Note: I wrote this post three years ago on another blog for an audience of family and friends. Today I revisited it (thanks Time Hop app!) and realized I’m particularly proud of what I put to paper. What follows is a modified version of the original text – enjoy!
The calendar page has turned from September to October, signaling the start of Fall and its accompanying bedlam. I’ve entered the second six weeks of the school year, Monkey is about three weeks into his new school, and the hubs entering the final quarter of his year. We’re going to blink and it’s going to be time for Christmas – and rather than that being exciting, it just feels like that’s one more thing to do. I’d bet you find yourself in the same situation these days. Days fly by, but when Friday evening arrives, you know that logically only five days have passed, yet your body tells you five months have. We’re tired. We’re a little overwhelmed. We’re feeling like life’s treadmill is operating at the speed of sound, and there’s so much noise, it’s tough to process everything.
To make things more exhausting and challenging, Monkey’s been… well, he’s been particularly autistic the past few weeks. I know to the outsider that sounds ridiculous. Autistic is autistic is autistic. How could it get better or worse from day to day? Well friends, I’m here to tell you it can. It does. And when it gets worse, the confidence and glee that come from progress are haunted by the specter of terror. And though terror sounds melodramatic, the term isn’t inaccurate. You put on the brave face and you keep on working. You think back that other times of regression like this have been followed by great strides. When he was like this the first time, a few weeks passed and he started saying the letters of the alphabet. Last time he had a phase like this, he started saying some words. So your head tells you this is just another one of those, and you dare to dream the good that will follow this spell will be amazing. But while you wait – and watch all the hand flapping, listen to the random babbling, awake to his noises in the wee small hours – you try not to let that specter haunt every aspect of life.
Right now, we’re still waiting. I’d say it’s been about two weeks of Monkey just not being the same independent little guy he had been in August and early September. My guess is that this is positive, that the new things he’s learning at school and observing everywhere are ginning in his little noggin. Since his brain isn’t as skilled as dealing with inputs as most, this is just going to take a while and manifest itself in different ways. But in the meantime, we wait.
I tell you this not to have a pity party, but to let you know how things really go. I love this blog for the opportunities it affords me to make sense of my feelings and, more often than not, identify the blessings out of the challenges wrought by autism. But I also think that I often put on a brave face that neglects to share those harder realities of autism. And truly, I promise this isn’t going to signal a change to this blog being a joy sponge, because that’s no good! I feel very called to be authentic here. Autism’s prevalence is only increasing, and my sad guess is that my boy isn’t going to be the only child with an autism spectrum disorder that you’ll know. He likely isn’t already. So perhaps if my candor about the down side of autism does anything, it can help you see the reality of the condition. It can help you have empathy for someone you don’t even know who needs it more than you could ever imagine. It can help you do for another mother or father struggling to make sense of autism what you already do for us: express support and show thoughtfulness. For what it’s worth, we appreciate it more than we could ever express.
The title of this post cites a favorite passage of mine from Romans:
…We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. (Romans 5:3-5, NIV)
Though we have had two hard weeks, we’ve also had reasons to feel hopeful. The first was a random act of the sweetest kindness by my cousin, L. She just graduated from college and attended a lecture on campus given by Temple Grandin. You may not know much about Dr. Grandin, but she has autism, is a world-renowned livestock expert, and, most importantly to me at least, is a source of great hope for families affected by autism. Well, sweet L. bought Monkey a children’s book at the event and had it signed by Temple.
My eyes fill with tears just typing this again. L., thank you again for thinking of us and giving us something we’ll always treasure. We appreciate you so much!
The second: yesterday, I opted to take a break from lesson planning to write thank you notes to those of you who have so generously donated in Monkey’s honor to the 2011 DFW Walk for Autism Speaks. Yes, writing those notes helped me mark something off my growing to do list. But more importantly, writing you filled my heart with gratitude. To those who donated – and we’re up to $800?!?! – thank you. You are so generous! To those who have given to us not from your wallet but from your ears, your eyes, your hearts: I just can never tell you how much you’ve helped us get through one of the most challenging times of our lives. Thursday marks the anniversary of our boy’s diagnosis, and I find myself so introspective. Without question it has been a time of unprecedented struggle. But I also know that while I am exhausted, I am enlightened. Though we have been tested, we have triumphed in trusting God more than ever.
And with that – I’m reminded why I write. Thanks, as always, for listening, for supporting.