Friday, April 20, 2012

So what's your disability?

We spend a lot of time at the hospital or hospital clinic which unfortunately (and ironically) doesn’t have any close parking.  We don’t travel lightly. Caden always has his backpack which always has an ipad in it (yes I know ipads are light….until you add a gumdrop military grade drop tech case to it) and it always has an assortment of metal cars as well as the whole collection of Mario plush pets. Then there’s Elf and the backpack for him. The dog is super trained and knows potty on command (something I am still fascinated by) but a long day in the therapy clinic or hospital could yield an accident and we have a responsibility to be a responsible service dog owner—trust me people are always watching and looking for a reason to negatively judge. And of course I usually have a purse or cellphone and wallet. In case you are wondering Caden doesn’t appreciate nor tolerate his stuff in Elf’s bag or Elf’s stuff in his bag or my stuff in either bag because well in his autism world that just isn’t where it goes. 

This scenario goes one of several ways. On the ideal day we are able to double team and one person gets Caden out while the other gets Elf and the stuff. But we have these pesky little things called jobs and a daughter who has an insane social schedule so we rarely are able to travel in pairs to appointments, therapies, etc. On a great day Caden plays the stay inside the yellow parking lines game well while I get the service dog and stuff and we all head through the parking lot, across the busy intersection, and down the side walk. If we are going to the hospital or therapy department we also have to cross the delivery truck entrance and the hospital drop off/pick up intersection. Not trying to bore you here…I need for you to see what a trek it is to get from the parking lot to the doctor’s office or hospital office and all of the potential for danger because it becomes important in my next sentence or so. In the world of autism the one predictable variable is that things will be unpredictable. We are at the clinic/hospital usually several times a week but if something is off at school or he is nervous about an appointment or something I haven’t even realized yet is causing excitement or anxiety, then the parking lot becomes very overwhelming for Caden. 

See the thing is Caden has NO idea that moving vehicles are dangerous. His autism is literal and usually experienced based. He is terrified of getting his hair cut because he has had his ear nicked before and he knows the noise and feeling is painful for him. He hasn’t had a negative experience with cars; he hasn’t been hurt by a vehicle. Therefore walking or running in front of moving vehicles doesn’t seem dangerous to Caden and most of the time his autism allows him to ignore that they are even there. On a recent visit to the pediatrician’s office he didn’t stay between the yellow line and the car. Cars were parked really close and I was having trouble getting Elf and the bags out of the car. I needed both hands and in that split second out of the corner of one eye I saw Caden run and out of the corner of my other eye I saw the car coming around the corner. Caden ran right in front of the car but thankfully the driver was moving slowly and was able to stop. Caden still doesn’t understand that he was in a dangerous, even deadly situation, but the driver and I both went home a little grayer for the experience. I wish this were an isolated incident but it is a part of our autism. Elf is trained to tether and he does his job beautifully but it still takes a moment or two to get everyone out of the car.

Talking to the pediatrician that day she encouraged me to apply for a disability parking tag through the Department of Motor Vehicles. In Minnesota there is an option for individuals who need to hang onto someone to walk or need to be held onto. While autism isn’t clearly defined, the criterion clearly applies to Caden so we applied. Let me be very clear about something—this wasn’t a black market tag or forged paperwork. We completed two rounds of paperwork that required documentation and signatures from the doctor’s office each time before we were approved.  

Today was interesting. First Caden received his first mail from Driver and Vehicle services (the tags are clearly in his name—if he isn’t with us, the use of the parking permits is illegal--plain and simple). Second I shared what was clearly great news with a friend. Their reaction was stunning. I spent the next 10 minutes receiving a very long lecture about disability parking permit abuse. There were a lot of references to Walmart thrown in as well so maybe if I don’t use the hang tag at Walmart we are okay? I love to park further than we need to in order to get a little extra exercise. I don’t particularly like anything that draws extra negative attention to us. It would seem that anyone who really knows me knows that there is no chance that we will abuse this parking permit. At the same time I don’t understand why this person couldn’t see that this permit just might help us save Caden’s life. This permit, a piece of plastic, isn’t going to stop the parking lot situations but it does move us closer to entrances and reduce the bolting time and opportunity. Ironically this same person would never question the permit if we had requested it for our daughter who is at the moment on crutches. 

I guess the difference and degree of acceptance comes down to visibility. Autism is an invisible disability and what people can’t see they either ignore or refuse to acknowledge. Visible disabilities are much more in your face, harder to ignore or verbally dismiss. I have often said that I wished autism came with a flashing neon sign that pointed out that Caden can’t help the way he acts sometimes, the way he communicates, or the things that he can’t do—that’s all autism. I had hoped the really large black service dog would serve as that neon sign, but in more instances than not people think it is commendable that we train service dogs…..sigh. I thought about invisible disability shirts but we can’t wear the same shirt every day. I wonder if one of those blimps is affordable—maybe we could hire it to follow us around with a large sign that simply stated Don’t judge, not all disabilities are visible.