CP Daily Living’s Road Travel Essentials

Our family loves to travel. Getting away rejuvenates us and we rely upon our family trips for that much needed change of scenery and break from routine. Sure there are surprises we stumble upon that require creative troubleshooting. Facing new accessibility challenges bring out different emotions for all of us yet, in spite of these issues, we find we need to get away as much as possible. It has taken us a few years to get the hang of what basics we need to travel comfortably with Maya (and to find them). Since we just returned from a road trip I thought I would share the list of items we have compiled over time to make our trips easier. Perhaps you will get some ideas from this list or share some of your own. Although our daughter has cerebral palsy, we hope this list may also offer ideas that are helpful for any family who has a child with special needs.

Recaro Monza car seat by Thomashilfen with swivel plate accessory (swivel plate is sold separately): This is our current alternative to having a wheelchair accessible vehicle. The swivel plate makes transfers so much easier now that Maya has gotten taller and heavier (my back thanks this company every day).

Tray for Maya’s car seat: Having a tray to use in the car is very helpful. There are some portable trays for travel you may wish to try or research so that you may not have to wonder whether your car seat comes with this option (and spending lots of extra money for it). Maya’s first comment about the Thomashilfen’s Recaro Monza tray accessory was, “Why doesn’t it come with a cup holder?” It was a good question and we found a few other issues with it. It isn’t easily cleaned, and until recently Maya wasn’t tall enough to use it (despite it only coming in one size). We used it on our most recent trip with moderate success. I have given Thomashilfen’s owner feedback about the tray and they have been interested in exploring ways of improving it moving forward (all changes require test crashing).

Rooftop carrier:  We bought ours through Craig’s list but it originally came from Sears. It’s given us an economical way to add storage space to our small SUV. Just remember to separate your essentials so that the person loading (ahem to Maya’s dad who always loads the top carrier with 2-3 essentials for the day of travel) doesn’t put anything up top that you may need during your ride.

Maya’s wheelchair (by Ki mobility) w/tray accessory: Regardless of which wheelchair your child has we were adamant that the one we chose for Maya must have an option for a tray. It’s a huge help when eating at places where her wheelchair doesn’t allow her to reach the table, it also is allows her to have another workspace without transferring her to another seat.

Dyno all-terrain stroller:  Our all-terrain stroller is one of the most beloved equipment purchases we have ever made. It has opened up a whole new list of activities/scenery for Maya and our family to experience together. We can take her on the beach, pushing through the Carolina dunes without stressing over whether to rent a separate beach stroller (if they even have them), and we can now take her on hiking trails. One of the reasons we chose the Dyno is because it was relatively lightweight and folded which allowed us to easily store and transport it in our car. It also has a dynamic seat (it moves with Maya when her spasticity kicks in) which supports Maya well. It was an expensive investment but we saved some money by purchasing a demo model. Also, we felt confident with this purchase since the Dyno has been designed to offer lots of room for growth. Depending on your child’s positioning needs and abilities you may consider having an all-terrain chair for use full-time, rather than having to purchase two different chairs. You may wish to review a blog post I wrote about our first wheelchair purchase which includes information about what mistakes we made and what we learned going forward. 

Special Tomato Soft Touch Sitter: A lightweight and portable supportive seat for Maya to use during mealtimes. We don’t bring it to restaurants because it is quite large, but it’s been very helpful to use when we stay in someone else’s home, condo, or hotel room, allowing Maya to access the same table where everyone else is dining or playing games etc.

Toilet chair: They don’t make the Rifton one we use anymore, but I wish they did (this one by Leckey is similar). It’s simple, it works, and Maya is so comfortable in it. The one downside is that we have to clean it out, but it makes transferring her to the toilet easier because it sits low to the ground. We do have the Rifton Blue Wave  which is very easy to travel with, but, Maya has trouble positioning on it as well as she positions on the old style Rifton where her feet touch the floor.

