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Lead by Example

How one mom pushes her comfort zone, while teaching her daughter to do the same

By Jennifer Allen
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There are a lot of disabled kids in our area. I know this because we see them in the waiting room at physical therapy and in the halls of the hospital. I know there are a lot of people using our orthotist and specialists because of the wait lists to be seen. Yet, in our five years of living here, I have only once ever seen a disabled child out in public. That was at an Easter Egg hunt that was designed for people with special needs.

When I found a mom in one of my Facebook parent groups who said a few of her trips this year included a cruise, Aruba, Mexico, and Disney, plus Paris and Greece in the past, I needed to know more!

Meet Terri. Terri is mom to Rebecca, now 15 years old. Rebecca has Cerebral Palsy, epilepsy, and neuro cognitive disorder. She is mobile, and they travel with a wheelchair or mobility device. Terri’s husband works in the airline industry, so they’ve always been big travelers. Of course, travel changed when Rebecca came along, but it hasn’t stopped. As Rebecca gets older, they’ve been able to travel more and more. Here’s what Terri had to say!

Traveling with a child with a disability can seem overwhelming. Tell me about how you got started.

My husband and I traveled to get away. As Rebecca got older, she wanted to know why she wasn’t going.

We started small, and then grew into bigger, longer vacations. We began with coming down to Mexico for a couple of days and trying it out for a couple of days. My mother came along so we had extra hands if we needed them. We’ve done the disney thing. That was a big family trip with my whole side of the family. That was a week long thing. We had tried Disneyland for a day the previous year, but it didn’t work. She didn’t like the rides. Positive peer pressure from cousins on the second trip made a lot of difference

We do disney now, quite often. She’s definitely a sensory seeking child, so the rides work much better for her than other things. As she got older, she got more stable in where she was with her challenges and what we knew she could and couldn’t do.

In the beginning, our travels were medical-based: how far away from the United States and our own medical care did we want to be?

The more comfortable we got, the farther we went.

Have you always traveled this much? How does travel look different than before having a child with a disability, and what have you found helpful?

In the last couple of years we’ve hit our peak and we’re actually traveling more. We’re at a point in our careers where financially we’re able to make things happen easier. We do a combination of family oriented trips, and trips where he and I get away, or a boys trip, or girls trip. Because my husband’s in the airline industry, we’re often traveling on standby. That means what should’ve been a five hour day can turn into a 20 hour day, which is hard for the neurodivergent part.

We try to be smart about our traveling. We take our big family vacation the very first week they get out of school, so we’re ahead of the vacation curve. Things like that, that over the years we’ve planned for.

There are more and more resources available. When we went to Greece recently, I researched and found a private tour group that had a wheelchair accessible van, they picked us up from the hotel and went at our pace and met our needs.

All inclusive resorts can be so accommodating. Everybody’s always been super friendly and accommodating. We utilize kids clubs and just explain our situation. Kids who have food allergies, when you walk into a restaurant the fist thing they do is ask you if anyone has any food needs. We’ve done cruises and it’s the same thing. They’re always very accommodating and ask about needs.

We’ve had similar experiences. It seems that even where accessibility may be lacking, it’s the people who make the biggest difference in inclusion. It sounds like you’ve had a lot of great experiences where people work to make things go smoothly.

Have you ever gotten stuck?

Paris was our first real international trip and it was hard with mobility needs with all of the stairs and trains and uneven surfaces. If we did it again, we would get a private vehicle or use a larger rental.

What did you think would be hardest about traveling with special needs, and what has actually been hardest?

We thought the hardest thing was going to be if she had a medical need. We’ve had one or two little things, but similar to what other families who travel a lot will experience with their kids.

When we’re going to some place new I do check out forums or research the best hospitals and the quickest and easiest ways to get back, but it’s never been an issue.

 

Incontinence has actually been the hardest – calling the front desk for a clogged toilet or the trash taken out takes getting used to. We’ve never had a big thing.

That’s great! Are there any other obstacles that you’ve encountered?

We recently got a new wheelchair and we were traveling this summer. We learned a lesson with the new chair: we should have practiced taking it apart and putting it together. Every leg of the flight, the airline managed to bend parts, and we didn’t have anything with us to fix it. Once we got to the hotel we asked the maintenance staff for tools to put the chair back together. Now we know to travel with tools and to bring a bag for the chair parts that you carry with you on the plane. Live and learn – you manage.

Do you have a favorite location that you would recommend?

I think it’s going to be somewhat dependent on the child’s needs.

Disney is a favorite. There’s so much stuff you can rent – even major stuff like hoyer lifts and oxygen. There’s pretty much nothing you can’t get delivered to your hotel or rental. Even if you can’t transfer from your wheelchair, you can get private transportation to meet your needs. Even if you don’t do Disney, navigating Orlando is easy.

If you’re doing a resort, high rise style resorts are more compact, as opposed to spread out. There can be a lot of distance to cover in a spread out resort, so high rises are easier for getting from place to place.

Reach out to people and they are often accommodating.

Cruises could be a good way to start, if your child’s not an eloper. If it’s more mobility challenges and food allergies, a cruise would be great. You see lots of people with scooters and wheelchairs.

I’ve always wondered about cruises. What about the excursions – are there any accessible options?

We haven’t done a lot of excursions because we enjoy relaxing on the cruise.

A lot of seniors travel on cruises, so just look for the excursions that are mobility friendly. There are a lot of private tours available, and because so many people have needed accessible tours before you, you can get a good private tour by referral. This is great so you don’t get stuck in a group with a child in a meltdown.

If you could say one thing to parents who haven’t traveled because of their child’s needs, what would it be?

Start small and give it a try. Even if it’s just looking at a 2-3 hour drive from your home and trying that comfort level first. Then build up from there.

A lot of people think flying is a big obstacle, but there’s TSA cares, and a lot of airlines will do special practice runs or disability days. Research those things. There are so many resources that people don’t know exist.

That’s such a good point. There are so many tools to help. How do you find resources?

Google accessible travel groups. Facebook alone has plenty of options. Even in regular travel groups (search things like families that love to traveltraveling with kids), because the groups are so large, you’ll find someone with needs like yours. Just general travel pages that are big enough in numbers, there are going to be a few people who have to deal with the special needs aspects of traveling.

That’s such a good reminder! We’re not alone in this. There are loads of people who have gone before us and who have already figured out the big things. My kid isn’t the first kid in a wheelchair, or with continence issues, or with dietary needs, or with behavioral health issues. We don’t need to figure everything out on our own – we just need to find the people who have gone before!

It’s more an issue of parent comfort – not the kid. Travel is getting outside of a comfort zone.

Rebecca loves her week at camp, but I’ve encountered parents who say, “Oh, they would never be ok at a camp.” Why not? A special needs camp is literally made for them. They meet every need and have medical staff on hand. It’s meant for them. It’s the parents who need to step outside of their comfort zones.

We wanted to give our child as many experiences as everyone else has. Travel is an important part of our life and we want her to be able to experience that as well.

Anything else that you want to mention?

Give it a try! Special needs parents push their kids to try things and move outside their comfort zone, so why should we as parents not do the same thing?

tmstewar2@aol.com

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