As autism awareness month winds to an end, we thought this might be a fitting time to re-post this blog, as acceptance knows no month. Also, see the link at the bottom to view a roundtable discussion that looks at the challenges of living with autism as well as how some parents describe acceptance in their lives.
Will I Ever Find It? One Mom’s Story of Autism and Acceptance
I’m often asked by other parents, when and how I found acceptance of my daughter’s autism diagnosis. It has been twelve years so I have had to think back. I can’t pinpoint a day nor can I offer up a clear plan for how I got there. I do vividly recall in those early days feeling as if acceptance would never arrive.
The first challenge with accepting an autism diagnosis is that it’s hard to know just what you are accepting. I asked Dr. Cowan if she’d ever talk, if she’d be in a regular classroom, if she’d be able to live independently one day? She was just two at the time and he, in all his wisdom, couldn’t give me the answers I so desperately wanted.
Many moons ago, in my impatient need-an-answer-now teen years, my mom bought me a poster that encouraged me to learn to live with the questions rather than chasing answers. I tried to conjure up all the patience and courage I could. But I failed miserably for a long while as I continued to fret over all the “why”, “when”, “what” questions that come with autism. I had to find a way to let go.
In my role helping parents new to a diagnosis as well as those veteran parents who have been doing this for some time, I offer these reflections in hope that there might be some kernel of help for you if you are still seeking what feels to be so elusive.
You can’t do it alone. This was a hard lesson as I pride myself on being strong and independent. I came to see that being strong and independent often results from allowing ourselves to be vulnerable and interdependent first. I looked to other parents and providers for support and found I was far from alone. Many good people came into my life who genuinely cared and helped in concrete ways. To this day, I still count them as a lifeline.
Look for the positives. Early on we put our child under a microscope and focus on the deficits. We spent many years trying to “fix her” and lost sight of her unique strengths. As time went on, while we continued to work on her areas of challenge, we began to focus on who she is – a beautifully imperfect soul, just like the rest of us! We didn’t give up, we never will. But we did surrender to the unknowns.
Build on small successes. It’s said that kids don’t come with instruction booklets. As a new mom to my son, that rang true. With my daughter with autism though, it felt more like there were many instruction booklets, all in foreign languages, and with a fine print disclaimer that said “results not guaranteed”. With each baby step I took, whether it was taking a stronger role in developing her early IEP, feeling more confident that I could handle a meltdown, or more patient when trying a new intervention, I tucked it away for future reference. When the next challenge came, I called to mind the previous success – not just the nuts and bolts “what to do about this” but that feeling you get when you know you can do something. This is building resilience, an important tool for acceptance and healing.
Trust your instincts. You may find yourself on the receiving end of much advice, solicited or not. It can be confusing and overwhelming. You know your child better than anyone and while you don’t have all the answers, no one does. We have yet to figure autism out. If that inner voice talks, listen! If something doesn’t feel right, speak up.
Decide that you and your child will be okay. This became one of my mantras, that no matter what, “we will be okay”. I imagined the worst case scenario I could muster and pictured myself at peace with that. With that perspective, I figured I could accept whatever came our way. Did I feel this way each and every day. No way! But practicing this led me more and more to actually believe it. Today I am sure of it.
Time heals. It seemed sometimes that people wanted me to “be done” with the sadness, anger, disbelief that are part and parcel of grieving. Grief has no timeframe. Be patient with yourself and your child and with life.
Take care of you too. This was another tough one to learn. How could I even think of self-care when my child needed me? I spent every waking moment dedicated to her needs. When friends shared with me their vacations and celebrations, I was resentful at first. Years later, I allowed myself to imagine a vacation, something we had not done since before kids. All I could think of was how wonderful it would be to sleep all night for a change and to be able to shave both legs. I dreamed big!
Reframe what matters. Luckily I wasn’t one who had a well-thought out plan for life. But I can assure you that autism was NOT in the plan. It took time but I began to reframe what “normal life”, “self-care”, “the future” looked like, taking autism into account. Now I couldn’t see it any other way. There was an internal shift in my thinking, and then my feelings, and then my actions. I learned to let go of the “little stuff” and really truly live what mattered most to me. And I can tell you, it was not a sparkling clean house or many PTA commitments or a huge circle of friends or more “stuff”.
Give back if you can. One thing that was empowering for me was the day I felt I had some experience under my belt and offered to mentor another parent. I was afraid I’d say the wrong things but I didn’t let that stop me. I mostly listened and nodded and tried to convey that I cared. Helping others helped me.
You may be reading this after recently receiving a diagnosis for your child. Or you may have gotten a diagnosis long ago. Or you have a loved one whose child has autism. We’re in this together. Let’s lean on each other, okay?
I invite you to share and inspire others with your story of acceptance with the other seekers out there.
Video courtesy Al Jazeera’s The Stream