Autism and God

I have a dear friend that I met in Washington last year who has a child with severe mental and physical disabilities. Her daughter can't sit without support, and the doctors are not even sure if her brain can see what she takes in with her eyes. Still, my friend is extremely close to God, and sees her daughter as God's precious gift to her and his way of humbling her to His greatness. I admire that philosophy, but, not being of the same religious philosophy, feel that I cannot fully comprehend it. So let me tell you about me and God. When I first started to get an inkling that Ben had something wrong with him, I was angry. And bitter. I remember distinctly sitting in the Explorer in the parking lot of Katherine's preschool waiting to take her in when it hit me full force. Here I was, the mother of three kids three and under (Kath was 3, the twins barely 2), and I was having to face the fact that my son wasn't right. I was exhausted from two years of baby care, constant feedings, diaper changes, supervision and the breaks were few and far between. And God had the audacity to make one of my precious children have something wrong with them. How dare he? Hadn't I worked hard enough? Wasn't I punished enough by having twins right on top of my eldest? I remember crying about it for the first time, and certainly not the last. Still, as I became surer of Ben's challanges, I began to "forgive" God, but I was on neutral terms with Him. If we didn't go to church for many months, well, God was the one who saddled us with all these problems, so He of all beings should understand how hard it was.
I've come to realize that in the grand scheme of things, Autism is only a drop in the bucket. Yes, I do go to church regularly with the kids even with Rob gone. Ben's gotten easier to take to church as long as he has his ipod. My attitude towards Ben during church is almost self righteous. I'll do my best to keep him quiet, but if he's not perfect, the people around me can just deal with it. God made him too. And God made him just the way he is. I don't worry about Ben's salvation or his eternal judgement. I think he's already home free. Still, I do often think about whether Ben was made my son so he could teach me to be a better person. But thinking that way starts to bring the bitterness back in me, especially when I see many, many other people around me who have perfectly normal little kids. Why am I so lucky? What did I do to deserve all this "luck"? So I find for me it's better not to involve God in "giving" me a kid with autism. It happened because it did, not because I think there's some grand scheme at work. Tragedies far worse than Ben's happen to people far better than me. So I guess it's best not to analyze it too much.

January is a cold, cold month. . .

I wanted to say that on the whole, Ben has been doing a little better. I've started him on this anti fungal/yeast killing program and taken him off of almost all of his other supplements except for the cod liver oil/primrose oil combo, and calcium. He'd been having a lot of VERY hyper days in a row, and I was pretty sure it was the yeast rearing its ugly head again. He's still hyper, but not deliriously so, like he was before. The crazy laughing has gone away and once again he is doing well. I hate to take him off the Nu Thera, as when he's on it he performs much better cognitively, but I may try to start putting it back into his supplement intake after I add Zinc and Vit C back in, to see if the crazy hyper thing starts again. Hopefully he can continue to take it as I think it definitely benefits him. I finally got the authorization from the insurance company for him to see a developmental pediatrician, but of course, they gave it to him for the wrong doctor. The autism specialist that I have the appointment with is a DAN doctor, and isn't in the "network". I may have to end up paying a good amount out of pocket if I lose my argument with the insurance people. But I really want Ben to see her. I need some guidance. Sometimes I just feel like I'm fumbling around the dark, trying things here and there, hoping this or that will work. I told you he's been doing well, and he has for the most part, but he had an awful tantrum this morning while waiting for the bus with the girls. It could have been the cold, but for the life of me I couldn't get him to put on gloves. He just ran around crying so I left the girls at the bus stop and walked back to the house with him yelling the whole time. When we got inside, it didn't stop until I finally took out the I pod and put it on him. I played his favorite song, Maroon 5's "Won't Go Home Without You", and it calmed him down after a couple of minutes. I should really write a fan letter to Maroon 5 and tell them how many times they have saved my sanity. Usually, they are great tantrum quellers. By the time his bus came 20 minutes later, Ben was a happy camper ready to go to school. I was so wound up though that I actually looked forward to running in the 30 degree cold just so that I could destress. I definitely felt better after I did. I'm trying to work up to a 5K using the podrunner interval podcast. Archie our dog loves it too. That's been my morning!!

January Update

I've been mulling over whether to keep this blog going or abandon it all together, and I really haven't decided either way. I'm not sure what is pulling me in the direction of abandonment. It's true that lately I've felt my time is better used on other pursuits, and frankly, I find regularly keeping up with something like a blog rather draining. When I first started this blog in 2005, my intention was to use it to keep track of Ben's progress using dietary and biomedical changes, and hopefully I would be able to consistantly post about progressions that he made. As I've become more intimately involved with the beast that is autism, I've realized that nothing about it is cut and dry. If you read back into 2005 and 2006, you'll find entries where Ben has made steps and progress that were superficial, and weren't repeated. In fact, that's been his entire story. Ben gains a skill. Ben loses and skill. Ben stops doing one stim. Ben starts up another stim. Something, like Threelac works for a while, progress is made. Then it stops working. In no sense am I ready to give up yet, but chronicling my hopes and disappointments has become taxing emotionally. It's not that Ben hasn't made any progress since last summer - don't get me wrong - he has, academically at least. This is a good place for him, probably as good as we're going to get, short of an enormous financial windfall. He's getting therapy four days a week and his therapists are wonderful. His teacher is wonderful too and he looks forward to getting on his school bus every day. Even though everything is "right", I'm afraid there are no miracles for Ben. New sounds, new behaviors, emerge every day. The spitting is constant. I understand when his extreme behaviors make others not want to be around him and therefore us. It's perfectly understandable. The average person isn't used to the backgroud noise that is a daily occurance in our house. People are freaked out by spit. I wish I could turn it all off, turn off the noise, the hysterical laughing for no apparent reason, the impish moods where he must do everything he knows he's not supposed to just to see if he can get you mad so he can laugh at the funny faces your making . . . . but I can't. I am still searching. Searching for ways to cope, searching for ways to better integrate Ben into our daily lives so that mundane tasks like waiting for the bus with the girls or going to church don't turn into neighborhood spectacles. I've accepted this is the way life is now, but I believe that one day it can and will be better. It's got to be. There's got to be an answer that we haven't found yet that will help. At least a little bit. So I may still periodically update this blog if anybody still reads it. Every now and then I might still have something to say.