Special Needs Archives - Mom's Guide To Travel

Sep 12 2012

Believe in Tomorrow Makes Travel Possible for Cancer Families

Just when I resided to put the travel part of our lives on indefinite hold, I learned about Believe in Tomorrow from our hospital social worker. They make travel possible for families with a critically-ill child.

My life has changed dramatically since finding out that my four-year-old has leukemia. Time moves a little differently – every moment is a bit more premeditated. I’ve slowed down, opened my eyes noticeably wider, and backed away from moving at the speed of light. I try my best not to plan for more than just a day since I don’t know what to expect tomorrow. Travel status updates are less frequent – we keep most of our activities close to home. Our new medical status created a shift in behavior, especially as it pertains to planning trips. Any outings that are on my books were things that were there for months, pre-diagnosis – commitments I want to keep just to maintain a little bit of sanity. But I haven’t added anything new.

To say that our travel wings have been clipped is an understatement. We are a family that loves to be on the go. My husband and I are spontaneous and our kids enjoy going with the wind. As we go through this intense part of my son’s therapy, the “how do I travel with a child with cancer” question keeps popping up in my mind. It’s accompanied by when can we travel, where can we all go? So many uncertainties and very few definitives. What we do know is that we take things day by day and appreciate every 24 hours.

I appreciate every person in my life that helps make the journey a little easier. And I applaud every organization that works to bring extra joy and happiness to the life of a child battling cancer.

I spoke at length with Lindsay Brown, assistant to the COO at Believe in Tomorrow. She chatted with me about the hospital housing and respite housing program that BIT provides. Aside from the impact it could have on our life, I was curious about the impact the organization has on the lives of the other 300 families they work with.

The housing program first began in 1986 and has, over the years, provided over 560,000 individual overnight hospital and respite accommodations to families with critically ill children. Their hospital housing program provides a “home-away-from-home” to families worldwide who travel to John Hopkins hospital for a child’s medical treatment. They were the first to establish the concept of pediatric respite housing in the United States, providing families with a relaxing escape from the stressful routine of medical treatments. What a gift. Their houses by the water in Ocean City, MD and Fenwick, DE as well as their homes in the mountains of Western MD and North Carolina are designed to help families reconnect, create new memories, and provide a peaceful setting to help aid in the healing process.

I can identify with that.

Donating to a non-profit is a very personal decision for individuals. We’re all motivated by various reasons. What I like most about Believe in Tomorrow is that you know exactly how the money is being appropriated – 93% of every dollar directly supports their programs. If you’re interested in donating to the organization and making a difference in a child’s life, you can do so here. They’re answering the “where can I travel with my child” question for cancer families. A donation from you helps with the “how?”

Photos courtesy of Believe in Tomorrow.

Apr 29 2012

The Anti Family Travel Post

It’s 4:50 in the morning and I’m holding my 4 year old as I type this post. His autism has been rearing its ugly little head for the past 3 hours. He can’t sleep. The soothing music and melatonin don’t seem to be working. I’m annoyed. That might sound crazy to some but can’t you tell, I’m cranky. All I want to do is sleep but that’s currently not an option. Thank goodness my 8 year old is slumbering peacefully – at least someone’s getting some rest in here. But then he’ll wake up in the middle of my catching-up on sleep. And my husband is away, doing what I’m supposed to be doing…traveling..alone! Am I bitter? Yes. Spoiled? Yes. Witchy? Yes. And it’s the perfect time for me to reflect. And just to prepare you, I’m not reflecting on the Mickey Mouse-laced memories of our recent family vacation.

I realize that my love for traveling has taken on a different meaning. The basics are still the same – going to a new destination or discovering a new restaurant in a familiar city, meeting new people, forging new experiences, creating lasting memories. But it also serves as a bit of escapism. Escapism from the reality of our lives. What we deal with in this crazy world of autism is a struggle. If it’s not behavior or medical issues, it’s insurance and school battles. It’s a constant up and down, a forced positivity in the face of much adversity. It’s a breast stroke through muddy water. It’s our life.

On the outside looking in, people think “Oh, you’re lucky. You’re always traveling.” I wouldn’t say “always” but maybe more than the average Jill. And I wouldn’t say “lucky” but maybe, blessed. It ain’t all peaches and cream over here. It’s work! Internally and externally. It’s late nights and sleepless ones too. It’s work obsession and constant reminders to stay away from ill-placed comparisons. It’s a battle with the whole work-life-balance equation. It’s a jockeying for me-time. It’s a consistent “figuring it out”, much the same as with my son’s autism.

