Guest Post: Traveling Abroad with Special Needs Children

Today we have a guest post from Marcela De Vivo. Marcela's son has cerebral palsy, and she offers some insights and tips for traveling abroad with a special needs child. Have you traveled with a child with special needs? We'd love to hear about your experiences!

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My oldest son, Nathan, is six years old, and has severe cerebral palsy. What many people are surprised to learn is that Nathan has traveled to about 10 countries, including England, Thailand, Argentina, Brazil and even the Dominican Republic.

Nathan has always enjoyed every trip, and it has been incredibly beneficial to him from a developmental standpoint. As a parent, I would encourage any family with special needs children to travel as much as possible.

Of course, the first question in your mind is probably a big HOW? How do we manage the logistics of traveling with a non-verbal, non-ambulatory special needs child?

The answer isn't always simple, and what you need to do will be based on the special needs of your child, but let me tell you right now, travel is certainly possible.

Traveling abroad with a special needs child is possible. We’re proof.

Image Courtesy of En.Wikipedia.org

Plan Ahead, Arrive Early

Whenever we travel, we call the airline and let them know we need wheelchair access. We also have our own wheelchair, which makes the process easier and more efficient; if your child needs one, bringing your own wheelchair can be very helpful.

One key note when it comes to traveling with a wheelchair: keep it with you as long as possible. Airlines treat it like luggage if you check it, and it could ultimately end up broken. It happened to us, and it’s not something that you will want to deal with.

We also take the time to let airport security know that we have fluids with us and that we’re traveling with our child’s medication, which, of course, he needs. It’s always taken us a bit more time to go through security, but most people are quite supportive and friendly while helping us through the process. On the rare occasion that we've encountered security or airline staff members that were rude, we've generally said something to management so that they’ll be more prepared in future situations when dealing with children with special needs.

Leave yourself ample time for getting through airport security when traveling with a 

special needs child.

Image Courtesy of Flickr

Ask for Help

Once on the plane, we generally explain to people around us about our son’s needs. Of course, we don’t go into a long drawn out story, but it often helps to give people some information about what’s going on around them.

In many cases, people will offer their assistance and help with basic things – like making room for our child. Typically, we bring a special seat, called a Special Tomato Chair, which makes our son more comfortable during flights, but requires just a little bit of extra room in some cases.

Once the airplane lands, we’re often the first ones off. In some cases, we’re the last ones off. It works either way – we just want to make sure we’re not involved in the general mayhem of a large group of people exiting an airplane.

Consider Your Destination

When you arrive in your destination, it’s important to consider where you are and what you’re going to be doing. For example, when we've visited places like Canada, which really aren't all that much different than home in the United States, we've rented a car. This is helpful since we can take our time and make sure we have everything we need for a day trip.

In other places, we've had to rely on taxis, and we may need to take some special equipment. In general, we simply try to make sure that we have everything our son will need with us. From there, we really just have to go with the flow of travel since everything can’t be completely under our control.

For most people, the most difficult part of traveling with a special needs child is the actual travel, not the day-to-day stuff that occurs when you arrive in your destination. Once you have that figured out, you’re well on your way to a successful trip.

Of course, the information here was personal, and it may not all apply to your child. Nathan has cerebral palsy, so his needs are very different from those of a child with autism, for example. Before you plan a trip, always take your child’s needs into account and talk to your child’s doctor if you’re unsure about health and safety concerns of traveling abroad.

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Marcela De Vivo is a freelance health & wellness writer from the Los Angeles area whose specializes in alternative medicine, sustainability, and special needs advocacy. She works with the California Special Needs Law Group to spread the world about inclusion and offer advice to other parents with special needs children. Marcela keeps a personal blog about her son and their story at www.prayfornathan.org.

Guest Post: On Raising a Special Needs Child - "Welcome to Holland"

For this second in what I plan to be a series of guest posts, Aysha Tapp writes about the challenges and triumphs she faces in raising her son, who has cerebral palsy. It is hard for those of us with "typical" or "normal" children to understand what it's like to know that your child isn't going to develop along the same timeline as your friends' kids. Aysha describes the highs and lows of parenting a child with disabilities and shares a poem at the end that she feels best expresses how her life has changed since the birth of her son.

