Category Archives: parenting

Notes from the parent advocacy workshop – my goals

I’ve been going to a workshop on parent advocacy skills. One of the sessions was about assertive communication: giving yourself permission to express your feelings and ask for what you want in a respectful, confident, and specific way. I’m familiar with the techniques (I statements, active listening), but it’s always good to practice and to see how other people might handle a situation. It also got me thinking about what I do want to learn when it comes to advocating for A-, and how to make the most of my strengths and work around my weaknesses.

I think there’s often a lot of leeway in how to solve a problem, especially if you try changing perspectives. Just like in tech, some ways are much easier and some ways are much harder. It’s easier to work with a system than against it. Asking different questions opens up other possibilities. That’s been my experience with tech. Human-centric fields are even more fungible. If you can get people to want to help you, they can bring their creativity and resourcefulness to the table. Conversely, if you get on someone’s bad side, they might drag their feet, or they might follow the letter of the law but not the spirit of it. And you can’t just keep testing until something works!

To make assertive communication easier, I like doing my homework. I research the possibilities and the trade-offs so that I can make better decisions and ask for specific things. I like knowing alternatives and having backup plans, because that takes the pressure off. I like reading policy manuals or getting the inside scoop from people because that gives me an idea of the structures that people work in, what tools are available to them, how they’re evaluated, what makes their day better, what makes them look good to their boss. I find systems fascinating, even when they don’t work perfectly well. We’re going a little outside the mainstream for a number of things, so it helps to know what’s out there and how to support any exceptions we want.

I’m working on getting better at dealing with different communication styles. Fortunately, this is rarely a problem. I minimize encounters with aggressive people, and I’m pretty comfortable disengaging from things I don’t like. I’ll dig into conflict resolution a bit more when I run into things I don’t want to work around, but in the meantime, there’s so much potential in yes-es that I don’t have to chase after any no-es.

Rather than conflict resolution, I mostly want to focus on understanding the systems here. What resources can I draw on? What’s easier and what’s harder? How can I work around any bumps? How can I give back and make things easier?

For A-, here’s what I anticipate needing:

  • tools to help me catch any developmental delays or learning difficulties, since early intervention pays off
  • minor accommodations in school: how to deal with the prosthesis if it’s out of her eye, seating adjustments, not sharing reading materials, eye protection and other safety precautions, possibly alternatives to ball sports (or realistic expectations for performance), help with social integration, and so on
  • good relationships with doctors, nurses, teachers, librarians, and other professionals

Based on the stories of other people in the microphthalmia/anophthalmia support group, it’s possible that she’ll enjoy school and develop a great sense of humour about her eye, but it’s also possible that she might have to deal with rejection or even bullying. I’m looking forward to learning how to work with or around whatever I can.

Thoughts on getting a membership to the Royal Ontario Museum (ROM)

I’ve been building up a small opportunity fund for A- so that it’s easy to take chances on memberships, classes, books, and other good things. After some consideration, I decided to use some of it for a membership to the Royal Ontario Museum. We’ve been working on animal names and sounds, so I figured it would be good to point to animals in addition to pictures in books, Duplo pieces, and small models at the early years centres.

The ROM turned out to be a nice quiet place to walk around and contemplate the vastness of history, A-‘s thirteen months of existence a blink contrasted with millennia. I picked up all sorts of tidbits as I tag along on tours, too, and I’m working on getting better at identifying animals myself. (I could probably spend a few years in the bird section!)

What do I want from the ROM?

  • I want to develop a deeper appreciation of our place in history and nature, and I want to be able to share that with A- as she grows.
  • I want to train my eye to recognize and differentiate various things.
  • I want to pick up more words and share them with A-.
  • I want to learn stories and tidbits that I can share with A- and W-.
  • I want a quiet, sheltered, spacious place to walk with A- or hang out with friends. I want to have interesting things to look at and chat about.
  • I want to expose A- to different sights, sounds, and textures. Sometimes they have smellable exhibits, too.
  • I want A- to feel at home in the museum instead of it being just a destination for school field trips.
  • I want to have something to offer to other parents and friends.
  • I want to support culture.

