525600 minutes. How do you measure a year?
In daylights, in sunsets, in midnights, in cups of coffee? In inches, in miles, in laughter, in strife?
In truths that she learned, or in times that he cried? In bridges he burned, or the way that she died?
How about LOVE?
(excerpts from a song written by Jonathan Larson for the show Rent)
It’s been a year since Jay was 1st, officially diagnosed. And what a year it’s been. I’ve learned so much. About autism, about Jay, about what’s really important in life, about myself. I’ve fought. With Jay, with the school, with my own demons. I’ve felt so many things. I’ve felt empowered and defeated, hopeful and dejected. I’ve cried, I’ve laughed, I’ve drunk lots of coffee, I’ve loved and felt loved.
A year ago, I couldn’t even say the “A” word. It would get stuck in my throat every time I tried to bring it up. I was in denial. Even before we took Jay to the doctor, of course, I knew something was wrong. But a part of me still held onto the string that the doctors were wrong and that Jay was just slow to talk and he would out grow his other issues. Everybody told me about someone they knew who was late to talk and now they’re fine. In my heart I knew that wouldn’t happen but I wanted to believe it. Then at some point, I don’t know when or what triggered it, I was able to say it (the dreaded “A” word) but not without accompanying tears. A year ago, shoot, 6 months ago, I felt like I would never get past those feelings. I thought that would be my life for the rest of my life. Always on the verge of tears when anyone asked how my boys were doing.
A year ago, I didn’t know anything about IEP’s, ABA, OT, ST, NT’s. I didn’t know what to expect or what lay ahead. I still don’t know what lies ahead. None of us do. But I do know now, that whatever it is, I will just suck it up and deal with it. I’m not scared anymore the way I used to be. I’ve shared my insecurities with people I don’t know and some that I do. And I’m ok. It didn’t back fire. In fact, it made me stronger.
It was about 6 months ago that I was on the web randomly looking up info on autism. (That had become a daily occurrence). I stumbled upon a blog that changed my life. I read 1 post, and then another. I read comments by other autism mama’s. All of a sudden, I felt connected to something. I wasn’t alone in this journey. It certainly wasn’t a club I would’ve chosen to join but my God it felt good to find this on-line community of people dealing with a lot of the same things that I was dealing with. I instantly became addicted. I soaked up everything. I was drawn into this world that a year ago I didn’t know existed.
I kept looking for and finding more and more blogs that I could relate to. It took me a while to comment on anything I read. I was happy to lurk around on the outskirts taking what I needed but giving nothing. Then it happened. I read a blog that I couldn’t help but comment on. I started to open up and my walls started crumbling and the words started flowing easier. I started to accept my new life. I was hopeful about the future. I saw through these other people what was possible and in many ways, how lucky I am. The blogging world brought more to my life than almost anything else in the past year. It’s given me the OK to think whatever ridiculous thing came into my head. (I should have breastfed longer. I should have taken my pre-natals everyday. I shouldn’t have had those couple of cups of decaf coffee etc). It turns out I wasn’t the only person having those thoughts. Most of all, it’s given me information galore from people who are a couple (or a lot) of years ahead of me in this race. I’ve learned what questions to ask and what resources are available to me and that what the “experts” say should be taken with a grain of salt because so many times our children defy expectations and blow limitations out of the water.
For the past 3 months (aka since I started riding this train) my blog has been my little secret. It’s been a place where I go to “talk” to people like me. People who know exactly what I mean no matter what silly, selfish, heartbreaking, quirky thing I say. I wasn’t comfortable letting people who actually know me in on this. I don’t know why it was so hard for me. I suppose, being vulnerable is hard for most people. But, I’ve now come to a point where I’m ready to share. Ready to unveil all my insecurities and short comings and hurt and joy with the people I know and love.
I realize I’m not doing myself or my son any favours by keeping my thoughts to myself. How else will people learn about autism and what that means to my family if I don’t really tell them. People ask … “How’s things? How’s Jay?” How on earth do I answer that question? It’s so loaded. I usually give the same lame, insufficient answer. “He’s fine. Making progress but it’s slow.”
Here’s a vehicle for people to really get the answer to that question. (If they want the truth that is)
It’s been a heck of a year! We’re all older, 3 of us weigh more, 2 of us are taller and 1 of us is now able to open up in a way I never thought possible. 1 of us is getting more and more comfortable in her skin as a SpEd mom.
P.S. I hope it’s ok that I linked to other people’s blogs without their permission. I don’t really know blog etiquette. If anyone knows and thinks I should take the links out please let me know. Thanks!