This post may be all over the place but that’s pretty consistent with everything else. I like traveling with my kids but I love traveling without them. And my husband for that matter too. I’m just keeping it real. My love for travel existed way before any of them did in my life. Most moms would never admit such a thing. Oh well, I’m not most moms. I’m just me. My kids are at the age and point in their development where family vacations are for their pleasure. It’s not a vacation for me. Yes, I enjoy making the plans, booking the trip, negotiating deals, spending time, and putting smiles on their faces amongst the laborious picture-taking, editing, writing, budgeting, tantrum-managing and “what about me?” spousal pleas. But it’s much the same of what I do when I’m not on the road with the family. Work.

When I get an invitation to take a trip without family, guess what, I’m jumping for joy. I don’t have to figure out anew how to travel with autism, how to adjust for certain situations although I have to admit that my son has been pretty wonderful. He’s been a challenge but he hasn’t been impossible, therefore we do continue to make family travel happen. I know many families dealing with autism skip the family vacation thing altogether and I feel for them because I understand.

Although I don’t publicize traveling with autism constantly, we do. Every trip, every day. Whether we’re traveling around the corner or traveling around the country, autism is a co-passenger. Hopefully, I’ll get to a place in my writing where I’m more transparent about our struggles so that I can help other families living with autism who may be discouraged to travel. I struggle with that. It forces me to dig deeper beneath my surface, something I don’t have to do when I’m happily traveling alone.

Jul 21 2011

Family Travel To The Caribbean with Special Needs

Our family travel for the past couple of years has been limited to the United States. However, we knew that we wanted our first family trip to be to the Caribbean.

Our recent trip to the Cayman Islands was our first overseas family vacation since my 3 y.o. was diagnosed with PDD. I’ve come to a few conclusions:

Family vacations are designed for taking a “break” from the hustle and bustle – to relax, enjoy, and explore new things together.

When you have a child with special needs, it’s important that you schedule those breaks periodically. However, before you make your travel plans, be sure to identify those elements of your vacation that will allow you to enjoy yourself more.

Understand that a happy child makes for a happy mom.

Every child with special needs is unique. And what makes them happy, only mom and dad knows. Overall, I’ve found that it’s best to keep the vacation simple. Our family travel to the Caribbean made this more feasible.

Managing expectations is key.

Have you ever heard of the term K.I.S.S? It means “keep it simple stupid.” My acting coach would shout this at us all the time, to remind us to not make things more difficult than they need be or over-think the situation.

I do my best to apply this same philosophy to my family travel lifestyle.

Here are some lessons that I’ve learned:

1. Vacation/Apartment homes/Villas work better for my family than hotels.

Usually these living arrangements have stoves and full-sized refrigerators, ideal for cooking restricted meals.
Vacation homes and villas have that valuable extra space for “letting loose” and not disturbing next-door neighbors.

2. Traveling in a non-peak/low traffic off-season.

Besides potentially lower prices, less people and smaller crowds are always a positive.
Employees may be willing to do more for you, and give you more specialized attention.

3. Rent your own vehicle vs. dealing with the hassle of tour buses and shuttles.

My three year old loves trains, vans, and big buses but I love that we can pick up and leave on our own schedule, specifically during nap time and general melt-downs.
By being in your own space, you can limit the number of strangers and noises around your child.

4. Find a local grocery store as soon as you can.

Family Travel To The caribbean — Shopping at Foster’s Grocery Store

Research where a store may be located in conjunction with where you’ll be staying. You can decide what foods/snacks you’ll need to carry with you in order to keep your child happy and healthy while you’re away from home.

5. Plan excursions strategically.

If you have another child who may be willing and able to do activities that your other child (special needs or not) isn’t able to do, and If you are traveling with your spouse or another adult, split up for activities and don’t feel guilty about it. Do what you can with each child and enjoy whatever it is that you’re doing.
If your child wants to just play in the water either at the pool or on the beach, save your time, breath, and money and let them. Make the best out of it and perhaps return to the destination without your child(ren) to do all the site-seeing and exploration that you had planned.

6. Plan your vacation for 5-7 days at a time in a new and unfamiliar destination.

Take things slow when you’re just starting out traveling with your special needs child. Our children thrive in routines. When we change up the routine, they have a tendency to display more behavioral issues.

We were mindful to let our son take the lead, adjusting where we needed to.

Bottom Line: Know your child’s likes, dislikes, comforts, discomforts and work with them, irrespective of your idea of what the ultimate family vacation looks like. Many times we plan itineraries out in our heads (or on paper) that are conducive to active adults.

You may find that the ultimate itinerary for your child is one filled with plenty of breaks and overall simplicity.

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