While all active parents are caregivers in some sense of the word, parents of special needs children are more than just parents — we also take on the roles of nurses, educators, therapists, and so much more with, sometimes, little to no training or prior experience in those areas.
As if this reality wasn’t difficult before, parents and caregivers of special needs children are more overwhelmed than ever during the pandemic. The loss of routine and other challenges brought on by COVID-19 are causing our children to experience more frequent episodes of severe anxiety that are resulting in intense behavioral difficulties.
As the country has essentially become fully virtual, crucial support systems have diminished for special needs families, including school, remote therapy programs, live-in nurses, and after-school activities that us parents typically rely on. Even with school being held virtually, the vast majority of children with special needs are not able to follow along with the virtual instruction, leaving them helpless, overwhelmed, and frustrated.
This is not only putting many parents in the position of choosing between our jobs and this caregiving role, but we are finding it nearly impossible to provide the necessary sensory, behavioral, and educational instruction our children need without the help of in-person professionals.
In the midst of trying to fill all of these gaps, manage our careers, and deal with normal and crisis family situations, how in the world are we supposed to push through without experiencing burn-out?
Here are a few things that can help.
Parents need to SUPPORT other parents
We have seen parents judge and criticize other parents more than ever before. Some want to send their kids back to school, some criticize the thought. Some children refuse to wear a mask and the parents get blamed by other parents who don’t fully understand the situation, and some willingly choose not to make their child wear a mask for their own health and safety reasons. Some parents cannot access distanced learning for their children, or virtual learning is not an option based on the child’s cognitive disabilities. This list goes on and on.
In this time when special needs parents are feeling more pressure than ever before, it is CRUCIAL to set these differences aside and support each other in one way or another. The world has enough doom and gloom as it is, and at the end of the day, it’s each parent’s decision on what is best for their child specifically. Be kind, be helpful, and be encouraging.
Create or recreate a support team
Even if you are a parent of a high-risk child, maybe even especially so, you have to take a break. If your old team of helpers has fallen apart during COVID-19, it’s time to build a new one.
Start with people you trust who you can build immunity with — one or two support people who are willing to go through a two week period of no exposure and some kind of quarantine to keep from putting your children at risk. This way, they can be a back-up during some period of time for you. Maybe this is a grandparent, a specific nurse, a member of your church, a PCA, etc. These people DO exist, and they are our best bet at getting some sort of break when we need it most — and we do, in fact, need it.
Reach out to public agencies
Most public agencies have extra money right now, but you have to reach out and ask for it! In our state, this includes the Department of Developmental Services, MASS Commission for the Blind, MASS Health, etc. In your state, you will have similar agencies as well. They have extra pockets of money right now to help support families like ours during the pandemic, but they won’t come looking for you.
This goes back to point #2. There are ways for people to help you virtually! If you don’t have time to do this research, or you can’t get someone to come help you with tasks in your home, find people who can help you from where they are. Have your support team contact these agencies and find assistance on your behalf while you are taking care of your family and everything else going on at home.
For more helpful tips on how special needs parents can prevent burn-out during the pandemic, watch the recent Facebook Live session hosted by Special Needs Companies founder Annette Hines in our “Circle of Care” Facebook group here.