Somedays what I do for money isn't worth it. It is too hard. I am someone who has experience and has so much background but I still feel like I can't do it anymore. I am supposed to be here to support a kid who needs help. In a room full of other people seeing me working with a kid and sometimes very badly struggling no one helps me. How am I supposed to keep supporting someone else when in a room full of people I am ignored and no one bothers supporting me?
This is the status I wrote on Facebook yesterday. I wrote this as my forearms were throbbing from being pinched and my body was in a full on anxiety attack. I wrote this as I was trying so hard not to full on sob in the bathroom at work. This is when what I do gets very hard. I work with kids with disabilities. I do one on one, I have worked with groups. I have done therapy, I have done play. Some days I can’t imagine doing anything else. When people hear I have brothers on the spectrum and then they hear that I work in this field sometimes they are shocked. They say “I would have thought you would have wanted to get away from it”. That used to make me so confused. I mean why wouldn't I do this? This is what I know. This is what I am passionate about. This is what I understand. I have all this experience why wouldn't I?
As I get older I am starting to feel less confused about why they would ask. I hate that this is happening. I don't necessarily feel that any of my reasons have changed. It is still what I know. It is still what I am passionate about. I have only more experience than before. Truth is what has changed is that I am tired. I am feeling burnt out. I am feeling beaten down.
I haven't been doing these types of jobs for as long as most people. People I work with have been doing this for 10+ years so what is my excuse? Maybe it is that I thought it would be different. Maybe it's just the nature of the profession. Maybe I am just not as good at this as I thought.
Maybe it is that I may not have been doing this job for as long as others but I have been on the front line for almost my whole life. If you read my last blog post (here) you can see that being an autism sibling can be amazing but it can also be so hard sometimes. So maybe part of me is just being burnt out from the hard parts… I really don't have an answer unfortunately. My life as an autism sibling has changed dramatically as my living situation has changed as has my brother’s. But maybe by working with kids on the spectrum I am being reintroduced to the hard stuff and now that I am older I don't handle it the same. Again I am just writing whatever thoughts pop up as I write, but I don't really know the answers.
Today I write this post having cried again. Post having had a burst of anxiety. I am writing because I am tired. I am frustrated. I am...full on pissed. It is not just about today. It is not about yesterday. It is about what my status said. I is exhausted trying to always be the helper when then no one helps you. It is exhausting taking on so much of another person and then having to deal with that all on your own.
Growing up there were times when it was hard. When I would be hurt by my brother when he was upset or when my things got ruined. When we didn't get to do things that other kids got to do. I thank God for my parents every single day. They were always there. They would never fault us for being upset. They would try so hard to do whatever they could to make us happy. There were also some therapists and workers that went above and beyond and not only did their jobs for my brothers but also made sure to include my sister and I and to make us feel supported too. We also went to a program called SibShop for a little while. There wasn't much else out there for us siblings. For the most part it wasp to my family. And again I say Thank you Mom and Dad!
Now we get to present day. My experience working one to one with kids or adolescents in a supporting capacity can sure be great but some days it's hard. Really hard. Far too often I am finding that people see that I am one on one with a kid and then they just write him or her off. They don't see the need to give any attention to them or us. They figure because I am with him that they no longer have any responsibility. The kid doesn't need to be included, he doesn't need to be further supported, hell maybe he doesn't even need to be talked to. And as for me, my job is to be with that kid which means that I also don't need to be supported, included or even talked to either. Suddenly we become an island all on our own. Why is that? Is it fear? Is it ignorance? I could say it is because people assume I know what I am doing and therefore I can do it in my own but unfortunately I am too jaded to think that way. Sad, I know. When I am crying in a bathroom there is obviously something wrong. So what can be done? Is it more awareness? More training for other staff? Or maybe it is simply a matter of accepting people with autism as people who deserve respect and that they are people who deserve the same amount of opportunities as others. And hey maybe that those of us that support them could use a bathroom break once and awhile. Things need to change and they are. Very slowly. Let's hope for no more tears for a little while right?
Ok rant over… For now!