Families of Neurodivergent Kids and Kids with Complex Medical Needs Are Still the Invisible Victims of the Pandemic

It’s 2022 and many people have been vaccinated and they have approved younger and younger children to get the vaccine, so many people are going back to something resembling normal.  But there is a group of people who are still being impacted by the pandemic and no one is talking about it.  This group of people are parents of neurodivergent kids and parents of kids with complex medical needs. 

In the beginning, we heard all about how hard it was to educate these kids online and how much they were losing learning-wise. However, no one really said anything about what happened when they went back to school. No one talked about whether or not these kids were even going back to school.  How is the pandemic still impacting these kids and why is no one talking about it?

Here are some common concerns that parents of neurodivergent or medically complex children may be still be dealing with:

1. Vaccines and your medically complex or neurodivergent child

So first and foremost, the vaccines for kids were the last ones to get approved, but I don’t think that there is any recognition of how scary this is for parents whose kids are different.  There is a history of fear around vaccines that goes back many years in the community of parents who have neurodivergent kids.  This fear surrounds vaccines that have been around since the ‘50’s. So of course, a new vaccine that hasn’t been around for long is going to be even scarier. 

Remember that we are all doing what we think is best for our kids. Even though the reports of vaccines causing differences have all been debunked, it doesn’t mean that the fear isn’t still there.  For a child that has complex medical needs, as many neurodivergent kids do, vaccines can be really scary.  Yes, these vaccines are safe for healthy kids, but we don’t know how the vaccine might impact a child with certain conditions. 

So of course, many parents feel like they need to wait until the science is in about how it is at least impacting people like their child.  What this means is that these families are either still living in lock-down, or living with the constant fear that their child who might be high risk is unprotected and could get very sick.

2. Going back to school was not normal for medically complex and neurodivergent children

Many students were able to head back to school last year, if their families felt comfortable or just felt like it was important enough for their child to be in the school setting.  For some students what this meant was watching all of their peers go back while they continued to stay home isolated and bored.  For many students, this meant heading back to a classroom that was very different than they remembered it. 

Whether it was fewer classmates or just that the desks were separated by plexiglass and everything was further apart.  Everything was different and for kids who were struggling pre-pandemic the differences made it harder to adjust when they were already settling in from the trauma of having to leave school in 2020. 

Lastly, things didn’t really go back to normal consistently.  Depending on the school policy any time the child had a runny nose or cough the child was sent home until it was safe for a big part of the year last year this meant that kids would be sent home for ten days at a time.  Because of this kids missed big chunks of learning and often lack of consistency makes for a hard transition back and adds to the learning loss earlier in the pandemic. 

The other thing that was not normal is that during the pandemic the school system lost a lot of staff.  So not only were there fewer teachers but there were also fewer aides, fewer bus drivers, and just generally fewer people available to help these kids have days that were normal.  And this was on a good day.   On a bad day, half the staff in the class might be out because of breakthrough cases, or at some points, classrooms had to close completely.  For kids that depend on consistency and routine to feel safe and secure enough to learn this spelled disaster.

3. Many parents of medically complex or neurodivergent children became aware of what was or wasn’t being done in the class and started looking for other options

Something else that happened during the pandemic was that many parents realized what their child was learning because they were present for classes on zoom.  This meant that once the families felt safe looking for other options the child never went back to the school they had before the pandemic.  Depending on the situation this may mean that things are better or worse but often non-public schools don’t have the same support available that public schools have for kids that need extra support.

4. Options for parents of older special needs children are still not running normally

Another thing that very few people are talking about is that options for “kids”/adults who have aged out of school are still not open.  Whether it is because they don’t have the staff or they haven’t figured out how to keep everyone safe or maybe they just are not seen as important.  The important part of this is that quite a few families are left with nowhere for their family members to go during the day.   

5. Services to assist these special needs kids were already short-staffed and are even worse now

Before the pandemic services for neurodivergent kids and their families in most areas were on a wait list.  Now things are even worse.  Getting OT,  PT,  Feeding therapy, or anything along those lines can take up to a year or more to get into.  This leads families to feel helpless and like their child is going to suffer long-term because they can’t get the services their child needs to really thrive.

6. Support is also harder to find

The services that were also available to support both families and kids are in even shorter supply than they were before.  Things from Respite, support groups, and therapeutic services have become even more difficult to access with long wait-lists and no one to provide the services.

It’s important to know if you are experiencing any or all of this that you are not alone.  Hopefully, things will continue to go back to normal and maybe the pandemic has pointed out some of the cracks in an already struggling system and we can find better ways to support families of neurodivergent kiddos and kiddos with complex medical needs.

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