For a child with a serious neurological condition like H-abc, inactivity is the worst situation even under normal circumstances. When COVID-19 evolved, here is how it impacted our family and other families like ours living with H-abc.
Initial Impact
We had to make a decision before anyone else, to keep our child home from school and other activities. We know other parents were struggling with this decision, but for a child with a condition like H-abc, exposure to viruses is very dangerous. Due to the lack of general inactivity and history with complications tied to respiratory conditions, the kids immune system are already compromised. We were very afraid to go out to the store, for fear of bringing the virus home. We ordered all of our food on-line for delivery. We used bleach to clean anything we came in contact with. Our meds were sent in the mail! We cut off physical contact with everyone, as did most people.
Therapy
We became Occupational and Physical Therapy experts! Luckily, we had equipment at home to use. We met and continue to meet weekly with therapists on Zoom and learned how to provide the much needed therapies to keep Elouise strong and active. Every day we apply these therapies and she is probably now in the best shape ever! We are lucky to have a heated hydro pool donated by Make A Wish! It was installed just before the quarantine hit. We used it almost daily, even in the colder months of March and April. It was a life safer, not only physically, but a great outlet and diversion from the monotony.
Family and Friendships
For kids with neurological conditions like H-abc, their means of communication with others are hugs and smiles. This all went away when we were quarantined. Elouise loves to hug, its her way of expressing her feelings as her verbal abilities have diminished over time. It was very difficult to be cut off from her school friends and church friends and family. Even under normal circumstances, developing relationships for kids with neurological conditions are difficult given their mobility and speech challenges. During COVID, the complete void of any interactions with her network of people was and is difficult. However, Elouise spends much of her time watching her shows, and following her Teen idols and calling her family and friends!
School
We as parents, very quickly became experts on how to access the online classrooms, how to do math, write essays and generally revisit 8th Grade Middle School! Kids like Elouise need one on one assistance at school. She is unable to do this alone. So, with much challenge, we figured out how to navigate it all, set up a schedule, met with her teachers and peer remotely, worked on homework, and managed to graduate from 8th Grade!!
Summer
Camps are cancelled, pools are opening but with restrictions. Our camp for kids with disabilities couldn’t accommodate us due to the close hands on assistance that is needed and fact all activities are restricted to the outside, in the heat, wearing a mask. This is very difficult for a child like Elouise so we couldn’t attend and in fact, the entire program was cancelled.
The New Normal
As the disease progresses for children with H-abc, we are always learning to adjust to a new normal. Ten years ago our normal was a child who could walk, run, write, play, and speak just like any other kid. Over time we have adjusted to the progression of this disease, and today Elouise is in a wheelchair and using a spelling board to communicate. But she is healthy and happy. As others across the globe are adjusting to the new normal post Covid, we will need to figure out how to live with social distancing, and its very unclear how that looks for us. Some parents are not letting their kids go back to school until a vaccine is available, that could be over a year. Consider the therapies which involve close interaction with others indoors, all of which increases the risk of transmission of viruses. With all the challenges kids with neurological conditions face, this creates more complexity.
Our Outlook
Its hard to say what the next year will look like, and given concerns with the virus possibly surfacing again at elevated levels, its even more unclear. However, as we did before the virus and as we continue to do moving forward, we will live each day, day by day, to its fullest with hope and faith!