For over 7 years, I was the author of an anonymous and private blog titled "Once Upon a Snowflake." I came to write at this space daily, sometimes even several times a day. I think some of my best writing was in those early years, when I wrote to basically preserve my own sanity. It was at this place I tried to sort out my worries about my young kids and understand what my son's struggles meant for our future. I wrote about how special needs pervaded our lives, financially and emotionally, and how scared I was. I also recorded sweet and precious moments, interesting and hilarious exchanges with my boys, and uploaded so many drawings and pictures for safe keeping. Of course, I especially celebrated our victories, however small. 3602 entries, I wrote!
In large part, I wrote privately because I felt our struggles were this big secret I couldn't share with anyone else. I feared being judged, misunderstood, or better yet, the product of another's schadenfreude. I also felt extremely protective of my son, who I worried would be dismissed in just one word that begins with the letter 'A,' a loaded word I could not bring myself to even utter in those early years. And yet I had to put all of these heavy thoughts swirling constantly around in my head somewhere, and share them - even if with just myself and a few select others. Slowly over the years - with unwavering encouragement from my husband to not be so concerned about appearances - I did learn to be a little more open. Slowly. Reading other people's stories had helped me immensely over the years, maybe I could return the favor in sharing....
Today I come out of hiding, so to speak, and share the very first entry of "Once Upon a Snowflake." It was written on my children's first day of school in our new town I dubbed "Sunny Patch". We had just taken a chance - after a year of research - and moved for the good public school. The house we were trying to sell elsewhere was empty and languishing on the market, while we rented in our new town. We didn't know anybody, yet, and could only hope the school would be a good fit for both boys. Things would later turn out better than we could have ever imagined, but we didn't know it then. If I could go back in time, I'd tell that version of myself we'd figure it all out somehow and learn to make our own true happiness and normal. And if you are at the beginning of your own story - without a light at the end of the tunnel yet in view - I want to tell you that you are not alone. Keep hope. Today, my 13-year-old son is doing beautifully and has been finding his voice in the images and stories in both film and drawing. He is very talented. Recently, he signed off on a video montage he created of himself with the words: Never Give Up. From the mouth of my own babe: never give up!
A VISIT BY GRIEF (from September 8, 2009)
It has been almost 4 years since the diagnosis. We've been working hard with our son and know that it could be much worse. We've come to a good place and recognize his strengths. We appreciate his progress. Nonetheless, there are days when grief comes by for an unexpected visit and it is as heart wrenching as it was at the beginning of our journey.
Recently, I met some families on a school tour. We were all newcomers to the district. In our case, we came because the district offered something for both our boys: great services for special needs kids and a good, solid education for neuro-typicals. Amidst the chit-chat, one parent mentioned that she had heard that the school had good special services, 'not that either of my children needs them' she was quick to add. On the same tour, a child said to me, pointing to my son, "he's not making any sense." I was later forthcoming about my son's needs with the parent. And to the little boy, I suggested playfully that we find out exactly what my son was talking about and try to get it out of him. These kinds of comments can be touchy, but they are not the kind of exchanges -at least at this stage of the game- that invite the grief I am referring to.
The kind of grief I'm talking about is powerful. It arrives and seizes you when you least expect it. And if you're not prepared when it shows its face, it doesn't leave until it's done a number on you.
Grief came to visit me when -early on- I disclosed my son's diagnosis to my former employer, who I thought I could confide in because her husband is a Harvard-trained neurologist. After some silence, she replied "It's because you're not giving your son enough attention." Despite all of society's focus on autism, these days, it is a condition that continues to be grossly misunderstood by even those you thought should know better.
I am a piano teacher. Last year, grief visited me in the middle of giving lessons. The brother and sister were clowning around with each other and playing their pieces without any struggle. The mom was busy complaining about her schedule that was filled with after-school tennis, karate, dance, girl scouts, soccer, and religious school for her children. That was how I once envisioned our life would be.
More recently, grief visited me on the first day of school. "There are too many kids here" said my little boy. Those were the only intelligible words he uttered to me as we waited for the school doors to open. The rest of the time, he was in his own world, seemingly unaware of his surroundings and humming under his breath. All around us swirled the excitement of the first day. There were parents with cameras, kids hopping around and playing, kids in tears hanging onto parents. I was happy that my older boy was off and running, joining in with a pack of 3rd graders he had only met a minute ago. And then there was my little one. My sweet little one standing at my side in the midst of all this craziness, tuning out and appearing not at all interested or aware. It breaks my heart that it's this way with him. Another experience that reinforces my concerns about his whole life ahead of him.
Once Upon a Snowflake: this is our story.