keep the change going forward.

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A little extra change going on around here has to do with Giggle & Hugs itself.  I had been toying with the idea of moving this site to a self-hosted domain and combining it with one of my other passions – photography.  While I think that I’m still quite a way from being an actual “photographer”, I’ve been feeling more confident about the quality of the work I’ve been producing lately and have decided to take a chance on myself.  So, this blog will be moving and you can come and find us here: www.giggleandhugs.com.  The site is still in it’s initial stages and the focus right now is still on this blog, but hopefully over the new couple of weeks you will see it evolve into a small dream come true.  If you’ve been following us here by email, then you will be able to subscribe to the new site as well and we’d love to have you!

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Looking Forward

The snow just keeps piling up and all I want to do is bury my body under 6 layers of blankets and my head in an amazing book, but already the sounds of September and school are starting to call.

A little background here.  When Lily was first placed with us, we had found an amazing preschool, here in Toronto, that would have been the ideal place for her.  It’s a half-day integrated program that focuses on the needs of children with developmental disabilities.  They provide a 1:1 ratio, have therapists on site, and they also help look outside of the school to access programs and funding that will assist the child to reach their maximum potential.  When we were moving the services from Lily’s foster mother to our home, we asked about this program and we were assured that Lily was already on the wait list.  So, we waited.  And then other kids that we knew were getting called and offered spots and we were still waiting.  Finally, our amazing OT looked into the situation and we were all shocked to discover that the referral had never been put in and Lily was not on the wait list.  At that time, we had to do a little scrambling to line up Lily’s therapies until she started kindergarten but luckily we have some amazing amazing people on Team Lily and there were no major gaps in her therapy time.

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The bigger downfall to this though, was that Lily did loose out on some of the amazing benefits that this program would have offered her.  In-home therapies are limited to how often they can see each child, and the preschool program provides that support on a daily basis.  At first, this wasn’t a huge impact – Lily was still recovering from the delays that her cardiac arrest and brain injury had caused and so we weren’t in a hurry to push her to do more than she was ready to do.  However, as I mentioned before, we’ve been seeing her make these huge leaps in her abilities and it’s clear that this kind of program would, now, be appropriate for her.

But now she’s 3.  Which, of course, means that preschool is no longer really an option and she is supposed to start JK in September and my freak-out has begun.  As much as I would love to try and stay positive about our school board and what resources and support they will be able to offer Lily, I do worry that it just won’t be enough.  I know that she is technically the right age to start school, but I do worry that she is not even remotely ready to start school.  School is big and everyone knows that there are not enough resources and supports to go around.  Lily is non-verbal, has limited gross and fine motor skills and I’m very worried that she will slip through the cracks because she’s easy.  It’s easy to put Lily down on the floor and let her play happily by herself, and in a classroom – even a small classroom – where there are other, busier, children, I can see how her needs could get overlooked.  Even with the hope of a support staff, the pessimist in me worries about the ability of that staff to get Lily to move forward.  We’ve had some amazing therapists and even they can find working with Lily challenging; with her developmental delays, her vision and her gtube, it’s difficult at times to find something that will motivate her enough to want to do the work.  If you don’t have the right level of patience, it would be easy to find her frustrating and give up on her.  We’ve had therapists who have gotten verbally frustrated with her and we’ve shown those therapists the door. We always say that Lily will do everything in, “Lily time,” but unless you’re willing to truly accept that, she is challenging.  And I am afraid that our school board won’t be able, or won’t have the resources, to find someone who really understands how to work with her.

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So, all of my hopes are in a single basket now (It’s like I’ve never listened to anything I’ve ever been taught!).  Now that Lily is 3, we’ve had to transfer her services (Occupational Therapy, Physical Therapy, Feeding assistance) from CCAC (Community Care Access Centres).  We’ve been lucky enough to have access to Holland Bloorview Kids Rehab Hospital – we see a developmental paediatrician there who will help to coordinate which services Lily will need until she’s 18.  As we were discovering all of the amazing things about Holland Bloorview (and there really are too many to list), we also discovered the Bloorview School Authority, which provides education to the children who are in-patient at Holland Bloorview for rehab.  In addition, they also offer an Integrated Education and Therapy program for JK to Grade 1, which is the exact type of program that we think could help Lily thrive.  The school offers physical, occupational and speech therapies alongside their educational programming.  They would coordinate with Lily’s therapists at Holland Bloorview to create an individual plan to help her build on the gains we’re already seeing. It’s a full-day kindergarten and transportation is provided through the Toronto District School Board,  In summary, it’s perfect.

Sadly, just because it’s perfect for Lily, doesn’t mean that it’s not perfect for a tonne of other children as well, and as such, the space for new children each year is very limited.  We were happy that we made it through the intial screening process (although I’m sure that has to be credited to all of the pushing that Jess did – she made sure that every single therapist or doctor who could give us a recommendation, did give us a recommendation!), but now we’re stuck in waiting limbo until a final decision is made.  In the meantime, it’s off to kindergarten registration for us.  We are very lucky because the school less than a block away actually houses our districts diagnostic kindergarten program so we wouldn’t need to worry about transportation to another school.  Plus the school itself is quite small, so it has the exact feel of a neighbourhood school that I want for Lily.  The school I went to as a child really felt like the centre of a community, and I do want Lily to grow up being immersed in community; it was one of the main reasons we reasons we choose this neighbourhood when we moved.  I am trying, really really trying, to stay positive and give in to the belief that whatever happens is meant to be.  That, if Lily isn’t accepted into Bloorview, that there is a reason for it: one that we don’t see and may not ever see, but that’s there regardless.  Although, I’m really keeping my fingers crossed that our paths our meant to head towards Bloorview – fingers crossed okay?

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