Hollow evening

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.

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10 Responses

  1. jana says:

    I will be holding their family in my thoughts & prayers. Wish I could do more to help…

  2. Deborah says:

    Me too. I’m exhausted just reading about her yoke.

  3. sarah says:

    I have an adopted special needs child, who spent her first 5 years in rages, tantrums, attack mode, screaming, climbing on tables at school, pulling a knife on me, etc. It was hell, and I cried myself to sleep MANY nights and felt completely hopeless. I still worry, but we found the perfect drug (after many mistrials) to help her bi-polar mood swings and rages. It is the same drug that my friend’s son, who is autistic and violent, takes — it has helped him too. But we both still have issues and major concerns about our children’s future. You just can’t know how hard it is to deal with the rage of children like this unless you have one. I hold your friend in my heart and prayers. I have one friend that has three autistic sons, and another who has a daughter with Asperger’s, and two sons with autism. I’m sure there isn’t anything I could say that she doesn’t already know, but if she ever wants to connect with two other mothers with multiple autistic children, have her contact me. Sarah

  4. Caroline says:

    Linda, what an extraordinary woman your friend is.

    Your post reminds me that so often crappy things happen to good people. I fervently hope for an upswing in the near future for Alyson and Zachary.

  5. Paula says:

    Oh how horrible. I’d been wondering how they were doing, and am very very sorry to hear that it’s so bad. I met Alyson years ago when she came to the Rocky Mountain Retreat with Linda, and heard their story then. Mind-boggling to think of coping with it all this time,every day. They’re in my prayers– but then I was one of the folks in the first group of pray-ers.

  6. AmyB says:

    I work with children who have special needs, and have watched many parents deal with the problems over time. First the grief that comes with realizing the child has problems, then learning to live with various disorders and disabilities. I’ve seen parents agonize over the decision to send a child to residential treatment, and the guilt and the wondering “did I do enough?” My heart breaks for these families. At the same time I am amazed with the courage I see in so many when dealing with tragedy.

    I wish the best for your friend and her family.

  7. JKS says:

    I will be praying that she will find the answers and direction she needs as she makes decisions for her son.

  8. madhousewife says:

    Wow. This hits home. I have two with autism, and the older one is having a very difficult time in school. (She’s physically aggressive, but she’s still only eight years old, so she hasn’t taken out a teacher yet.) It’s so hard to know what to do (or not do). It’s frustrating because everyone wants to help and wants what’s best for her, but none of us knows what to do. I’ve felt a distinct lack of divine guidance on the matter. I feel for your friend (and for her son). I hope their family gets some measure of peace soon.

  9. EmilyCC says:

    Those unanswered prayers bring up theological issues that make my head spin. I’ll keep this extraordinary family in my prayers.

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