A year ago today my husband and I sat in the office of the chief of Developmental Medicine at Children’s Hospital Boston and received life changing news. Our son had autism.
Today I try to sit and reflect on what has happened in the past year. How this life changing news, well….changed our lives. And it has. For sure. Only not in the way you’d probably think.
We got the words. Autism Spectrum Disorder. For one day, it sucked. And then I got over it. And then I decided to fight. Fight for it. Fight for Jack. But never fight against it. This wasn’t something I could ever, or would ever try to eradicate from Jack. It’s as much a part of him as his beautiful blonde hair or gorgeous blue eyes. It’s part of what makes him so freaking awesome, and come on…if you’ve ever met Jack you know one thing is for sure…he’s definitely freaking awesome. His ASD is what makes him love things so intensely, feel so much fervor for the things that make him happy. I love that he loves trains. I love that he tries to trick me into making him mac & cheese every day. I wouldn’t change the fact that I now know more about how a steam engine works than I ever thought possible. I wouldn’t change the fact that no matter how much I’ve learned, Jack still knows 10x more about how a steam engine works than I do. :)
But while I wasn’t going to fight against ASD, I certainly wasn’t going to just accept this diagnosis and call it a day. From day one I thought, “ok. He has ASD. But it doesn’t have him.” And so I made the decision to fight right alongside with Jack. And that’s just what we did. He did the real work and I just tried to stop anyone that got in his way of progress. He pushed (and continues to still) through the stress, through the frustration, with his therapists. I mean….one year ago today he had LESS THAN 25 WORDS. Today….well, today he’s above average verbally. He goes to school, and he loves it. He has friends. He has flown through program after program in ABA therapy. We can leave the house. You can reason with him. He stopped running away every time you let go of his hand. He can get a haircut. He can tell you what scares him. He can tell you when he’s mad. He can tell you that he’s sorry. He can tell you that he loves you. He fought for himself. And me? I fought for him. I fought with the people who said no. The people who said he didn’t qualify. The people who gave us dirty looks in public when things were hard for Jack.
I feel like my life is a completely different one than it was a year ago. I speak differently because I have a different language now. I’m a better parent now to both of my kids. I feel like I’ve become a better person.
And Jack? Well, he’s not even the same kid. All kids grow and change and develop…but this was something more. He has transformed. And it has been a privilege to have a front row seat on the train that is his journey. I can’t wait to see where our tracks go next. But I know it’s going to be a beautiful ride. Because he’s not letting anything get in his way. And that’s a lesson we could all learn from this little guy.