Kids adirondack chair: a conventional outdoor chair Maya’s preschool teacher found for her at Toys R Us. I have never seen it online. It isn’t perfect, but it works better than anything else we have tried that sits close to the ground and it can be used outside. While putting this post together I came across a few equipment pages and one company that suggest using your child’s bathing chair as a floor sitter (outside too). I guess it would depend on the type of chair. I am pretty picky about keeping things clean, but it certainly is a way to minimize the equipment you bring.

Bathing chair: The model we use for travel is no longer made but it is very similar to the Minnow Bath Support by Snug Seat. At home we use another bath chair that is bigger and not as easy to travel with (I bought the Minnow first hoping it would work for travel and home). It wasn’t until recently that Maya was able to use the bath chair similar to the Minnow. Her pelvis used to slide forward and we had to constantly adjust her while we bathed her. When she was younger we were able to use bathing pillows and/or get our bathing suits on and get into the bath tub with her to bathe her. If you are in the market for a bath chair for your child and like to travel you may consider looking at the TubDipper. It’s very compact and lightweight. It may not work in all situations since using it requires a certain tub ledge width. We did not purchase one because we wanted Maya to have the opportunity to be more upright when we bath her and the TubDipper doesn’t allow for that. Like the Minnow it can be hung on a hook for easy storage.

Special Tomato Potty Seat with storage bag: After Maya outgrew the toddler toilet seats, I began looking for something we could use at home and when we travel that would help keep her from sliding into the toilet. This toilet seat has helped her feel more relaxed therefore making it easier to go to the bathroom. It doesn’t offer her all of the support she needs but it is a helpful intermediary step between having nothing at all, and having her more elaborate positioning seat which is not easily taken in and out of bathrooms.

Hand sanitizer, flushable wipes, and mini Lysol stored in the outside pouch of our Special Tomato Potty Seat bag

Cool Gear Travel Potty: When Maya was younger we used to carry the Cool Gear Potty Seat. It had some quirks (it was sometimes hard to open the storage compartments) but it worked really well for a while and was so easy to transport. You could even use it in the back of a minivan.

Custom changing pad or Multi-use Pads: Great for changing your child on the run. We have a custom made cushioned pad from the seller linked above, and have purchased some extra large plain white changing pads with wipeable backings from Babies R Us. At 27×36 and $11.99 (at the time of this post) for two the multi-use pads, these pads are economical and large enough for use well beyond the intended baby and toddler years. We keep them in every bathroom in our home. They offer a clean and dry area for getting Maya dressed after using the bathroom, or for dressing her after bathing or swimming.

Outdoor wipeable and/or zippable picnic blanket: Many retailers sell these. I think I found ours at Target. They are great for rest stops or relaxing outside and by the beach.

KidCompanions Chewelry: Maya has trouble sitting still. She usually needs to have something in her hands to fidget with in order to feel relaxed. For the past few years she has been in the habit of picking her gums. She relies on her Chewelry to help her overcome this challenge especially during long car rides.

Sea-Bands: Can I say unequivocally that these help Maya beyond the placebo effect? Nope. But, we have used them since she was an infant and now that she is older she is adamant that they often help her overcome motion sickness in the car. She won’t go for an extended ride in the car without them. We bought ours at our local pharmacy.

Wet/dry bag: We started ordering these bags when we were using cloth diapers with Maya. One day I asked the shop owner to make us a wet/dry bag that attaches to the back of Maya’s wheelchair. We are hooked on them now. We can bring extra clothes and have two compartments to separate her dry clothes from her dirty or wet clothing.

Snacks for constipation: I recently heard about the blog “My Whole Food Life” from a close friend who is making changes to her family’s diet. It turns out that several of these blogger’s snack bars and “cookie dough” bite recipes are one of the most powerful constipation remedies we have found for Maya. Having these snacks in addition to lunch or breakfast made with Ezekiel bread, keeps us all going. In the past we used Fruiteze and it was very easy to bring on the road. However, Maya prefers the taste of the snacks I prepare from this blog to eating the Fruiteze.

Aprons-A friend made Maya several adorable aprons after seeing my post about a children’s apron we were using as an alternative to a bib. They have been wonderful helpers that allow Maya to feel comfortable exercising her fine motor skills at the dinner table without messing up her clothes. You can find kid’s aprons all over the internet and if you want something special you may wish to find a seller on Etsy to make some custom for your child.

