If there’s one thing I’ve become an expert in since becoming a parent of a kid with special needs, it’s how to handle the stress, lows and uh-ohs. These are my go-to tactics:
1. I change the scenery.
This means that if, say, I’ve just had a frustrating conversation with someone at our insurance company about missing payments, I won’t stay at my desk and continue to deal with paperwork and tasks. I’ll head to the living room and catch a few minutes of HGTV, my TV crack. If possible, I’ll take a walk. And if it’s Max who’s stressing me out—say, because he is screeching about something—I’ll rope in my husband to take a turn talking with him and take a breather in another room or, even better, take a walk outside. Changing the location always changes my perspective.
2. I check out baby photos.
No matter what worries are going through my head about Max, it’s hard to stay anxious when I’m flipping through an album of extreme cuteness.
3. I call my mom.
Not so I can tell her what’s upsetting me, because I don’t want her to worry, but just so I can hear her ask me things like, “Have you been getting enough sleep?” and “Did you have a healthy lunch today?” Feeling cared for in that way that only your mom can care for you helps take the edge off your freakout.
4. I de-clutter.
The therapeutic powers of clearing up your desk or reorganizing the playroom sure are potent. One challenge of being a special needs parent is feeling like things are beyond your control—particularly your child’s development. Feeling like you can at least get your stuff under control can bring some peace of mind.
5. I have a carb-protein snack.
Downing something that’s a combo of protein and complex carbs gives me a burst of energy—and with that comes a bit of optimism, too. I like to have a celery stalk filled with a tablespoon of peanut butter and raisins, whole-wheat crackers and cheddar cheese or hummus and carrots.
6. I run cold water over my wrists.
I started doing this in college, when I read that putting your wrists under cold running water can keep you alert because of the pulse points there. It also helps me when stress strikes.
7. I ask my husband to tell me a story.
Reminiscing about funny incidents is always a mood booster. One of our favorites: Dave took toddler Max to the mall during the holiday season, and there was a model standing outside of Abercrombie & Fitch posing for photos with shoppers. Now, Max had pooped and Dave hadn’t had the chance to change him, but Dave wasn’t going to miss the opportunity to have him photographed with a bona fide model. So he handed baby Max over and at first, she was smiling but then she started sniffing suspiciously and when the photographer finally took the photo, she was kind of grimacing and holding Max away from her. Priceless.
8. Two words:
9. I start planning our next family vacation.
It’s distracting, in the best sort of way, and gets me excited about the future—pulling me out of whatever troubling present I’m dealing with.
10. I blog.
It’s been the most cathartic, inspiring and stress-relieving thing for me in my journey as a special needs mom. There’s nothing like connecting with other parents who get it.
Speaking of connecting, going forward I’ll be writing at a new Parents blog, Special Needs Now. I’ll be covering the same content I have here, and I’ll be joined by Lisa Quinones-Fontanez of Atypical Familia and Jamie Pacton. Please stop by, I’d love to see you there.
It’s rare to go on a vacation that manages to be both kid and parent paradise, but that’s exactly what we found on our recent trip to the Florida Keys. We had a whole lot of fun, we met dolphins galore, my husband and I got to relax and we all ate our body weight in key lime pie.
Where we stayed
We visited Hawks Cay, a four-diamond resort in Duck Key that’s midway down the Florida Keys. Surrounded by sparkling aquamarine water so beautiful it almost doesn’t seem real, the resort is situated on 60 acres and feels secluded and lush, with 432 hotel rooms and villas.
Our Premium Lanai room and the view from the back deck. A ten second walk to a gigantic pool = bliss.
Hanging in the lobby, decked out for the holidays. The cheerful doormen/valets—my favorite staffers there—will find you a coconut, if you ask. They will also take your tram-loving son on endless joy rides around the resort.
The resort has five pools, along with a saltwater lagoon which feeds directly from the ocean. Max and Sabrina adored the gigantic Resort Pool, where they’d swim, float and splash for hours—and then insist on going in again at night.
The Resort Pool; a pina colada break; the adults-only Tranquility Pool
Practicing stand-up paddleboarding and kayaking in the saltwater lagoon
At the Indies Club, there’s a Pirate Ship Pool and a playground, complete with an outdoor playset, basketball court, ping-pong table, putting course and sports field. Inside, there’s also a game room for teens
Sabrina snagged a lesson at the Cliff Drysdale Tennis program. Besides private or semi-private lessons, kids and adults can take tennis clinics. Director Michael Stredonsky was both savvy and super-encouraging, and she picked up some good pointers.