The benefits are mostly for me at the moment, but I hope this will pay off when A- starts asking questions about the world or learning about history. It might be handy for helping her increase her vocabulary and see how the world is connected. I’m still going to prioritize hands-on learning for her, since she needs to exercise all her senses, but I think the museum might add something useful to the mix. That means I should take notes (and perhaps photos) so that I can jog my memory, and I should slow down and point to things while naming them multiple times, paying special attention to exhibits at her eye level. I’d like to make it out to the museum at least once a week, ideally inviting other people along.

Now is a good time to bring A-, actually. It’s still a bit cold and rainy, so it’s better to be indoors than at a park or playground. She’s not walking independently yet, so she usually doesn’t mind hanging out in the carrier and nursing on the go. That gives me an opportunity to join tours or read labels, and then I can think about those things when she gets antsy and wants to walk around while I hold her hand. She toddled around the Ancient Egypt exhibit quite happily, and I could still hear some of the tour guide’s stories even though A- sometimes took me around corners. Come to think of it, A- seemed to warm up to the place faster than she usually does at the early years centres. Maybe she prefers to be more reserved when there are lots of active kids. She’s still a bit hesitant to touch strange things, but that might pass in time.

The math: The curator’s circle membership I signed up for lets me take three guests and four kids, includes free coat check, and costs $189. The social level of membership allows one guest and costs $149, so +$40 gets you free coat check and the ability to bring two additional guests and four children (4 <= age <= 17). Half of a two-year solo membership is $86, so +$63 gets you the ability to bring in one guest each time you come. An adult ticket is $20 (+$10 for the special exhibition), so the solo membership breaks even after one visit that includes the special exhibition plus three visits without. The premium for the social membership works after three guest visits including the special exhibition, and the premium for the curator’s circle membership works after two extra guests including the special exhibition, or lots of coat check use. (The member price of $1 per item would’ve added up quite a bit given all these coats and diaper bags!) Yay math! And now it’s a sunk cost, so I can just treat it as an investment in cultural knowledge and potential social interaction.

Among the things I learned this week:

  • Blue whales are huge! Standing next to the skeleton of one is a great way to realize how tiny you are.
  • Noise pollution is a challenge for whales.
  • Whales have really big poop flumes which can be seen from airplanes. The poop is bright orange because they eat krill, and krill is bright orange.
  • Bootlace worms are very long.
  • Researchers solve interesting puzzles with incomplete pieces. I liked how they pieced together the evolutionary history for whales with the help of Pakicetus. They also have to deal with weird one-off fossils like the Toronto subway deer – cool stuff!
  • You can differentiate between mastodon and mammoth skeletons by looking at the lower tusks, the curvature of the big tusks, at whether the teeth are cusp-shaped or smooth.
  • Cartonnage (linen and plaster) gave the Egyptians an alternative way to encase their mummies, since wood was scarce.
  • Chinese roof tiles could be quite elaborate and well-preserved. The designs were strictly regulated in some places and more free-form in others.

I’d like to go again on Tuesday and/or Friday, depending on A-. More to learn!

Notes from the Let’s Get Started parenting series

On the recommendation of our family home visitor, we signed up for the Let’s Get Started program run by the Macaulay Child Development Institute. It’s a 6-week program for parents with kids who have special needs or are experiencing developmental delays.

A- is okay so far based on the Nipissing developmental screens, but we want to keep on top of things in case she needs early intervention for her monocular vision, the learning difficulties that affect maybe 20% of people with microphthalmia, or anything else that might come up.

At the first session, a speech pathologist gave a short presentation on teaching kids how to speak. Instead of questions (“What’s this? What’s this?”) and prompts (“Say ‘apple.'”), it’s more effective to label (“Apple.”), model (“Apple, please.”, as you hand the child the apple), and expand (“Red apple.”). I found it very useful to hear him model the kind of talking to do around babies (“Open door! Close door!”). It’s been much easier to fill A-‘s world with words, and I’m less worried about being too quiet around her. It was also reassuring to find out that gestures count as words when it comes to the developmental milestones, so A- is meeting those for now. At 12 months, she says “Mama”, and is reasonably consistent about gestures for nursing and no. She often uses the “more” sign to ask for water, but she also uses it for other things, and sometimes we’re not quite sure what she wants. Ah well!

