It's that nasty lil' thing we do--especially mothers--within the autism community. I've written about it here several times in a more general life context. It's a little bit of that ages-old keeping up the the Joneses self-inflicted torture. And, despite the fact that we need to be united more so in our differences amid our neurotypical world, we perpetuate this same false sense of separateness within our own community--both autism and other disAbility communities....We compare.
And that's so unfair. It's unfair to ourselves, our children and our families, but it's also unfair to the people to whom we are comparing ourselves.
"You can say that," said my friend whose son has high functioning autism. She sat on the other side of her her desk from where I stood, having stopped by a few moments to chat. She works with parents more one-on-one whereas I speak, write and advocate systemically. She smoothed her royal-blue floral-print skirt and tucked back her long blond hair behind one ear. "I have to be careful what I say to parents," she explained, sharing with me, in the expression on her beautiful face, the sense of pain we felt for other parents' internal struggles with the autism diagnosis.
We were discussing the subject of that desperate non-ending search for that magic pill or wave-a-wand therapy, the illusion of some fountain of curative potion that will release the strangle hold that some parents perceive autism has on their children and their lives."
My friend explained that she must tip toe carefully among such parents searching for the golden cure because the common attitude and/or retort--and I know it...I have heard it: "Easy for you to say! You're child is high-functioning!"
"You can talk about acceptance," she said to me...."I cannot as easily."
What she meant is that I can talk about the peace and relief of accepting my child's challenges because my child is not high functioning by the damning standards with which we judge and measure our children on the whacked-out scale of typical development.
My daughter, Grace, has moderately severe autism; severe speech-language disorder--rendering her minimally verbal--plus intellectual disAbilities. It is with this more severe station along the wide swath of the autism spectrum that I am challenged to practice acceptance and embrace the totality of who she is with these levels of difficulties.
After my first divorce, I got clear on the revised mission of how I live my life, of my speaking and my writing. A few additional hard knocks came before my only child's autism diagnosis--losing a job, surviving and coming out on top of some challenging health issues. And then more recently, I experienced a second divorce and the loss of both my parents. I used to jokingly say I was a poster child for surviving challenging life circumstances. Cancel that. Now I say I'm a poster child for thriving.
I want my life, my speaking and my writing to reflect my truth: Along this journey we call life, yeah, there are frustrations, loss of expects and tremendous heartaches. But. There is also joy, hope & blessings. I am coming here from the prism of autism with a little divorce, ill health, family deaths and job loss thrown into the mix. Life offers us up a a swirling potpourri. For some it may be cancer, loss of a loved one. Name your struggle...But I know. I KNOW that life circumstances can be transcended by the choice of our attitude. It has also been my experience that those challenges gift us with an even deeper plunge into the goodness of this experience and gift we call life. Adversity can be transformed into opportunity if we can remove the blinding illusions of fear from our mind and exercise the POWER of attitude.
When I sometimes wonder if I am coming off all Pollyanna in this to folks, I think of my friend Dara. I attended three funerals for her family members in about six years time. Her husband. Her son. Her mother. Her son was challenged physically in ways that I have not experienced with my own child. He used a wheelchair for much of his life. He had trouble swallowing and had to be lifted from his bed each day and night. He did not communicate with words and he had significant intellectual and other disAbilities. He lived into his mid-20s. But Dara? Dara was and is a Warrior Mom. She fought for the rights of her child. We owe a great debt in the state of Tennessee to how this woman fought for the rights of all people with disAbilities. And, amid her personal challenges, she found and celebrates deep happiness and contentment in her life.
I'll never forget calling Dara a few weeks after her husband's unexpected death. I can remember the precise location on I-65 South. The far right lane. A cell phone bud plugged into my ear canal, my hands on the steering wheel of my black Toyota Solara. Before me a horizon of scallop-edged clouds kissed with the golden bliss of a setting sun. It was late Friday afternoon and I was taking my daughter to meet her father.
"Dara," I said, "I've been thinking about you. How are you doing?"
"Leisa," she replied. "I've always looked for the silver lining in life." Interestingly she spoke metaphorically of the clouds I could see before me. She told me of the circumstances preceding her husband's death, of how she and her son had moved into her mother's home to take care of her and that her husband was staying behind to sell their house and then join her. In physical space and time circumstances, she had unintentionally prepared for her husband's death and for that she was immensely grateful.
Can one be grateful when life has not performed according to one's expects of it? Yes. Yes, one can. I know in my own life. And, my heroic friend Dara reminds me of that.
So. High. Low. Those damn words we use to persecute ourselves. STILL. Still after all these years! It's not easy for any of us. Wherever we are on this wildly enigmatic spectrum of autism. But choosing that I'm going to embrace "what is"--the circumstances before me--has delivered to me peace. It brought Dara peace. And I have many friends across my city, state and this country who know this truth. They've given up comparing. They've given up wishing and hoping that it could be some other way. It does not mean they don't do everything in their power to help their children. It doesn't mean they abandon therapies and biomedical-supplement regimens, etc. Oh. No. Does not. Absolutely not. Nor does any of this negate the serious hardships our children and our families face with autism. It just means that they've given up the resistance. They've surrendered. And in that surrender comes the peace of acceptance.
This post was prepublished last week. Our WPLN story is here.