From the passenger seat of the car, da Creature says “Link needs to win the mini-game so he can give stamania to the…” (google “Skyward Sword” if you for some reason don’t know who Link is)
I, from the driver’s seat of the car correct him mindlessly, almost robotically, intoning “Say it right, you know how to pronounce it…”
Dejected little voice whimpers grudgingly “stamina.”
But, upon reflection, I wish someone could bottle that other thing–stamania. I’d buy that. In my six hour reprieve from being da Mama (really, reprieve? you still have chores, and money to tend, and the large husband shaped Aspie to refocus, and work stuff that followed you home, and taxes, and an endless list of things you could not get done because you were taking care of/teaching da Creature….) I often contemplate stamania. I have even evolved a definition of the word:
stamania–n. 1. the required mind/body attitude which accompanies the purposeful, rabid pursuit of a goal. 2. amplified parental fatigue, which induces the belief that you can simultaneously cook dinner (or do anything) AND deal with your child’s sensory issues.
When I am especially pressed, stamania comes in handy. You see, not only do I have an SPD/Aspie child who requires ALL my senses when he is in my care because of the unpredictable nature of the danger that he is inexorably drawn to, I ended up in charge of all the unpleasantries of life so that his father, who is just like him, can go to work.
In what was an epic, primetime-tv-quality tragicomedy, my husband and I tried all the various permutations of “shared work” for the unpleasantries, but to no avail. What my husband really needed in order to be successful in life was someone who would take care of everything for him that wasn’t WORK, so he would have the energy/focus to earn a living and do a good job at it. You see, Asperger’s syndrome allowed him to become an engineer and a mathematician, and that’s really all he can manage. After our initial three years of dreadful life-negotiating (you know, the first three years of marriage are always a surprise of negotiation and compromise, but imagine my shock to have married Sheldon? [now you must google "Big Bang Theory"]), we decided that I would devote myself to life business and raising children, and he would go to work.
So, now I need stamania, just to get through the endless parade of days. And no, that is not some creeping resentment you hear, scraping at the barely perceived raw edges of my life, it’s actually the soft sadness of real understanding of how life is for both my son and my husband, and the realization that I MUST persevere, because doing so may save them both. What my husband was not afforded in life as a child, I can provide for my son. I can readily observe outcomes in the laboratory of my marriage and deploy long term solutions to my son’s life (OT, PT, SPD therapies, and compassion) which were unimaginable for my husband, you know, back in “the day.” I can also tinker around with my own radical ideas about how to prevent what I know is coming.
But it means that my six-hour-school-days-only respite has to suffice. In it, I must attend the business of life for myself, my grown husband, and my child who, during those six hours, must also be protected FROM the very school that allows me to occasionally have a cup of tea and type a blog post.
Each day, each week, each year I grasp at both ends of the rope, mitigating the 47 years of destructive effects of Autism and SPD as best I can for my husband, and forging a brighter future for my son.
da Creature may have said it best all along….what I require to be da Mama, is not stamina, it’s stamania.







Comments
Eden
Wow! I think I live with a clone of your son. He too will be 8 this May and carries the diagnoses of Asperger’s and SPD, (as well as anxiety and a touch of OCD just for fun). He also makes up his own pronounciations of words not yet in his spoken vocabulary. We do not need to travel 3 hours for OT but the public school here is failing him and we may have to travel almost 2 hours to get him to a proper school. My husband is not diagnosed but the apple didn’t fall far from the tree in my family so I understand your frustrations very well. Stamina? There’s never enough!!! Thanks for sharing.