Squeezie balls: When Maya gets angry she likes to have a squeezie ball nearby. Be mindful of your child’s age and/or whether they put things in their mouth before deciding what to purchase.

Small cooler for medical supplies and/or a medical supply bag: This approach helps us keep medicines at the right temperature (some of ours require refrigeration) and handy for finding them quickly while we are on the road.

Wacky noodle and a few sheets of rubber grip style shelving paper (not slick): We have learned from therapists the many creative ways of using wacky noodles in a pinch to help with positioning. Also, we have found many uses for the rubber style shelving paper including keeping Maya’s dishes from sliding while she is eating.

Unicorn Dream Lites Pillow: Maya loves all things that glow in the dark, and this pillow projects stars on the ceiling so that we have a traveling star show.

“Wall music”: Maya’s name for the HomeMedics Sound Spa Lullaby machine. I don’t know why she is obsessed with this but she loves to have it on every night along with her stars. It projects pictures on the wall or ceiling and plays music/soothing sounds as well.

Maya’s personal music play list: Maya has always loved music. She can sit in her room for an hour just listening to the radio and playing with one of our dogs. She is very particular about what she will listen to and for several years she has looked forward to her dad or grandpa making her a personalized music play list for traveling and/or bed time.

Video monitor: Maya has seizures and when we travel we may not always stay in the same room with her, or she goes to bed before us. Our video monitor helps us to be able to keep an eye on her. We purchased one by Summer Infant similar to what is linked here. I am sure there are many good options on the market.

Bed cover for accidents: I was so tired of stripping Maya’s sheets in the middle of the night. I found a cover for on top of Maya’s bed sheets and it’s made managing accidents much easier. Although we purchased the one linked and like that it tucks in under the mattress, there are others on the market that are larger and less expensive such as this I found on Amazon.

Bed rails: We have two kinds we have used. One set is called Bed Bug Bumpers. They are made of foam, go under the fitted sheet, and when we have travelled by plane they fit in our suitcases or I shipped them to our destination. We also use a set by Summer Infant. The part that slides between the mattress and the box spring folds up so we can usually slide them on the sides of the trunk when we pack the car. There also have been a few times we placed a mattress on the floor for her and there are some kids and adult inflatable mattresses that you can travel with as well.

Window shade: Great for when the sun is in Maya’s eyes and she has had difficulty moving her head to avoid it. It’s also great for when your child wants to nap since they block the sun or lights from coming through the window.

Essential stuffed animals: We bring a few of Maya’s most current favorites. They are Ponyo, purple bunny, and Lena Luna the lamb. Maya added Luna to Lena’s name (the company gave her the name Lena) because she liked Luna better. We kept  the name Lena as well so that Lena Luna would know we were talking to her.

Reusable no spill cups with straws: You can usually find these in the grocery store. Maya is not able to drink out of a cup without a straw. She also has difficulty holding onto cups so these are great since they come with a lid and they don’t usually spill (put the straw in after you put the lid on to avoid spills or leaks).

Flexible straws: Most restaurants don’t have flexible straws and in the car we use them (since we have to wash the re-useable ones). It makes it easier for Maya to focus on holding the cup rather than putting additional energy into positioning the cup just right so that she can drink out of the straight straw.

Gyro bowl: some parents love them and others find them less than helpful. For Maya, she has the hang of holding it and it gives her some extra protection from having her goodies spill in the car. Some parents report that their children figure out how to dump everything out anyway. There are other types of snack holders that help prevent spills but Maya has a harder time negotiating anything with a cover.

Paper towels and wipes: for the occasional spill or messy hands in the car

Ipad: Sometimes Maya watches movies from her seat (the Monza has its own audio speakers and plug), but it’s also great for her to play games and educational programs on the go.

Glow sticks: Again Maya loves anything that glows in the dark and can spend an hour playing with a glow stick.

Maya’s play doctor kit: Maya loves to play doctor. She can hear a bruise coming to the surface of your skin on the other side of the house. Her doctor’s kits gives her hours of fun and it’s small and portable.

