Some days autism gets to me.
Like this picture for example. It was taken yesterday, a Sunday, in the early afternoon. This picture bothers me for three reasons: 1) Brandon is seventeen years old, 2) Seventeen year-old boys should not be in bed on a Sunday early afternoon, and 3) We should be just getting back from church, we should be about to have a nice Sunday meal together talking about church, the week ahead, and so on.
But no, it's not often, if ever like that with "our kind" of life with autism. Brandon was found that morning under his bed jerking & twitching. We didn't get to go to church. He was in and out of bed the rest of the afternoon, barely eating, let alone sitting down for a family meal. Some days those horrors outweigh any heavenliness of how peaceful and Angelic he looks laying there with his hands tucked under his head just so. Just laying there. Not sleeping, just laying there. Not talking, not humming, not laughing, not crying. Just being. I don't know what he's thinking. I don't know what he might want. I don't know if he's sick or if he's hurting. I'm his mother. I gave birth to him, I nurtured him, I've done everything a mother knows to do for him. I've cared for him, I've spoken for him, I've fought for him. Hell, I've even traveled all the way to Washington, D.C. to attend rallies for him. Yet on days like today, I feel I don't know a thing about him.
Yet on days like today, even though I know I've spent every last dime I've had in doing everything I possibly could to help him, when I see him laying there like that, despite all I know I've done for him, I feel I've done nothing for him.
I wonder if any mother outside of my autism circle can comprehend what all that means. I doubt it. I barely comprehend it. But each day I must face it. Survive it. Thrive despite it.
And I do. We do. How? Hopeism.
That's a word I use a lot. A word I first heard from National Autism Association in their campaigns. Where every other group was making a business and comfy living in the name of speaking for and being the voice of autism - this group, NAA, they were actually doing what no one else was.
Helping. Giving Hopeism.
Hopeism...
That word that didn't seem to exist when my son was diagnosed fifteen years ago. Armed with a new diagnosis of Autism, I was so naive about autism that I thought knowing a name for what my son had, was the cure. That all would be better because there would be treatments for it. Little did I know that innocent-enough word would have a lifetime of searching, struggling, isolation, discrimination, advocating, attached to it.
But even though I didn't know that word, I guess hopeism to me was just making it through another day, taking another breath.
Hopeism eventually got easier. It became not taking "it's just autism" for an answer about anything biological that was wrong with my son... be it diarrhea, seizures, behaviors, etc. It was the raw determination to find the doctor who would think outside the box. It was spending hours upon hours on the internet reading medical abstracts until I could graph blindfolded any metabolic pathway or cycle and win any medical terminology spelling bee despite never having been to medical school.
Though all the autism battles I've since fought, I've learned that while hopeism doesn't always win, it never, ever loses.
In the myriad of unsure things about autism, for that I'm sure.
Victory has been given a new meaning. Accomplishment a new look. Ones worth, a totally new concept.
Hopeism for many of my friends has meant a cure. The removal of that autism mask that their child has worn for so long to where they can now live and work independently. Hopeism for me has not meant a cure, but rather a progression of improvement in all the ways he is affected by autism, to where while he will always need supervision and direct care, he will be happy. He will still be making progress to reach the highest level of independence and potential he can. Hopeism for others lies somewhere in between.
Through the abundance of good days in life with autism, hopeism is simply hope. That faith, that belief, that all things happen for a reason. That love for our child that spurs us on, that fierce desire we have as parents to do more so they can achieve more. That joy that comes in our life and overshadows any hardship and obstacles our children must endure, that enriches us, grounds us, and betters us.
And on the days, weeks, months, -- for us this past year, that my own son has been going through trial after trial, laying in bed on a Sunday when he should be jumping on the trampoline, -- and people ask how I get through it; I reply that hopeism is sometimes simply hanging on to the hope that there is hope.
That things will get better. That prayers will be answered. And even when things don't get better and prayers aren't immediately answered, it's still hanging on to the hope that they will.
Hopeism is saying we'll try again tomorrow.
It's praying one more prayer.
Hopeism is never saying never.
It's never quitting.
Hopeism is my faith, my family, my friends.
It's all the positives that get me through all the negatives.
Hopeism is my Lord & Savior Jesus Christ.
It's my Brandon.
Michelle M. Guppy
CamoMomTX@gmail.com
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