Using Public Restrooms with Cerebral Palsy

 

Taking your child to a public restroom is hard. I think it will serve you best by telling you this up front so that you will not feel defeated if you find yourself struggling to figure this piece out. It is not so bad when you have an infant or small toddler, but as your child gets older and perhaps begins to start trying to use the toilet, you may find yourself wondering how other people do this. I cannot count how many times I have walked out of a restroom sweating (and a couple of times crying) from the experience. We enjoy being on the go but it if you do not feel comfortable taking your child to a public restroom, it can certainly put a damper on your life outside of the home. Since Maya cannot sit up by herself and is not mobile, I have struggled to find a way to make this experience comfortable for her and manageable for whoever is taking her to the bathroom if I am not there. I have developed a routine for us, but your routine will vary depending on your child’s toileting capabilities. As a result, I am going to focus on items that will make your trips easier. It is still uncomfortable and requires patience and physical strength, but there are some strategies I have learned along the way.

One approach would be to avoid the restroom with your child altogether. Some of you may be able to do this by using your vehicle. I have almost never have had this option since our daughter has a strong startle reflex when being placed on her back (in enclosed spaces). We tried a travel potty in the back of our SUV and that worked ok until I felt concerned about other people looking at her as she has gotten older. If you have a van this may not be an issue and perhaps this arrangement is more comfortable, quiet, and cleaner for your child. But even if you have this option you still have to figure out what to do with the waste once your child has finished. Perhaps it still would be helpful to know what to expect and some tips for taking your child to a public restroom if you ever need to use it and are apprehensive about it.

The most important item I come armed with is my custom made fleece (with wipeable backing) oversized changing blanket. It is fabulous and has saved me a lot of stress once I found it and started using it. When my child outgrew the changing table (if the bathroom even has one), I had no idea what to do or what other people do who have children that are unable to stand up but are using the bathroom. I used to balance my daughter on my knee, hold her in the air and try to balance myself, her, the diaper, clothing, all while making sure nothing hit the dirty floor. Now that I found a solution I don’t have to worry about all of that. If you can sew or know someone who can this is probably easy to do. I am not handy that way and so this was not an option for me. You can find a link to E-bay store that sells them below in the “Supplies” section.

The other item I learned to bring with me is a wet/dry bag. I had no idea about these nifty things until we started cloth diapering. You don’t have to cloth diaper to use them. They are bags that have a section for items that are dry (such as a change of clothing), and they also have a section for damp/wet items such as wet and/or soiled clothing. Fabulous! I even had one made to fit on the back of Maya’s wheelchair to replace carrying a diaper bag. Many WAHM (work at home moms) make them on Etsy and E-bay, and you may also find stores that sell them. I highly recommend you get one to make your life easier.

From the time Maya was two (when we started trying to use the toilet) I have had to hold her on the toilet while making sure she didn’t fall into it because her body width was more narrow than the toilet seat. Even with the travel seats that go over the toilet I have had difficulty. The ones that fold up are often flimsy and would fall into the toilet and she would start to slide in along with it. This is even more pronounced with newer style elongated toilet seats. The small potty seats traditionally used at home are bulky and awkward to carry around and clean, but they seem to work the best once you get them on the toilet. There is one problem and that is the ever present elongated toilet seat. Most public facilities only have these now and the toddler travel seats don’t stay on them very well. I have found one item on the market that addresses this and it is the special tomato portable potty seat. I was hoping it would be a universal seat (for round and elongated) but it isn’t and it doesn’t come with handles. But, if elongated toilets are an issue for your child than this is a possibility. I received an e-mail about it when it was on sale for $99.00 (discounted from the original $400.00) which is still quite an expensive price tag. When I e-mailed Special Tomato about any unique qualities it had compared with the less expensive conventional alternatives, the only difference seemed to be the material. I love Special Tomato products but this one needs some work on features and pricing. I am keeping it here until I hear of a better product or any other options for elongated seats.