Bubbles: On occasion Maya is bored when we have down time on vacation. She isn’t much of a television watcher. So, for less than a dollar Maya will squeal with delight when she or someone else blows bubbles.

Extra blanket: Despite always being warm Maya has surprised me over time by requesting a blanket for longer car trips. She says she gets cold in the car and I think it helps her to feel more comfortable as well.

If we rent a mini-van for a trip Maya’s Rifton trike comes along too.

Finally…we always bring a pain reliever with us. Those frequent transfers in unfamiliar and untidy public bathrooms are a recipe for a sore back.

What are some of your favorite road travel essentials?

When we return from our trips we will now be using the new website Accessible Travel Reviews website started by another family who loves to travel and has a daughter who is a wheelchair user with cerebral palsy as well.

You may wish to visit other parts of the CP Daily Living website related to travel. We offer information and insight about some of our practical experiences related to traveling as well as related resources:

Related CP Daily Living website sections:

Travel

Using Public Restrooms

Accessible/Adaptive Activities & Sports

 

Recently, I posted an article on our facebook page about a young comedian, Jack Carroll, who has cerebral palsy and auditioned for the show Britain’s Got Talent. In the article, Jack was introduced as a “sufferer of cerebral palsy.” Beyond the content presented in the article, a discussion ensued on our facebook page about how language influences the perceptions of people with disabilities. There were a variety of perspectives presented from individuals with CP and parents of children with CP.

So what is the right way to respectfully talk about people with cerebral palsy or any other disability? I become increasingly challenged by this question both in person and in writing. Now that I am the parent of a child with a disability and the host of a website about cerebral palsy, the stakes are higher for me to get this “right”. And, I am finding that determining whether an article or speech respectfully describes a person with CP or any disability often lies in the subtleties of the description, not only the words used, but the intention behind the words.

I am reminded of a conversation I had with a very good friend of mine, Kelly. Her daughter has a genetic disorder and attended the same therapeutic preschool as Maya. The founder of the preschool was Dr. Leslie Meyer, an incredibly forward thinking and generous man whose vision for children with disabilities is still progressive within our local community almost 60 years later. He passed away a few years ago. One night Kelly and I were discussing the issue of language as it pertains to people with disabilities.  She said to me, “Michele, Dr. Meyer spoke to me about AK and he said, ‘Kelly she is doing good. She is doing real good. There is nothing worse than a spoiled retarded child.’”

Now, you may gasp in horror at hearing this statement, but consider the context. This is a man, an orthopedic surgeon, who dedicated a large part of his life to establishing a therapeutic preschool school in the 1950s for children with cerebral palsy. At the time his colleagues ridiculed him for thinking that children with CP could learn and should have a place where this would be possible. In the 1950s children with disabilities were not guaranteed an education, so rather than being in school most kids with CP stayed at home. Dr. Meyer was in his 80s when he passed away. It was part of his life’s work to support the CP community and he had the deepest respect for our children. He used the term “retarded” as a clinical reference because his generation of medical professionals used it that way. Had Kelly, or any other parent become distracted by his language faux pas, she would have missed out on the wisdom and love he was conveying. He was relaying the importance of setting boundaries and respecting children with disabilities by treating them with the same respect and guidance you would offer a typical child.

I feel terrible when friends, family and strangers struggle to find words not to offend Maya or me when they ask questions or discuss cerebral palsy. I want to encourage conversation, yet I wonder how many people avoid eye contact and conversation because they worry about not finding the words that won’t cause offense to our family. Sure, there are some well known blatant language offenders such as the “R” word that have been widely broadcast as conversational “no- nos”, but there is no layperson’s guide book of the most appropriate and respectful ways of navigating these conversations. Who you offend and how you offend them can vary from one individual or family to the next, regardless of your intention. How we evaluate the use and abuse of language to illustrate one’s intentions is a tricky matter.

