Parenting a Child with Special Needs During a Pandemic

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mom and daughter with down syndrome special needs parenting
Loving mom talks with her young daughter as they use a digital tablet in their home.
There is no getting around it, living through a pandemic is tough for everyone. But if you are the parent of a child with special needs, this time can be even more stressful and intimidating. I believe the key to helping our kids process and adjust to the changes they are facing is modeling for them, in an authentic way, our own feelings. Our kids need us to be strong for them, but they also need us to be real with them, to tell them it's okay to be sad and scared.

There is no getting around it, this is a troubling time for everyone. But if you are the parent of a child with special needs, this time can be even more stressful and intimidating. Some of us have children whose conditions classify them as high risk for facing medical complications from the coronavirus, COVID-19. Many of us have had to pull our children out of schools where we have spent countless hours making sure their IEP’s (Individualized Education Plan) are built in such a way that it ensures they are receiving the care and education they need to grow and thrive. Many of us have canceled therapies to limit our child’s exposure to others. We are unsure of how long this will have to go on, how this will affect our child’s health, and if long term discontinuation will result in the loss of these services. Some of us find ourselves at home with children who require much physical care and we’ve lost all forms of respite we may have had. Some of us absolutely cannot be home to care for our children during the day but are struggling to find options for care giving. Some of us are having to weigh the benefits of necessary appointments with the risk of traveling and the increased likelihood of being exposed to COVID-19. Some are worried if necessary medicines and medical equipment will be in short supply.

If you’re anything like me, you’ve had to learn to fight isolation and seek out support and connection. Support groups, events, gatherings, even church has all been canceled. The reminders that pop up on my computer feel like a cruel joke. Reminding me of life before this coronavirus pandemic went from something I heard about on the news to something that has shaken my reality and routine.

Then there is our children, many of whom cannot understand the reasoning for the abrupt change to their life. These are kids who need structure, routine, and repetition to manage anxiety and behaviors. If we as the parents are feeling the stress of this time, how much more our precious children who want answers we cannot give them, like when their life will go back to normal. They are missing the faces and voices of teachers, aides, and therapists who have become as close as family to them.

How can we help our children through this time, especially those with special needs, when we ourselves are facing so much unknown and uncertainty?

I believe the key to helping our kids process and adjust to the changes they are facing is modeling for them, in an authentic way, our own feelings. Our kids need us to be strong for them, but they also need us to be real with them, to tell them it’s okay to be sad and scared. We need to be intentional to walk out our faith in front of them. Sending them a message with our words and our actions that being a Christian doesn’t mean that we’ll never have fears, but it means we don’t hang on to them. The Bible tells us to “Cast all of our anxiety on God, because He cares for us.” (1 Peter 5:7) Our eldest son struggles with anxiety. He is always looking towards the next thing that he has planned. Knowing his schedule (and the schedule of our whole household) gives him a sense of control. Not having his normal, not seeing the people he is used to seeing when he knows he is supposed to see them, has been extremely difficult for him. Every child is going to react to change in their own way and I believe it’s our job as parents to look for clues into what is going on in their hearts and minds. Instead of dismissing their frustration and being annoyed by their meltdowns, I think now is a time where we need to let them know they can talk to us. If your child is non verbal this may mean voicing for them certain feelings, validating them, and just being present with them. I know for so many of us, our lives have been turned upside down so this is easier said than done but try to give your children some kind of predictability in their days. It can be something as small as playing the same song every morning or reading them the same book every night before bed. There will be moments of joy and light during this time. Look for them, create them, and invite your kids into them with you.

I think all of us, as parents of children who have special needs, can remember a time when one moment had a rippling effect of change on our entire lives. Each of us remembers life before our children’s diagnosis was painted into our pictures, disrupting our plans and changing our perspectives. I would venture to guess that if we were all sitting in a room together sharing our stories we would still be able to hear the emotion brought about by the fear of the unknown. I know for myself, God has used my children and their special needs to teach me how life is fragile and precious and should never be taken for granted. They have taught us that there are no guarantees in this life. That there is a time for grief and a time for acceptance. They have taught us to find beauty in the broken and scary places. They have taught us to trust that at our weakest, God’s strength and grace will prevail. Above all, my children have taught me that this life is temporary and there is freedom in letting go of control and embracing that God is good even when our circumstances are not.

I believe we can protect our children, but not give in to panic. I believe we can wipe our tears and rely on God’s never-changing love to carry us through the unknown. I believe we can take this season on one day at a time. I believe we can look into the eyes of our children and be reminded of God’s faithfulness, trusting that He will turn this season of sorrow into a season of celebration because isn’t the truth of that weaved into all of our stories.

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