When your child is settled on the toilet what is often challenging is then being able to squat long enough to hold her there. Sometimes I have had to take Maya off and reposition myself. If you do this make sure to let your child know beforehand. If possible, find a family restroom or have someone with you who can trade places with you when you get tired of squatting.

This brings me to my next suggestion; the free-standing travel potty. We have used a travel potty particularly in airports where several trips to the bathroom can wear you down, and sometimes in the back of our car (in a discreet location). We did use it for a while for short trips out of the house but then I found I wanted to save time would just go without it. It worked well but the size and weight of the child it will accommodate means you probably will be able to use it only for a short time (if at all depending on when and I realize for some of you if, your child begins to use the toilet). Here is the one we used: Travel Potty By Cool Gear. It was a bit difficult for me to figure out how to open and close it but once we did it was fine.

Now that she has gotten older and she is less likely to fall into the toilet bowl, we go without it. We never had the perfect solution because I realized there isn’t one. We stumbled our way through until Maya was bigger (and no longer slid into the middle of the toilet), stronger, and I was better prepared. Below are the supplies I have spoken about in the last few paragraphs along with a few more suggestions. Ideally you will find yourself with your spouse, family, a friend, or someone who can help you take your child to the restroom and perhaps you will be near a family restroom with lots of room. If not, take your time, leave the stall door open if you need more room, take a deep breath, and know that many parents understand this challenge all too well.

Below is another parent who articulates common public restroom issues we often face:

Every time I read this article I just want to yell “Amen!” and “Thank you!”, and “Yes, us too”!!! This parent details what often happens when you take a child (or adult) who uses a wheelchair to the restroom. She also puts forth recommendations on how we can improve on this problem:

http://www.articles.complexchild.com/jan2009/00096.pdf

Here is a campaign in the UK called Changing Places which works to offer more accessible bathroom facilities and supportive equipment. I would like to see a campaign like this started in the US!

Supplies

Custom fleece changing mat: Trendy Fleece Tots on E-bay.

Flushable Wipes: Rather than worrying about throwing wipes away once you get out of the stall, just throw them in the toilet.

Wet/dry bag

Change of clothing

Diapers, underwear, and/or pull-ups. For traveling on airplanes we have used cloth diaper covers or shells for extra protection over disposable diapers.

Disposable toilet seat covers

Your child’s wheelchair (if applicable)

Depending on age or preference: toilet seat covers (you may also use toilet paper), and portable potty insert with handles, small bottle of lysol in your purse or antibacterial wipes separate from flushable wipes.

Tackling logistical challenges

Your child has outgrown the changing table:
It’s time to get evolve your process. I suggest purchasing or making a cushioned blanket with a wipeable backing like we have. Ideally you want to be able to roll it up and store in a bag on the back of your child’s wheelchair or make it convenient to carry with you.

Your child is falling into the toilet and you are having trouble holding her up:
The stronger your leg muscles (and the rest of your body) the better prepared you will be to care for your child. In the mean time you may also wish to carry a small garden kneeler that you can keep in the same bag as your wipeable changing pad. Ideally, you will have someone with you to help but sometimes this is not possible. If you are in an airport ask around to see if they have family restrooms. This way mom and dad or someone else, can go into the bathroom with you. You will have lots of room and the arrangement is more convenient than a typical bathroom stall.

You are by yourself and cannot get your child’s diaper on/off without laying her down:
Because of spasticity in our daughter’s legs and issues with balance, we often have had difficulty getting her pull-ups and diapers on and off without laying her down. We use cloth diapers for a variety of reasons (which I discuss in the “Potty training” section of the site). If you use a pull-up style diaper I would suggest the kind that velcros on the sides since you can put them on without taking your child’s clothes off and they are very easy to take off. If you use a conventional diaper it may be easy to remove it while you rest your child against your body but putting it on is trickier. If your child is unable to stand independently it is best to lay her down. Use a mat like the one I have suggested, or if they are still little you may be able to put your baby changing pad right on the floor.

