Category Archives: autism

Envy Sucks

Posted on August 12, 2011 | Leave a comment

“If I didn’t have autism…”is a phrase I realize is filled with turmoil. If ever I imagine my life as I wish it was I get so blue, so it’s better to focus on what is, not what it isn’t. I have moments when I envy my sister or cousins or friends. I wish I could socialize with ease like they do. I wish I could be trusted alone. I wish I could learn to do things I can’t, like sports or singing. I hope I don’t sound whiny, but I see what I wish all day and it hurts sometimes. Still, I will keep persevering because I am, determined to not waste my life in negative envy. Autism is a challenge I will deal with.

Oscar Pistorius is a hero of mine. He runs at world class speed and he is trying to get into the 2012 Olympics, but the Olympic Committee is trying to keep him out because they say he has an advantage. The advantage is that he has no legs. Ha ha- what an advantage. They claim his prosthetics cheat, so he is struggling against a disability and stupidity, as we disabled people do daily. Still, he is a fighter and I admire his never taking the easy way. He could have sat around moping as a legless kid. Instead he put on prosthesis and played rugby and he ran.

So I guess he had his down moments too. I keep thinking how hard the fight is. I know I have to fight, so I won’t mope. I will see my work to the end, though I realize the end is always out of reach. It’s true my illness is a trial at times. I can’t wish it away any more than Oscar Pistorius can wish his legs back. The solution is to fight envy and deal with what is, not what might have been.

Leave a comment

Posted in autism, emotions, envy, motivation

Cherishing Our Loved Ones

Posted on August 4, 2011 | 2 comments

I was thinking about my grandma. She is a really brave and nice woman. In the weeks since her cancer was diagnosed she has gone through hard times. She had surgery to remove a tumor that was spreading the disease, and she is not young. Recovery is hard and she is getting stronger slowly. I know she is still living with cancer that was not removed so I know she is ill still. I think we need to make time to enjoy her brave and lovely presence as much as we can. We sometimes forget in our troubles and busy days to cherish our loved ones, but when one is sick it focuses this need. I love my Oma. Each time I see her is precious.

2 Comments

Posted in autism, emotions, family

Me, Nick, Sydney and Emma

Posted on August 2, 2011 | 3 comments

I have some friends I love to see. Unfortunately I don’t live near them.I have a long drive of an hour and a half once a month to see them but I feel it’s worth it. Each of us is living in Autismland but we can all communicate in typing and letter boards. Some use i-pads. I use a dynawrite or a letter board. Each of us is living the best we can in spite of our challenges.

We all have very loving families who noticed the potential in us in spite of expert advice that preferred to see us as “low functioning”. Thanks to our parents’ hard work we are free in life. I notice we all have very persistent, positive, and determined moms who didn’t want to give in to a label that told them it was hopeless. The result is that we are their kids in all ways like any other in spite of autism. In this group I don’t have to work on acting normal. I can be autistic with people who are friends, and friends with lovely, intelligent people who are autistic.

3 Comments

Posted in autism, Communication, family support, friends, social behavior

Thanks Cathy

Posted on July 29, 2011 | 1 comment

My friend, Cathy, is leaving me as my aide. I have had many aides in school over the years. I am starting to accept that none stay forever, but I wish Cathy could have stayed for years. In my situation I really need an aide who is intelligent and good at communicating with me. She really assisted me in lasting all day in regular education, in communicating in class, and in doing my work in class. I got more independent as the year went on. It was like a goal I had which she helped me to achieve. Now she moves on in life and I wish her lots of luck in her goals.

Cathy, my wonderful friend, I am fortunate I had your support in school in 8th grade and at home before. Thank you for everything.

1 Comment

Posted in aide, autism, high school, mainstreaming

The Hope-Fulfiller

Posted on July 19, 2011 | 3 comments
I am religious inside like many people with my condition. Autism creates a sort of really deep spiritual connection to God. I see it in many people I know who have autism. My knowledge of religion is intuitive in some ways. I see so many people grapple with faith but I don’t need to. I feel the presence of God and it gives me hope.
In my silent years I was dialoging internally all the time with God because he was filling my lonely days with hope. I saw early that God wasn’t a wish-fulfiller because however much I prayed inside to be cured I was never out of my Autismland. I was sad in the feeling that God didn’t care and I was feeling even abandoned. I was five or six then.
I started to be able to communicate at seven, and it is always getting better. I see I am not abandoned. Now my insights are more mature, not magical. I see God as a hope-fulfiller, not a wish-fulfiller. He fills me with hope and listens to my dreams and my prayers. I think that is for me the most important thing. I mean, if I didn’t have a place to put my hopes, I would burst. 
We in Autismland are socially isolated, and even if we have loving friends and families, it’s not the same as a typical person due to our lonely illness that makes the outside world overwhelming and isolates people from us.  Inside we are imagining our words and behavior and outside we are not able to do it the way we want. Frustrating lives. Sort of alone in company.
Alone is not always bad because I am good at thinking and philosophizing. Here I dialogue with God also, so no matter what I have a companion to sit with me. In a way autism creates a spiritual roadmap, insights, and an awareness of a holy entity that I see many typical, non-autistic people missing. The blindness of neuro-typicals is to miss the spiritual too often, and my blindness is in self control. I guess I have to be grateful for this pipeline that autism has given me to a rich relationship in faith and not just empty rote actions. The isolation is like a monk in a Trappist Monastery, silent but thinking. It’s a sort of quiet relationship to have a walk with God. But I do, and I’m grateful.

