The frustration of having autism is matched sometimes by the frustration of the parents of an autistic person. It takes so much work, perseverance, and motivation to fight on the bad days or moments when Autismland swallows their child whole. My poor parents say it is remote and far away expressions I make in those times. How I annoy others when I’m in Autismland is a problem.
Choosing to stop or escape is not always possible. My parents or aide have different strategies to pull me back to reality. I exercise or think. They make me do one or both. It helps a lot forcing me to think when my brain is sliding into sensory heaven. It is a struggle between my senses and my mind. If no one helps, my senses usually will dominate when I’m in one of those moments.
Now, I realize I’m no picnic during one of those episodes. The horrible thing is I bug others then, but I don’t change in the way I want because I don’t have the control I need when these episodes occur. Other times I get easy control over myself. It may need lots of training, like sports and music skills. I notice jumping jacks help me reset my mind too. I think the difficulty is the intense OCD aspect. It is hard to resist sometimes. It is scary too to be at the mercy of stims or impulses but I am appreciative when people persevere in helping me regain control of myself and return to Normal-Land.
I watched an amazing movie yesterday called Touching the Void. It’s not a new movie but it is new for me. It tells the true, incredible, epic, survival story of a climber named Joe Simpson in the mountains of Peru. He injures his leg terribly. It is a break that makes his leg unusable. The weather turns bad and he and his partner are exposed on soft snow they can’t hang onto. The snow blocks their vision and the partner accidentally lowers Simpson over a ledge. He is hanging in the air pulling his partner off too. The partner decides to cut the line. Simpson falls into a deep crevasse.
From there I can only tell you he endures super-human challenges. I watched how he did it. First, he focused on what to do, not on how he felt. If he panicked, he re-focused on his task rapidly. He had no one but himself to rely on, but he was thinking constantly, not in self-pity but on how to keep moving forward. One strategy he had was to make small goals that he had to achieve by a certain time. Once he reached his goal he immediately made a new one. This kept him moving forward all the time, but with small goals he could achieve, rather than a seemingly impossible huge goal. In this way, inch by inch, he crawled off a mountain to life.
I couldn’t help reflect on autism when I saw this. Working out of a neurological illness is kind of like being in a crevasse. I see that small, steady goals, an absence of self-pity, and focusing on thought, not emotions, works on that too. Simpson may have survived by true grit but it’s a lesson I can learn from.
Life is hard to predict. Even harder to count on. Since horrible things can happen without warning, I think we really need to live each day like it is a gift.
Inside I get sad and edgy and I know I must fight it. My limitations irritate me so much. I lose myself in rotten resentment. Bad idea. I’m not helping my life in self-sorrow. I stop seeing my blessings in those moments, but I have so many blessings. I just have to notice them.
I may be disabled and non-verbal, but I am lucky too. I have a good family. I am cared for by many people. I have free will to communicate and to learn. I am loving my liberation inside as I climb out of autism’s silence. I am into nature and music. God gives me breathe each day.
Can I feel gratitude for the small miracles too? I must because small miracles add and add and add to a great gift. Living in recognition of our gifts is a weapon against sorrow. Those if us who get sad often must focus on our blessings.
I love delicious food and I’m lucky I have tastebuds to enjoy it. I love water and I’m lucky to swim. I love music and I enjoy it every day. Should I focus only on my illness and feel miserable? No, not ever. We must choose life in the belief we can make it better.
It is easy to make life worse. Hard to make it better. But if our life is precious to God, which I believe it is, then I must see it is an obligation to be good to our own selves as well as others. The belief that it must be perfect to appreciate our gifts is sort of juvenile. I’m hoping to get better at this.
I see some disabled people who fight so incredibly bravely. I am so inspired by their attitude. I see how they fight on and on. I see it and I know it’s not easy for them, but do they really have another good option? There is another option, but it stinks. Anger, resentment, and self-pity are horrible options. I think if we have one chance with our lives, we’d better live to our best in spite of our challenges.