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| pensive at sunset |
At the end of a day of playing with clay Graham joined us for a boat ride on the big pontoon boat. As the evening ride came to a close, I noted that grandpa forgot his offer to Eli for a chance to drive, he's tired i thought and distracted by my ruff housing with Graham to redirect him from his itchy boy bits... I lost my hat overboard and failed in the attempt to retrieve it... no biggy as it was not expensive and don't spoil a lovely twilight cruise over such a minor thing ...I notice my folks don't enjoy the pensive moments on their lake as I wish they could... the thoughts darting thru my mindful filters.
Dismounting the boat now tied to the dock, Graham requests more clay which requires digging it up from the lake bottom. I say "no more clay today"; before I can add, "bed time now and clay tomorrow", my tired, disappointed boy runs to the far end of dock and begins to jump up and down and whine loudly as he is overcome with frustration. I grab the garden shovel to put away(reinforcing my 'no') and he gets louder, bouncing himself higher on the metal dock; he wants my attention. I determine he is safe where he is 80' from me at the far end of the dock; thus I follow the 2min-ignore behavior support practice his behavior team has in place. Grandma, in a micromanager command, begins to yell at him to stop and come back. She directs grandpa to go get him, so he throws the boat cover down and marches after Graham, escalating his anger in every step.
As grandpa meets Graham, I see the affect in his face change from upset about no clay and fleeing to the end of the dock at my 'no', to shock, panic and then fear. ( fight or flight is the base line of processing thoughts by autists; my parents don't recognize this). He takes a firm hold of Graham by the arm and escorts him back to shore. At this point grandpa is angry in his determined, rigid body language (Graham reads body language very well, much like a horse uses it to measure their safety/trust with a person): at graham? at grandma's orders? at being interrupted in his boat-cover task? that Graham may throw post caps into lake? Who knows, but this act of non-compliance was not from a bratty point; it was non-compliance from a frustration point, Graham can not speak well, once he filled with fear (grabbed forcefully) he was consumed with flight or fight...he could not flee, so he chose fight. Full of fear not disrespect, he hit out at grandpa once on firm ground of shore. (smart enuff to wait til he was sure of his footing, I thought). Grandpa escalates in anger, and rebukes with angry words. Graham is in tears, I am silent and I walk him into the house and we stay downstairs. If grandpa had known to command him to "sit down, calm down, hands down" while at the end of the dock, he would have said it and Graham would have complied. If grandpa had known to ask him, "what do you want" Graham would have said, "stop" when he was evading the forceful grasp. But grandpa didn't know; he went to his default behavior...might.
Back in the house, as he sits on the bed with me, both of us choking back tears(i'm thinking what just happened here?! will this be a lasting trauma?), my silent son relaxes and begins to giggle... relieved to feel safe? to be with me? to be understood? someday he'll tell me. If nothing else, this exasperating three minute incident was so clarifying to me:
*he must have total supervision when he's in the bigger world (to prevent his mischief, yes; but more importantly to protect him from being misunderstood and maltreated by others, any others)
*so the behaivor support plan can be followed and help him grow socially appropriate skills and use words rather than fight or flight. When grandpa got physical to get what he wanted (Graham's compliance), he unintentionally modelled 'might is right' solution for Graham, on Graham. Grandpa did the only thing he knew how to do; the baseline of his generation's oppressive social skills. This is exactly what we've been working so hard to avoid. We want him to learn to use his words as a preferred behavior when he is dis-regulated. Once Graham learns that physical reaction is an option, how will we unteach it?
* his grandparents' (and plenty of others) perspective in this, is one of gloom and doom. They see me as unable to control him, too frail in my own illness (they don't get that we strive to teach him how to control himself), they feel he is hopeless and should be institutionalized (they are not in our world of empowerment, AT, behavior supports, consistency, rehearsal...they are not in the world of autism)
So i am in a corner...how to defend my son in a way that affirms his progress, his desire to comply, his processing delays, that his difference isn't less. How to respect my generous parents and encourage their relationship with him. He does not have friends, no invites to sleep-overs or parties....family is the center of his universe. Many typical people will perceive him as spoiled, over accommodated but they don't have a grasp of the big picture for him in terms of crafting well practised acceptable behavioral communication for meeting their expectations. This puts Graham and others like him, at risk of trauma; not because he is a danger, but because he may choose the default of flight or fight when he is overwhelmed and that will put him into danger at the mercy of others.
The whole thing was heartbreaking to watch. If family members don't understand his baseline affect...how will anyone else? I often leave any 'public' (aka not Graham's familiar environments) feeling so drained from trying to help Graham meet them where they are at, when they can not even perceive where he is at. My son is not the problem, his autism is not the problem; it's a dysfunctional, might-is-right, hasty world densely filled with rigid expectations and inflexible limits, that he must navigate, that is the problem.
My autism battles with Graham are nothing compared to the autism-ology wars out there. I call it a war, as all parties need to see the perceptions of the other before 'peace' can be found. In his 13 years of being my son, ten of those as an autist, he has taught me so much about being human and 'what is good for autism is good for everyone'.
how to live autism ~ the fine print in autism-ology:
Blessed are the flexible for they don't get bent out of shape...
be nimble in your expectations
don't assume a situation is out of control because it doesn't meet the 'normal' expectation
Baby steps are still steps... the power is in the process
Nothing for us with out us...ask if we need help before barging into the process
Different isn't less...adopt a 'works' or 'doesn't work' attitude and omit right v wrong judgement from your mindset
When one person's expectations exceed the other person's limits, conflict ensues...feelings are information, not instructions ....learn from that
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| joy riding the twin tube(Graham & Eli) just like his cousins |
luv, peace and love (my happy place) ~ el
