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TRAVEL TIPS FOR PARENTS WITH SPECIAL NEEDS

Travel can be a stressful experience.  This can be especially true when traveling with a special needs child.  My husband, two kids, and I are a military family; we live far away from family and friends, so it requires us to embark on such travel experiences quite often.  Additionally, our remote living location has forced us to travel to New England seeking medical care for our daughter Olivia.

Olivia, now 16 months old, was diagnosed with Chromosome 8 deletion this past January. Leading up to her diagnosis, we were taking many trips back and forth to Boston, MA.  Our last adventure, this past October, was done in order for Olivia to receive genetic testing at Boston Children’s Hospital.  Olivia screamed for nearly the entire flight…on both flights of the two-leg trip.  As soon as we landed in Boston, I told my husband I would rather make the 24hr drive than ever get on another plane again!

The bottom line is that travel with a special needs child is never going to be an easy feat, and all you can do is prepare for the challenge. Here are some tips that may help make your travel experience a little less challenging:

  • Check the “Special Services” box when booking your flight online: This will ensure that an airline agent will meet you to assist in boarding and de-boarding the plane in the terminal.
  • Use TSA: TSA now has a program called “TSA Cares.” You can call them 72 hours before your departure time and they will provide passenger support during the security screening process. You can do this by calling 855-787-2227.
  • When to travel: Try to travel during an “off peak” time when it’s not super busy at the terminal and on the plane. Often mid-day during the week or early morning on a weekend are best. I find that late flights can be risky with my kids. Sometimes they will sleep, as expected, but often times they are stimulated wide awake and cranky because they are tired. Book at time when your child is most calm and relaxed, and when you can count on them getting some sleep.
  • Use Airline Lounges: When I have a long layover, I find it more beneficial to use an airport lounge to relax/eat. The entry fee is between $25-$50 per adult, but some lounges offer complimentary access for certain credit card holders. Food and drinks are included at the lounge and they typically have big bathrooms and plenty of space for the stroller and accessories.
  • Use Family Restrooms: All airports have family bathrooms. They’re great because they’re big and have plenty of room for a wheelchair, walker or stroller. I also highly recommend buying disposable changing mats to keep things sanitary!
  • Bring Snacks: Eating is always a distraction for kids. Pack their favorite snacks; airport travel is not a time to be overly concerned with health! Eating is a great way to kill time during layovers
  • Bring things to do: Bring their favorite small toys, books or download some videos on your smartphone. We have an Amazon Prime Video account and it works great as a last resort distraction. We are able to download a bunch of free kids’ shows.
  • Check your bags: Try to check as much luggage as possible. Yes, this can be a bit costly, but in my experience thus far, it’s money well spent. You’ll have your hands full (literally) with kids + accessories. As with the lounge access, some credit cards and frequent flier programs offer free checked bags as an incentive for membership!
  • Protect your Stroller or Wheelchair: Unfortunately, we can’t watch the baggage handler handle our expensive equipment. I would highly recommend that if you are traveling with a special chair or mobile accessory, consider travel insurance in case of any damage.
  • Pack Medication in carry-on: You never want to risk losing critical medication if by some chance your luggage is misplaced. ALWAYS pack your medications in your carry-on. When you pass through security, tell the TSA agent that you have medication and they will custom scan it (liquids, bottles, etc.). *This takes extra time, so adjust your timeline to account for this.

Additionally, airports and airplanes can be very stimulating – full of bright lights, noises, TSA security screening and boisterous crowds.  I recently read about a program called “Wing for Autism/Wings for All” designed to support families of children with special needs.  During this event your child will be able to (1) participate in the check-in process, (2) TSA security screening, (3) wait in the boarding area, (4) boarding the aircraft and (5) exiting the aircraft. Olivia likes structure and being familiar with her environment, so I think this would be a great experience for her/us. You can visit www.thearc.org to find out when there will be a “Practice Day” hosted near you.

References:

www.thearc.org

www.specialneedstravelmom.com

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.