because i get constantly get phone calls from school telling me he tried to stab a teacher with a pencil or that he tried to cut himself with a pencil sharpener blade or that he’s mad and can i calm him down. because he asks me so many questions and has so many issues and arguments that by 7:00 p.m. i can’t even remember what i did earlier on in the day. because he goes to school every day and his best friend is his teacher. because his remorse and sadness is sometimes too much for my weary heart. because every day i’m pretty sure God could have chosen someone better. because i spend all day frustrated and all night feeling guilty. because i’m at a loss for how to help my child. because in this captured moment, my heart melts, and i can set aside my fears and frustrations and simply see a human being…loving his cousin…needing desparately to be loved. and i’m pretty sure God gave him to me more for my sake than vice versa.
I have wanted to publish a book for a long time… not a book with words or even illustrations. Just a book of photographs. I would call it, “The Many Faces of Autism.” In this book, I would chronicle what autism in our house looks like on a day to day basis – the good, the bad and the ugly.
Most likely, I will never get around to a book of any sort. But as it is Autism Awareness month, I’ve felt the need to do something to honor Autism, honor Grayson, and honor our journey that we’ve been on together. I have put together a mini sampling of photographs (click on photos for descriptions). Maybe this is something that only a mother can appreciate. I really don’t know.
What I do know, is that sorting through these pictures has resurfaced so many emotions – sheer joy and pride, and grieving all over again at the hard reminders. I remember the early fits and craziness, countless doctor appointments, and the constant helplessness that never left my side. I remember peeking through the preschool window to see him pulling his hair and rocking, all of his frantic fears…plastic bags and umbrellas in the wind, the fear that someone would eat his food, touch his bellybutton, etc…etc…etc… I remember crying the day that he ate his last Krispy Creme doughnut, knowing that a super restrictive diet was to start the next day, as we tried to heal his bleeding ulcers and bacterial gut infection. This “diet” would kept me up until 3 a.m. trying to figure out what in the world to feed him and learning 1,000,000 new terms for allergens. I remember never being more than 5 minutes from his school and the way my heart would race every time my phone rang. I remember the screaming, sometimes hours on end, and feeling like death would be a welcome relief.
However, in spite of all of the heartache, what I mainly see when I take a bird’s eye view of these photographs is…GROWTH! In the midst of the day to day fits and agitations and 50 TRILLION QUESTIONS, I can easily forget just how far he has come from the little boy that he once was. These pictures serve as a sharp probe to remind me to count my blessings. Sadly, I have gotten lost in my own agitation and impatience. I have started seeing failures instead of successes, and I have forgotten how to laugh with Grayson and find compassion for him in his struggles. I have forgotten that he is funny and sweet and smart and creative! And in all of this forgetting, I have forgotten that although I may be tired, I am not a mean and angry, old and haggard witch (how I feel at the end of so many days). I have forgotten that it’s ok to laugh and smile. I have forgotten so, so much. I have a lot of remembering to do, and quite honestly, this overwhelms me. What if I cannot remember how to get back from where I came? Perhaps I have never even been “there” and need to forge a new path?? But then I think of Grayson and all that he has overcome and become, what we have become together. And I know that I can, and that I will, get where I need to go.
Maybe this is the beauty of photographs. They capture moments that trigger memories. And though not immediately apparent, when viewed from afar, we are able to see that which was missed standing close up. So, without further ado, I am happy to share, “The Many Faces of Autism…”