Living Life in Limbo: How We’re Doing in the Time of COVID-19

One of the biggest lessons Solly has taught me is that you can’t control everything. Keeping that in mind, it’s pretty ironic that he was born to a type-A, control freak – a.k.a. me. It took me some time to learn how to go with the flow, but five years into our parenting journey, there’s not a whole lot that ruffles my feathers anymore. That being said, when the future is in limbo, I sometimes still struggle to remain calm and unworried.

Snuggles at home

After we moved to California, everything was very much uncertain. Other than immediately getting Solly on the waitlist for weekly therapies, I didn’t worry about anything else: I figured things would eventually fall into place. And they did – we got a coveted weekly spot at NAPA Center for Physical, Occupational, and Speech therapies, I found a very sweet and super responsive pediatrician who Solly and I love, and we were able to make a dent in setting up our medical team, having one appointment with a neurodevelopmental optometrist and scheduled appointments with a well-respected pediatric neurologist and orthopedic surgeon. We even made contact with the school district to kick-start the IEP (Individualized Educational Plan) assessment process so Solly would be set up to start kindergarten in the Fall with all appropriate supports in place.

Then the COVID-19 pandemic hit. And, while we are all healthy and safe at home, a life in limbo became our unforeseeable future.

Here’s how we’re doing in all aspects of Solly’s life:

Therapy Life

We were scheduled for a therapy intensive beginning April 6th. When California began to shutter in the middle of March, I remained hopeful that we’d still be able to participate but was not surprised when I learned that NAPA Center needed to shut down to keep its patients safe and that our intensive and weekly therapies would be cancelled for an undetermined amount of time. Fortunately, NAPA – and many other therapy centers across the country – were able to move things online, so we could continue weekly therapies from the comfort of our own home. (Side note: I wrote a blog post for NAPA Center with some tips that made teletherapy successful for our family. If you’re new to teletherapy, it may be helpful for you!)

Getting Settled with Medical Team

In the month of April and May, we were set to have appointments with a new pediatric neurologist and orthopedic surgeon, as well as a follow up appointment with our new developmental optometrist. Given the current stay-at-home orders, these appointments are to be rescheduled, causing me to have some anxiety: the neurologist would help us stay on top of dosing for Solly’s seizure medication and the orthopedic surgeon would continue to monitor Solly’s hip development. It makes me nervous to not have these new doctors set up on our team, particularly if Solly gets sick and has a breakthrough seizure or if going nearly a year without a hip xray would cause us to miss an important intervention if his hips are no longer stable. I keep telling myself that if either of these instances arise, we’ll simply deal with it: we are lucky to have found a pediatrician who is in tune with Solly’s needs and would help us navigate any worst-case scenarios should they arise before we’re able to have our first appointments with these doctors.

Daily Life

Most notably, our stay-at-home orders affected our day-to-day – for obvious reasons. While the kids are not currently enrolled in school, we still keep a pretty busy schedule, often going to the zoo, aquarium, museums, the park, shopping, meeting up with friends, the beach, or any of Solly’s many, many appointments.

We like to be on-the-go and having that aspect of our day taken away from us has been difficult. I’ve learned that creating structure within our day – even though we’re at home for all of it – has really helped. In the early days of our stay-at-home orders, one of Solly’s Occupational Therapists posted a daily activity board on her Instagram Stories that broke the day into morning, afternoon, and evening, and listed general activities underneath each, like breakfast, walk dogs, outside time, book time, etc. There’s no time stamp for each activity, it simply suggests activities to move through throughout the day. I’ve set up a similar board at home and try to rotate the kids through indoor and outdoor activities constantly to help them stay engaged. (While this is generally pretty successful, there are still days where I struggle, wanting to just hang out and mope all day on the couch. When this happens, I just tell myself to get through the day and try again tomorrow. This post helped me realize I’m not the only one who feels this way.)

Prepping for School

We didn’t make it very far into the IEP process before our school system shut down for the duration of the school year.

When we were in Nashville, we opted to not go through the IEP process when Solly aged out of Early Intervention. Instead, we chose to send Solly to a fantastic inclusive preschool where he received high-end therapies. When we learned that we were moving, I initiated the IEP process in Tennessee, however it took them 4 weeks to even begin talking about assessing Solly for an IEP, a process that should have taken just 15 days. Putting together an IEP can take an additional 60 days to complete. Needless to say, we ran out of time to complete this process prior to our move.

Fast forward to March 2020, I submitted a request for an IEP assessment with our school district so we can begin planning for Solly to begin school in the Fall. Thirteen days later – two days before we should have received an initial response to begin in-person assessments, the school system shut down in response to COVID-19. Because assessments must be done in-person, I feared for the worst: Solly starting Kindergarten without any supports (an aide, special education, a paraeducator, therapies, an emergency plan if a seizure occurs in school, and so on) in place. Fortunately, when I followed up with the school district and voiced my concerns, they not only ensured me that he would have the necessary supports in place in the Fall, regardless of whether or not the IEP was finalized by day 1, but they encouraged me to send in all assessments and evaluations that I have in his files so they could begin formulating a plan for Solly. One of the reasons we chose to move to the sweet neighborhood we now live in is because of the highly-respected school district, and it’s already clear that this choice was a good one.

The Future

I’m not sure what to think about the future. Right now, I’m taking parenting, therapy, daily life, and education one day at a time. One thing’s for sure: if Solly gets sick with COVID-19, there is a pretty good chance that he’ll wind up in a hospital. When I began reading and planning for the virus back in February, I initially wasn’t terribly concerned: Solly’s lung and heart health are in tip-top shape and he has a very strong immune system. However, as time has passed and more research and clinical findings have been released, it’s clear that this virus is much more than a simple respiratory infection: it poses a huge risk neurologically and for us, our biggest worries are seizures and blood clots causing more brain damage or death. We’ll be keeping a watchful eye on how our state and country are addressing the virus, testing, monitoring, and planning for re-opening before we decide how to move forward with our daily lives.

While things look grim across the country and have certainly turned our world upside down, there are still some glimmers of hope and positivity in each aspect of our daily lives. We feel so fortunate that we’re able to stay healthy at home, we have plenty of fun activities to keep us entertained and learning, we’ve got weekly therapy to keep Solly’s development on track, and we’ve got everything lined up for when things begin to reopen. For me, achieving some level of acceptance that life will likely continue to be uncertain for quite some time has been immensely helpful in keeping a positive and realistic outlook. There will be some ups and downs, but, like coming to terms with an uncertain and unexpected diagnosis, we will adjust to a new normal and we will be ok.