A Parents Challenge of Embracing Peace and Acceptance
“I have accepted that there is not something. I have accepted that I tried everything and nothing has worked. I have accepted this is what it is. This is our life. Everyday. It’s our version of normal.”
I said that in early 2015 and meant it. I had accepted, but was still sad about it. Since then, on multiple occasions, I found myself questioning the depth of my acceptance. How many more times will I face that same decision of acceptance as our lives continue to unfold?
As Many Times As It Takes
The process of reevaluating expectations is continuous and always will be. However, I am learning that sometimes, acceptance can come with peace, but without the sadness.
The Latest Introspection
These things I know. Having multiple disabilities can have serious educational ramifications. Autistics are usually visual learners, but Jessica is blind. Blind people learn through listening and through their hands, but Jess has seriously impaired attention span and impaired fine motor skills. Her extensive vocabulary and good receptive language skills are paired with difficulty in expressive language. Add constant and severe anxiety and that is a rough sketch of what we have dealt with.
I always understood that the situation was complex, but I never thoroughly grasped the depth until recently. Apparently, Jess is THAT different. THAT unusual. Recently, a case worker in the field for 20+ years expressed surprise that Jess had ever been placed in a day program and commented on personal observations of the unrelenting demand that is Jessica.
However validating that conversation was, I needed to hear it again to really believe it. Years ago, another professional who knows Jess had told me that in 40+ years he had never seen anyone like her. Having a ‘new’ perspective on the subject, I asked again, “Is Jess really that unique?” Without hesitation, the answer was a resounding, “Yes!”
An Enigma
After 29 years and so many failures, when trusted professionals state outright that my child is the one of the most unique special needs people they have encountered, should I finally buy in? I allowed myself to listen this time. Hearing it stated so definitively took me off guard. It sunk in.
Does that mean all of those upsetting events, all of those years, my expectations were too high? I had expectations that Jess would have a job and go to work. That is why she learned about appropriate work environment behavior in a classroom lab. Belief and true potential is why she volunteered in a nursing home, and worked with vocational rehabilitation. Truly, up until a year or so after graduation, I still believed she would accomplish something big, not that I would be forced to give up my job in search of a new solution.
Would it have been better if over the years more professionals had emphatically conveyed to me that she was an enigma? Would I have been better prepared for complete failure? Maybe it would not have been considered a failure because of lower expectations.
Why does it feel like failure, or even giving up, each time I find myself starting to adjust expectations again? Probably because of broken dreams. Maybe it is also partially because over the years, I have been occasionally accused, even blamed, for contributing to my autistic daughter’s challenging behaviors because of my adjusted expectations for her.
But why not adjust expectations? Anything else would be counter productive and never-ending heartbreak. Besides, adjusting does not have to mean lowering. On the contrary, I had high expectations for Jessica and advocated fervently during her entire school career.
The Good Adjustment
Does it take running out of options to find the answer? Two years have passed since the devastating realization that none of our efforts would succeed, not even a day program placement, nor the ability for independent self-care. The only option left was to self-direct the waiver.
Because of that, Jess now has a good staff, a good routine, and is getting out of the house and into the community at least 4 and sometimes 5 days a week. She is much happier and with her steady, established schedule her anxiety issues are showing improvement. When Jess is happy, we’re all happy.
Life is calmer and less stressed. There is enormous value in this. Our days seem more family oriented. I feel healthier and can think clearer than I have in years. It is a great change from the days of wondering how we were all going to make it through each day safely and without losing a job. This is much better.
This time, I don’t think it will take long to adjust expectations. Whether failure or win, I am trying to stop reaching for more or expecting something different. Is that giving in? Giving up? Maybe. But I feel I am very close to truly welcoming peace and acceptance.
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Sweet Val, I have never known anyone as strong and determined as you, both as a person and a great mother! I feel when the right time is there, we Hear. Love you and your family. Aunt Sue
Thank you Aunt Sue! Love you too!!!
This snippet from Anne Lamott really spoke to me:
I thought of a great title for a book: What I Think You Should Do: The Road to Happiness.
Perhaps you think this makes me sound a little controlling. Hah! Nothing could be farther from the truth. It’s just that I have some good ideas on how everyone could change and proceed, in order for things to make more sense, and for everyone to have better self esteem. And for me to be able to relax and savor this life.
The chapters would rang from which medications I believe certain family members ought to be taking, and how to convince them to start taking them, to ways Britain can get out of leaving the EU.
Also, how to help other drivers come around to Good Neighbor Driving.
Now, it has been suggested that I and people of my ilky ilk have a disease of good ideas. This is very rude, not to mention hurtful. It is just that left to my own devices, I truly believe that if you give me the details of your life, I have some solutions for you, a path on which you and your awful children and tragic parents can finally begin to thrive.
