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!”
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.