When it comes to raising kids with special needs, parents know that skillful planning can make the difference between a successful experience and a painful meltdown. So they devise strategies and shortcuts to navigate around potential trouble spots.
Of course, these tips aren’t meant to replace evidence-based treatments. But it never hurts to have more items in one’s parenting toolbox.
For kids who have trouble tolerating loud noises, scratchy clothes, long waits or unwelcome surprises, here are some suggestions from parents who’ve learned from experience.
Many kids, off or on the autism spectrum, have sensory processing issues. These challenges can make it hard for them to handle too much sensory input, wait in lines or make transitions.
Nina Sodhi gets ahead of the curve by involving her child, a technique that can be effective across the board: “I ask my son to pick out one pair of new pajamas and then I buy five identical sets. No more nighttime conversations or tantrums about which pjs to wear. I do the same with socks; we have seven pairs of the same red socks.”
Difficult experiences can be the mother or father of invention. Lior Grimm Schwartz “figured out that in the winter, when it’s too cold to wear Crocs, my son – who thinks socks are torture chambers – can wear Uggs on his bare feet.”
When it comes to auditory overload, many parents endorse headphones and earplugs. RG Bella uses noise-canceling headphones “for everything: restaurants, movies or anyplace that’s likely to get loud.”
Hanna Valva has a tip for sporting events that could also be used at movies or the theater–anyplace where seating is fixed: “We make sure to sit on the aisle to allow my son to walk around easily. And, specifically at basketball games where they blast music, we sit high up, above the speakers to reduce the sensory impact of the noise.”
Valva’s tips often require showing up early to events, something Judy Turetsky has liked to do for her grandson, as well. By beating the rush, “things were still quiet and calm. When the volume increased gradually around him, it was much easier to deal with rather than walking into chaos. This has worked for family events as well as outside ones.”
Meanwhile, any parent of a child with sensory issues has probably encountered the nemesis that is an automatic toilet. The sound and suddenness of the flushing can be a recipe for a meltdown. So how do seasoned moms and dads tame the toilet? Have Post-Its handy; you can use them to cover the sensor so the child can flush when ready. Parents can also bring hand sanitizer to avoid touching paper or using those ultra-noisy hand dryers.
When Juliet Ross’s son was a baby, “he was completely undone by certain lights and sounds. The indicator lights that are on just about everything—the baby monitor, white noise machine, wipes warmer, cable box, etc.–made him cry.” So she covered
all the small but bright lights with electrical tape.
Maureen McMurray Femenella’s sensory-seeking 18-year-old son is a hugger. “It doesn’t sound bad,” she says, “but sometimes I just can’t accommodate an endless hug, like when I’m shopping and trying to push a shopping cart. So I’ve created the ‘5-4-3 Hug.’ When the hug starts, I start the countdown: 5, 4, 3, 2, 1 and that’s it.” Counting down to anything, such as transitions, is a great tool, she adds.
Beth Sutinis has discovered Tanner’s Tasty Paste toothpaste. She says it comes in chocolate and vanilla flavors versus a minty, harsh or overly sweet/fruity taste. “It’s the only toothpaste with fluoride that my sensory/ADHD kiddo will tolerate,” she says. Gum and chewy fidgets can also work well.
When Judy Kameny had to teach her son how to swallow pills, she started out by getting him to start with some really soft, like very short noodles – “what you’d find in canned soup, cut into very short strands,” she says. “Then we graduated to something round; I used cooked peas. And finally, he was ready for pills. It took a while but it worked.”
Many kitchens feature a monthly calendar posted with all the family’s activities (see Beth and Randall’s crowded schedule on “This Is Us”), but families where the kids have executive function challenges need extra organizing assistance. Schedules and visual prompts can go a long way.
To help organize her son, Maggie Wiggins made a weekly calendar using a poster-size whiteboard. Then, she glued photos to index cards and started Velco’ing them onto it. “Each day, he can see where he’s going, who he’s going with and what kind of clothes he needs to wear for the weather,” she says. “I think it would be extremely useful even without the Velcro’d pictures but a lot of special-needs kids are super visual, so it’s a nice thing to add.” The family sets the board up together on Sunday afternoons, “which gives us a chance to talk about anything unusual coming up.”
When it comes to charting out a daily schedule, Kim Shilakes devised a magnetized morning routine “game” flow chart years ago that could be used for just about anything. She makes them in Word, then attaches them to a posted, magnetized board. When her son completes a step, he moves his magnet along the board. “Even the most basic ones help,” Shilakes says. “But if I make them colorful and ‘fun’ it helps him get through more difficult tasks, like morning chores. It has saved us so much stress in the morning. When he gets stuck I just ask ‘what’s next?’ and it gets him back on track. No nagging, no anger, no meltdowns.”
Renee Shelby Park offers another handy hack: Using dry-erase markers, “we write tooth-brushing instructions on the bathroom mirror and shower and bath washing instructions on the shower wall. We’ve even written on our glass-top kitchen table to encourage eating: five checks earned in five squares for five bites taken.”