We missed the second session because A- was sick. They discussed the Nipissing developmental milestones, which we’ve already been using because of the Healthy Babies Healthy Children program.

The third session had an occupational therapist from Surrey Place. She focused on one-on-one consultations with the families there. I asked about A-‘s monocular vision, since people in the Facebook support group for microphthalmia sometimes shared stories of how they were automatically qualified for early intervention and how useful the therapy was. From my research, I know I might need to adapt how we teach her to pour water from a pitcher, deal with stairs or curbs, thread things, ride a bicycle, and drive a car. She’ll probably also need a bit of consideration when it comes to where to sit in a classroom, deal with shared textbooks, and get through physical education classes. Then there’s the social aspect too – dealing with limited field of vision and accidentally ignoring people, handling any bullying or isolation caused by being visually different, and so on. It’s been difficult to find information on monocular vision. There are many more resources focused on blindness in both eyes. The occupational therapist didn’t know of anything off the top of her head, so she asked me to follow up with her by email to see if any of her colleagues might be able to help. A- will probably be all right, but it never hurts to learn as much as I can anyway.

In the fourth session, a speaker from Holland-Bloorview talked about visual routines. They’re great for helping kids learn words and concepts, transition between activities, stay on task, choose, express themselves, put things away, and go through multi-step procedures. By showing an object, picture, or illustration, we give children a visual anchor for a concept or task. For example, I could show A- the grocery flyer and tell her that we’re going to the supermarket. The speaker gave each of us a laminated “First… Then” board with everyday activities. We also got laminated guides for handwashing and going to the toilet. I had looked up visual routines when I saw how the centre staff used little laminated cards to help kids move from one activity to another, so it was nice to get a little kit already put together. I also liked how the speaker had a bunch of visual cards hanging from her lanyard (a selection of emotions and actions).

Looking forward to the next sessions! It’s a bit more of a hike than our usual programs – 45 minutes away by subway and bus – but it’s good to be able to talk to specialists and learn more about what to watch out for. I heard that even developmental assessments have waiting lists that take a few months to get through, and it’s even longer for therapy. Whatever I can do to learn and support A- will be good especially if she ends up needing a little help, but not being as high-priority as other cases that agencies need to focus their limited time and budget on. Anyway, it’s all part of what we signed up for!

More thoughts on the timing of discretionary time

W- is thinking of shifting his discretionary time for side projects to early morning, before he heads out to work. That way, he can tackle it with more energy and enjoy making steady progress. I’ve been planning for my discretionary time in the evening, after A- goes to bed. It might be nice to experiment with setting an early alarm and staying in sync with W-. I’ve tried one-offs here and there and A- generally ended up waking along with me, so I didn’t get time for other things. If I do it consistently, though, she’ll probably shift her bedtime earlier.

The main thing that gets shifted around on my end is the journal, since that’s natural to do at the end of the day. The quick notes I take on my phone will probably be enough, though. Alternatively, I could split it up: sleep after my journal, and then wake up and so other things.

So, how can I ease into this? If I prioritize sleeping during her naps for a couple of days, that should make it easier to wake up early. A- will adjust her own naps based on her energy. This is a good time to try it, anyway – no major appointments coming up, so we can adjust as needed. I think W- wanted to start being up by 5 or even earlier. Bonus: electricity is cheaper.

We’ll see if A-‘s okay with my slipping away early in the morning. If not, maybe I’ll find my discretionary time somewhere else in the day. No worries! I’d like at least enough time for my journal and for Emacs News, so that’s about half an hour to an hour. Interruptible and can be deferred a day or two, so the time is pretty easy to find. Most of the other things can wait if need. The next big chunk is probably filing our personal taxes some time in March or April, but I should be able to find enough focused time in that period. Who knows, maybe A-‘s sleep patterns will have changed by then. We’ll see!

When both W- and I can play with A-

Sometimes I try to get things done while W- plays with A-. I feel good about taking care of household chores or urgent and important tasks, but I feel weird about discretionary things like updating my journal or working on my computer. Even if I just hang out while they play in the same room, that feels more comfortable than taking advantage of the opportunity for focused time. I wonder why that’s the case, and if I need to tweak my perspective.