In journalism I understand there is some professional guidance on the appropriate use of language, which, in the case of the article referenced above, may have been ignored. Perhaps in the mind of a journalist, describing someone as a “sufferer of a disorder or disease” makes for a more dramatic or more appealing story. When I saw this phrase I stopped reading because it bothered me but I wasn’t sure why. I tend to try and focus on the overall content being presented, but still, this phrase didn’t sit comfortably with me. After I finished the article, I thought about it more intensely. I decided that it wasn’t necessarily incorrect to say that people with cerebral palsy suffer from pain and other daily challenges. So what was it that made me feel awkward? I figured I would post the article and see if anyone else brought this issue forward, and what they had to say about it.

What I didn’t initially consider was the impact that repeated use of this language has on society’s perception of a particular population. As one parent guided me to see, describing someone as a sufferer connotes pity and victimization, two emotions I definitely don’t want people thinking when talking to or thinking about Maya. Compassion and understanding yes, but pity, no way.

As we navigate these tricky waters as a collective society, I imagine what constitutes offensive language will shift as our beliefs and use of language change. Once upon a time there was nothing inherently offensive about the “R” word. However, over time it was misused, abused, and intended to be insulting, and with that change, the word itself developed an offensive quality.

I think one of the most important aspects of using language that reflects our intentions is to check in with each other and ourselves about how we use language to express our ideas and feelings. If someone says something that hurts you, tell that person how you feel and why. Give that person a chance to understand and learn from what you see and perceive through his words. Not all people will have access to the current thinking about various disability terminology, and people may disagree on what they are, but at the very least I believe we need to get to the heart of what individuals and our collective society believe about people with disabilities/challenges. Maybe one day we will stop categorizing people for the purpose of describing them in general context and use these categories only to diagnose and treat the individual medically and to offer more helpful support/accommodations. Who knows what the future holds as our ideas and intentions shift.

When the timing is right dialogues about disability language may bring understanding, and push us to examine our intentions, ideas, and beliefs, so that we can continue to have language most accurately reflect what we mean. As individuals we all have places within us that are vulnerable depending on our personality, personal, philosophical, and cultural values. In addition, for people with cerebral palsy the degree of the disorder’s impact on their daily lives may affect their point of view. At the core of people’s sensitivity to the use of language about disabilities is the deep desire to feel accepted, respected, and loved.

As I read our followers’ comments below the article describing Jack Carroll as a “sufferer of cerebral palsy” I pushed myself to examine my beliefs, ideas and feelings about my daughter and other people who live with cerebral palsy. My thinking and my use of language shifted from that day. The change didn’t come from a desire to just be politically correct, but from having my beliefs change about the subject. Thankfully the parents and individuals involved in the discussion were kind enough to allow me to process all of this without ridiculing or judging me.

Below,

Dartania Emery, an adult living with CP, comments on the this same news article. Dartania felt strongly about the journalist referring to Jack Carroll as a “sufferer of cerebral palsy.” On our facebook page Dartania Emery has offered to host conversations, field questions, and offer insight about what it is like for her to live with cerebral palsy. She helps create understanding without judgment, opens herself up to the perspectives of parents that may contrast greatly from her own, and she isn’t afraid to ultimately share what she feels and believes. Thank you Dart!

Here is Dartania’s perspective:

This description really got me thinking about how and when one differentiates between sufferers of a disability versus people who live with the same disability. When people say that those of us with CP suffer from it, I get a little upset by it. Yes, I might suffer from the effects of having CP but, I’ve always seen myself as living with CP. My grandma taught me to never let the CP get to me. So, I’ve never complained about it. Like I said on CP Daily Living’s Facebook page, “everyone goes through pain – whether it be physical or emotional pain. Whether or not you let that pain consume you, is what makes you a sufferer of that particular pain.” A great majority of the other adults that I know who have CP, are in agreement with me that we don’t suffer from CP, we just live with it. I also take the wording of “CP sufferer” to task because I don’t like for people to feel sorry for me or, to treat me differently because I have CP. I want to be seen the same and treated the same as everyone else.

