The Truth About Taking A Disabled Child Places

While scrolling through social media lately (my favorite site being Instagram), I've been noticing more and more pages made featuring disabled children out in public places enjoying the same things that other children do. These images and videos of happy children (and I do believe that the children are legitimately happy) may lead one to believe that if you have a disabled child, you can just load them up in your vehicle and easily take them places.

Let me be the first to tell you that those images are the end result of a whole lot of work. More so than I imagine taking a child without a disability out in public. I'm not going to bash those parents who choose to make social media pages dedicated to their disabled children, but I am going to share about the work that goes into getting my son ready to take any public outing.

First off, for those of you who are new to my page and this is the first article you find, let me provide a quick background: my almost 9 year old son has Lennox-Gastaut Syndrome, also known as LGS, a rare and lifelong neurological condition, along with multiple other medical conditions.

Second, I am fully aware that the process needed to take a child with a disability anywhere varies from child to child. However, I'm only going to be focusing on my personal experiences with my son.

Cody is a mostly well behaved child, but it's rare that I take him on any really fun public outings. Mostly, I take him to the store, to school, and to his many doctor's appointments (and he does have a lot!). Other than that, we stay home.

It's not that I'm worried about the Coronavirus or other illnesses (Cody had Covid and recovered). It's that it's a major process that both Cody and myself have to go through in order to take him out places. Depending on where I'm taking Cody to, the procedure is different and for the sake of perspective, I'm going to share all of them with you.

First off, let's say for example that I just want to take Cody outside to walk around and play in the yard. It's not as simple as just put on his shoes, open the back door, let him outside, hand him a cell phone, and tell him to come back at a certain time. In order to take a simple outing to the back yard, I have to first check the time, as Cody needs both food and medicine at certain times. Next, I have to put Cody's socks, AFOs (a type of leg brace), and shoes on him, check his diaper (and change it as needed), and finally, take him outside.

Once out, I have to walk with Cody wherever he goes, taking him by the hand and gently redirecting him whenever he tries to walk too far. All the while, I have to check my phone to track the time, bringing Cody back inside when it's about 10 minutes away from one of his feeding or medication times.

Second, there is the procedure to get Cody ready for school. I set my alarm to get me up an hour before it's time for him, eat, then the real morning work begins.

I have to both prepare and log Cody's medicines in the morning, get his clothes, diaper, towel, washcloth, cream, and ointment ready, log Cody's medication, and make sure his school bag has enough diapers, wipes, and his school food log book, and then it's time to get him up and ready.

Usually when I walk into the room, his morning medications in hand, Cody is sleeping. I have to gently wake him up and while he is still in bed, give him his morning medications, then help him into the bathroom.

Once in the bathroom, I help Cody get ready for a shower and help him first onto the toilet. After he does his business, I help him into the shower and proceed to wash him (Cody cannot bathe himself), dry and diaper him, and put his cream and ointment medications on him, along with his clothes. We stand at the sink, where I brush Cody's teeth, then it's off to another room for socks, leg braces, and shoes. After that, it's time to hop in the car and go to school.

Third, there's the procedures for both taking Cody to doctor's appointments and other longer outings. This is the longest and most involved out of all of them. Quite often, preparation happens the night before, with Cody's lunch (and sometimes dinner) preparations.

Cody cannot eat solid food like a regular kid. Feeding him isn't as simple as pulling into a fast food drive thru lane, ordering him something, and handing it to him to eat. and that being the end of it. Everything he eats has to have gone through a blender first, due to the fact that he has dysphagia. To feed him, I have to blend his meals that are coming with me the night before, transferring them into containers. After that, I have to use a soft sided cooler and freezer packs, along with packing his special nutritional supplement drink so that he can be ready to go the next day.

If by any chance I'm too tired to prepare Cody's meals for the next day, that means there's more work for me to do the next day. This would be in addition to making sure that there are enough diapers, wipes, a change of clothes, and a couple of plastic bags (in case of poop and soiled clothes). Also, I have to remember to prepare his medications, in the event that while out, it's time to give him any. All of this is in addition to having to repeat some of the same procedures that are done to take Cody to school.

Cody enjoys going out anywhere. He's always happily looking around and exploring (when it's safe for him to do so). and just enjoys being out. He smiles a lot, rides in his little stroller or his wheelchair (Cody can ride in both, but his smaller stroller is way easier to transport) or even walking next to me with me holding his hand. Something that makes for social media pictures of a differently abled child having fun doing things that non-disabled children also do.

I want to end this by saying that whenever you're on social media and an image of a disabled child on an outing comes across your feed, remember the fact that what you are seeing on social media is the end result of a lot of work on their parents' or legal guardians' parts.