With all of the stress that has come with the recent med changes, and the routine from school being put on pause for the summer, it may be worth talking about the pitfall that is all too common and all too obvious. The problem is the same that I imagine people with higher functioning disabilities go through themselves (wheelchairs, etc.). The easy road to feeling like the problems of your life with autism are somehow the excuse for the setbacks you encounter. The reason I think this becomes so common and so difficult to adapt to is because the excuses are deeply rooted in realities. You do have real things that set you back when you care for someone with autism. You do have things you can and can’t do. As for a love life, as a single father, dating gets down right irritating when all these factors come in to play. All of that being said, you can’t make it your excuse. You can’t make it the identity of you and your family. It’s not fair in my opinion and makes the disability a scapegoat for your own downfalls or inadequacies. Does this mean I haven’t succumb to these pitfalls? Absolutely not! That’s the whole point of this blog. To share in my experience through describing what’s happened in our family over the years. Experiences that come from my failures just as much as my successes.
Just like the town drunk that “could’ve been somebody” people look dumb when they make excuses for their outcome in my opinion. With something like this it’s funny because people wont call you out. Much like any other sensitive subject now-a-days disabilities are off-limits. You can’t judge me or tell me to get over it. As a single father of a disabled child (and my buddy Mater 🙂 you can’t really get away with publicly downing me for any mood I may convey. Nope! I’m king of the castle, and if I say my day was awful you have to turn that bottom lip up and show me some sympathy….unless you’re some kind of animal that hates families with disabled children… see my point? That is a difficult power for some to resist.
I go to meetings and events where people with special needs are in groups. Like any other father you end up around the school and get to meet some parents here and there. In my experience the parents are either really involved or not involved at all. Now, I will never knock and involved parent. Your methods are your methods, and that isn’t my business. Nonetheless, in these settings (as compared to my other son’s school) there is always a parent or two that make their child’s disability the saving grace that makes up for their lack of personality or success. Sounds harsh, huh? It’s true though. Maybe that’s their coping mechanism, I really can’t say. What I do see with these types is that they tend to stop taking care of themselves. They show up in sweats for parent teacher conferences, and can’t talk enough about how hard life is on them (not their child). It goes on and on, and they become the center of attention. As cold as I may sound right now, that isn’t my point. The point is that these people don’t always start out that way. But years and years of having a valid excuse that no one will dare question can do a lot of damage. Then you could suddenly find yourself in sweats and a dirty t-shirt telling perfect strangers that life held you back.
So, in my opinion there’s always a better option. I don’t always succeed, but my general approach is that I need to adapt to this lifestyle, and stop focusing on the why. Why I have to change my life goals isn’t going to change; it becomes irrelevant. I can’t start work when most jobs are scheduled to start because there isn’t a daycare for miles that will deal with a thirteen year old that needs diaper changes. Nope! Not gonna get a break because trained care takers cost too much so overtime is next to impossible too. I let that be my excuse for a few years. It made sense and it was easy to support. I have no one at home to help. No one to support me financially. The list goes on. However, nobody would know the name Helen Keller if life was truly allowed to just kick your ass. It’s eventually your choice to make changes and fight back. To learn new skills or trades that offer more flexibility. To work for less money to have the time you need at home when life demands it. To keep adapting and evolving until you find something that does work for your child…. and you.
I would like to write this blog and make it a tool for people to feel less alone in a world that still doesn’t really support or understand the needs of autistic children and families. In ways I think that’s possible. In addition to groups you can meet up with that have kids like mine (or yours) you can get a slight sense of being part of a society that understands. However, none of that changes the fact that when you’re the one in the job interview and you get told yet again that you need to be able to work any shift, or start at 5am… You’re alone. You’re the one that can’t take that job, that can’t get anyone to watch you child. The key to this isn’t to let it beat you but to stand tall, accept it as your problem, and change your situation until it supports your needs. You don’t get to relax as a parent of an autistic child. You don’t get to choose many parts of your life, however, you always get a choice in how you let them control you.