Sunday, July 09, 2006

Saving a life...?

Yesterday was one roller-coaster of a day. Dad worked in the morning & I had planned a quiet morning, printing out the letters B & I had written to Tomoko's mom in Japan to thank her for the snacks she had sent us (the Pokemon-themed ones were a particular hit :) & practising hiragana... but the brand new black printer cartridge turned out to be defective, so we made an unexpected, yet quick trip to get a replacement, which was weathered well by B, then continued with the regularly scheduled activities. C got home right as we were getting ready for lunch & they had time to start a pokemon card game before our Japanese lesson. I had found some daifuku (mochi with red bean paste inside) buns at the asian food store & also some mugicha, which is the favourite japanese iced tea for summer (considered very healthy), so I prepared a surprise snack for our lesson. The message B spelled out for Tomoko this week said Tomoko wa, mugicha ga suki desuka? which means "Does Tomoko like mugicha?". She loves it :) The next bit of fun was watching dad eat a daifuku bun. C is known for his suspicion of soft, sticky mochi, & I now have the photos to prove it :) He's a really good sport. Buckling down to the lesson went pretty well until we got to the verb "to eat", which seems to have an unpleasant connotation for B at times & starts him ticcing... it's really hard to know how to deal with this. Tomoko is endlessly patient- it's really the only reason we learn anything at all, I think. She moved along with the lesson & I held B half in my lap until the tics calmed down, then he did his bit of the conversation & was released to dad for more pokemon. Tomoko & I usually spend time on our own after B's part of the lesson is done, comparing cultures or my asking questions about words or phrases I've come across. I am always amazed by how Tomoko is always completely unruffled by B's tics & difficulties with certain words & ideas & I'm coming to see this as part of Japanese culture's way of looking at children in general. In Japan kids are cut a great deal of slack. They are expected to be kids & are indulged a bit (a kid can ask an adult for something, like a toy or a sweet, & it isn't considered rude)- probably because things get so demanding as they grow older.

In the afternoon, B had a great time with the kids next door. They have bonded over water balloons over the past few days, kindly provided by B's best friend E, & now that the balloons have run-out they have been playing with the hose & in their big, inflatable yard-pool. For all that we have been neighbours since before any of the kids were born, there is a sense of exoticness about them at times. The oldest, a boy, is 5 days younger than B, with the other 2, girls, 3 & 5 years younger than the boys. These kids go to catholic school & are part of a huge family clan. Other than being neighbours, we don't run in the same circles at all & do have some diverging values, but in all they are great neighbours & good people. They have watched with acceptance & understanding our journey with B & autism, which has been a comfort. During the recent water play we have been enjoying overhearing B's interactions with the kids- he is having a great time learning their games & sharing ones he knows or makes up. While C was outside with B yesterday, keeping an eye on things, the neighbour mom was telling him about overhearing a conversation between B & middle child about his tics. She was amazed... she said B answered the questions matter-of-factly & very clearly (this mom is a nurse), explaining that his brain worked differently & that he can't do anything about the tics. but that they aren't an ilness or anything- that they happen to him, but are not likely to happen to her (middle child). C & I were also pretty amazed & pleased by B's ability to explain his tics to a younger child, especially his being aware of her possible fears about them.