Germs

I am a bit obsessive about germs. If you are like me you will need to overcome some of this. It simply isn’t going to be a perfect situation all of the time. You have to accept that your child may touch the toilet, or paper or toilet liners you use will tear, not cover the seat all of the way etc. This is why I suggest you carry a small bottle of Lysol (except when going on airplanes since this is not allowed), or antibacterial wipes. Be careful though since you don’t want to mix up the antibacterial wipes and your child’s wipes. Ouch!!! Remind your child to keep her hands out of her mouth and carry hand sanitizer. They have small bottles that you can attach to your purse. I finally realized how helpful it would be to carry a backpack and mine has a small outside pocket where I keep mine.

After we use the bathroom it is often more energy than I have to hold my daughter up to the sinks. Sometimes we are lucky to find wheelchair accessible sinks and that is great but many times I wipe her hands with saniwipes or antibacterial gel. Again, make sure your child’s hands are dry though since you don’t want them putting antibacterial gel in their mouth.

Using the airplane bathroom

Every time we take our daughter to the bathroom on the airplane I wonder what other disabled people do when they have to go. Some restrooms are bigger than others but often we have to keep the door open just so both of us can fit in there and I can support my daughter on the toilet. It really is pretty ridiculous. This is why I think it is so important to fly an airline carrier with typically good customer service across the board because it is often the kindness of the flight attendants that makes our trips to the bathroom tolerable.

Most airlines have changing tables (if your child can still fit on it) except Delta and I have formally brought this to their attention. Disabilities aside, where do parents with babies change their kids on Delta flights? I guess the airlines figure the seat is a fine place to do this but I don’t feel comfortable doing this especially now that Maya is older.

Anyway, if you need to help your child in the bathroom and you find there is not enough room you may ask the flight attendant to force the “occupied” light to stay on if you need to keep the door of the bathroom open in order to fit. This way at least you will not have a stream of passengers peaking in on you and your child while she is using the bathroom.

Take your time! If you are traveling alone ask a flight attendant to help you either by carrying your bag or helping to hold your child up once she is off of the potty so that you can pull up her clothes etc. Now that our daughter is almost five we stand her up in the back of the plane and we have a flight attendant who watches out for people who may wander back and then my husband helps put her pull up on standing up.

Now my daughter is afraid of the noise the toilet makes when it flushes on the airplanes. If you are by yourself this may not be avoidable. If my husband is with me I have him take her away and then I flush the toilet. Please, do not hesitate to ask for help. You want to protect your back and make your child as comfortable as possible. If someone is grumpy or seems unwilling to help you ask them if there is someone else who would not mind helping.

**Recently a parent brought forward the issue of not being able to change her older child privately on an airplane. After much discussion and ideas which other parents brought forward, it was clear that there was no good solution. I would like to see this change. At the very least I think a privacy curtain should be available for children and people who need to lay down in order to be changed, and who are unable to do this within the bathroom. Help bring this issue forward by reviewing the information below and contacting the appropriate parties:

The Air Carrier Access Act: The Department of Transportation has a rule defining the rights of passengers and the obligations of airlines under this law. This rule applies to all flights of U.S. airlines, and to flights to or from theUnited States by foreign airlines. The following is a summary of the main points of the DOT rule (Title 14 CFR Part 382). You may obtain an accessible electronic copy of 14 CFR Part 382 or this fact sheet at http://airconsumer.dot.gov or call DOT at 202-366-2220 to request a copy.

Provided on the USDOT website is the Airline Consumer Contacts list.

The USDOT continues to maintain a toll-free telephone number (including a toll-free TTY number) that consumers who experience disability-related air travel service problems may call to obtain information and assistance. The disability hotline is currently operational from 7:00 a.m. to 5:00 p.m. Monday through Friday, excluding Federal holidays. Members of the public that call outside those hours (i.e. evenings, weekends, and holidays) can leave messages and those calls are answered when the office reopens the next business day.

For more information, download our free cerebral palsy tool kit.