Detailed planning is key to pursuing our joy of traveling
Our trips aren't as spontaneous as they used to be, but that's OK
School is out, and thoughts of summer travel and making family memories are here! Our family has always enjoyed traveling, which is reflected in one of our favorite quotes attributed to St. Augustine: ​​”The world is a book, and those who do not travel read only one page.” Â
We usually try to plan a couple trips in the summer. At the top of our list every year is our family cabin, located at the foot of the Sangre de Cristo mountain range in Colorado. Our family has traveled there since the 1950s, when our grandparents purchased the land. It’s a place to rest, recharge, connect with nature, and make memories.
Before our son, Jake, was diagnosed with two rare genetic disorders — Prader-Willi syndrome (PWS) and neurofibromatosis type 1 — our travel plans were often spontaneous. Now, because of Jake’s PWS symptoms, we’re more deliberate about our planning, carefully considering each detail. We’re still determined to continue traveling, though, so that he can experience the world and make memories with our family.
Along with packing normal travel items, we also need to bring his CPAP machine, distilled water, morning and afternoon snacks, morning and evening medications (any refills must be obtained before the trip), bedtime shots, needles, alcohol wipes, freezer packs, a first-aid kit, and the three stuffed animals he always travels with. We also have to cancel several therapy appointments. Thank goodness we’re past the period of his life when we needed an oxygen concentrator and a heart monitor!Â
Many of our trips involve flying, which we’ve done since Jake was 1. He’s now used to flying, but a few tips have helped us over the years. First, TSA PreCheck, a program of the U.S. Transportation Security Administration, is extremely helpful, allowing us to move through the line at airport security checkpoints quickly and Jake doesn’t have to take off his shoes. The program allows children 17 and younger to join an adult who has TSA PreCheck.
Another tip is that we always ask for preboarding when we check in. This allows us to take our time getting settled in, and Jake gets to talk to the pilots.
For children with PWS, the Prader-Willi Syndrome Association offers some tips for traveling abroad as well. For children with disabilities in general, more resources can be found at TSA Cares and the website A Day in Our Shoes.Â
Jake has been able to travel to many places, such as Hawaii, Mexico, Ireland, and more. We also had a wonderful experience cruising. Many cruise lines offer guests with disabilities some suggestions for a successful adventure.
No matter the mode of travel, we adjust, plan, and learn to be flexible. We stay focused on our desire to share the world with our children so that family memories can fill our souls. Summer, here we come!
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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SP
Thank you for the great tips....
Jessica Patay
It is so inspirational that you are intentional about family trips and explorations DESPITE what is required to make this all possible. Bravo!
MP
Thanks so much for such detailed tips. Love the pragmatic approach you take in doing what needs to be done so that life can go on as normally as it possibly can for your son as well as the whole family. Indeed, my daughter is desperate to be seen as normal and for us to make our summer plans as normal as we can - with this article, I now have a checklist of things to go through before our summer trip - Thank-you Paige!
Joan Allen
I am blessed to know Paige and applaud her continued work to enlighten us all in this disability .
Susan Samuelson
Really good info and ideas
Cristol Barrett O'Loughlin
Kudos to our Raregivers Board Member, Paige Rivard, for spotlighting accessible family travel! So many families are isolated at home - living with the day-to-day realities of long-term caregiving. This article provides an inspiring 'How to' guide for the seemingly impossible idea of family travel with PWS or any rare, chronic or medically complex condition. Paige - your practical advice and specific tips will bring ease into the process of travel. And yes, everyone should have TSA Pre-Check!