As they day wore on B had more & more difficulty with thoughts & tics. By bed-time it was clear that he was exhausted, but he was terribly restless while I was reading to him & after 30 minutes seemed no more ready to fall asleep than when I started reading. The tics got louder & louder & all he could say was that it was a thought about Rufus getting hurt. The biggest problem with the OCD & B not falling asleep is that he gets less & less able to talk, think clearly, or even interact with us as it gets later... C tried putting B in front of the tv to watch pokemon for about 45 minutes, but the thoughts started bothering him the minute he went back to bed. By 11:15 we tried putting him back in from of the tv, but B was too far gone- we got him into the Foof chair (like a beanbag but filled with foam) but the minute we turned on a show he went into a fetal position & started banging his head (luckily, on the Foof). After a bit, when he just couldn't relax enough to watch the show, we turned it off & I tried to talk him down. His eyes were red & looked like a frightened animal's. It was plain scary. C was there, too, & we thought maybe it was time to contact the doctor on call for B's psychiatrist, but B got very agitated when we mentioned that. We've talked to B before about the possibility of having to go the hospital if we felt he was injuring himself or needed more help than we could give him. I explained that his distress was very scary & that nothing we were doing seemed to help. I kind of jiggled the Foof as I was talking to him (B has found rocking & jiggling to be calming ever since he was a baby). B kept banging his head into the Foof, but the noises got quieter & quieter, so we just sat with him. B started to cry because his ear was getting abraded from the banging, so I asked him if he wanted to go back to bed. He nodded & nearly ran back to bed- dove in & started to cry into his pillow. I sat by him, still jiggling the bed a bit, & B finally said "thanks for taking me for who I am". I was taken by surprise- he'd been mostly non-verbal up till then, & I started to cry too. I told him that the only thing I'd change about him is the OCD, & that's only because it makes him so miserable... but that everything else about him I couldn't imagine any other way. He didn't tic again & finally fell to sleep while I sat with him.

This morning while thinking of last night's marathon, I couldn't help but reflect on this post by Kristina Chew in Autism Vox: which comments on another autism mom's responses perceived criticism by a disability rights activist. The autism mom says:

At the end of the day, we are tired and, yes, many of us have had very bad, dark days, but that is common when you feel so isolated and alone in the most important fight of your life: to save your beautiful child.

I have mixed feelings about this statement. It certainly seems to me to explain a great deal of the "curebies'" (not saying that this mom is one, although the "saving" bit seems to imply this...) desperation- feeling "isolated & alone". Recalling C's patient & persistent words yesterday afternoon, when the pokemon game went badly for B & he was furious & upset... I think of how lucky I felt to have a husband who is as fully committed to co-parenting this child with me. I would feel terribly alone without C- I just never could do this alone & I wonder if some of this desperation is coming from many family's not having such equally-committed parents (at least to the child-raising). But is this the "most important fight of my life"? Do I see life as a battle? Even after the hours spent keeping B from hurting himself & bearing witness to his misery last night, I cannot see this life with him as a battle. I am not fighting him, nor am I fighting autism, or really, OCD. I haven't written much from the Jedi perspective lately, but I believe that, in essence, how we think of anything, particularly, our lives, is how they are going to be... my life is not going to be a battle. I am aiming for peaceful co-existence, thank you very much, particularly with my child & my family.

In the aftermath of last night, even though we were committed not to increase B's seroquel, it is clear that he needs something more to help with the anxiety. Whether this means changing medications altogether or increasing the seroquel- we will begin exploring this with B's psychiatrist tomorrow. Today with B has only shown us more clearly that he needs more help to overcome the irrational fears the OCD causes him these days. He's been plagued by thoughts & tics all day & refused to play outside with the kids, saying that they were giving him scary thoughts. We have spent most of the day distracting B with reading out loud & pokemon games. We discussed over lunch what happened last night & I asked B if he could tell me what had upset him so much. He explained that he couldn't get the thought of Rufus' head being chopped off out of his mind. I know that I would have been distraught, too, if I couldn't get such a thought out of my mind... I mentioned that we wanted him to take more seroquel this evening, but he balked. We explained that, just as he's been out-growing his socks because his body is growing, he seems to have out-grown the seroquel again, too. I reminded him that he'd taken this much seroquel in the past, but we'd reduced it because he was taking the abilify (which ended-up giving him muscle spasms, so we stopped it & never upped the seroquel again). It turns out that his biggest worry was that he'd gain weight faster with more seroquel, but we assured him that wasn't the case. He asked us to call Dr. B, his psychiatrist, tomorrow & ask for her advice, & we assured him that we will. It may be time to try something else... It's so hard not having any real answers in the face of B's terrible distress. But we will keep looking- not to "save his life". To give him a life without fear, so that he can enjoy being a kid & playing with other kids.


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