We all have people we have turned to for support and information in the days since our lives were changed by the onset of a diagnosis. Some of those people we meet. Some come in and out of our lives in various ways. Some stay and are stalwarts on our journey. Some make an impression without ever physically being present.
How many of us have had a strong reaction to a book we have read about our child’s special need? And I’m not referring to those early days when we pore over countless scraps of info to learn more about the world we have just entered. I mean a work that has somehow affected you on a deeper level. There have been a few such books that have done that for me…and I get to meet the author of one of them in 3 days.
In the world of Autism, there is a plethora of books, seminars, conferences, diets, therapies, theories and other such items for parents to wade through. Often, the ones that offer a personal point of view that I can relate to the best since it offers a connection of a kind. One that really resonated with me was written by the woman I will have the pleasure of listening to this Friday.
A Thorn in My Pocket by Eustacia Cutler was a book I happened upon when my oldest child was still in elementary school and I was trying to juggle his needs with the hefty medical needs of his baby brother. It hit me at a time when I needed the affirmation that there is no manual on my child and if there is, I am the one writing it. I actually read it in chunks while C.—my oldest—was making his first foray into organized sports. As a means of having some form of respite from the medical issues of my youngest—B.—I would alternate attending practice with C. while Dad stayed home with the little guy. It wasn’t perfect; but it did give me a chance to snatch some reading time despite the din of the participants.
I remember reading parts of it trying to picture myself in those situations. Other parts, well…despite the difference in times hit a bit too close to home. I respected Eustacia’s decision to follow her own instincts over many medical “suggestions.” If you are unfamiliar with the book, you must understand that she was writing about a time before Autism really had a name. And if you don’t already know who Eustacia Cutler is…she is the mother of Temple Grandin. And someone I admire.
The book isn’t a fairy tale, it doesn’t provide magical answers, it doesn’t paint a rosy or perfect picture, and it caused me to make sure I always had a tissue handy or sat near the door when I was reading it at C.’s practices. It is said that we stand tall because we all stand on the shoulders of giants; those who came before us and helped paved the way. As difficult as it is some days to continue the good fight for what we believe is appropriate for our children…it is easier than it was for those who preceded us. I hope Eustacia Cutler doesn’t mind my weight as I stand on hers.
I, like others, have second-guessed myself since becoming a parent. That doubt and guilt increases exponentially after a diagnosis. All any of us can do is pursue the path we feel is correct for our child and persevere. The path may change, it may twist and turn…but that is the nature of our journey. I have been criticized by so many people along the way that it is easier to keep track of those who think I am doing the best I can. (It’s a smaller number and far easier to remember.) Despite those “opinions,” I have continued down the path I have paved. C. is now beginning to navigate with me at times, or change the route abruptly. However, it is still the journey we—as a family—are making. The same can be said now for B.’s path which closely resembles the old roads I remember from my Mom’s hometown in Ireland…a short straightaway in between roundabouts. We seem to go in circles more than moving forward.
And I guess that’s why the book meant so much to me. My reading of it was she had to trust herself and do what she felt was best—or most appropriate at the time. It offered me a type of validation for sticking to my convictions and holding true to the vision I have for my boys. And it also reminded me that it is ok to admit that the road isn’t always smooth. There are potholes and rough, bumpy spots along the way. It’s ok to admit that. I really hadn’t come across that before.
So, I am looking forward to meeting an icon for me in 3 short days. Someone who made a difference for me by her willingness to share her story and that of her family. And her story has inspired me to share mine with others and to honestly admit—sometimes there is a thorn in my pocket too. Thanks, Eustacia…can’t wait to hear more.