By: Jenn Carter, PMSF Regional REP & Mom to PMS Daughter Sloane.
We are the Carters from Texas, and we have been blessed with a life full of adventure for our family. My husband Chris and I work in the adventure recreation industry, and before we had children we were lucky to be able to work and travel together often. Now that we have a family, the kids and I try to tag along whenever possible.
Our eight-year-old daughter, Sloane, has Phelan-McDermid syndrome and was diagnosed at two-years-old, just a few months after little brother Andy (now six) was born. Her diagnosis rocked our world and we spent a few years living in our tight little bubble. The circle of places we went as a family became very small, because going and doing things was just hard.
But living life small is hard too. At some point we decided that we couldn’t let this diagnosis tell us how we were going to live. And even though it was challenging to bring four-year-old Sloane on adventures, we had to shake things up. We decided doing new things was going to become her new normal. It started small; every Saturday morning we were out of the house headed somewhere. We began with going to run errands, outings to the zoo, and short day trips. Then we progressed to weekends away, road trips and our biggest family adventure yet, where we rafted and camped along the Colorado river in Horseshoe Bend, Arizona last summer.
Thankfully, Sloane enjoys riding in the car for long trips, so long as the snacks are flowing. In all of this, we figured out pretty quickly that the biggest factor in trips being successful is Sloane’s ability to get adequate, quality sleep no matter the location. This depends on our preparation and coming equipped with the tools we need to provide her a healthy sleep space. I’m lucky that my sister is a pediatric sleep coach, so Sloane learned healthy sleeping habits from the beginning. But y’all know how Phelan-McDermid syndrome goes, our kids can be wild cards, so we have had our own bumps in her sleep journey. Even still, we have found some products and tricks that have helped her learn to travel and sleep better away from home…and a dose of sleep meds never hurts either!
So, here are our top tips and tricks for adventuring…while still getting sleep, having fun and making all the memories!
Carter Family Top Travel Tips
1. Bring all the snacks! We don’t go anywhere without our trusty snack bag. It is how we keep both kids from getting hangry and Sloane will do just about anything for fruit snacks. I always load up on fun/different snacks for trips, so the novelty of things we don’t usually buy makes it feel special. Kids are allowed snacks pretty much anytime they want.
2. Tie water bottle to the headrest for easy retrieval. Sloane constantly drops her water bottle in the car so I tie it to the headrest of the seat in front of her so I can reach back and use the string to pickup and pass her cup back to her. I use a small carabiner clip on the end so we can quickly unclip her cup, and even a shoelace works for the string!
3. Blackout the windows. Keeping the room dark helps us adjust to local time zones and blocks out distractions. We have travel blackout curtains from Amazon that work well. We sometimes get creative with push pins or painter’s tape to hold them up. A great budget option is to just use heavy duty aluminum foil and painter’s tape! There are even some very cool camping tents available now with blackout technology, we used this one in Horseshoe Bend last summer.
4. Travel Sound Machine. We use a sound machine at home, so having one when we travel helps to keep some of our routine the same while blocking out distracting sounds. We love this one because it’s tiny, has a rechargeable battery that lasts all night, and gets very loud.
5. Have a way to track your kid. Fear of losing Sloane has at times kept me from doing fun things or being able to fully enjoy an experience. Getting her service dog, who is trained to track and find her, has been a big factor in our ability to travel and have adventurous experiences. But aside from having a service dog, there are technologies available to help you keep tabs on your child. For our Disney trip I used an Apple AirTag holder pinned to the inside of her clothes each day, and there are other services and wearable technologies available for tracking your child. Even something as simple as writing your phone number on their arm or using a temporary tattoo of emergency contact info can be life-saving.
6. Have a safe travel bed. This is my absolute top pick for how to travel well! Having a comfortable place for Sloane to sleep, that she recognizes as her own space and keeps her safe allows me to sleep better at night too. When Sloane sleeps, then Mom sleeps and everyone ends up having a better vacation! For years we used a Privacy Pop Tent and air mattress with a raised bumper until she learned to escape. We recently upgraded her to a Safety Sleeper Bed and it has truly been a game changer. *Look for an upcoming product review.*
7. Be flexible and manage expectations. The reality of Phelan-McDermid syndrome is that sometimes things don’t go as we planned. I still wish we could do activities together as a whole family instead of one of us sitting out with Sloane on something she can’t/won’t participate in. But we’ve learned that if we can find something that she enjoys alongside our plans, then everyone is able to find some joy in what we are doing. It can be as simple as allowing her unlimited screen time and snacks at a baseball game or introducing her to new experiences she may enjoy. Last summer we discovered that Sloane loves to throw rocks into water. So now when we go fishing or kayaking, we also find a place where Sloane can sit along the bank and throw rocks to her heart’s content. Sloane may not be able to hike and play like the rest of us, so we are learning to adapt our adventures to include her in a way she enjoys.
We hope these ideas will help your family to get out and experience more adventures together. Yes, it can be hard and sometimes it just doesn’t work. But our best family memories have been made while trying new things and exploring new places, even if we have to laugh through the tears. The reward of learning to LIVE this life with Phelan-McDermid syndrome is worth all the hard moments!
See you out there,
The Carter Family
P.S. Lest you think all our adventures are perfect, let me assure you they are not…I may or may not have had to improvise with brother’s swim trunks when I didn’t pack enough pull-ups on our rafting trip. It’s ok, we can laugh about it now!
