2/15/2017 ~~~~A few years ago I wrote this after a particularly difficult spell. Since then, there have been the usual ups and downs, and a pretty big hole for a bit, as high school progressed but the good things are SO GOOD! After advocating for nearly a year to arrange for a job internship for my now 18-year-old son it’s happened! He is working with dogs at a great place that is welcoming him with all his uniqueness. He passed a college class last term and is set to attend community college in the fall. He is learning to drive. He is learning to thrive! Thanks to the support of friends, family and the caring educators who see the benefit for ALL when you help even ONE, we are heading into adulthood. The difficult spells are still there. But time and experience are helping us stay on track more often than not. It’s the ride we’re on and we are going the distance.
~~~ By Wendy Pierman Mitzel 4/3/13
Living with Asperger’s can be difficult for me, and I don’t even have it.
My teenage son does, and while he bears the brunt of the high-functioning autism disorder, at times it can take a toll on the rest of the family.
Many days my heart soars for him, other times it breaks a little. He struggles with the disorder that renders him both brilliant and insightful and yet socially awkward. He can present as amazingly typical and yet is ready to melt at the drop of a pin. While discomfort to the rest of us is an annoyance, to him it is a reason to panic. His initial reaction to any stress is fight or flight and so he spends a good portion of his day just trying to maintain a sense of calm and order. He is brilliant and poetic, deep and feeling. Ask me to talk about him and the love and responsibility I feel for him swells in my chest while tears well up in my eyes.
I know that each day he wakes up is another day to conquer an influx of school schedules and noisy lunchrooms and daily tasks that get in the way of his real desires to pet his dog, talk to his twin, play video-games and read voraciously from the comfort of his bed. He has tried to explain before that he sees no reason why anyone would want to leave a perfectly wonderful thing like their home. For him, home means safety from stress. It’s as if he lives his life like a train on a slippery track. When the circumstances are right, – a sunny day and steady terrain – he is spot on chugging along. He can do anything! But throw in a steep incline and some rain and the wheels slide and the gears grind.
There are days where I feel I am the worst conductor ever. No matter what I do I haven’t prepared him for the changes ahead, haven’t guided him to the next step and I accidentally switch tracks without giving him notice. While most of us notice when we are hungry, tired or stressed and manage it with a certain set of coping skills, my son’s brain recognizes the signs too late. If I’m not there to head it off at the pass that train takes a bad turn and the meltdown begins. He regresses to the state of a young child. A simple thing like spilled milk feels like a drenching from Niagara Falls to him. An interruption during his turn to talk leads to a lengthy lecture on the world’s lack of respect for his opinions. And any attempt to rationalize at that point is lost. I have learned over the years to not engage. And while I know other’s have judged me in a restaurant or grocery store I would caution them to take a better look. I have almost never let these incidents run rampant in public. The strategy I’ve developed is to divert his attention to the things that make him laugh. If that doesn’t work then he is removed, reprimanded, relaxed, reset and returned to the situation.
But what most people see is the meltdown. Not the intense amount of work both he and I accomplish to get him back on track.
Aspies tend to prefer extreme consistency. But the world is not consistent and it’s in his best interest, to push a little here and there. My job, therefore, is to gently nudge him into discomfort and teach him to cope. It’s an exhausting role to play. Every morning is a walk on a tightrope. Say the right things and he heads to school ready for success. Make a wrong move and the tone is set for a bumpy ride. On the days where he is angry and inconsolable I do my best to keep him from falling into the abyss, the downward spiral where he believes life is unfair, he is worthless and the world is out to get him. It’s not the kind of despair some of us feel or throw out there on a bad day. It’s an intensity that is crushing to his psyche and mine. When the crises has passed and he is again cuddling with the dog or laughing over a funny YouTube video, I crash and burn – the weight of it all needing a release.
My other kids, as they get older, now notice the stress and often comfort me, adding additional emotion to the situation. He, too, will often come ask if I need a hug, and gives the best squeezes ever. When he was born and fighting for his life, I, too, fought for him to have a chance. Now I work to ensure that chance becomes the best future possible. And at the end of the night, when he is calm and tucked in, when the dog has licked him goodnight, he gives me the best return on investment ever, a hug and a kiss and a chance to wake up and do it all over again.