I’m sad and frustrated. I just got an email from my dear friend Alyson. She’s a phenomenon. Smart, funny, stylin’, energetic, creative, sassy – all those good things I love in a friend. She’s an accomplished musician, an inspiring teacher, a wonder with fabric, a bargain shopper extraordinaire, and she knows how to breathe fire. (A little trick some of us learned at a Midwest Pilgrim’s retreat a couple years ago.) She’s got quite a load though. She has three sons. All three of them have autism. I’ve known this for years, of course. But times now are particularly grim.
The older two are in their teens. The oldest has Aspbergers and is high enough functioning to know that he doesn’t really have any friends at high school. The second one just started at high school this year and has a more serious version on the spectrum. He’s quite verbal and can tell you more than you ever wanted to know about sharks and trains or whatever his current fascination is. The youngest one, Zachary (which means “gift from God”), has turned 12, is now taller than Alyson and has both some mental retardation on top of his autism. Oh, and add puberty to that.
In September, at the beginning of the school year, Zachary had an especially difficult transition. I’m sort of afraid to ask for details, but I know that this large boy with little impulse control and very little speech, attacked his teacher. I can imagine scenarios in which a teacher of “typical” students confronts a child with autism with the assertiveness and formality required for disciplining typical kids. This can so often be the exactly wrong approach for children with autism. Poor Zach, confused, frustrated, explosive. And poor teacher, battered and bruised.
And poor Alyson. She and her husband sent word around in September that they were inviting anyone interested to join them in a day of prayer on September 24th that Zachary’s anger and anxiety could abate. They weren’t asking for a cure, just some relief. With a little respite they might be able to get the appropriate mix of medications for him – an impossible task to this point.
My family in all our various spots around the globe joined in this petition. Lots of fervent folks sent their ecumenical prayers heavenward on behalf of Zachary and his family.
Today Alyson’s email told me that in the past three weeks – since the day of prayer – things have gotten dramatically worse. Hard to imagine, isn’t it. He attacked his teacher again and has been taken out of school. Alyson has been with him full time since then. She said, perhaps facetiously, that she doesn’t think God answers prayers from her state. It’s always hard to tell nuances in emails and there is no smiley face icon for bone-weary grief.
They’re in a mire of paperwork now trying to place him in a residential facility for children with autism. There are questions of authorization and finances. How does she keep putting one foot in front of the other? She works on the state autism board, writes a column for an autism focused magazine, has a weekly radio show where she shares tips, strategies and life lessons learned from living with children with autism, and is a professional liaison for parents who have just received the diagnosis for their child. Her life – and that fact that she hasn’t “succumbed” to the despair that would be easy to slip into – is always a standard of hope to those tearful parents.
But right now she is the tearful parent. And I am her tearful friend. I don’t have the stomach for pat answers and encouragements of faith and patience. I know God lives. I know God is aware of Alyson and Zachary and their family. I even know God is a God of love. I just simply don’t understand His ways, His involvement, His promises, His methods. I don’t understand at all.
When we’re asking for “not my will but Thy will be done” how can it possibly be that God’s “will” is more suffering for this remarkable family?
But still, for all my confusion and my frustration about God’s workings, I have this refrain still running through my head “Help of the helpless, oh abide with [them]” and an urgent request that all of you out there who may read this pray with me for Alyson and Zachary and their family. Even in the dark. Even if it’s just an echo in a cave. I don’t understand that at all, either.