Hawks Cay has activities galore for kids and grown-up kids (aka their parents). Daily offerings while we were there included a kickball game, Melted Snowball Toss, Pin the Nose on the Snowman, Water Aerobics, Penguin Bowling, Pool Noodle Race and Basketball Free Throw Contest. Some activities, like Color A Backpack, Paint a Snowflake and a nighttime Glow Party, had small add-on fees. Over at the marina, you can arrange for charter fishing, scuba diving, snorkeling, SNUBA, parasailing, stand-up paddleboarding, boat rentals, kiteboarding and sunset cruises. You can also rent bikes and cruise around the resort. Or you can drop off your kids at the Indies’ Club Island Adventure Camp and chill out at the tranquility pool while your husband goes fishing.
At the Island Adventure Camp the kids did crafts, played games, went swimming and fed the tarpons dockside at the marina. Shout out to the wonderful supervisor Beth Ann, who had experience working with kids with special needs and who couldn’t have been more attentive and caring. Max wanted to take her home.
I don’t think “Learn to be a mermaid” was on Sabrina’s bucket list, but that’s exactly what she did at The Mermaid Academy, held at the the Indies pool. (Boys can learn to be sharks, complete with shark fins). Sabrina slipped into her tail—she had a choice of green, purple, pink or blue—and an instructor helped the kids move around in them. Soon, they were diving for treasure and jumping through hoops. Afterward, Sabrina couldn’t stop talking about it, and I highly suspect she is going to put “mermaid tail” on her birthday present wish list.
Rocking a tail
I think she may have found her calling
One of the most memorable things we all did during our visit (and basically in our entire lives): Dolphin Connection, located at the Hawks Cay marina. It’s been offering education and conservation since 1990, with staff involved in wildlife conservation and research projects. We were treated to Dolphin Discovery, a 45-minute immersion program—as in, educationally and actually being in the water with dolphins. Kids have to be over 4’6 to participate; younger children can do the Dockside Discovery program.
First you learn about dolphins in an outdoor classroom. Our instructor, Katie, explained that a dolphin’s belly button makes it clear that it is a mammal, not a fish; the best way to tell a dolphin’s age is the teeth (they only get one set in life) and how worn their flukes are (the paired, triangular structure at the end of the tail); and that a dolphin’s flipper is similar in structure to a human hand. We also heard a bit about the area; the Florida Keys are home to the only live coral reef in the United States, with more than 6000 marine varieties.
Next we slipped on wetsuits and instructor Jess helped us get up close and personal with bottlenose dolphins. The ones at Dolphin Connection range in age from 10 to 40; our family met Tatum, Calla, Chinook, Hastings and Lucky. The team knew about Max’s special needs ahead of time (there’s a Special Needs Coordinator), and were completely accommodating and welcoming. First we fed the dolphins fish while standing on a platform in the water, stroked their so-smooth skin and watched them leap into the air. And then, we got into the water where we hugged and kissed them, and used hand signals to encourage more jumping.
The trainers all had an amazing rapport with the dolphins. I was tempted to ask if they might want to help train my kids, who are totally bedtime resistant. I guess I could could use some training, too, because I enable them; at night, we hung out around the firepit on the main patio till really late. On a few nights a guitar player sang songs, and it felt so nice to sit there basking in the glow of the fire, all of us relaxed, happy and full of key lime pie.
Where we ate
Hawk’s Cay has four family-friendly restaurants, along with a coffee bar at the Island Time shop that serves Starbucks (phew). We had a memorable dinner courtesy of Ocean, above, the resort’s pretty new Mediterranean-inspired restaurant with plenty of tasty offerings, including Seared Ahi Tuna and Veggie Pappardelle Pasta and a stone-slab-baked Wild Mushroom pizza with goat cheese, Bermuda onions and roasted garlic. We also did the breakfast buffet, a lavish spread with everything from smoked salmon to custom-made omelets.
Outside the resort, we continued our eating adventures with lunch at Fish Tales Market Eatery and Grassy Key Outpost Market & Grill (Brussels Sprout Chips: OMG). Sweet Savannah’s has delicious homemade ice-cream. Many places claim to make the best key lime pie in the world but we found them all delicious, and now I think we have key lime pie running through our veins, so much did we down—even for breakfast one day. (No judgment!)
