Staying Home Without a Village Can Be Hardest on Parents of Kids With Special Needs, Here's How to Help
My son has autism spectrum disorder (ASD) and a mood disorder, which has landed him in the hospital on several occasions. During the COVID-19 pandemic, parents like myself find ourselves struggling even more. Here's how our loved ones can help.
A week before the governor of Virginia—my home state—gave his first press conference about social distancing and the need for families to stay home, my oldest child was sent to the hospital again. He has autism spectrum disorder (ASD) and a profound mood disorder, which leads to a cycling of sensory and emotional needs, and has resulted in a hospital stay on a few painful occasions.
A hospital stay is stressful no matter the reason, but an extended medical or psychiatric hospitalization puts a whole family into crisis. Add COVID-19 to the mix, with hospitals limiting visitors amidst heightened fears of transmission, and parents with medically and emotionally fragile children face challenges and anxiety like never before.
Children with mental health disorders, such as depression and anxiety, often struggle tremendously with even small transitions. Big changes like we're experiencing now can lead to some alarming, even dangerous behaviors. It can be similarly difficult for kids with ASD, attention deficit disorder, or even learning disabilities like dyslexia.
Without the typical support given during the day at school, parents can feel overwhelmed as their child's panic escalates. They might see behaviors that are much stronger than usual, with fewer resources available to help them. Some doctors and therapists are meeting virtually with children, but not everyone has access to that.
While parents should take time to care for their own mental health needs, they also need a strong support group during this time, says Emily King, Ph.D., a licensed psychologist in Raleigh, North Carolina. "It is important for parents to surround themselves with others who understand this need for support and are not judgmental," says Dr. King.
Now, more than ever, we need the support and love of our extended families and friends—even if we aren't asking for help. In calmer times, meal trains and offers to babysit siblings can make a world of difference. But how can you help now, when close contact isn't advised? Here's what you can do if someone you love is attempting to parent through a crisis, especially during the pandemic.
We're exhausted already, and a well-intentioned friend crying or raging against the world right now just exhausts us further. Stay cheerful for us, even injecting humor as appropriate. It's actually a relief for many parents to not talk about the medical health emergency we may be experiencing in the moment.
Michelle Best, a mom of three in Arlington, Virginia, agrees. Her son suffers from juvenile myositis, a rare and life-threatening autoimmune disease that causes muscle weakness and a skin rash. When her son's medical needs flare, the last thing she wants is for her friends to be angry on her behalf.
"Don't get angry at the crisis or judge those involved in the crisis," she says. "I need your encouragement. I don't have it in me to walk you through this personal medical crisis as well."
Avoid Offering Advice
Trust us: We've already read all the books, talked to specialists, and considered alternative therapies. Instead of offering advice, consider reaching out with a text, email, or note to say you miss us, care about us, and can't wait to hang out (right now that means virtually!) sometime soon.
Connect Us to Others in Similar Situations
When a child goes into crisis, parents often feel like they're the only ones who have ever been through anything like this. That sense of separation can create an overwhelming panic and loneliness. Will we always feel this alone, we wonder? But connecting with others who share these life experiences can make all the difference—especially right now. If you know someone who "gets it," then offer to make that introduction.
"Overall, I felt very supported by family and friends when my child went into a mental health crisis," says Bethany Keener, a mom of two kids in Silver Spring, Maryland. "In spite of that, I often felt isolated and lonely. I wish I could have made connections with other parents in similar situations earlier."
Small Gestures Go a Long Way
Your loved one needs you more than ever right now—not to fix their problems, but to just be yourself. One of the best moments during our recent crisis came when I arrived home late one night to a small gift on my front steps: a bottle of my favorite cheap red wine and a hysterical, highly inappropriate sympathy card. It was exactly what I needed. I didn't have to put on a brave face or explain a medical procedure. I felt surrounded by love and it was nice to cry tears of joy for a change.
A little gesture can make all the difference, be it a shared glass of wine over Zoom, a handwritten note, or even a silly meme-exchange by text. It lets us know we're not alone, we're not forgotten.