I have always had an uneasy relationship with my son’s disabilities. Part of the work of being a parent of a child with special needs is learning how to think about it. There are as many ways to think about disabled children as there are individuals. Sometimes members of the same family don’t see eye to eye. I don’t want to get on my soapbox about my frustrations with “superhero families” or “don’t even tell the child their diagnosis families,” as I have come to think of them. There is so much to unpack, and we all cope with the cycles of grief in our own ways. But it is important that we think correctly about disabilities because it affects the way we behave. The thinking is everything, actually. And for me the thinking is particularly hard to master when you have a child like mine. When Micah was diagnosed they called him, “mildly affected by Kabuki Syndrome.” It offended me then and it offends me now because I can assure you, his life is not mildly affected. Everything Micah does every day is affected by Kabuki Syndrome.
I recently started the process of trying to get Micah an adaptive stroller. Because of Micah’s Kabuki Syndrome he has low muscle tone (hypotonia.) This means that his muscles, and especially his legs wear out quickly any time he has to walk for longer distances. Inexplicably, it has taken me a long time to recognize and accept this. For years I had the narrative in my mind that Micah’s gross motor skills were the one, blessed thing, that was mostly normal for him. A few hours after birth he lifted up his head and looked me right in the face.
Micah sat up at five months, crawled at six, and walked at eleven months. He was in size 3-6 month clothing walking around and shocking everyone who saw him and assumed that he was a six month old baby. For years I’ve protected this idea of having one area of relative normalcy as some kind of silver lining. In fact, no one even mentioned low muscle tone to me until Micah was six years old. I spent years thinking that his “unwillingness” to walk longer distances was a behavior and one that I could help him overcome if I just pushed him enough or motivated him enough. He was just stubborn. He was just being lazy.
Now I know that hypotonia affects roughly 85% of people with Kabuki Syndrome. There are some very exciting clinical trials underway at the Roya Kabuki Program at Boston Children’s Hospital to try to figure out the etiology of the hypotonia and hopefully eventually develop a treatment. But for the foreseeable future this is Micah’s reality. When we have to go to the store, or on a neighborhood walk, or even across a parking lot, Micah just gives up and wants to be carried or throws a fit.
Oh, and by the way, he now weighs 75 pounds.
In May I had the opportunity to go with Micah’s special education class, now called Alternative Curriculum Program (ACP), on a fieldtrip to the zoo. The zoo is a place that Micah used to love but in recent years no longer tolerates very well because of all the walking. However, this time Micah’s teacher had rented a stroller from the zoo because there are a number of children in his class who have the same struggles. Two things struck me on this trip. One was a soaring feeling of not being alone. Here were other children acting just like Micah! The other revelation was this very obvious but also very long-delayed eureka that Micah’s life is so much happier when he can take breaks from walking. Without having to be carried or dragged along, Micah was 100% more comfortable and actually enjoyed himself in a place that would normally be melt-down city. Also, he showed no sense of social stigma or shame riding in a stroller which surprised me. Maybe I was the one being held back by shame, not him. After discussing it with his teacher and a dear friend of mine who also has a disabled child, I decided to start the process to get Micah an adaptive stroller to fit him.
This has proved to be quite the endeavor with many steps. Medically speaking an adaptive stroller is considered a mobility device, AKA a wheelchair, although it’s styled differently. I’m thankful for the team of people who are working on getting this all arranged for us and approved through our health insurance. Hopefully within a few weeks Micah will have a new set of wheels and way more possibilities open to him.
Today I took Micah with me to the store with a couple of my teens. I knew that this was going to be a long trip with items needed from almost every department. I also knew that this particular store has a cart for older children and adults with disabilities. On the drive over I considered the possibility of maybe using it for Micah today. Micah outgrew the baby seat in carts years ago and always rides in the basket. This is not only uncomfortable for him but also takes up all the space. Local friends may have spotted me in the past pushing one cart in front of me filled with a certain eight year old while dragging a second cart filled with my actual groceries behind me. This is no way to shop.
The moment we arrived at the store Micah started whining about having to walk through the parking lot and refusing to get out of the van. I made my decision then.
“Micah, it will be OK because when we get inside they have a special cart just for big kids like you!” I said.
Sitting here now I could cry tears of relief at how much it helped. This is seriously life-changing for us. This was the best trip to the store I have had with Micah in years!
Why didn’t I think of this sooner?
Well, I’ll tell you why. It’s because of my own entrenched ableism.
If I’m honest, I’ll admit that when I’ve considered it in the past, the thoughts that have come to mind range from mildly embarrassing to downright awful. Thoughts like,
“He can walk. I just need to discipline him. I just need to not let him have a fit in the store. Or bribe him with something really motivating. Or distract him.”
Wrong thinking. Ableism holds up the abled as the standard that everyone else must conform to. Ableism tells parents that they are failing if their child can’t or won’t do what “normal” children do in public settings.
“What if a more disabled child comes in the store and needs it?”
Wrong thinking. Ableism always tries to round up. Ableism downplays disabilities or tries to look on the bright side. Ableism says, “He’s only x years old, I’m sure he’ll talk eventually. I had a distant acquaintance who didn’t talk until she was 4 years old, and she talks all the time now.” Ableism says, “Your son is mildly affected by Kabuki Syndrome.”
“What if strangers in the store look at us funny?”
Wrong thinking. Ableism says that there is something to be ashamed of if we stand out or look different.
“What if strangers in the store think he’s more disabled than he is?” or worse “What if strangers in the store think he’s more disabled than he is but then they see him walk a short distance and think that we’re faking his disability?”
Wrong thinking. That one really held me back. When you have a “mildly affected” child that affects your whole life you also life with a constant case of imposter syndrome.
“What if Micah feels embarrassed?”
Oh my gosh, now I’m projecting my own ableism onto him! Ableism says that there is something fundamentally wrong with being disabled. That able-bodied and able-minded people are more valuable or worthy than atypical people. So anyone who is different must feel shame.
With all of that spinning around in my mind I strapped Micah into the wonderful, fabulous, special needs cart and exhaled. My actual experience wheeling him around in it was very interesting. For one thing, way more people smiled at Micah and smiled at me. When kids are mildly affected people tend to stare in order to try to “figure it out,” or at least that’s what I’ve told myself. With Micah in this cart, it clearly marked him as disabled. Voila, nothing to figure out. Also, people got out of my way and apologized if they got in my way. This wasn’t necessary but it felt courteous in a place where I am used to feeling judgmental stares while my child is wailing and trying to hit me or flopping around on the floor. Micah was proud and excited that the store had a special cart for him. He felt accommodated. He felt important.
And I felt like a good mom.