Change, change, change
When I think about Luka’s brain, I imagine millions of tiny sparks going off due to the many pieces of information he takes in each day. All these little sparks are creating new connections, rebuilding what the virus took away. Perhaps this is why Luka learns in his own unique way, because the pathways in his brain might look quite different from mine. While these new connections constantly impress me with all his gains, I imagine this time of life can be quite overwhelming for any two-year-old. Luka recently moved out of his cot (thanks to some superior jumping skills), is exploring more and integrating his vision while he walks, and running (if I hold his hand). He understands many words and hums many songs. On top of this, his world has changed. I’m sure our kids hear our worry when we listen to what is happening on the news. In my mind, I’ve embraced a world of slower days and family time. For Luka, it is a lot of change. In some ways, there is less stimulation for my energetic little person - swimming, gym and park time is replaced with our same backyard, and a few walks to watch trucks and cars go by. However, in other ways there is so much more to take in - increased traffic and noise in the house with the whole family home full time, more time to observe and explore his sisters craft activities and imaginary games, and much more time to play with Daddy and help make coffee. It’s no wonder Luka has been exhausted, and had more than his usual share of meltdowns.
Embracing our new routine
Luka learns a lot from exploring our yard and the extra time with family, especially playing with his sister. The extra time I have had, away from my usually busy calendar, has also enabled me to really watch Luka, and be present for important milestones as they happen. I feel like I've learnt more about Luka, and his likes, dislikes and triggers.
Along with this great home-based learning, I also want to make sure I keep engaging with our therapy team to guide us. So, how have we managed therapy in this strange new world? We decided to go online with our therapy, thanks to my tech-savvy therapists! We have also changed up some of our sessions, to make sure they still work for us even in an online setting. Here are some things that have helped us get the best from our sessions:
I am impressed by Luka’s ability to visually focus on the iPad screen, with frequent breaks. However, for some sessions where he needs to engage with the screen, half an hour is enough for him. Shorter, more frequent sessions have worked for some of his therapy.
Pre-covid, we were a busy family with activities most days. These days, I keep weekends as screen-free as possible and usually at least 2 days during the week therapy free. Luka does best with his therapy in the mornings, and can be exhausted and cranky for awhile after. Therefore, afternoons of music, books, or exploring outdoors is best. On our non-therapy days I have loose activities planned that both kids can be involved in at least a little. This has really helped Luka to observe, and sometimes participate in imaginary play, play-dough, and other crafts.
Structure and Preparation
Usually I’ll give a quick update at the start of each session, but Luka can get overwhelmed by too much conversation over a screen. So we focus on him first, have a chat while he has a drink break, and then I go through my prepared list of questions to get advice. It has been very helpful to take videos during the week so we can discuss his progress, even if he doesn't want to perform through the screen!
Luka’s iPad has a black frame, which helps him concentrate on the screen, although he seemed very surprised to have his therapist sitting on his toddler couch the other day! I’m not shy in letting the therapist know if the picture is good, or if we need to move away from a window etc to get the picture as clear as possible for Luka. I also don’t worry if he’s not focussed on the screen, it can also be a great way for him to practice his receptive language skills if he is visually fatigued.
Usually, I try to have therapy sessions when my husband and daughter are in other rooms to avoid distraction. But sometimes, I've engaged them as brilliant camera operators, so I can help Luka show off his skills. Luka loves to follow his sister, so in activities like music class, it’s been helpful for Luka to watch Lilly do the actions rather than trying to concentrate on a screen.
One of the best outcomes of having everyone in their respective homes, has been the ability to tee up sessions with multiple therapists at once. Recently I joined Bronwen and Luka's physiotherapist for a session in the backyard and local street, with my husband filming. With the group of us working together, we were able to bounce ideas off each other, culminating in Luka navigating our outdoor stairs all by himself for the very first time! It also helped us ensure our goals are aligned across all his therapies, and I have also had successful joint sessions with our Orthoptist and Occupational Therapist.
Above all, I’m trying to prioritise time to let my family learn about each other, bond, and be aware of each of our needs. This time is challenging for many of us - whether we have CVI, or live or work with someone with CVI. But it can also be an opportunity to reset, slow down, and re-think our goals, as well as just celebrating both our kids. I’m grateful for this extra time to learn about where Luka is at and be part of his new achievements as they happen.
A word from Dr Bronwen Scott, Luka's Orientation and Mobility Specialist
I began doing remote work in the CVI area about 18 months ago. I have been working with families all over Australia and the distances mean it is not always possible to do face-to-face interventions. When I’m doing the CVI Range assessment, I email families a list of items for them to gather, then we set up the iPad or phone so I can see what their child is doing as I talk them through the assessment. This has worked really well with dads, mums and siblings all doing excellent camera operation work! This means we can get strategies in place that families can implement in their daily routines - which is what O&M intervention should be about anyway! I also have regular catch-ups online where I can support families to adjust their interventions as their child’s functional vision use changes. It’s a bit more difficult doing O&M remotely but there are lots of things that can be done at home. Activities to promote concept development, mapping skills and even long cane skills can be done online.
I recently connected up with Heidi and Luka via Zoom, with their physiotherapist also joining us. We were able to observe Luka out on the street using his new long cane, give some suggestions and collaborate on our O&M and physiotherapy goals. Working this way helps empower parents to feel confident to support their child’s progress - after all, parents are a child’s first and most important teacher!
We would love to hear from you about how you are during this time, and any strategies that have helped you.