Tips for Planning a Vacation with A Child Who Has Special Needs

Now’s the time when families start considering and booking vacations for the summer. But for the parents of children with special needs, thinking about a vacation takes a whole other level of consideration and forethought.

Many families want to go on vacation, but some ultimately opt not to because the amount of preparation feels too overwhelming. 

I can completely understand and appreciate that sentiment. But on the flip side, vacationing with your family can provide tremendous benefits. Things like getting away from the daily grind, giving your family a sense of normalcy and creating memories that will last forever.

It does take meticulous planning. But for families who have made it work, they say that it is worth the extra effort to witness the joy on their kids’ faces and experience something new together.

If you’re considering a family vacation, I’d like for families to know just how many resources are available to help navigate the planning process. And that logistically speaking, it is possible for the majority of families to travel with careful planning. So if you’re considering a trip, here are some things to start thinking about:

Tips for Planning a Vacation with a Child Who Has Special Needs

 

1. Utilize Online resources

There are many online resources available to help you with the planning process. The Special Needs Resource Directory has a wealth of information. It covers things like tips for car seats, wheelchairs, and traveling on planes. It also includes links to other organizations’ web sites.

2. Consider Safety

One of the first questions you’ll probably ask yourself is whether or not your child is medically safe to travel. Certainly your doctor is the best place to have this question answered. As a social worker who primarily works with medically complex patients, I can say that the majority of the children I have worked with have been able to travel with careful preparation.

Depending upon how you’re planning to travel, you’ll want to consider things like will your child be able to handle turbulence and the change in air pressure? Will your vehicle hold everything your child needs or do you need to rent a van? Who can travel with you to keep your child safe?

3. Think About Medical support

If you have a child with special needs, it’s comforting to know that your doctor is only a phone call and short trip away. But that changes when you’re traveling. We have found that the majority of doctors are incredibly supportive of families preparing for vacation and during the trip. We have a 24/7 on-call service, called the Physician Priority Link, which can connect a doctor in your vacationing area to a doctor here. They can help answer questions and provide support in an emergency. You’ll also want to think about not just the availability of care at your destination, but also care along your travel route. It’s helpful to know where the other children’s hospitals are located.

4. Gather Documentation

Your pediatrician can help facilitate the process of getting all of the necessary documentation for your trip. For instance, you may need a doctor’s note to bring an unapproved item on a plane. Parents tell me it’s easier if you are flying with a child who has disabilities and/or medical conditions to call TSA directly ( 1-855-787-222) prior to traveling. This will help the TSA anticipate your child’s arrival at the security checkpoint at each airport.

You will also need full documentation of your child’s medications and medical history for quick reference in an emergency. Talk to your medical team and ask how they may assist you. Many teams at Cincinnati Children’s are willing to help and want to know if you are planning a trip. A prior authorization with your primary insurance and/or Medicaid is typically required to make sure that your child’s care and prescriptions will be covered out of the state.

5. Bring Extra Equipment

Always carry extra supplies with you no matter how long you will be gone (an extra g-tube, trachs, syringes, etc). Depending upon your child’s needs, you may need special equipment for the trip. Contact your local durable medical equipment company about your travel needs. Parents may also want to contact an equipment company at your vacation destination before traveling. That way, you can assure that they can provide a needed piece of equipment or the type of supply while away.

This is by no means a comprehensive list of all of the things you’ll need to think about when planning a trip. However, I wanted to give families a place to start, and to give hope that it is possible to get away for a little while. Taking a vacation with a child who has special needs is challenging and requires extra planning, but I have never had a family say the extra effort was not totally worth it.

The Family Resource Center is available by phone during working hours to help you navigate this process at 513-636-7606. If it’s after hours, please email us your questions at specialneeds@cchmc.org.

 

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Suzan DeCicca, LSW

About the Author: Suzan DeCicca, LSW

Suzan DeCicca, LSW, has been a social worker at Cincinnati Children's for over 10 years, and currently works with medically complex inpatients. She has social work experience in advocacy, self-sufficiency, IEPs, juvenile court, individual and family counseling. She is inspired by the remarkably strong, resilient children and families that the center serves and she works hard to make sure resource needs of patients and their families are in place. Suzan is happily married, has a 4-year-old son and two dogs “Bela and Lilah” whom she dearly loves.

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Comments

  1. Juliet June 01, 15:12
    This information is so helpful! Being one of 'those' parents, that never wanted to fly with my special needs daughter, Suzan told me to go and enjoy it!!! It took a while for me to accept that, but we did!! It was absolutely worth it!!! We did call TSA ahead of time, and they were very helpful! We had to Baggie everything, but that wasn't a problem!! TSA great at the airports, they had someone walking with us to help is out!! The airlines boarded us first so we could get situated!! I absolutely agree... Vacations are soooo worth it!!! It gives everyone a much needed break!! It is a lot of planning, we generally drive our mini van, which is always filled to the top, but mostly, we remember everything and we always have extras!! Thank you Suzan for thinking of us, and helping us have a sense of normalcy!!! You are the best!!!
  2. Hi there, I felt great trepidation before we took our son on his first long-haul flight. We had stayed close to home for many years because of the logistics of carry equipment etc. When we did have our first trip and it was a great success I wanted to share that information. Being an ex travel agent I had put a lot of time into researching our travel and felt it was a waste not to share it all. That was when I put together our website www.havewheelchairwilltravel and facebook www.facebook.com/havewheelchairwilltravel to try and give positive "can do" vacation ideas. I recently wrote a blog on what to expect at TSA screenings so families could be better prepared. http://havewheelchairwilltravel.net/expect-airport-security-screening-points/ I also shared the difficulties and positive outcome of flying with our son http://havewheelchairwilltravel.net/experience-flying-qantas/ The website is a work in progress and I continue to add tips like how to prepare your wheelchair for travel, how to book an accessible hotel etc. We hope that it proves useful to families. Kind regards Julie Jones.
  3. Terri Gullison Mitchell June 03, 09:39
    My daughter and I flew Westjet to Alberta a few years ago. They let us board first and took her wheelchair away for us. When we got to Alberta we were the last ones off and the staff walked with us to the baggage area. They were great. BUT........ when we got back to Toronto, we again were the last to deplane. The fellow left the chair and walked away. They had let all the air out of her tires and didn't re-inflate them!! I had to push her up the ramp ( hard enough with inflated tires)and try to maneuver the chair and luggage to the doors by myself. I had to buy new tubes afterwards as well. I was not impressed!