My priorities tend to go like this: if W- wants to spend time with A-, I’ll take care of household chores like cooking and cleaning. When that’s done, we’ll play together, unless there’s a big and important task taking up brainspace. If so, I’ll try to get that done before returning to play.

It’s useful to have some shared play time. I pick up ideas from the way W- and A- interact, and it’s a good time for us to reconnect. Sometimes we come up with new games when we’re all together. A- also sees us interact with each other, which is good.

It’s also useful for W- to have some one-on-one time with A-, and for me to have some discretionary time. I’d feel more comfortable about taking that discretionary time if I had a clear purpose for it, like an hour or two of consulting, or some business paperwork – especially things where I need to be focused and awake. If it’s something I can do just as well when A-‘s asleep, even with the interruptions, I often prefer to postpone it until then.

There aren’t a lot of tasks that I feel I need to do right away. Most things can be done when the opportunity arises, whether that’s when A- finally sleeps soundly enough for me to unlatch her and leave, or when she eventually goes to school. On the other hand, there’s a definite time bound on this shared playtime with W-, and even for solo playtime with A-. There are only so many hours I’ll get to enjoy like this. I think that might be one of the reasons why I prioritize spending time with them.

How can I make even better use of shared time with W- and A-? I want A- to focus on W-, so I support their play instead of competing for attention. Cameras distract her attention and disrupt the flow, so I’ll just have to settle for observing so that I can draw and tell stories later.

A- will eventually become more independent, especially when she reduces her nursing frequency. Then she and W- can establish father-daughter bonding time and their own rituals – maybe at least two hours a week, based on the guidelines I came across. I can save my daytime discretionary tasks for then. We’ll also have some shared family time, and a few chunks of discretionary time for W- so that he can explore hobbies such as woodworking.

This time is short, and it passes quickly. I’ve had plenty of practice examining that little urge to Get Things Done and deciding whether it actually makes sense. For now, I’ve got this rare opportunity to prioritize play.

Encouraging physical activity

More physical activity would be good for all of us, especially A-. If she burns more energy, she’ll eat more, which means taking in more nutrients and broadening her tastes. She’ll build muscles and improve coordination, and she might even develop good habits. As for me, I want to be able to keep up with her and W-, and I want to improve my own health.

The more time she spends crawling, the better. When I take her to the Junction Family Resource Centre, the toys around the room give her reasons to crawl and explore. Bonus points for socialization and independent play, too. At home, she enjoys crawling after me when we play hide-and-seek, so I’ll make that part of our bedtime routine (and maybe our morning routine as well). We have floor beds in her room, so that lets her practice climbing up and down as well.

When she starts walking, she’ll have even more opportunities to be active. We can toddle around the house and in the neighbourhood centres. We’ll figure out how to walk around outside, too – the backyard, the sidewalk, the park, the playground. She can carry, push, and pull things to develop her arm strength.

Her microphthalmia means that she can’t use stereopsis for depth perception and she has to rely on other cues, so she may be a little more hesitant or clumsy. Because she wears a conformer, we’ll also need to periodically check if it’s still in her eye, search for it if it has fallen out, and plan for replacements due to growth or loss. None of these things should stop her from enjoying an active childhood, though.

Kids like imitating, so we can model that by being active ourselves. W- is great in that regard, and I’m working on it as well. I like walking, so she’ll get a lot of exposure to that. W- has been building a habit of daily stretches and I’d like to do that too. When that’s solid, I can add stuff for building strength and endurance. I’ve been enjoying babywearing as a form of exercise, too. Fortunately, A-‘s been growing gradually enough for me to keep up with her.

I’ve been thinking about classes and community resources that could be helpful. Since she likes somersaults so much, it might be nice to take her to toddler gymnastics. There’s a place within walking distance that has classes for babies who are at least 9 months old, so we’ll observe a session and think about signing up for the next course. It’s nice to have a well-padded place to practice tumbling and falling. There are also a number of well-equipped playgrounds close by, which will be good when she’s a little older.

There’ll also be time for her to work on other capabilities, like fine motor skills. Opportunities to do so tend to be abundant, so we’ll make more of a conscious effort to encourage gross motor skill development. We’ll go with what she’s interested in, and we’ll help influence her interests too.