Thoughts about sharing about Micah’s and my family’s journey with autism percolated in my mind for years before I finally sat down to write. I wanted to honestly share the good and the bad; to educate, hopefully without whining, about the impact autism has on Micah, our family, and on our extended community. I do not share because I am an exceptional mother, believe me, I am not. I did not sign myself up for this role, God signed me up. It has been without a doubt the hardest role of my life, and I have failed countless times. It has also been an amazing journey, that has taught me to measure success in far different ways than the world typically measures it. What I want to share this month, is that I am just one voice of countless parents of children with autism who step up and into the role of advocate for our children. This group of unwilling members are connected to each other by the invisible rope of autism. We have learned to advocate because if we don’t, our children’s voices will not be heard; the lessons those with autism can teach will never be shared beyond our front doors. We parents/siblings/friends also need to have a voice, to share that life with autism is not the blissful journey some insist it must be, nor is it without moments of joy and celebration. I surely do not have all or many answers, but I hope to give an honest glimpse of the care, compassion, and courage that our family members with autism inspire.
I am a sucker for happy endings, and if I were writing the script of Micah’s life, I would have miraculously found a cure shortly after he was diagnosed with autism when he was two years old. Fact is, I devoted hours of nightly research when he was first diagnosed; asked everyone I knew to pray for Micah’s healing; and bargained big time with God. In fact I let God know I would devote myself to sharing the miracle of His healing of Micah with the whole world (even though I am an introvert) if He would answer our prayers. Alas, God apparently did not need me as his PR rep, as instead of the prayed for healing, Micah has struggled with the most basic of life skills for over twenty five years.
When the bargaining with God failed, I went through times of anger and frustration with my perceived unfairness of the challenges we faced as a family. I remember a time when a mutual friend was excitedly sharing with Micah’s father and me that her one year old already had a vocabulary of over 50 some odd words. She had no clue that our three year old son’s vocabulary was disappearing as her child’s was exploding. She did not catch the look that was exchanged between my husband and me, a shared slice of parental pain that she would fortunately never understand. No, we did not sign up for this journey.
The idea of the blog arose after the bargaining, and the anger, and the pain were put in their proper places (at least most of the time). I wanted to share the lessons learned, to not miss the good in the challenges we face daily. Micah would be a very rich guy if he had a dollar for every time I have told him that he is making me crazy. (Actually his siblings would be quite wealthy as well, but that is another blog topic)! Truth is, although I so want to be a patient loving parent 24/7, however, I probably hit that mark 7 out of every 24 hours. Micah’s autism impacts our lives in crazy, often embarrassing ways. Just join us on a trip to the grocery store and you will get a glimpse. Micah cannot stand to see anything out of place, even if it is really in place. For example, the onion skins that fall off onions and land on the floor below the counter that holds the onions. You probably do not notice them as you go through the produce isles, however, recently on a quick trip to get groceries, when I thought Micah was right beside me, I turned back to see Micah on the floor scooping up all the fallen onion skins and then throwing them on top of the onions nestled in their bags. Given that it was the day before a holiday the store was packed, so there was a good sized crowd of witnesses who watched me trying to drag Micah away from his quest to rejoin the onions. As he is almost twice as big as me, I am sure we created quite a spectacle. I did not see the humor of that unfortunate episode until I was relaying the trauma of that trip to the store to my sister who thought it was hysterical. Perhaps I need to lighten up my perception of personal trauma?!
Yes, the lessons continue and I am sure Micah has many more to teach. Someone far smarter than me once wrote that the level of civilization is measured by how well we care for those who cannot care for themselves. It is the caring that teaches us to see the value in all people, dragging us away from self absorption and shallowness. Far too often, I have been dragged kicking and screaming, but the lessons, though hard learned, have deepened my faith and are hopefully making me and the rest of Micah’s tribe people of deeper value on this life journey.
Jan Lessard Peightell February 25, 2021