Healthcare Hacks for Special Needs Families: Smarter Ways to Manage Medical Visits

The intersection between special needs and medical needs can be a messy one. While neurodivergence and disability don’t always cause medical complexities, comorbidities are common.

Down syndrome is a fine example that I am well acquainted with thanks to my gorgeous 15-year-old son, Arlo. His birth and subsequent stay in the NICU gave me a crash course in the more prevalent co-concurring conditions: heart abnormalities, hypotonia (aka low muscle tone), spine instability, digestive issues, hypothyroidism. In the years since, we’ve dealt with vision deficits, hearing loss, sleep apnea, ADHD, immune system issues, infections, skin sensitivities, and blood disorders.

Needless to say, it has been, and continues to be a lot. I went from occasional well visits in my 20s to having my son’s pulmonologist on speed dial in my 30s.

As the sun slowly sets on my 40s, I have a lot of wisdom to pass along, particularly when it comes to managing the medical stuff. So did many fellow caregivers when I asked them how they juggled their kiddos’ medical needs.

Here are some healthcare hacks from the hivemind:

Consult your calendar

If you haven’t already, develop a calendar system that works for you. Plug in dates as far into the future as possible. If your child is in school, program days off as soon as the next year’s academic calendar is available. This allows you to utilize those full and half days when you’re booking appointments months or years in advance.

Consider the Big A$$ Calendar which is what Lisa Richard and her family use. Lisa is the mother of 7 children and the Rural Outreach Coordinator for the Center for Family Involvement at VCU’s Partnership for People with Disabilities. The calendar is just as described – a huge, hangable, poster that displays the entire year on a wall. Having upcoming dates of importance in plain sight helps Lisa and her two adult children with intellectual disabilities prepare, both mentally and physically, for appointments and other event.

Appointment stacking

An up to date calendar also comes in handy so you can schedule multiple appointments in a day. This is helpful if your child sees several specialists, and even more beneficial if it requires travel. It’s also useful if you have more than one child. Some caregivers whose children see the same specialists do this stacking technique together so they have road trip buddies.

Now that Lisa’s children are adults, she tries to stack her regular dental and well visit appointments with her kids for optimal efficiency.

Make a vacation out of it

Sometimes seeing a specialist requires an overnight. This is a great way to utilize appointment stacking over a couple of days and just turn it into a vacation. Arlo sees 3 different groups of specialists at 3 different facilities in Boston. We’ve learned to make the best of it by creating traditions that we look forward to every visit. It’s one of our favorite cities.

Use positive reinforcements

Whenever possible, building fun around the hard stuff helps. One of Lisa’s favorite post-visit activities is mini-golf.

A caregiver whose 6-year-old has sick cell disease knows how difficult the monthly blood draws are for her daughter, so they have stickers and a small toy ready as a reward and head to her favorite pizza place after every jab.

Arlo and I have an entire arsenal of rituals to help ease the pain of the never-ending poking and prodding he endures. We rock out in the car to playlists full of songs that we both love. An oat latte for me and a cocoa and croissant for him are non-negotiables. Passing cars on the highway while yelling, “see you later suckers” almost always gets a laugh.

Advocating for specific needs

Most of the time, hospital staff recognize and accommodate for the unique needs of each child. But advocating for specifics ahead of time can prevent unnecessary stress and trauma. Dawn Peifer-Snow is the Center for Family Involvement’s Blind/Vision Loss/Deafblind Family Specialist. One of her daughters is completely blind and has hydrocephalus and autism. As a child, her daughter needed to go under anesthesia every six months. Dawn created a protocol with staff to ensure she would walk with her daughter to the operating room and be next to her in recovery as she was waking up. Since her daughter was into Tinkerbell at the time, she also convinced the OR team to role play characters from Peter Pan to help ease her daughter’s fears. Once this strategy was implemented, her kiddo went from having panic attacks ahead of the procedures to being excited about them.

Be perpetually prepared

A reoccurring theme with every caregiver I queried: have a go-bag ready at all times and don’t even think about packing light. Trust me, I learned this the hard way. The first time I took Arlo to the emergency department as a wee one, not only did we end up being transported by ambulance to pediatric emergency facilities, he ended up being admitted for a week. All I had was his diaper bag. From that moment on, I always had at least one change of clothes for myself and 3 days worth for each kid.

Everyone’s bag contents will vary, obviously. Updating it seasonally is a great way to make sure everything is up to date. Make sure you have extra clothes not just for your child, but for you. If your kiddo is a frequent flyer who might require overnight hospital stays, consider keeping extra toothbrushes, dry shampoo, toileting essentials, chargers, gum, snacks, hand sanitizer, and water on hand. Don’t forget a pen and notebook!

