Traveling with a Special Needs Child

My family is quite big, my husband and I have four older children as well as three younger ones, everyone always has a full schedule and we rarely have time to sit as a family, so vacations have been an important part of our family bonding time. Day-to-day we are busy with work, therapy, school, and appointments so vacations are a time of coming together and just being a family without distractions. But let’s be honest: traveling is exhausting under the best of circumstances. From making plans to completing the journey, it can be a challenge to keep your sanity even when you’re on a “relaxing” vacation. And when you’re a parent of a child with special needs, like my son Noah, finding the easiest and most accessible route to getting where you’re going can be that much more difficult.

Some Personal Experiences

My family has gained travel confidence over the years after traveling to destinations within an easy drive of home, mainly the MAS-ICNA Conventions in our hometown of Chicago every December. For the past three years (pre-Covid and again in 2021) we book a three- or five-night stay at one of the hotels near the convention location. There were/are a few reasons why I chose this as our family’s vacation starting point. 

First, it is an Islamic environment and allowed me to get a break from daily household duties and as Noah’s primary caregiver to reconnect spiritually while my children were also in “classes” in a safe and fun environment. But most importantly, because of MUHSEN accommodation, Noah would be in a special needs classroom environment where volunteers with experience caring for people with various disabilities would watch over him and provide appropriate activities and quiet space for him when needed. 

This also allowed Noah to gain an understanding that vacation was just temporary while also increasing his flexibility from the expected routine. It was not easy at first. He would often become upset and cry to go home. We would explain that we were unable to at that moment but would on so-and-so day. Noah also acted out with certain behaviors like refusals and tantrums so we empathized with how hard this was and talked him through them. We always kept him engaged and created a calming yet fun environment once back in the hotel room. After three years, he was able to recognize that the “room” was our home-away-from-home for the time being. Now, whenever he needs a break on vacation, he will request “Let’s go back to the room.”

Last year right before school started up again, we decided that we needed a more fun experience and booked a five-day trip to Lake Geneva. We all (except for my husband) love being in the water so the Timberridge Lodge and Waterpark was the chosen destination. So many great memories were made there and Noah loves to watch the videos of him splashing, sliding, tubing, and having fun with everyone.

This spring we undertook a vacation as a family to Washington, D.C. It was three and a half days of travel which started with an 11-hour car ride. Noah has autism and Sensory Processing Disorder. He finds a great deal of comfort being home because the environment is controlled and we understand his needs. Sitting for that length of time in a car was probably one of the biggest challenges we faced traveling. But we were able to accomplish it and much more. I have learned that with planning and research, wonderful family memories can be made.

Be Prepared and Communicate

If parents of special needs kids had a motto, it would be “Be Prepared and Communicate with Everyone!”  We always have to be ready for any scenario and never more so than when we travel with them. With last-minute rushing, essential items are often left behind. This may mean you’ll get less than pleasant facilities or experience long, unnecessary lines. I can not emphasize enough the importance of good communication with all service providers. This makes for much smoother travels. Stress can flare up symptoms of your child’s disability or illness. Planning ahead is critical and it’s the key ingredient in making your trip an enjoyable, painless experience. And children with sensory or emotional triggers will be subject to less stress and prepared for more fun.   

First and foremost, choose a destination that your entire family, especially your special needs child, will be physically and emotionally comfortable with. Don’t set unrealistic expectations. Be honest with your limitations, those of your child, and your travel companions. Keep it real and fun. Take time for careful planning and discuss things with the whole family first.

Three to four weeks before the travel date, I create a columned checklist of what to bring on the trip for the entire family. Two weeks before the trip, I pull out the suitcases and start to pack some items.  As items enter the suitcase, they are checked off the list. 

Plan your Itinerary. Do your research. Call places in advance to ask about or request any necessary accommodations you or your child may need. Do an internet search on the surrounding area to make sure that there are places to eat and things to do that can include your child. The last thing you want is a child watching everyone else have fun.

When choosing a hotel, call the hotel directly to make reservations. Remember to maximize your child’s independence and sense of security away from home and think about details that can be arranged in advance.

• Ask very specific questions about the facility where you’re staying. 
• Request a room that is on the main floor or near the elevator to minimize the distance you have to travel especially if your child has to go on their crutches or braces. 
• Some economy hotels don’t offer general bellman services, but if you need the accommodation, they’re usually happy to help if you ask. 
• Be sure to specify the accommodations you or your child will need — whether it's wheelchair accessibility or shower grab bars. 
• Check amenities (hair dryer, iron, etc.) provided for you at your hotel so you do not have to overpack.
• Some hotels have photos on their website of their rooms. If not, ask if they will measure some doorways for you or take digital photos and email them to you. If they want your business, they’ll do it. 
• Find out if the list of amenities includes assistance animals, if appropriate, even if they don’t allow pets. Explain to them your child’s situation. 
• Find out about their services if your child is deaf or hard of hearing, in terms of phone call alerts and wake-up alarms. 
• There are many of them that can provide equipment like shower chairs, accessible beds that are closer to the ground, or even hospital beds. 
• Worried the 17-19” toilet height won’t accommodate? Get measurements. Ask if the hotel has a raised commode seat if it’s too low or bring your own commode chair. Many older hotels have tried, to no avail, to retrofit themselves to be accessible, but make sure they’ve done it the way you and your child need, not just for your caregiving, but also so your child can be the most independent they can be. It might even be good to bring a portable, raised commode lid (use double-sided Velcro or tape to secure to the toilet) that’s easy to clean and store in your suitcase or car trunk. It might be good to have one anyway for those yucky gas station bathrooms.

