As many states open up and do away with mask mandates, special needs families are trying to find a safe way to get back to normal. Struggling with a lack of in-person therapies and services, many families have seen their children reject or not benefit from the online options offered. The isolation of quarantine has affected the mental health of the general population, but special needs families are contending with the regression of behaviors and skills in their children due to a change in routine and lack of services, plus the lack of outside help and respite.
While some families are ready to place their children back in school or in out patient therapy, parents of medically fragile children must still consider the risk of COVID, and the inconsistent precautions taken from location to location. Regulations put in place to stop the spread of COVID have made routine and emergency medical visits even more complicated and stressful, and for children who needed to undergo surgery in the last year, families have struggled with keeping one parent bedside, while juggling the demands of home life with little or no outside assistance. Vaccines are currently only approved for those 16 or 18 and older, and in many states, unless a parent themselves is at risk or works in a specific industry they are not eligible for the vaccine simply because they are a caregiver of a special needs child, regardless of the child's risk factors.
It has been a long year, and for many of us, the future is still uncertain. We are navigating uncharted territory, where every outing or social interaction is questioned. We will eventually come out on the other side, but it will take longer for us then our non-special needs friends, and we will be different than we were a year ago. I asked special needs parents on Facebook and Instagram how their family life has changed for better or worse, during quarantine.
J.M., from Facebook - So, we are all pretty much introverts, so not a ton has changed, really. Even pre-pandemic, we were mostly homebodies - but did enjoy getting together with family more frequently. My youngest son has really objected to not being allowed in the house when we visit my sister for an outdoor, masked visit - and it can make him angry. My anxiety has gotten bad - I am high risk, and cried when finally cleared to get the vaccine. The boys have gotten way more screen time during bad weather than I would prefer (makes them cranky), and they really need in-person therapy, which has not been available yet. There is one place that does it around here, but there is a waiting list. Moving forward, I am looking forward to feeling less anxious about taking the boys to a park. My biggest fear has been my risk factors for getting and dying from Covid. I don't think I know enough about [my youngest son's diagnosis] to be as fearful for my youngest, and I don't think I will read up on it. D has had a particularly rough time with being in the house, and just wants to play with other kids. The kids on our block are not so nice to him, so he doesn't get to do much.
A.E., from Facebook - Our special needs children are our 17 and 15 year old daughters.... Although they have always been homeschooled, we did participate in gatherings with other homeschooling families, field trips, etc. Since the pandemic began, they have only been out to doctors appointments, their infusions, and for medical procedures. [My one daughter] has a service dog. In order to keep up a service dog’s skills, it is important to work with them regularly. Public access work is very difficult. The girls are lonely. And so is their 19 year old brother, who does not date or hang out with friends for fear of bringing COVID home.
CHH, from IG - Hard. School is a battle because the routine has changed multiple times.
MLT, from IG - My son's mental health is totally shot. Zoom sessions are totally worthless. We are so depressed.
NFF, from IG - Feeling really isolated but also nervous about going back into "normalcy" and having to fields questions and looks again [regarding our daughter's diagnosis]. We've been shielded for a year.
MSW, from IG- Mixed. We realised how little support we had anyway, so it uncomplicated some things. We also discovered a new school and it may have been the best thing to have happened.
MRW, from IG - My daughter just got accepted to a preschool for kids with disabilities that will include in person therapy.
RPP, from IG - Actually really well. We got a new device and better services.
My family was lucky. My husband has been able to work from home through the pandemic, and my oldest children's college classes have continued online. Our younger two (with disabilities), who we pulled out of school to homeschool for the 2020-21 school year, are doing much better with homeschooling than the virtual or hybrid method our local public school relied on. Some of the activities for our older children have safely resumed, others we have had to step away from because we considered it too high risk for our family. Thankfully, our older children are understanding, and haven't complained, but they've been disappointed none the less. We resumed attending Mass over the summer and although we go to the Saturday vigil Mass now (smaller attendance) we miss seeing all our friends from our usual Sunday service and hope we can return soon. Although my youngest two enjoy homeschooling and are asking to continue with it next year, I look forward to the day when they can engage in more social activities with their peers. Plans for a board game club, or power soccer team, or pretty much any group activity indoors, will need to wait. We have continued to have nursing throughout the pandemic, and thankfully, all our nurses are vaccinated. Having the extra set of hands has made the difference between our family surviving quarantine and me having a mental breakdown.
The effects of the quarantine will last much longer in our homes and families as we try to recover lost ground, reestablish routines, and reconnect with resources and our local community. Not to mention the added stress from the potential loss of a loved one from COVID, or loss of income from a job.
How has your family come through quarantine? What lessons have you learned? How have your children grown and struggled? Share your stories in the comments below.