Someone told me the other day how traveling with their special needs child just doesn’t work. They had tried a family vacation once and it was horrible; their child was unhappy the entire time, which made it hard for the whole family. I’ve heard this from many parents, and honestly, after our first couple of trips I may have been heard saying the same things. Now my daughter loves to travel; she smiles when she hears the jet engine start up at take off, enjoys exploring new places and can’t wait to share her trips with everyone when we come home.
How did we get from excruciating to exciting? We started small and dreamed big.
If the big Disney vacation is your first trip out, it’s sad to say but unless you live nearby, I can almost guarantee it will end in disappointment. Set yourself up for success and take some practice runs to build up to that. Your child is not used to all of the changes, noise, etc that a big trip involves, and you need an opportunity to consider what traveling with your special needs child looks like. Practice runs give you some experience about what your family needs for a successful trip, and helps your child become more comfortable getting out.
To get started, go somewhere no more than a couple of hours away for a night or weekend away. Your traveling with a safety net; you can come home early if you need to, and you’ll be familiar with things available to you – pharmacies, restaurants, etc. Just keep your expectations in check and go with the flow.
Our first trip away was to a local beach – and most of that weekend away was spent in our hotel room. My special needs daughter was overwhelmed by all of the change and wanted 100% peace and quiet. We stayed in the room and couldn’t watch a movie or even talk, let alone go out and do anything. Super fun. Fortunately it wasn’t an expensive trip and we did see the beach… a little.
Lessons learned. On our next trip we reserved a 1 bedroom suite with a balcony; V would have her own space, and if I had to spend the whole weekend in the room, I would at least enjoy the view. Booking this off season made it more affordable and less overwhelming. This trip was much more enjoyable – we actually left the hotel room!
The moral of the story? It gets better!
Every trip since has gotten easier as we’ve learned what works for our family, and as V has become more comfortable with change and new environments. We’ve worked our way up to 8 hour flights and full days out on adventures. At the same time we have learned how to manage expectations. Vacations don’t look like they did before having a special needs child; we take things a little slower, book a room with amenities that make things more enjoyable, and take into consideration that we don’t have to see everything. Maintaining an attitude of adventure and keeping things flexible means everyone has more fun.
10 Comments
Hi,
This blog resonates with me as we have travelled the world with our daughter who has a very rare chromosomal disorder. Several years ago I wrote an article for the Unique Chromosome Support gp about how it can be done. Like you we break the trip up and have stop overs for the night when we are travelling long distances, always book an apartment with at least one bedroom, let her carry her favourite toy even though she is now 26 and try to get accommodation close the centre of each city so each day we are limiting the amount of travel she has to do. Yes we have had melt downs that have lasted for several hours, one classic was in Montmartre Paris where she screamed and self mutilated for over an hour all because we would not buy her a toy. We did not give in as we did not want to set a precedent for the rest of the trip. Eventually she settled and knew that she could not get everything she saw. We even get medication from the dr to travel on the plane in case she has a melt down in mid air. In the long run the angst and preparation is worth it as she has become more worldly, understands appropriate behaviour in the community and has something to tell people about. Yes we get stares, she has screaming episodes and can be unco-operative but hey you are on holidays and no one knows you so who cares. Just give it ago.
I have been looking to connect with someone who has done international travel with a special needs child. My son is 9 and has mild cerebral palsy, epilepsy, and a VP shunt to control his hydrocephalus. He doesn’t have many seizures and I have medicine to control them. We have been very fortunate with his shunt but there isn’t much warning when it stops working. I’m wondering if you have had to be concerned about hospital stays and doctors that can treat your child’s medical needs while traveling internationally. I’m not sure where to start. I would appreciate any help or advice you might have! Thank you.
Our daughter is very medically fragile. She is 4.5 ft long & 60 pounds. We don’t have a handicap accessible van so she rides in a special need car seat. Since her wheel chair doesn’t fold & barely fits in the back of our mini van, my husband lifts her out of her chair & puts her in her car seat, then lifts her heavy chair with many extras on it, into the van. I am wondering if there is a site for used equipment. We purchased a special need stroller that folds, to make it easier to go out & about. It didn’t work for her & we had to spend $65 to send it back. I have seen 1 site but most things were very expensive. When our daughter out grows or doesn’t need equipment we always donate it. A stroller/wheel chair that folds would be a big benefit. A regular plain wheel chair won’t work since she doesn’t have trunk control. Any suggestions would be appreiciated.
Hi Ginny!
I totally understand! My daughter is a little smaller than yours, but we do the same thing. Getting in and out of the car can be quite an ordeal. My daughter can’t sit in a regular wheelchair either, but we’ve had a Convaid Cruiser for the last couple of years and it’s worked really well for her. It folds up small enough to fit in the trunk of my car – I’ve been meaning to make a video! The Cruiser has a set recline position, which works for my kid, but yours might need something more adjustable. I’ve been impressed with the quality of our Convaid. We purchased ours through AdaptiveMall.com. They have physical therapists who you can call and will help you figure out which stroller would work best for your child, they had the lowest price I found on our stroller, and there’s no restocking fee, but you do have to pay a shipping fee.
About finding a site for used equipment…I don’t have experience with one, but I do know of a couple of people who collect used equipment and give it to others who need it in the Seattle area. My husband and I talk about starting one, but never have the time. Where are you located?
Happy New Year to you!
Karin
DYLAN my grandson 9 years old. Has GLUT 1. SD. ALONG WITH a number of others disorders..
We were going to fly to HOUSTON , TX. To a GLUT 1 Conferance in JULY 2013 .. The day we were to leave he had a grand mall … This was at 7:00 am. It was a bad one had to call 911 !!!!
He recovered by 2:00 pm missed the conference …….We were also going to go from HOUSTON
TO visit my daughter in PIQUA, KS. So we tried again from LONG BEACH,CA. (Dylan n mom
June lives in WHITTIER ,CA.). Long story short he was ok till we got on the plane? He wanted to set with both Bam n Mon the seating was only 2 people ,,,Nice changed seats but he still was not happy
So they had to leave the plane it was not good.!!!!!!
He flew once before from LONG BEACH,CA to Portland,OR in 2010 He has no fear , Just Baffled ???……?…. Thanks for listening BAMMA JO
So sorry for your experiences – it sounds like Dylan has a great family to support him. Hang in there!
I enjoyed your article on traveling with special needs child. I also have a daughter who is eleven, and has special needs. She is our youngest of four girls. We have learned about traveling with her we take frequent breaks because she gets car sick. We plan our trips in advance as much as we can. We also try to lessen her anxiety by telling her exactly where we are going.
Thanks for sharing your great tips! Talking about the trip in advance is a great piece of advice, it really helps with the transitions. Here’s to many more adventures!
Nice article
I can’t imagine not taking our special daughter We have 4 kids and our special girl it 3rd. When she is happy and looks like she is enjoying herself it makes me feel 200% happier just knowing that. I want her to experience all that she can
Thanks Karen, me too!