Catherine Waelder Weiss’ adult son carries a visual schedule in his pocket with icons or photos representing his schedule for the day. “The images are little circles about an inch, laminated and looped onto a ring, sort of a like a keychain,” she says. “It helps with anxiety and it’s also a comfort item and fiddle object.”
Vikki Smith pairs Alexa with an Apple watch to help with executive function. “We have reminders for everything from brushing teeth to opening the door for the bus wait,” she says. “The Alexa reminders vibrate on the watch. The watch has a breath app to practice [calming] breathing through the day.” She adds that the new versions have a fall alert to call 911 if the wearer doesn’t turn it off, which is great for epilepsy. (A high percentage of autistic kids also have seizures.)
A class hack
When it comes to staying organized for school, Holly Waterfall has found that color-coding binders, folders and textbooks for each subject works well. (For instance, make the math folder, notebook and covered textbook all green.) “We know in a flash which things to grab for each class,” she says. Laurie Romeo White agrees that color-coding works, especially if the same colors are used for each subject year after year.
Prepare them for what’s to come
Familiarity soothes anxiety, especially with special-needs kids. One way of doing this is through social stories. Parents can make a simple book that’s developmentally appropriate for their child that, through words and pictures (drawn, cut out or printed out), shows what’s going to happen, what something new looks like and what rules need to be followed. Amy Tenberge is a “huge fan of social stories and previewing for my girl. We’ve used them to introduce a plane, a movie theater, live performances, dance class, etc.”
Other parents like Donna Sack use YouTube videos to prepare their child for new things: “Watching a video of a place or experience helps to make them a little more familiar.”
Seek out accommodations
TDF Autism Friendly Performances first introduced accommodations on Broadway with “The Lion King” back in 2011. These tweaks include reducing any jarring sounds or lights that shine on the audience, allowing kids to get up and walk around, and offering fidgets in quiet rooms. Now several Broadway shows offer these inclusive performances and TDF works with other theaters across the country to facilitate them. Tickets do go fast, so it’s a good idea to keep an eye on the sites for upcoming shows.
AMC also offers sensory-friendly film screenings where they turn the lights up, turn the sound down, and allow for wandering and even dancing in the aisles.
Sesame Place takes top honors in terms of inclusivity. By offering things like a certified staff, a Ride Accessibility Program (RAP) that matches abilities to the ride, and low sensory parade viewing and dining options, it’s the first theme park in the world to become a Certified Autism Center. “This place rocks!” Melissa Scholl says. “My son is autistic and this was super autism-friendly. We didn’t even have to wait in line for photos with characters!” Matt Gologor adds that there are “designated rooms for ASD kids if they want to take a break from it all. The only issue is that some uniformed folks think it’s just another room to change into and out of bathing suits!”
Major Orlando resorts make big efforts toward inclusivity, as well. Disney World – along with Disneyland in California – offers a Disability Access Service (DAS), intended for kids whose disability prevents them from waiting in a conventional line. Guests are allowed to schedule a return time that is comparable to the current wait time for the attraction. Over at Universal Orlando Resort, there’s Attraction Assistance Pass (AAP). If the posted wait time is less than 30 minutes, guests are sent to an alternative entrance, which is usually the Express Pass line. If the wait time is 30 minutes or more, the attendant will write on the pass what time to return to that attraction.
Legoland’s Hero Pass goes even further; it allows the guest assigned the pass to board immediately with one helper; however, the rest of the group – up to six people – is required to receive a reservation. If the group wants to go together, once a time is set for an attraction, both the pass holder and the rest of the group may return at that point.
Many parents aren’t aware that autistic children may qualify for a disability parking pass, which can enable you to avoid driving around and around with a meltdown-prone child looking for a spot or walking a long distance to your destination. Check with your DMV to see what the procedure is to procure a pass.
Caregivers can show airport personnel a TSA Notification Card to get accommodations for an autistic child, like having the child screened without being separated from his traveling companions. You can also let your airline know in advance if you need accommodations; they might be able to offer things like bulkhead seats, which offer more room to spread out. When you get to the gate, you can also ask about pre-boarding.
Meanwhile, there are those “unofficial” hacks. “My kid only gets on airplanes with his ‘Autism Is My Super Power’ T-shirt,” Melissa Morgenlander says. “It just preempts a lot of unnecessary comments from people” and also elicits more smiles and empathy from strangers.
When Maureen Steinel took her three autistic kids to see Santa at Macy’s last year, she called ahead to find out if special arrangements were offered; they were. “We were able to go through the shorter and faster line, which made it a really good experience,” Steinel says. Her kids “never would have lasted through the long lines. I call ahead now anywhere we go for events to see what options are available regarding accommodations.”
Help them help themselves
Finally, Juliet Ross thinks she may have the best hack of all: “Teaching my son to proudly say he has disabilities and needs x, y and z.” When kids learn to advocate for themselves, they’re on their way toward a brighter adulthood.