Tuesday, January 28, 2014

I read an article earlier today about a father with a 9 1/2 year old son who suffers from Autism on a very similar level as Jordan. The part that stuck out most in my mind was when he said "You have to pick your battles". I understand that this is probably common sense to most, especially people that have had siblings or children of their own, but the thought hadn't come to mind.

When my mother passed away and I decided to become my brother's live in care taker, the only thought that came to mind was "I'm going to take care of him, I'm going to teach him, and he's going to be a better person because of it." While these are all positive things that I'm sure everyone has wanted for someone they love and take care of, these thoughts aren't always realistic.

Many people who are Autistic depend very heavily on routine and repetition, they crave it. Adults around the age of 30 become very set in their ways. You combine both of these things and try to stir up the pot, you're asking for a lot of frustration. I'm not saying I'm giving up on the goals I set for myself and him, far from it. But if I can learn to let some things go, I think it will cut down on unnecessary frustration on both of our ends.

So the question is, what do I fight for? There's the obvious necessities such as making sure he eats right, that he practices safe habits such as holding my hand when we cross the street and when we're in parking lots,  and healthy and hygienic behaviors such as washing his hands after he goes to the bathroom and showering daily. There's also social behaviors to take into consideration, such as not screaming whenever we go home after a day of errands or when we leave a restaurant, respecting people's personal space, and keeping voices down when in public places so as not to disturb others.

So what do I let go of? That's the part I have a hard time with. I guess the best place to start would be minor annoyances. When my brother and I sit at the same table, his OCD behaviors kick in and he feels the need to nudge everything on the table until he's satisfied with the placement. Annoying as this can be when I'm trying to eat, it doesn't hurt anyone, and the more I think about it, it's almost a form of self expression.

 I can let go of trying to get him to go to bed at a decent hour. He's a grown man, and comes from a family of insomniacs (myself included). Why fight him on a bedtime as long as he's not getting into the fridge (which I plan to get a lock for) or disturbing others in the house. Especially when his sister doesn't usually go to sleep before three a.m.

I can't kick his compulsion to constantly eat. Food is a very pleasureful thing for him, and I've accepted this. He was always a very fit guy but now that he's getting older, his metabolism is slowing down and he's gaining weight. Since I started living with him again, I've been working on at least improving the food he eats, since cutting the quantity is almost impossible. More fruits and veggies as snacks instead of chips, and home cooked meals almost all day, every day.

Of course there's many other little things, such as flushing the toilet or not messing with his hair after I comb it, but honestly? In the grand scheme of things, these things aren't necessarily important. I think if I can remember to separate what's crucial to his well being, and what is just fine tuning and therefor not immediately necessary, we'll both be less stressed and function better as people. 


 When people talk about someone suffering from Autism, I find they are either talking about a child, or someone suffering on the higher functioning end of the spectrum. My brother Jordan is almost 30 years old. He hasn't spoken a word since I was around 4. I don't remember him speaking to me, but I remember asking my mother if he was ever going to speak again. He never has. I decided to start this blog not only to share my experiences caring for someone on the more severe end of the Autistic spectrum, but because I want people to know my brother and who he is, not only as a sufferer of autism but as a human being.

Jordan needs assistance doing many things everyday people take for granted. Imagine being almost 30 and someone still needs to buckle you in your seat belt because you lack the motor skills. Or having to be reminded every day to flush the toilet, turn off the lamp, not to eat soap.

Jordan finds pleasure in things many people would find boring. He has no interest in T.V., Video Games, shopping for clothes or many other things guys his age enjoy. Instead, my brother loves the way certain textures feel at his fingertips, watching water when he's splashing in the bathtub or the pool, listening to music on the radio (even if he's already heard the same song three times that day), blowing bubbles in his juice, hugs, long car rides...he has many little joys like this in life, and a great laugh and smile to prove it.

Jordan also doesn't exhibit some of the symptoms that other people on his level of Autism tend to do. He's truly one of a kind. Many Autistics have difficulty looking you in the eye, but Jordan makes eye contact with you constantly. He laughs and smiles when he thinks somethings funny, or when he sees someone he knows. He also recognizes people that he hasn't seen since he was a child, as I realized when he saw my Aunt for the first time since the early 90's.

My brother will never get a girl pregnant and leave her alone to raise the baby. He will never drive his car into a telephone pole after a night of partying. He will never steal, and although he's probably one of the most physically strong people I know, he's never raised a hand to anyone except for himself. He's one of the most innocent souls I've ever had the pleasure to know. If the worst I have to worry about is cleaning a little poop off the floor, or him getting into my makeup, I'm pretty fortunate indeed.

I wish to use this blog to shed some light on Jordan's world. He is the holder of the purple crayon. The world is how he imagines it, and we are but people that can't see the pictures he's drawn. I wonder if we could see the reality he's created, if we'd keep pushing him so hard to come back to ours.