Because you can never meet too many dolphins, one afternoon we headed out to this nonprofit, founded thirty years ago in Grassy Key. The Dolphin Research Center is home to 24 bottlenose dolphins living in lagoons, along with four California sea lions and birds. It exists so people can learn more about dolphins, care more about dolphins and leave as stewards of the environment. At its College of Marine Mammal Professionals, students can receive a degree in Marine Mammal Behavior, Care, and Training. Located on the ocean, it feels like a resort for dolphins (minus the pina coladas).
Fun fact: This was one of the locations were Flipper was filmed, and some of his descendants live on here. Visitors can meet dolphins through interactive programs; listen in on narrated behavior sessions (topics include Moms & Babies, Dolphin Playtime, New Training and Sea Lion Fun Facts); check out the Secret Lives of Dolphins and other videos in the Dolphin Theater; play in the Sprayground; or take a break in the garden dedicated to veterans (founder Mandy Rodriguez was one). I loved that the center has dedicated special needs programming.
Anywhere you look, there’s a dolphin doing something amazing.
A seal keeps one fin in the water to regulate his body temperature and stay cool
A dolphin plays Picasso, holding a marker and painting a t-shirt for the girl
While we stood on the side, this friendly guy came over—on its own accord—and waved a fin hello to the kids.
We spent a couple of hours exploring here, checking out displays about local wildlife and marine life and hiking the trails, with their labeled trees, flowers and plants and a butterfly meadow. We also stopped by Adderley House, built in 1903 by the first settlers there; it’s composed entirely of tabby, made of burnt seashells. The spartan furniture gave the kids a nice reality check about modern-day amenities.
For yet more meet-ups with local wildlife, we hit Aquarium Encounters. There are touch tanks to explore, tarpons to feed and an array of encounters to choose from including diving and snorkeling with fish, hanging out with stingrays and petting sharks (do not try this at home).
We did the Coral Reef Encounter, an hour-long experience where you snorkel or do a tethered dive with tropical fish and stingrays around a coral reef in a gigantic tank. The staffers there are super-friendly and helpful. When we had issues getting on Max’s wetsuit, dive instructors Bob and Christine jumped in to help. When Max was scared to get in the water, Christine coaxed him in, letting him use a noodle for stability. Sabrina, meanwhile, was having a blast feeding fish to sharks (through a plexiglass wall, of course).
This small nonprofit in Marathon is dedicated to the rehabilitation of sea turtles; in its 29 years of existence, it has released more than 1500 healed turtles back to the sea. Visits start with a talk and slideshow, during which turtle shells are passed around. It was fascinating to see the turtles’ migration patterns; they may be slow, but they sure do get around.
We learned that the 61 turtles in residence on the day of our visit had problems ranging from shell damage from boat collisions and viral tumors that affect some 50 percent of sea turtles around the world. Sadly, internal injuries from ingesting materials such as plastic bags, balloons and hooks are also common. One slide revealed the contents of a turtle’s stomach, including half of a plastic clothespin and part of a chocolate milk carton—yet another sobering reminder to not trash our environment.
The hospital does all kinds of treatments, from giving a turtle insulin to doing blood transfusions. This December, when some 1000-plus young sea turtles washed up on Massachusetts beaches, freezing cold and suffering from hypothermia, the hospital took in 30 of them to nurse back to health.
After the discussion we got a tour of the tanks where the turtles live. The kids fed them green pepper; they also like to eat fish. One picky turtle would eat nothing but lobster tail (sans melted butter, I assume). We were all enchanted by the baby turtles.
After all our adventures, the kids wanted only one thing, and it wasn’t dinner: to go back to the resort and hit the big pool. In the evening, it looked magical, with lights on the surrounding trees. During our final swim, before we checked out, Sabrina leaned down and kissed the water goodbye.
Some images provided by Hawks Cay, Dolphin Connection and Aquarium Encounters. Some activities were complementary, but opinions are my own.
During winter breaks, to keep kids occupied I encourage my clients and my own children to limit screen time and be creative. Children of all ages learn skills—and about their environment—through play activities. Here are some that fill both fun and functional requirements for your child!
1. Dig out the pool noodles.
Lay out the pool noodles as an obstacle course; children can step around and over them. Kids can also play limbo with the noodles or crawl under them in the quadriped (crawling) position. Also, cut in half, pool noodles can be used as balance beams for young kids; work in bare feet to make the task easier.
