The Roulette Wheel of Life

My dogs lucked out. All of them were rescue dogs and had a hard start in life. One is a shelter foundling, another came from a rescue organization, and our most recent find was a severely neglected, matted, starved, wormy mess my dad’s cousin found in a busy street. Two came to us by chance and only one did we pick, yet here they are. I thought about this because life had a happy resolution for them. They could have died, all three, in a shelter, or in traffic, yet instead they scamper in the yard, hike, and live happy lives. They had luck in the dog lottery of life.

In life we have luck that we can’t control. I mean, I’ve got lots of power to make my life better or worse, but not to stop my autism no matter how hard I try. That is the luck part. On the roulette wheel I got Number Autism and missed all the numbers for the normal brains. Though my chance of getting autism was low, the luck factor landed me there anyway. The roulette game is totally random. It didn’t target me personally. I just had a bad deal. I suppose life has lotteries all the time. I watched a documentary about a girl in India born with a cleft lip whose destitute family didn’t even know that it could be repaired by a relatively simple surgical procedure. She would have looked like that her entire life and would have been shunned, and kept from school, and later from marriage. But the roulette wheel spun for her again and a program in India (the Smile Train) found her in her village and provided her a free surgery, and now she is completely fine and beautiful. The roulette wheel did her one more favor. Of all the kids in India, and the world, with unrepaired cleft lips or palates, she was the one a documentary filmmaker made a film about, which got an academy award that year, and has transformed her life completely. So, luck is a thing I don’t understand, for bad or good. I assume I never will and that no one can, but I hope my roulette wheel will decide to give me some reprieve from autism one day.

Can People Really Outgrow Autism?

This is an interesting article. Is it possible to outgrow neurological symptoms? I doubt it, but I do believe the brain can accommodate some neurological problems in other neural pathways and overcome some challenges. I don't think we can outgrow autism. We just adapt and try our best. What do you think?

Non-Verbal Autism and Assistive Communication Devices

The world of non-verbal autism is changing thanks to assistive technology. When I was small, the best I got as a communication tool was PECS pictograms. For those not familiar with PECS, it is a system of basic needs communication and it looks like this.

In recent years, new devices have flourished. I started communicating on a letter board, a low tech way to point to letters. I still use this method often because it is fast, portable, and if I mess up a board there is no loss of expensive equipment. Here are some types of letter boards.

And mine has a math side too.

Now I have been using a dynawrite also with word prediction and voice output.

Some kids use a fusion,

or an iPad. Recently many non-verbal kids I know switched to iPads and like it. It shows their work in stored memory which is good for school.

The thing is, any method involving letters needs to be taught because autism limits the motor planning to do typing or pointing clearly. None of us learned this skill in school. We all went to someone who had to patiently teach us how to express our thoughts in this modality. Then our moms worked really hard with us at home. The journey to communication is long and hard and starts with the opening of a door.

Dealing with Sorrow

My Oma is very ill now. It is like a waiting game. Cancer is terrible. It destroys people bit by bit. I try to live in a normal way, and at times I forget in the moment about the situation and I’m OK. Then I remember the situation and I immediately become tense and irritable. I think my grandmother is blessed because illness is not the core of her life. It is halting it, but it hasn’t defined her. She is blessed because she is loved and people visit her and comfort her. It is nice to see the relatives treat her with such love. This means she has earned her love, I’m sure, because it is heartfelt, not obligatory. But still I know the time is drawing nearer when we will need to say good-bye. I try to prepare myself because I know I can’t lose control of myself and in autism our emotions take over. It is a big challenge to me to grieve in a normal way and not ride the roller-coaster too fast on an emotional slope downhill. My Oma loved me as I am, and though I know she wished I hadn’t been born with autism, she loved the boy inside and was not stuck on my flapping and my stims. My grandmother is lovely and has shown me how to deal with hardship gracefully. I will miss her lots.

