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!