I come by this honestly. By the age of five or six, in a household with an elegant, erudite form of alcoholism, black belt co-dependence, extreme and unmeetable standards, a Potemkin marriage, huge secrets, and adorable, stunned, high-achieving and very tense children, I was expected to help keep the family afloat.
So I did, or at any rate, I tried. I had a caseload–I was mom’s husband, dad’s wife, the dog’s psychiatrist. I raised my younger brother for them, Although it took every ounce of focus and life force, I was glad to do it. Plus it made everyone like me more.
I believe I was issued a clipboard at six, on which to keep track of my caseload’s progress and setbacks. It was a tiny bit stressful for a fifty pound person with migraines, but I was up to the challenge.
–I agreed not to not see what was going on, as seeing their weird self-destructive behavior made mom and dad unhappy. I got good at keep secrets. I fluffed them up when they were down.
–I became addicted to people pleasing, and to burnishing the surface of things in my family so that we would look fabulous from the outside. I became addicted to other people’s potential.
— I tried very hard not to have any needs or unattractive emotions, as these got me sent away from the dinner table without eating, which I am sure had nothing to do with lifelong eating disorders.
–As the child of an Englishwoman, I developed certain Monty Python survival skills and tics, such as pathological denial, and the conviction that I am right, and entitled to a refund, even when the parrot has died in my care.
So by six, in charge of saving and fixing and burnishing up the family, and–as a sideline–the world– I started to come up with good ideas for other people. I did not hear until I was forty that everyone gets to have their own emotional acre, and do with it as they choose, as they are guided, to spend the days of this one short precious life with which we have been gifted.
I thought that I could–and must– help you with your acre, if it was cluttered or barren, chaotic or lonely. Unless you sat at the gate like Granny Clampett, with a rifle across your lap, I would barge onto your acre, and begin my work. No one mentioned that I was only the steward of my own acre, that it was absolutely all I could maintain. And that perhaps it needed some psychic potting soil, and a watering system; and that contrary to what my parents and teachers had taught me, I did not need to grow perfect, alphabetized rows of salad vegetables, or a festive English garden on which I might hold teas and clinics. I could grow what I longed for; for what fed ME.
No one mentioned until I was in late middle age that–horribly!–my good, helpful ideas for other grown-ups were not helpful. That my help was in fact sometimes toxic. That people needed to defend themselves from my passionate belief that I had good ideas for other people’s lives.
I did not know that help is the sunny side of control.
Maybe I kind of “knew” that it was not helpful to run beside a grown child on his or her hero’s journey, panting, with a juice box, meditation tapes, and some sunscreen. Who can argue with sunscreen, for Pete’s sake?
But now I know that it is defeating and abusive to try and get people to do what I are sure would help them. And this is why I am offering you the great title I thought up, and the clipboard. Please, someone, take them. Because just for today, I’m going to stay on my own acre, even as I venture out for a hike with friends, and then church; even as I donate to great causes, and pick up litter. There is much healing and restoration to be done right here within my own perimeter. It’s a harsh, extremely bizarre world these days, and you know what? I could use some sunscreen and a juice box, not to mention some odd, wild, and rich, touching love. Mine. Today.
—Anne Lamott
My transitional truth has become more of a journey for ME to not try and control everything to MY expectations and standards, and face MY underlying issues with how I so wanted and needed things to be. As I adjust, I find Sam to be much more peaceful and happy overall. Funny how the journey goes both ways.
Jayne, it certainly does go both ways. Jess is most definitely the most content that I have seen her in a long time. That’s not to say she has the perfect “placement”. Her autism and anxiety both are so much more pronounced than they ever were while she was in school, and for that, I AM sad. Watching the regression is disheartening. However, of our options, we have the best thing going and she is happy.
It’s not giving up, it’s achieving clarity. And without all those excruciating “adventures” and without each expectation and hope and dream, you may have never been able to have the clarity…the peace, that you’re experiencing now. I don’t see one bit of failure! I see an amazingly brave and dedicated mama who can say without a doubt that she fought every fight, and explored every possibility, valiantly and with a heart full of love and good intentions. And all those years of hard work, advocating, and trials have brought you and Jess to a place of peace and acceptance. So you’ve done a good thing. And you should be proud!
Thanks so much Becca! I agree that all the effort, trials, and subsequent failures had to happen so that I know I tried everything I could. Otherwise, I would definitely always wonder. What I find amusing is how I keep thinking I’m there, then realize I am not. Maybe this time I am. It is nice to not feel completely stressed out and not be looking for answers all the time.