Updated: May 9, 2020
As states across the U.S. figure out how and when to open up following weeks of COVID-19 induced quarantine, special needs families are struggling behind closed doors in unique ways, and will continue to do so, long after their friends with typically developing children return to a somewhat normal life.
As the mother of two medically fragile children, I, and all the occupants in my house, will not be in the first waves of people returning to public spaces or stepping out without a mask and gloves in the next few weeks. We may not be able to return to Mass when the churches in our diocese open, and outside classes and activities may not resume for us until long after other children have returned. Special needs children and adults do not exist in a bubble: their safety relies on everyone in their family and who comes in contact with them on a regular basis - parents, siblings, and anyone else in the home-to remain quarantined.
Special needs families (which number more than 20.9 million in the U.S.) are struggling financially during the quarantine, because financial struggles are part and parcel of special needs parenting all the time for many. Lots of families carry medical debt and rely on one income so the other parent can be a caregiver. Single parents who rely on the school system to provide therapy and education while they work are currently stretched to the breaking point.
For parents whose kids thrive amidst the routine and structure of a school day, they are now faced with frustrated kids who don't understand why they can't go to school and who are regressing in their skills. Not simple academic skills that can be boosted with a few workbook pages, but basic coping, communication, and personal care skills that have been lost and will require months of intense therapy to regain. ...whenever it's ever safe to resume therapy.
Parents who relied on the few hours school provided for rest and respite are now caregivers 24/7 with no breaks and are possibly cut off from all outside help. Managing the care of their special needs child makes working from home, or educating any other children in the home impossible, or close to it. Behaviors that often require a team of teachers, therapists, and aides to control in a safe environment, are challenging for parents forced to stay home and keep their children inside due to weather or risk of running off. Those of us who still get outside nursing rely on our nurses, and their families, to remain in quarantine until it is safe for all the families they care for to resume normal activities.
While teachers try to connect via Zoom and the like, many special needs kids are unable to use this type of technology and shut down, cry, or resort to tantrums when forced to interact with a teacher or class on a screen. Academic progress has ground to a halt for many kids whose parents can't create their child's familiar classroom and schedule at home.
Parents whose children receive essential treatments in a hospital setting are being forced to delay treatments or, as one mother told me, place their immunocompromised child on the same floor as COVID-19 patients to receive an infusion. We chose to delay an important treatment for our sons, and now I don't know when they'll get their next dose, and I'm fearful they are starting to become weaker.
Special needs parents have all the same concerns about the economc impact of a prolonged shut-down, and like most Catholics, we miss access to the sacraments. We question the constitutionality of some government actions, however first and foremost, as parents of some of society's most vulnerable, we fear the affect this virus, or an overwhelmed medical system, can have on our child. Our hearts are with the disabled adults and senior citizens living in group homes who are at great risk, and we worry about healthcare rationing should our child need care in an ICU overwhelmed with COVID-19 cases. Already, some disabled people and their families are having trouble getting routine medical, or ventilator parts (which much be changed out frequently even for a healthy person), because of the need or hoarding of others.
As social media chatter turns to opening up and getting back to normal, special needs parents want you, their friends of typically developing children to know that our normal (which probably seemed overwhelming to you anyway) is a long ways away. So often you've checked in with us during quarantine wanting to know how we're doing and how you can help despite facing your own challenges. As we enter a new chapter of this pandemic, let me offer some advice on how you can help your friends in the special needs community going forward if you find yourself in a position to do so.
Pray. It's always appreciated and it does so much. If this is all you can do, know it's still plenty.
Just listen. If you call or text to check in, please allow us to share our struggles with you free from judgement and comparison. It's a unique situation for us all, and it's okay to admit you have no idea what we're going through. If you're not 100 percent sure you're comparing apples to apples, it's best not to compare something you're struggling with to our struggles. If you need help dealing with something during quarantine, it's best to turn to a non-special needs parent for a shoulder to cry on, unless you've been assured by us it's okay to do so.
Offer support if you're able, but know it's not required. Meals delivered or gift cards for take-out are great. Offering to pick up groceries or supplies while you're out or keeping your eyes peeled for essential items they may have been unable to find on their own shopping trips. Support the businesses of special needs parents and promote them to others.
If you have stockpiled gloves, Clorox wipes, alcohol prep pads, or other cleaning and medical supplies you realize you no longer need, consider offering them to a special needs family. Many of us go through a lot of these items on a regular basis to keep our kids healthy.
Offer respite post-quarantine if you're able. If you are capable of giving a mom or both parents even an hour off, you will be providing a gift greater than you can comprehend.
Be patient with our kids. It will take longer for many special needs kids to get back to where they were socially, mentally, emotionally, and even physically. You may see new difficult behavior, or the resurgence of old behaviors. Extend our children some grace as they struggle to regain these skills.
Be patient with us. We're more worn down than usual. We may snap, or seem angrier. We may not respond to your calls or texts in a timely way. It may seem as if we've dropped off the face of the Earth. We do miss you- please continue to check in and know our relationship will get back to normal in time.
Employers, be patient with your employees. Working remotely may prove difficult around the needs of their child. They may be eager to come back and work, but maybe they need to stay home longer and work remotely to protect their child from infection.
Teachers, be patient with your special needs students. Also, extend patience to students who are siblings of special needs children as they may not be able get work done at the same rate as other students due to lack of parental assistance or distractions from their sibling.
We don't claim to have the monopoly on suffering during this time. We know there are many families stuggling and uncertain of what the future holds. It's not our goal to discredit or lessen the burdens of others through comparison by sharing our stories. However, many of us are surrounded by caring friends and family who genuinely want to help, but often struggle to understand our experiences and how to offer assistance. I hope I've given you a glimpse inside what many are experiencing and what we need most right now.
As special needs parents, most of us know we're capable of undertaking hard things. We know we're capable of great love and sacrifice for our children, but that doesn't mean we are weathering this storm any easier. Like you, we're looking forward to the new normal, whenever it arrives.
Kelly Mantoan is the founder of Accepting the Gift. She blogs at This Ain't the Lyceum. She would like to thank all the parents who shared their experiences for this post.