 

Maya thoroughly enjoyed herself last night. After seeing her second play, “Charlotte’s Web” a few months ago, she decided she wanted to give theatre-going another try and see “Rapunzel”. So, yesterday evening we headed to the theatre and as soon as we got into the building another parent asked Maya if she was excited. She said, “No, I am nervous.” Apparently the woman didn’t hear her or expected a different answer because the woman said, “Yes, it’s going to be great.” It’s hard for many people to understand how something like a play could overwhelm a person’s nervous system. Sensory integration seems to be an issue for many kids these days, but it definitely isn’t the norm. Maya has to prepare herself for an adventure like this. She is afraid when the lights go down, she has trouble following the quickly changing scenery, and the music and noise often startle her.

When I took her to her first play last year she barely paid attention. She looked around and focused mainly on what her friend beside her was doing. I tried to point out different parts of the stage scenery and help narrate what was going on, but she didn’t seem interested. Perhaps there was too much information for her to process at once. Fortunately, we are much better prepared now for the variety of responses Maya may have to new experiences: fear, boredom, being overwhelmed, screaming, etc.

We try not to fill ourselves with expectations when planning activities because it creates pressure for everyone. We do what we can to help Maya negotiate new experiences. However, it’s difficult to find the balance between helping her learn and experience being successful by moving through her fear, versus reinforcing it further. As she gets older we see Maya pushing herself to work through her nervous system sensitivities without our input. Sometimes she is able to navigate challenges on her own, but other times she ends up retreating from a circumstance feeling too overwhelmed to continue. We don’t always know which outcome is likely so each new activity requires collective patience, creativity and sensitivity.

We have found that on vacations (territory ripe with new experiences) it’s been her older cousin who has given her the courage to push through with success. Other times we have found ourselves in the middle of a tornado of emotions and overstimulation, where our words and intentions just add to the chaos she feels and expresses. In these cases it isn’t until much later or even the next day that Maya is able to piece together what she was feeling and discuss it with us. It’s like a storm that needs to pass in order for her to achieve any clarity.

With all of this background, you now can understand my joy as I watched Maya during the play last night. She not only listened to the dialogue and paid attention, but she also integrated the music, the plot, the sounds, her fears, her toileting, her hunger, her vision, her wheelchair, her tone, and on and on. I wanted to give her a standing ovation. At the end of the play she turned her wheelchair around full circle and started wheeling herself out of the theatre. In the last week she has been eager to try and push herself in her chair whenever possible. Gosh, have we come far from six months ago when everyone wondered if she would be able to propel a wheelchair!

After leaving the theatre we went to get Maya a sweet treat that she asked for several times during the play. We found a nearby coffee shop that also had a gift store. She said she wanted private time and wheeled herself away from us. As we both watched her I thought to myself that her body language said, “I got this one guys.” At one point when she crashed into something in the store she yelled to her father, “I’m OK Dad,” a clear signal that she knew he was watching and didn’t want him coming closer (we were watching her from a little distance away). She said she was in “cute heaven” because everything in the store was so cute and she wanted to stay there and enjoy it (alone). I think more than anything else she felt excited about being able to enjoy the play and her newly found freedom in moving through space without her parents’ interference. I can only imagine how wonderful that must feel to her. Keep going Maya; we are behind you, beside you, and we are here to guide you whenever you need us. We know it isn’t easy, but your rare blend of self-acceptance and self-confidence are leading you and us to new places.

 

 

Repost from Facebook April 7th, 2013

Yesterday was one of Maya’s very good buddies’ 7th birthday party. There were a few kids there that Maya knew from her former therapeutic pre-school. Maya’s dad told me today that he had been a little worried about her at first. It was held in our friend’s backyard and she was in her wheelchair, and he wasn’t sure if she would be able to comfortably involve herself with the people and activities there. He then went on to tell me that he couldn’t believe how she and her two buddies played together. They each have their own unique challenges, and yet their instincts to care for, listen to, and include each other was powerful enough to melt this dad’s heart. These two dear friends of Maya’s welcomed her onto the trampoline and other activities with open arms (literally). How many life lessons could be learned from these girls?!! Writing and thinking about it now makes the tears flow. I wish we had gotten a photo of the three of them together. This is a smile that comes from deep within and I will cherish it and the memories of this day forever.