with photographer and author Tera Girardin
“Autism.” I couldn’t even hear the word from his teacher who was trying to gently guide me to getting my 2-year old son the help he needed. I was in denial and got angry and defensive. I got off the phone and I even started to hyperventilate! I couldn’t even speak the word.
Because at that time, my son, Alex, was having such a difficult time (and so was I). He was a toddler who had limited communication skills, a lot of sensory sensitivities and overwhelming tantrums that were as heartbreaking as they were frustrating for both of us. It was a challenge to get through the day. I was a zombie and was doing the best I could but I knew it wasn’t good enough. Even though I had two older sons, I felt at a loss as to what to do and how to parent my youngest.
That’s when the word autism creeped in. I rebelled against considering it because it felt like a life sentence. And with life the way it was – a constant minefield of tantrums – I couldn’t bear to consider living this way forever. And that’s what I knew of autism. That it is forever.
To accept an autism diagnosis felt hopeless.
I’ve since learned there is a lot of hope. And joy. And progress. This is such a nuanced and complex disorder. There is no manual on how to proceed so it can be overwhelming and isolating.
When I got over the initial shock of “autism,” I got to work at finding my son the best help for him. He started attending an intensive early intervention program. And I found my hope there. Not only did they understand what he needed but they believed in him as much as I did.
When I dropped him off that first day, it was the first time I could remember feeling enormous relief and confidence. Not worry. At three and a half years old, Alex went to work. He worked hard. He attended that program 8 hours a day, 5 days a week for 2 years. That was a lot of pick up and drop offs for me and a lot of time waiting in the lobby. You get to know others in the lobby of such a place.
And as the days went on, I saw remarkable changes in Alex. Improvement, learning, progress! I wanted to celebrate every little milestone. Like shout from the rooftops “He brushed his teeth!!” And then I started to notice the other kids in the lobby making incredible improvements too. There was a blond haired little boy with the beautiful big eyes who could barely look at me, and never spoke, at least not to me. Until one day he came up next to me and quietly said “Hi.” It was the sweetest words! There was another little boy who was always a bit jumpy and fidgety but could recite who was working that day by the license plate numbers in the parking lot. What a remarkable ability! Child after child, week after week, I’d notice these remarkable things.
These children inspired me every day. And gave me hope.
Those toddler days before we began at that facility were a very hard phase of our lives. Alex wasn’t talking or communicating very well. Mostly he just copied things he heard on tv including a remarkably accurate impersonation of Curious George. Life was a daily mine field of tantrum bombs never knowing when they’d go off (sometimes several in a day). He was struggling. I was struggling. Fast forward 8 years and I’m now told all the time is so polite and funny. He is a Boy Scout and has been on the student council. He reads chapter books and can tell you in detail about the stories he reads. That’s going from very few words at 2 years old to telling STORIES! And jokes. Oh he jokes! He’s learning to handle and regulate his emotions. Tantrums are rare. There’s still off days with tears and frustrations but nuclear meltdowns rarely happen. He takes care of himself as much as any 11-year old does. He is preparing to go to middle school next year. MIDDLE SCHOOL!
That is a TON of advancement in a very short time frame. So if I could go back to in time and tell my hyperventilating self anything it would be this, “It’s going to be ok.”
I read this quote a year or so after getting his diagnosis and I carry it with me in my heart whenever I think of Alex.
“A mother’s belief in her child contains the power of snowflakes. Falling softly and slowly and in time becoming a glacier.”
He’s my glacier in the making.
Tera Girardin is a mom to three boys, a portrait photographer and autism advocate. She resides in the suburbs of Minneapolis, MN. She is also a budding author with her inspiring book Faces of Autism, Stories of Hope coming in April 2017. Her work can be found at www.teraphotography.com and the book project is at: www.facebook.com/facesofautismbook/