We’ve officially made it to the end of the 3rd week of school. I had hoped to update before this, but there have been a few other things occupying my mind and time, but I’m hoping that with this update all of these things will start coming together.
I would like to be able to say that we got through the first three weeks of school without Lily getting sic, but as of today this lucky streak came to an end. Her teacher mentioned to us yesterday that another child in the class had come down with a cold and we may want to keep an eye on Lily. Jess and I followed this up with a long conversation about how we were going to deal with situations like this: do we keep Lily home when we know that other kids are sick which is the most sure-fire way to ensure that she doesn’t come down with anything? We’ve spent the last three years doing exactly that and we haven’t had any major hospitalizations, so there is something to be said for this method. However, we also realize that this not an emotionally healthy way to keep living the rest of our lives. We’re not going to be able to control other kids and other people for the rest of Lily’s life and at some point, living over-cautiously will take it’s toll on all of us. So we were ready to send her to school today, until we woke up and Lily had other plans: a runny nose, sneezing and a small coughing fit that caused her to vomit up her entire breakfast. With all that we have been hearing about the enterovirus and it circling around Toronto, not only do we not want Lily to get sick, we also can’t take that chance for the other kids and their families; you just never know who you may be affecting by your decisions around sending your kids to school as they’re starting to get sick. What may be nothing for your child: “it’s just the sniffles”, can mean something far more serious for another child. We obviously can’t ask the staff and other families to be aware of this for Lily and not follow our own rules, so while she’s been fine since then, we’re home today and keeping our fingers crossed that this is nothing in the end.
Other that this hiccup, school has been amazing. We are so incredibly happy with Lily’s teacher and the support staff that they have in the classroom. They’ve been so incredibly patient as Lily adjusted to this new experience and they’re always so encouraging and kind to Jess and I. They’ve been working on eating and using her walker and they’re happy with how she’s progressing so far. This week alone, we heard that she’s finally starting to get interested in the other kids AND she actually gave her teacher a smile (which absolutely made me cry, as all I’ve wanted is for them to see the same Lily we see at home). We’ve been to curriculum night and I’m about to join the PTA, which seems like a crazily grown-up thing to do. We were saying last week that we really are so happy in the end that this is where Lily ended up. She’s in her community and it’s beginning to show. Jess told that when she walks Lily to school in the morning and they go through the playground or field that she can hear some of the older kids saying things like, “oh, there’s Lily,” or “Lily looks so cute today.” This alone fills my heart with so much joy. We were talking to the principal at curriculum night and she reminded us that it’s rare for them to have kids in their Diagnostic Kindergarten class who are also at their home school, and we love that as Lily grows up our neighbours are also going to be her schoolmates (and hopefully future babysitters!).
The one challenge we’ve had is balancing school with Lily’s other appointments. We had a great time slot for Physiotherapy throughout the summer so that I could attend most appointments, but Thursday at 9am isn’t our version of ideal anymore. While we love Holland Bloorview, I do sometimes find that it’s hard to coordinate a consistent day and time that works for both us and the therapists. We ended up with Lily having to miss a full day last week just so that we could coordinate her visit with the feeding clinic, which she almost didn’t need to be there for because it ended up being more of a strategy/therapy session for me instead. Over the summer I had been getting frustrated with not being able to help Lily get further along with her oral feeding and I felt as though we were actually moving backwards. While I used to be able to get to put the spoon in her mouth and have her swallow, we hit a point where I could barely get the spoon NEAR her mouth without her turning her head to avoid it completely. She would stick her tongue out and hold it there so tightly that, even if she wouldn’t turn her head, there was no way I was getting her mouth open enough to slip the spoon in. Having the OT and Speech therapist watch her and then point out all of the things that she was doing that I had overlooked was exactly what I needed. It took a couple of neutral parties to show me how far she has actually come: she’s licking and loves to taste any type of food – the stronger the taste, the better. She’s using her hands to explore in and around her mouth, which is an incredibly positive sign that she’s moving away from the aversion that is really at the root of her eating issues. And they were able to just put everything into perspective for me with two simple questions: if the only experiences you had ever had around your mouth were people sticking things down your throat (feeding tubes, ventilator tubes) how trusting would you of anything that comes near your face? And, if the only thing that has been in or come out of your mouth with any consistency has been vomit, how could you associate anything being in your mouth as something positive. The issue here is not about Lily’s ability to eat, it’s about her total distrust of anything in and around her mouth. It’s sometimes hard to see, but it’s so similar to her aversion of using her hands or letting people touch her hands and arms. If you’ve only had bad things happen around a part of your body, you would be crazy to let someone else have control of that. It took almost 3 years for her to finally use her hands functionally and she still needs time to trust someone before she lets them work with her hands. It was just a great reminder to me that no one has any doubt that Lily will eat typically, but we’ve just have to work through this giant fear to get there. It took the pressure off of me and Jess to push her towards this skill and gave us permission to just take this this same way we try and take everything else. We just have to remember that our motto is right, “Lily will do everything, just in Lily’s own time.”