If you are flying for vacation, there are important details to keep in mind, such as:

• Explain to your travel agent or ticket agent that you have a special needs child and need to be seated up front and near the bathrooms of the plane. 
• Research and book an airline that had a disabled restroom on board, these restrooms are significantly larger than a regular airline restroom and allow enough room (just) for a parent or care giver to assist. 
• Request one of the first seats in coach or a bulkhead aisle seat. This is the easiest seat to get in and out of and has the most leg room, particularly if you can’t stand well or use bulky leg braces and crutches. 
• Airlines need specific information when booking with a wheelchair and it saves time and multiple phone calls if you can have it at the ready. They usually need to know the dimensions of the wheelchair; whether it is manual or electric; the battery type for electric chairs and whether it is a foldable manual chair.  
• Make sure onboard meals are friendly to any allergies or specific dietary needs your child has as well.

When waiting for the flight to board, there are some steps you can take to minimize confusion. 

• Tell the agent(s) at the gate that you need to be seated first or last (depending on which is best for your child) because of your child’s disability. 
• Once seated, inform all flight attendants on the plane about your child. The more they know, the better they are to help, if needed.

When we travel by vehicle, there are some helpful tips to keep in mind.

• I always have a responsible child sit in the back next to my son so  they can assist with whatever Noah needs. 
• I have everything at my fingertips that he will need during the ride. 
• Stop for a few minutes every hour or two to stretch out, whether your child uses a wheelchair, braces, or needs a breather to take medications or go to the restroom. 
• Get out of the car, stretch, and wiggle around a little. Staying in any one position too long will make a child’s limbs become stiff, increasing pain or aggravating any spastic conditions. 
• Plan your seating strategy. Does your child need an extra cushion, neck cushion, lumbar pillow, blankets ear plugs, or blackout mask (to avoid overstimulation by traffic lights, noise, and road construction) to stay comfortable?

A “goody bag” is a must no matter how you travel. It should include:

• I make sure to have a charger for phones, snacks, water, his favorite toys, and a brand new small toy that will excite him. 
• I keep this bag on the floor in the front seat with me in the car and at my feet. 
• Extra clothing, socks, and shoes should also be handy to stay fresh on a long, hot road trip is important, too. Not feeling fresh makes a child, particularly one with sensory issues, a little frantic. 

Once at the hotel, check out the accommodations. 

• Be sure all of the requests you have made have been fulfilled.
• If you find the hotel bed uncomfortable, ask for more pillows. Hotels also do have cribs. 
• Can’t figure out the thermostat and need more blankets? Just ask! You and your child deserve what you need. 
• If the firm mattress is too hard on your child’s sensitive back, you could go to a nearby discount store and buy a foam “egg crate” mattress pad to minimize pressure sores. The added comfort is worth it. Because it’s cheap, you can leave it behind or roll it up and take it with you. They are easy and make light packing.

Be Practical

An important question to ask is how much activity can you or your child realistically take? It’s natural to want to see and do it all in the time you have, and a child with special needs is no different – nor should they be! But that’s no reason to cram a lifetime into one trip. 

Create a Visual Map Schedule or Story Board

A visual map or story board is an invaluable tool for setting expectations, managing behaviors, and talking your child through meltdowns. These can be done with index cards, calendars, and by creating a visual schedule with pictures. Involve your child in the production of the format you choose. Utilize pretend play to prepare your child, role-playing is a great way to review the visual schedule you have created.

Here are some tried-and-true tips to keep mind.

• Make your first day a short one. Falling out of the car or off the plane and bounding into vacation activities is never a good idea for anybody. Intentionally go to your room and nap for a bit, read or watch TV together and talk as a family about tomorrow’s adventures. 
• Get a bath or shower and freshen up with a meal. Then take in a show later on in the day or some other event that’s low-key or will wear out your hyperactive child just enough to get them to sleep before going out tomorrow.
• Schedule rest periods that allow brief relaxation, even a nap for you and your child. 
• Make sure to take time to shake it out if your child gets antsy sitting still for too long. Short attention spans deserve a breather as well. 
• Plan short, quality-rich activities to meet the needs your child has. Time with headphones or a book for sensory-sensitive kids is a plus. 
• If you realize it’s impossible to return to your hotel at regular intervals, at least allow time to sit down in a quiet café. Enjoy a local beverage and snack that revs up everyone’s energy. 
• It is also important to remember that children need some downtime when traveling. As adults, it is tempting to drag children to every attraction available when visiting a new city but sometimes a bit of quiet, creative play is what they need. 
• One of the easiest ways to prevent tantrums is to eliminate overstimulation. A good idea is to get some sensory processing toys and stims that can help kids decompress.
• Plan at least one day of rest after returning home from vacation. Often you don’t know how tired you really are until you get up the next day for work or school. You are likely to wish you could take a vacation due to exhaustion from your vacation! That’s no way to do it, so remember to include at least one day of home rest after vacation before returning to the daily grind.

Expect the Unexpected.

You have to be ready to expect that something will not go as planned. It’s almost always a given! There will be times when you have to be ready to roll with it. Having a child with special needs is demanding on the family dynamics and it is important to take time out and have fun. Booking a vacation should be an exciting time for families, filled with anticipation of the fun times and memories that will be created. 

While these strategies might work for some, they may not be applicable to all. You can plan all you want for a trip, and it still might not go as you imagined. But that’s okay! Allahu alum - indeed, Allah is the best of planners. At the end of the day, what really matters is that you spend quality time together.

Here are a few links that might be useful:

http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions

https://www.transportation.gov/individuals/aviation-consumer-protection/traveling-disability

Miriam Mohamed is a mother to seven children and a granny to two cats!  She loves trying new things and learning cool facts. She has taught in an Islamic school setting, has experience assisting children with special needs, and enjoys volunteering and being a part of the community. Miriam lives in Chicago with her beautiful flowering cherry tree and big family.