2. Play Lego copycat.
Use Legos or building blocks to make a creation, then ask your child to duplicate it. This activity can be switched around so that children create models for parents to follow.
3. Play the touch-’n'-guess game.
Grab any two items in your home that are the same—say, a couple of crayons, a pair of toy figurines, salt and pepper shakers—and add one of each to a paper bag. Place the second set in a line in front of your child. Ask her to feel the items in the bag and, without looking, find the matches. This skill, called stereognosis, is valuable. It is the ability to perceive and identify objects by using only the sense of touch—the same one we use when we reach into our purse feel for our lipstick or wallet.
4. Rope ‘em into housework!
Heavy work can be calming. Include children in chores and activities such as moving chairs, picking up and placing dirty clothes into a basket, vacuuming, or sweeping.
5. String up the holiday cards.
Punch holes into holiday cards with a one-hole puncher. Gather up ribbon, string or twine and lace the holes, helping your child do the threading as necessary—a great fine-motor-skill exercise.
6. Make geoboards.
Use Styrofoam as a base and attach golf tees, sticks, small pencils, or hairpins. Encourage kids to push the items into the board or pound them with a toy hammer. Help them add colorful rubber bands to create shapes such as stars and polygons.
7. Create a sensory hideout
You can drape sheets over a couple of chairs, build a hideout from a bunch of boxes, or use a small tent if you have one. Add pillows, blankets, and stuffed animals to give kids that cozy feeling. Also great: Lycra fabric in which kids can roll up and wrap themselves—that gives awesome proprioceptive input. My kids love having a flashlight in their cozy space.
With a little creativity, many activities can be fun and therapeutic. Play with your child and the memories you make together will last a lifetime!
And the best Video of the Year Award goes to…”Ob-La-Di, Ob-La-Da,” as sung by my son and his music therapist, Amanda. You read it here first!
Watching Max sing with her is always a treat. This past year the two of them rocked “Let It Go” and “For The First Time in Forever.” But when she got him to do a Beatles song, well, I melted. It is such a thrill to hear Max belting out a song I grew up with and loved.
As a special needs parent, you often have to give up on dreams that your child will savor the same childhood pleasures that you did. I’m talking about things big (like swimming) and small (holding and licking a lollipop). Early on, this can really bum you out. Eventually, though, you come to understand—and accept—that your child will enjoy stuff in his own way. Or he’ll do different things and have fun, too. Max may not be able to swim, but he’ll walk around the pool in knee-deep water, crouched over and pretending to swim, and that makes him happy. Max may not be able to hold and lick a lollipop because he doesn’t yet have that coordination, but this kid has gotten darn good at clutching a cupcake (chocolate, please).
And so what if Max can’t say all the words in the song? He’s carrying the tune admirably, and he’s a charming performer. So, without further ado, Best Video of the Year. Sorry that Beyoncé was not available to present it.
OK, so technically, this isn’t my child in Target’s Sunday newspaper circular. I happen to have a boy, Max. Who is 12-years-old and who has cerebral palsy, not Down syndrome. The child in the ad is 2-year-old Izzy Bradley of Stillwater, Minnesota.
But you know what? When I see Target including a child with special needs in their ads, I do see my son there—along with other kids who have special needs.
I look at this ad and I see that little girl representing all our children, because it’s still relatively rare for a child with disabilities to appear in ads.
I look at this ad and I see a child looking every bit as cute as any other child. Cute in her own way, just like any child is.
I look at this ad and I see a child looking like she is having a good time—you know, as children like to do. Which is something that people sometimes don’t realize about kids with special needs: They may have more visible challenges than other kids (or, as the case may be, invisible ones), but at heart they are still children with all that kid wonder and sense of fun. Sometimes, people see only the disability. As Izzy’s mom Heather said, “I really appreciate Target’s policy of including [kids with Down syndrome] in their ads. I think it really normalizes Down syndrome and helps people to see we’re really just like any other family.”
I look at this ad and see a child with special needs being included in an organic, natural way, the kind of inclusion parents of kids with special needs yearn for in other parts of life.
I look at this ad and I see true diversity. These days, companies are very conscientious about making sure races of all kinds are represented in ads, but full-fledged diversity means including people of all abilities as well.
I look at this ad and I want to see more, more, more of them.