3 Comments

Posted in autism, God, spirituality

Autism, Other People, and Discipline

Posted on July 11, 2011 | 5 comments

How do you treat people with autism? In my experience the way people act can vary widely. Some people stare or act like I’m invisible. Others try to be nice. These fall into two groups. First are the ones who act like I am not understanding  anything, who look at me like I’m a species of lower-cognition human. They try to help by talking slowly and giving me high-fives. They are well intended. I am not angry at not knowing and being kind. I do get angry if they know I understand and still act this way.
The other folks act pretty normally around me and ignore my weird stims when they come. I am so relaxed around these people. I do take advantage of the opportunities I get with people who are too understanding of me, however. If someone is not intuitive and I feel they are clueless, I can be a real pain, to put it mildly. I mean, all I need is a weak, sympathetic helper and I’m a strangely obnoxious guy. It gets awful because I don’t like being so stimmy and all, but I take advantage of the opportunity time after time. I laugh now thinking of the hapless substitute aide two years ago, who talked to me like I was retarded, watched me stim without helping me get control over myself, and told my mom I had a “good day” at school. When my aide returned the next day the assistant principal stopped her and said, “Never be absent again.” Ha ha ha. It’s funny now, if not then.
This is true in a way for all people. My history teacher was really structured. The students were sitting and working quietly. It was a really nice class. My English teacher was not good at structure or discipline. The same students were rude and disruptive. That class was more of a trial. The students were mostly the same people. My impression now is that a good leader is essential in teaching and in people who work with me. It’s a true thing even with dogs, or anything. We work on making sure our dogs are not the leaders of our home. I know people whose dogs run the entire house.
In autism, we have impulse control problems. My aide must help me control impulses, keep me focused, and help me function in society. I am improving in self control. Glad about that, but I’ll tell the truth, I’m likely to take advantage of wimpy people and I bet your autistic kid will too.
Hope this helps with the selection of an aide.

5 Comments

Posted in aides, autism, discipline, high school, social behavior

Waking a Sleeping Mind Body Connection

Posted on July 9, 2011 | 1 comment

I work out and I feel a lot better. In truth, I feel like my body is waking from a slumber. In my doing jumping jacks or knee lifts I teach my body to respond to commands. In the strength exercises I gain muscle power. In the cardio, I get healthy. It used to be horrible. I had soft muscle tone, according to my old OT. In reality, I was out of shape. I was mostly bored in adaptive P.E. I never had exercise, just drills. I needed to teach my body to listen and I needed exercise to do it. I’m tall and big-boned. If I wouldn’t have autism I’d try out for football or rugby or something like that. Now I have to be content waking up my sleepy and long slumbering response system, and doing what my body needs to wake up even more. Staying out of shape is not for me at all.

1 Comment

Posted in autism, body responsiveness, exercise, sensory system

If Dogs Could Talk

Posted on July 8, 2011 | Leave a comment

 Well, I have seen that lots of people have already watched this  film, but I liked the vocals and the dog’s urgent, pleading expression. So, in case you missed it, it’s here for a laugh. My own dogs communicate so much in their eyes. By the way, so do non-verbal people if you take the time to notice.Imagine how you would communicate in your eyes if that’s all you had. Dogs can’t talk in our way, and they have no hands, so I guess they need a lot of soul in their eyes.

Take the time to look at non-verbal communication. It’s telling you a lot, I can assure you.


Leave a comment

Posted in autism, dogs, humor, non-verbal communication

Interesting New Autism Study on Autism and the Environment

Posted on July 7, 2011 | Leave a comment

 A recent study links the cause of autism to environmental factors. Now is the time to figure out the cause of autism and how to treat it. If the research helps, I would be thrilled.

More information on the autism and environment research

Leave a comment

Posted in autism, autism causes, autism research, environment

Thanks to My Middle School

Posted on June 30, 2011 | Leave a comment

The middle school I just graduated from was big. The procession in the graduation went on for about twenty minutes. It was the longest parade of students in suits or fancy dresses and high heels. The graduation meant a lot to me because I earned it. I thought about my journey to this point. I think I need to say thanks to the school.

In my education, I never had the chance to show my knowledge until middle school. It was the first school that accepted me as a student who could learn at grade level. They accepted me as a person who was different but not who needed to be kept from regular education. Each year got better and quickly became a full day of mainstreaming. When  I started I wasn’t sure I could do it. Now I know I can. I am starting high school with the knowledge that I did well in middle school.

My teachers were taking on a new kind of student. Classes were humongous. I got minimal individual attention. Classes were interesting or boring, like any other student’s experience. It was normal boring, not a mind numbing denial of education boring. I am grateful to my middle school for that. Some teachers understood me and my situation better than others. Some were not very insightful at all. Some were open-minded and some were probably annoyed to have a disabled student crowding their classroom with an aide. The truth is, they all gave me a chance. Some people really never have this opportunity. It was hard, but a great thing to learn and be part of regular classes.

I think some people were amazingly helpful so I want to to acknowledge them. First, I want to give special thanks to my wonderful aide, Cathy, for the patience of a saint, her lovely disposition, reliability, and wonderful communication skills. I also want to thank Mr. Miller who was always the problem solver and support I needed in administration. Last,  thanks to Mrs. Johnston who in a short time became a huge help to me in my journey toward high school.  The rest of the teachers deserve recognition for putting up with me. Ha Ha. 🙂

Leave a comment

Posted in autism, autism education, high school, mainstreaming, middle school