It's been too long since I've blogged. Things have been hectic and it's led me to just want to chill in the evenings - Google Reader, Grabatron (an addicting iPhone game) or maybe regular reading, but nothing that's involved actually thinking.
But yesterday I was reading some autism articles and I was thinking about how normally when I become interested in learning more about a subject, I'll find sites about it and put them in my Google Reader. But then I realized that much of what I read about people's experiences with autism is so depressing that I don't want to put more in my life - these aren't things I can learn from and the topic is so foreign that I guess I'm not ready to become well versed in it.
But I've read a couple of posts recently that have bummed me out more than normal - about people who see their autistic children as proof that God doesn't exist, or who, after receiving the diagnosis rejected God and turned their back on their faith.
We received our daughter's ADHD/OCD/ODD and our son's Autism-PDDNOS diagnosis within a few months of each other. It was a crushing blow, but our faith in God is what pulled us through, gave us something to lean on, to focus on, a place to shout "Why????" Answers were not immediately forthcoming, but we knew we were heard.
The reason people so quickly push God away often are tangentially related to well-meaning people who cluelessly offer up rude statements like "God has a plan." or "God never gives you more than you can handle." or "You've been given an extra-special gift."
Before I go any further, I have to make a few disclaimers:
(1) Our daughter is receiving excellent care, we have great health insurance and the two medications she's taking are really allowing her to control her emotions. She is very intelligent and realized she was behaving in a way that she didn't want to, but she couldn't stop it. We're at a stable place right now and she's excelling in school, on track with math (probably ahead by the end of summer) and reading several grade levels ahead (again, probably even moreso by the end of summer.)
(2) Our son is probably on the milder side from what you typically think of for autism. His communication is pretty much limited to his two loves: food and baths. He can understand more, you can tell when you look in his eyes, but coaxing communication out of him is difficult and he sometimes loses words he used to say. We're not sure if it's stubbornness or true inability to say them. He's also very cuddly. But, he's not potty trained, gets very furious at times and can be mean/aggressive. And he has no sense of danger, so he must be restrained in public and at meals and still manages to hurt himself pretty decently with his daredevil antics.
So I guess this is a post about stupid things people say when they mean well, and then also my attempt to bring something positive out of each.
"God has a plan."
Don't tell me that. God usually works like a flashlight or lamp unto my feet - I only get to see a little bit of the path ahead, not the entire journey. With as many unknowns as there are when a child is diagnosed with an illness "to be defined later" (like PDDNOS) or this might work for actually any sudden traumatic piece of news (thinking of a friend who lost his wife tragically a few months ago) - we don't want to be told that this trauma is part of some plan. Usually, we associate plans with good things, with an endpoint, with an outcome we can work towards, or participate, or at least enjoy the journey. But no - we don't know what the future holds, we don't know what is expected of us and this certainly doesn't feel like an intentional thing.
"All things work out of the best."
Let me punch you in the gut. Let me know how that works out for you. Often an autism diagnosis is described as feeling like a robbery - but there's no insurance company you can call, it's a robbery you live with every day. It's a robbery of an idealized relationship with your child, it's the robbery of seeing that child "locked" inside a body that won't cooperate, it's the turn your life suddenly takes that is obviously not a temporary detour, like a broken arm or a stolen car.
"God doesn't give you more than you can handle."
Fair enough. We handle. Or make do. But it's a struggle. Forget seeing a family walking together in the mall or friend's new baby learning to walk and talk. Part of it is selfish - we don't want to handle quite this much. Part of it becomes a distrust of God - "really? you think I can handle this?" We do, but everything gets shortchanged. If one of our children were typically developing, we'd be able to spend more time with the other to work on their development. The relationship between Lori and I is shortchanged. Our health is shortchanged. Which in turn shortchanges what I can give to my work or my family. Our schedule is short-changed with all the extra chores and ritual and doctor's appointments. And our finances get shortchanged between co-pays and special stuff we must buy. And then even our extended family gets neglected. You tell me that God gave me what He knew I could handle and I think you're saying God's trying to make me miserable.
Now, I know that's not true. There's even a part of me that says "Ok, God, I'll do it. I can do it." But it's a struggle.
"You've been given an extra-special gift."
As true as this may be, one writer whose son is exhibits symptoms much more like what you think of when you think of autism (closed off, not wanting to be touched, unable to communicate) described the autism diagnosis (not his son) as a "crappy gift" he'd like to know where he can "return it."
Children are a blessing, but only someone who doesn't live with this on a daily basis would say something like that. I know I only have a glimpse, that what we're faced with is probably something many people only dream of experiencing, but the uncertainty of what the future holds is no less - will he be in our care for the rest of our live? (And then what?) Will something one day "click" and a floodgate of communication will open up? Will he grow larger and harder to physically control when he's frustrated or angry?
And when I say I only have a taste, even then, it's so much less than my wife deals with. Thanks to help from my parents, it was possible for her to stop working outside the home (and the only way we could even afford to consider a second child) but I often wonder - especially when I get a report of a really rough day- how does she do it? And does she ever think "This is so not what I signed up for."?
We have a loving God that sustains us through our trials and has entrusted two very special children to our care whom we love very dearly. We have supportive friends, my co-workers are supportive and so is our church (I'm dreading the day they say he can't be in the nursery any more.) But I still get those moments of concern and doubt begins to creep in.
It took us 1,430 days to read through the Bible the first time with Rachel, starting the night she was born and reading even just a little bit nearly every night. But by the time we'd reached the new testament, she understood what we were reading. It took 1,460 days to read through it with Ben and now I'm working on a second read-through, but I don't know if there's any comprehension there. Years ago, Rachel mentioned a relative - by name - who passed away before she was born but yet she somehow had knowledge of even though we'd never spoken of them. I believe that children do have a connection to God that gets lost over time as we clutter our lives with distrations that makes it more difficult to hear Him. So I ferverently hope that Ben is aware of God, even though I'm not able to talk about God with Ben.
Because otherwise that's what shakes at the foundations of my faith - could God create a person who couldn't understand who He is?
I know this has rambled, but I can do that, nothing says this needs to be outlined or mindmapped or perfectly executed, it was just some thoughts that were rambling around in my head that I wanted to get out.