As I scan the Facebook (yes I’m back on, and no I don’t want to admit it’s nearly impossible not to be) I see a variety of posts and pictures of mothers and their kiddos out getting a mani/pedi, an ice-cream, going to the movies, playing catch, getting a hair cut, riding bikes, you name it, any mother- son, mother -daughter, parent- kid activity we see it on there. The posts and pictures are lovely and they generally make us feel happy but at the same time envious of the ability to perform such normal family tasks.
Inherently these trips come with their own set of trials and tribulations. A typical child may throw a tantrum because they didn’t want to see that movie, or they may drop their cone and start crying, they may even fight the hair stylist because they just don’t want their hair cut. But generally, and I know there are some exceptions, typical kids can be talked out of their tantrum, they can be kindly bribed (if this, then that) and they can understand the incentives behind following what mama and daddy ask of them.
As much as we try, as special needs parents to be a part of this community, it just doesn’t always work out the same. A trip to the movies could involve a screaming kid because the sounds are too loud and hurting a child’s ears. A visit to the yogurt stand might not happen because your child may physically not be able to wait in line. A hair cut most certainly won’t happen, not because the child is being defiant but because they don’t understand that the sharp object coming at them in the mirror, isn’t intended for their neck. Our kids live in fear the majority of the day and that is one of the saddest thing we have to face as parents.
A fellow blogger ends almost all of her posts about her son with his name and then “is brave.” Many may look at this hashtag and think what does she mean “is brave?” Is he brave for the things that he is physically doing in the pictures she posts? Is he brave for smiling at this momma when she takes a picture? They don’t understand the depths of the “is brave” because you have to live it, to truly know it. I believe he’s brave because what may be an ordinary easily accomplished task by a typical peer, it is not for him and this is why when he accomplishes one, he is brave. His standards of brave are much higher as he has to fight these feelings that even his parents and his doctors can’t understand. A special needs child lives life in an environment that differs from those without needs. At times, this can be very difficult for both the person with needs and those around them.
This story reminded me of our trip to Disneyland yesterday. The most mundane ordinary task that can be done at Disneyland is using the potty right? Does anyone dare disagree 🙂 As soon as Bee decided to tell me “mama potty, go, go” we rushed to the nearest restroom. Disneyland has these large restrooms which all have automated flushing systems on the toilet. Now you’d think that’s convenient right? You don’t need to touch anything in there! Everything is hands free! Great right? NOPE! Not great for a child with any sort of sensory disorder. Imagine trying to hold your child on the toilet telling them it’ll be okay, that it’s just a flushing toilet, while 25 other toilets flush and then theirs flushes while on it. Do you think you’d have any success with your child squiggling and crying “all done, all done” without going to the potty. What do you do? Do you let her your child wet themselves and just change them, do you find a bush…what? After four failed trips we finally found a bathroom that didn’t have the flush on automatic. And sure enough Ailbe WOULDN’T go! She was petrified now of every toilet in Disneyland and at this point I was a wreck. I had now left three bathrooms in tears. Our friends had gone to shop and a parade was going on at the same time. Since Ailbe wouldn’t go, we headed to find our friends at the store. Manouvering throughout a parade crowd at Disneyland is a task in itself. With a baby crying, I decided that I would give Isla my phone because she was losing it and crying for “Elsa, Elsa” and at that point I wasn’t thinking clearly and gave her the phone anyway. As we headed to the store and finally entered Ailbe says “icky poo poo mummy.” With this comment I realized it was time to turn around again! Heart racing I rushed through the slow moving crowd with a double BOB no less and found the nursing station. Finally, success! Ailbe’s happy, I’ve stopped crying and Isla had too. I take my phone from Isla realizing that when she was watching Frozen on the phone it wouldn’t be ringing, only to find out our friends have been trying to reach us and have left the park because they couldn’t get a hold of us during that time. It was a super sad way to end the day, nothing on my end was intentionally mean or trying to ruin anyone’s day I simply needed to get Ailbe to the bathroom. From this I learned that when you have a “normal” time as a special needs parents, savor that time and don’t try it again, because the odds of a normalcy back to back are slim!
Long story, long 🙂 A rough day for us special needs mom is not a rough day in the ordinary sense. We can survive “rough” days because our version of rough isn’t real life. It’s that scary version of real life that you hope you never have to encounter. It’s the fearing SUDEP on a daily basis version, it’s the worst case scenario version for most of us that runs through our minds at least one time, per day, every day. Does a mother of a typical child worry about these things once in a while, sure, but a special needs mom worries far too often to feel “normal.” We are a small group, that together understands, but often, we are left feeling like a small fish in a HUGE pond.
So despite yesterday being really “tough”, all I could think was my we’ve been through so much worse than this and this is nothing…
Keep going strong, one mama to another.