Eye Opening
After a fairly disasterous hospital visit, I have come to realize a few things regarding how "society" views, or doesn't in this case, people with hidden disabilities. Let me start with we had an appointment with the neurologist. Except we didn't because it had been cancelled. And every single appointment we have had thus far has been messed up. The Dr called in sick and we weren't informed until after we paid our co-pay and were waiting to see them, they have forgotten to call in orders for important tests (EEG), or they have called to change or cancel appointments and the appointments ended up getting messed up. Things happen and I get that, but this has been to the point of ridiculous for us.
That being said, when you are traveling with your child to an appointment that usually is a little emotional, you might as a parent be a little stressed out when you get there. Traffic can be crazy, streets closed due to road construction, can't find a parking spot, and yes, all but one elevator was out of order. So typically any normal person would possibly be a little on edge when making it to the clinic.
When I go to check in I was told my son didn't have an appointment. What?!! They then bring me a print out of the phone call log showing that someone called and spoke to me about it. Why yes, yes they did. When they called me and had to move around appointments that they either had screwed up or weren't even when we had actually beenscheduled. My mistake. It's been a bit confusing keeping up with every change that has been made. I work, I'm a mom, I have a child with special needs... sue me for making a mistake. But please don't come out in front of everyone after making me sign HIPAA law forms and inform the whole waiting room of my business. I'm already anxious from the drive there, now I'm upset because I'm completely confused, and top it off with the "in your face" it's all your fault in front of everyone. Well... now it's time for me to come clean. My son doesn't get his abilities from just anyone. I'm his mother. It stands to reason that if what he has is genetic in nature then perhaps his parents or other family members have similar traits.
Why oh why isn't this staff made aware of this? Or is it that we have become so focused on children with disorders that we forget that they will eventually grow up? Yes, my son will grow up and be an adult with these same disorders. They like to remind me of how there is no cure. There is no medicine. Then for the love of all things good, what makes them think it will magically go away when they become an adult? Is it because it's a children's hospital? I am working hard at teaching my son how to function in a world that wants him to change who he is. I've had to learn how to function in this world. Everyone does, but why aren't we working at meeting people where they are? It's not so simple for someone who has social issues. Who has to really pay attention to vocal changes, facial expressions, etc to understand what the person is really saying because all they really understand is so literal that every conversation can sometimes be a guessing game. Does it stop them from living a successful fulfilled life? No. But it can make things difficult. Especially when you are the one expected to change everything about how you function to fit into societal norms.
I did talk to an advocate. She told me the hospital was learning more about sensory issues and had in the past couple of years taken steps to put signs or symbols outside of hospital rooms designated if a patient had any such needs so the nurses or Doctors would be aware before entering. I think the education needs to go just a little further, but that's another post. Laura Brydges is hoping to help with this. She is the creator of the Hidden Disability symbol. We will be keeping this symbol with us from now on. I have PTSD which involves anxiety and panic attacks. I also have OCD. See, my son does get it from someone. People are so willing to accept him, but will they be so accepting when he grows up? I have had to do my best to hide who I am. I have been told how I have to change. I don't want that for my child.
We have hidden disabilities. Meaning you can't tell by just looking at us. I don't want to hear how you don't "see" or "think" there is anything wrong or different about myself or my child because you can't visually see it all of the time. I really don't care what you think because I KNOW what he goes through. I cherish the times when his disorders don't bother him. It's lovely to see him shine. But he also shines when they are in full force. He has been brave enough to take a stand and not be ashamed of who he is. He is standing up to help others who face these challenges and I have encouraged him because I know all too well that someday he will grow up and become an adult. And adults aren't given the same leeway as children when it comes to these things. With a child we say how brave, we show sympathy, perhaps some actually show empathy. But with an adult it's not so easy. They say get over it, grow up, everyone has problems.
The disabilities we have are neurological in nature. They don't go away. There are things we do to help control them, but it doesn't mean they disappear. My child might someday be that parent in the waiting room. Please understand that you can't expect him to make all of the adjustments. Please show you understand that you work in a clinic where most patients are being seen for disorders that are genetic in nature. Please meet him halfway.
The symbol in the photo is the Hidden Disability symbol. People with brain injuries, PTSD, autism, or any other disability that is not physically seen can use this. It's free for those who want to use it. It can help others understand that they need to be patient, that they need to make accomodations, that they need to be aware. I think it would be great if our hospitals would start using this symbol so parents can have a way of letting the staff know there is something going on that you can't see. We will be working with our hospital to help them adopt this. We think everyone should try and be the change you want to see. We aren't just talking; we are doing.