Snacks and drinks! If peanut butter and jelly are your jam, you can make an entire loaf at once and put each sandwich in individual bags and freeze it so they’re ready on a whim. They’ll thaw on your drive. Another caregiver said she cannot be bothered to make sandwiches and relies on hummus, carrots, and crackers. Individual nutpacks, seaweed snacks, or dried fruit are great to just keep in the car. Several caregivers shared that they preload tube feeding syringes so it’s easy to feed their child on the go. One mom even pulled over on a highway to give her child meds and a tube feeding while stuck in traffic.

Program your phone! A huge time saver is to add each doctor’s number into your contacts. If you utilize an online calendar, put the address and appointment information into each event so it’s all ready to go when you hit the road.

What about work

It can be hard to juggle work when caregiving is a full time job. Mastering the art of multi-tasking is critical here if you have a job that allows it. My laptop and charger are with me pretty much everywhere I go. I invested in a portable monitor so I can use dual screens on the road.

Schedule calls and virtual meetings during long drives. Zoom and google meet have on-the-go options that make this easy and safe. Just be sure to pull if you need to set up the call. And for naysayers claiming this is dangerous, when done right it’s no different than talking to a passenger. And it’s far less risky than road trips with toddlers demanding snacks from their carseats in the backrow.

Be as open and honest about your situation as you’re comfortable with. It’s impossible for others to understand how complicated caregiving is unless we start providing context. Talk with your supervisor about how you can adjust your schedule to fulfill your work duties while managing your child’s complex care needs.

If necessary, you might be able to use the Family and Medical Leave Act, or FMLA to care for a loved one. FMLA allows employees to take up to 12 weeks off over the course of a year to manage a serious health condition for themselves, a child, a parent, or their spouse.

Self-care and maybe even a little fun …

No is a complete sentence. Practice saying it, often. Dawn said that learning to say no to things was the hardest but best thing she ever did for herself and her children.

Dress for comfort. I’ve even consulted my dear friend Dr. Kathryn Rooth about this. She said that doctors do not care what you wear. Yoga pants or jeans are completely acceptable. I’ve always been partial to the athleisure aesthetic. It’s comfortable for long drives, allows for doing squats, push ups, and stretches in the waiting room, made chasing toddlers and changing their clothes easier, and was great for blowing off steam at a playground or park on the way home. The casual comfort dress code goes for kids too. Highly recommend slip on shoes for all of those exams and weigh-ins!

The game “Simon Says” is pure magic. Arlo’s younger siblings have been tagging along to his appointments since they were infants. I cannot tell you how many times sporadically starting a round of “Simon Says” has snapped them out of misbehaving when they had ants in their pants.

Remember a critical equation: Happiness = Reality – Expectations. We must learn to embrace the suck. It’s OK to tell your child or children that you’d rather be somewhere else. These endless medical appointments might be our normal, but it’s not normal. Talking openly about how hard this can be is validating, even for kids. Ask them, in an age appropriate way, what would make the day suck less. Maybe it’s a new playground or fun toy shop. Maybe it’s a drink of their choice at the Starbucks drivethru. Figure out how to make the best of things together.

Schedule time for you. Lisa blocks off every Monday afternoon for a standing lunch appointment with a childhood friend. Unless there’s an emergency, this is a non-negotiable that fills her cup.

One caregiver creates a monthly “fun-do” list with her children that includes things like a library visit, indoor playgrounds, a sleepover with mom, and dance parties in the living room.

What if there’s literally no time? Know that you’re not alone. There can and will be phases of your life where it’s impossible to carve out any
meaningful moments for yourself. I’m in a prolonged state of overextension right now. Music is my everything – simultaneously meditative and medicinal. When everything around me is rapid fire, I put on highly visible headphones everywhere I go and blast whatever artist is currently soothing my soul on repeat. This strategy deters most folks from talking to me. If they attempt to engage, I pretend I don’t hear or see them and
just keep swimming. Highly recommend.

About the Author

Erin Croyle is a journalist who has worked for National Geographic and Al Jazeera English. She was working in Malaysia when her first child, Arlo, was born in 2010. His diagnosis of Down syndrome transformed her career – shifting her focus to disability rights and advocacy. She’s currently the communications coordinator at Cornell University’s ACT for Youth, a communications specialist with the Center for Family Involvement at VCU’s Partnership for People with Disabilities, and the creator and host of the podcast The Odyssey: Parenting. Caregiving. Disability.