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Raising a child with a disability is one of the most difficult and most rewarding things a person can ever go through. 

My son is two and has cerebral palsy. He got stuck during birth and lost oxygen. After what seemed like forever, but was probably only 2-3 minutes, the midwives had broken his clavicle and pulled him out. He wasn’t breathing, was a whitish-purple, and had a very weak heartbeat. For the first thirty minutes we did not know if he was even alive. After two days, we were told that, on a scale of 1 to 10, where 1 was completely normal and 10 was in a wheelchair unable to eat or speak, he would be an 8. We were devastated. We had spent nine months preparing to have this perfectly healthy baby boy. My husband dreamed of playing baseball and soccer with him; I dreamed of helping him with his first steps and playing with all of his other friends. All of those dreams came crashing to a halt in a matter of minutes. We felt so alone and devastated. We had friends tell us that “all babies develop on their own time scale,” and it frustrated us. I wanted to scream, “How can you say that?  How can you possibly understand?” It became a white elephant in the room isolating us from our friends, and we knew they were tired of us talking about it. Since then we have worked very hard, through therapies and surgeries, to get him to be able to do the things we were told he would never do. He started eating when he was 2 months, started pulling himself up at 2 years, and can say two or three words as well as saying about 10 in sign language. 

He is still nowhere near “normal” though. We had to get a handicapped sticker for our car because, even though he is only two, and a lot of other parents carry their two-year-olds, he cannot stand or sit on his own, and there IS NO putting him down while I do something else. We had to get a handicapped stroller for him, which looks like a wheelchair but without the giant wheels. As happy we all are that he has it, it’s still one more thing that makes us different, and it’s one more piece of hope gone.

The hardest thing to deal with is the obviousness of his disability as he gets older. When he was a year old it wasn’t so unusual that he wasn't walking yet. At two years, it feels pretty bad. He gets really frustrated when we are around other kids because he wants to be doing the things they are doing, but he can’t. He can’t play on a playground or slide down a slide without my help. He can’t get on a riding toy, or off a riding toy, or continuously on and off a riding toy, without my help. I have to be there for him in order for him to play with anything that isn’t on the floor. It is frustrating for him and frustrating for us as parents.

One of the awesome things is what the brain does in a situation like this. When faced with an injury where parts of the brain are severely damaged, the brain overcompensates in other areas. He is smart - like, really smart. He is testing cognitively as a three year old while his motor skills are stuck at 12 months or less. For example: He figured out how those singing greeting cards work after he intentionally took one apart (he was 16 months at the time). That was annoying. His brain is working to figure things out, but his hands and body won’t do what he wants them to do. He. Gets. So. MAD. So mad. A lot. As his mother, I am not sure how to help him. I don’t want to overcompensate by doing things for him, but at the same time I still want to help him. Where is that line, and have we already crossed it?

As difficult as it can be, I honestly believe people who do not have the experience of having handicapped children are missing something special. They don’t know what it’s like, on top of everything else a normal person does in a day, to go through hours of therapy every day so your child can do a simple task. You learn to celebrate the little things that most children breeze through. When our son drank from a straw for the first time we cheered and just about threw a party!! After three months of intensive therapy, bribing him with milkshakes and other yummy treats, he finally got it, and we could move on to the next thing. It was so beautiful! We have a bottle of champagne set aside for the day he walks on his own, which we probably won’t be opening for a few years, but I know it will happen someday. We have to know he will, because we can’t show him how to doubt.

It’s not easy having a disabled child. You break down, you feel hopeless, you blame yourself, and you isolate yourself from your friends. You get inducted into a new group of people who are thrown together through unfortunate events. When A was first born, someone I knew sent me a poem. It’s the best way I have found for describing what it feels like to be a parent of a disabled child. It still makes me cry. I'd like to share it with you.

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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If you would like to write a guest post for Jessica on Babies, please email Jessica at jshaham (at) gmail (dot) com with your topic. See this post for subjects we'd especially like to see covered and for additional information on guest posting. You retain all rights to your article and may repost or re-publish in other venues if you desire. Posts will be proofread and edited only for minor grammatical and spelling errors or for clarity.