Magic Music

I love classical music as my facebook followers know because I show them music films often. I think it is like God’s voice the times I hear magnificent melodies like Bach, or Beethoven, or Mendelssohn, or Prokofiev, or Debussy, or the many other composers at their best. I wonder why music like this isn’t composed anymore. The era of these magnificent musical gifts is over and we continue to listen to music hundreds of years old. It was a golden time for music that is not here now. What would happen to Bach if he lived now? What kind of music would he compose? Would he even have the chance to create his imagination’s masterpieces? I bet there is a musical genius here on earth now who could compose the magnificent music I love if there was a place to, but instead has to write jingles for ads, sound tracks for movies, or top forties songs. I guess our genius now is in developing technology but I do wish there was more music to soar in the way it used to.

My Book

When I was twelve I did a thing very important to me. I began writing about autism. Nearly every day when I came home from school I wrote. It was like a fire in me. I felt so lost in a way because I lived a life of isolation since I was so limited in my ability to make friends. I felt really misunderstood in my dealings with professionals, and I was the only severely autistic kid in my general education classes. I wrote to help me deal with a miserably hard disability. I wrote to educate about incorrect but widely believed ideas about autism. I wrote about my weird early years in an intense home program that really missed the boat and left me terribly frustrated. I wrote about my journey to communication from total silence, and I wrote to help me accept myself. I wrote on and off for three years. My mom felt my book was really important because it exposed the inner truth about autism. It took my dad longer to adjust to the idea of me being published because I would be scrutinized by everybody and he was wary of biased reactions- something I had encountered so much in my life. After lots of delays, we will finally have a book later this spring and I won’t be alone in my message. I think at least three other books by non-verbal autistic people will be published too. It is a new trend. I am happy I will be part of it. I will keep you posted when I have more news.

It's Not Polite

Today I observed that I am hardly the only autistic person who compulsively grabs food. I got together with a group of autistic friends who are all non-verbal and all communicate by typing. I guess sometimes it is necessary to see others do what you do to realize it is really not okay. I tend to grab appetizing things sometimes, even if it is from someone else’s plate. I know it is bad manners. I have been told this many times, but impulsive behavior is not thinking behavior. I saw that my actions are really not acceptable when I saw others do the same. One mom had a drink that looked colorful. Two kids drank from it before she could stop them. The mothers of the drinkers were embarrassed and I thought, “I do that.” Then another family arrived and in seconds the son grabbed my mom’s sandwich and took a bite. Too fast for her to stop him. At first she said, “It’s okay,” when the embarrassed parents apologized. Then she said, “I actually don’t like it when people tell Ido it’s okay because it’s not. I want them to correct it.” The parents agreed and said that people take more offense now that their son is older, so after that my mom told the boy that he shouldn’t bite her sandwich and it’s not okay to take food from her plate. I think people need to do this more. My feeling is that people shouldn’t excuse our bad behavior because we are disabled. When we are rude we need to be told that clearly and not enabled by understanding, polite tolerance of something that isn’t acceptable. My mom wouldn’t have let a dog snatch her food, let alone a human, but we tend to be too forgiving if people have autism. Don’t worry. We can take the correction.

Exercise and Autism

When I was a small boy I went to occupational therapy. They had me go on swings, hammer pegs, climb on ladders, and jump on trampolines. I remember one occupational therapist telling my mom that I had low muscle tone. In this case wouldn’t exercise, including weights, improve my muscle tone? We worked on my vestibular processing so I went from one swing to another instead of stretching, becoming more fit, or becoming more muscular. The result is that I was not fit enough, which is a problem in a mind/body communication deficit. Being fit enables me to tell my responsive body what to do. I work out with a trainer now because I need to have my body learn to be responsive. Now I see where my problems lie. My soft muscle tone needs to get stronger. My cardio endurance needs to improve and I need more core strength, so I work on everything. Stretching is my most necessary thing and I detest it because it is painful. I will do it because I need to and it is worth the hurt. A lot of my current problems could have been prevented if people had worked on this when I was small. I think it is essential to work on fitness and flexibility for autistic people in a regular program.