In Search of Feeding and Changing Spaces

I've been a bit more emotional lately as it was Rich's mom's birthday month. This month, like those that follow, are tainted by cancer's insidious hooks. It was on Sandy's birthday we learned of the cancer diagnosis that would eventually take her life. It was cancer that would rob us of Rich's father before we were ready to say goodbye.
Since we lost Sandy and Richard we have been working, fighting, to rewrite our memories. To lay to rest our griefiversaries by honoring the lives of those we love, revitalizing their memories. I tell you today was no different. It is a constant struggle between grief and hope all the while grinding along the way. 
Like most moms the morning starts with an evaluation of the day's to do list followed by the construction of a schedule. Each day's appointments are shuffled and placed, the free time quickly evaporating. A few constants remain. All day long I wonder, "do we have enough food with us?" If we have to stop to get food, it is quickly followed by, "Oh lord, what can we eat here?" Or if our thoughts aren't about food then it is about "where is the best place to change him?" "Is there an adult sized changing table, family bathroom or lactation room I can use? Something, anything just so I don't have to change him on the filthy bathroom floor again." I never had these thoughts when Sophia was still in diapers. These days I am consumed. 

In the summer it is easier, we can eat and change in the car. Albeit very public we can manage and find a way. When he was little I could change him on my lap or in the passenger seat. Now that he is four years old and over three feet tall, the passenger seat isn't an option. Charlie cannot stand independently. Standing while changing isn't an option. That means unloading the wheelchair to use the back of the car. Again, in the summer it is fine although public. 

In the winter, it is awful. Everything has to been taken out of the back and reloaded into the car. The cold midwestern winters filled with subarctic temperatures make this sort of change uncomfortable for both Charlie and I. He is completely exposed, most often urinating on me and the car because of the wind and temperatures. Then we load everything back in the car, or him in the wheelchair to the next appointment or therapy. 

Even when it comes to eating the car is usually best for us. Yes, judge me now.  I let my children eat in the car. Most of the time it is because it is the safest seat for Charlie to sit in. He has a five point harness that has him in a stable supported position. Since we eat mostly purées and mashable solids it is essential that he have good support. Additionally, restaurants start to look at you funny when you bring a cooler of food for your four year old. They expect you to order off the menu. More often than not, there isn't anything he can eat or even a seat that he can sit in. We either have to hold him in our laps or feed in the wheelchair. This is very unsanitary and unsafe. So most days we sit in the car, I turned around the entire trip facing the kids, facing Charlie. 

This our life day in and day out. It is cyclical. When we go out,  we must carry a cooler with our own food and drink, bags filled with equipment and diapering supplies. Then we hunt for our "feeding and changing spaces." Due to the fact in most public forums it is socially unexpected to bring your own food I hear comments like, "What four year old needs their own food at a restaurant?" For us, it is a matter of survival. Whether it be a restaurant, the zoo, our therapy clinic or a regular medical appointment we travel with our bags filled with diapering supplies, medical equipment and food. Even as we work on toilet training him, we are trapped in this vicious cycle. 

The irony of this never-ending loop is that most frequently it results in me not eating or using the facilities. In an effort to ensure my children are cared for, in particular Charlie, I often am forced out of the picture. In an effort to get things done, arrive to the next appointment on time, I am shifted out of focus. I do what any desperate mother would do when burdened with the necessity of caring for a child, one that cannot stand or articulate their wants and needs. I search, scouring public spaces, inventing ways to care for my son out of the invasive, prying eyes of the public. I do this to make Charlie more comfortable, to respect him while providing dignity. 

In actuality I should be struggling out in public under the ever watchful and judgmental eyes of suburban moms. I should be making a scene to show society what we go through. I should show my anguish reeking with my desparate necessity. I should stand in front of the public's prying eyes, drenched in despair. You should see us struggle and search so that you know the need for accessible restrooms. So you know how many children and seniors are tethered to their homes, the only accessible feeding and changing spaces available.


Yet, I don't. As a mother of necessity, like many others, our struggles take place in private. We access our community in bursts. We build tenuous relationships to find out locations of universal changing spaces from others. For this topic there are no cute pictures of Charlie. There aren't any videos. This topic is difficult enough to discuss while maintaining dignity and privacy. To be honest, I don't have any free hands to capture the complexity of the scenario. My hands are used to maintain my son's safety while I try to change him. 

There are places that exist, that send a message of inclusion. For those places, I want to take some time to thank. I want to thank every facility out there that has family, companion and fully accessible restrooms. To those constructing new buildings and public spaces like community centers, libraries and schools please consider the inclusion of an adult sized changing table when designing. Please have that table be at wheelchair height, making transitions and transfers easier and safer for everyone involved. These small thoughtful changes make all the difference for a family like ours. It is time for change. It is time for universal changing places in public facilities. It is time for inclusion.