This blog was initially set up as a means of communicating with my son's team. Since then, I've heard from other parents with similar stories. If you are living with challenges or journeying alongside someone who is, you are not alone. There are many of us. I'm a single adoptive Mom ( of a young man who lives with many abilities and many diagnoses. We have journeyed together through many challenges and a few adventures over the years as my son has tried to find space in this world that makes him feel more comfortable, an attempt made especially difficult when living with Attachment Disorder, PDD-NOS (Autism), Developmental Coordination Disorder, ADHD, prenatal substance exposure, etc. Some of the strongest elements used in this journey have been music, visual arts, therapeutic parenting, team-connection, boundary-setting, boundary-setting, boundary-setting, communication skills, community-building, continual lifeskills training, and elements of Theraplay. (Click here for some written resources.) On this journey, there is laughter and tears and growth and hope. The greatest of these is hope.

Tuesday, October 19, 2010

And Then There Are All Those "Maybe" Thoughts

"Civilization must be imposed on all of us, and both parents and children suffer in the process." ~Barbara Pierce

If today's blog were to focus on Chef taking care of himself (hygiene, clothes, bedroom, bedding, etc.) and his responsibilities (one chore per day plus weekend chore, preparing school lunches, getting up in the morning, his laundry), then today's blog would be very long and drawn-out and draining. Maybe it will be anyway!

Nutshell: Chef is back to not getting up when the alarm goes off the first time and sometimes the second time and sometimes the third or fourth time, is back to wearing the same clothes day after day, is back to not putting bedding on his bed and back to taking apart his mattress, is still dragging out and not completing chores, is not bathing or washing (though he's brushing his teeth once in awhile!), is still attempting to bring a tiny lunch to school at times, is not putting on outerwear on chilly days even with repeated discussion on my part and shivering on his part, and his room is - well, I can't believe he wants to live in the room he continues to create.

I still haven't found what acts as a motivator for Chef. That good ol' internal motivation seems to be damaged or delayed or absent, and there has never seemed to be much interest in any reward system other than wanting to receive the reward without having to do anything to earn such. Even comfort doesn't seem to be a motivator, evidenced by Chef's preference to not put bedding on his bed, not wear a jacket when reminded that he needs one because it's chilly and he's shivering, etc. Maybe my definition of comfort is just that much different than Chef's. Maybe Chef secretly wonders why on earth anyone would want sheets rubbing against them while they're trying to sleep. Maybe sensory is overriding the desire to be warm (though when Chef was younger, we had to hide his parka and boots so he'd stop trying to wear them into late Spring and Summer, and he wanted to wear turtlenecks in summer; maybe Chef's internal thermostat is set in a way that I'm not understanding, even though his body is shivering).

Back to motivators otherwise: Chef has the opportunity to receive his maximum allowance money which is $8/wk right now, but he also has the opportunity to earn more money through extra chores. Chef has had years of opportunity to earn $10 for a book report (because he was into writing them at the time this opportunity began) or $10 for learning a song on any instrument/singing (because he was participating in music at the time) or money for collecting pinecones (in our yard) which he happily collected for free one day then didn't collect them anymore when I said he could collect more for money. When he was younger I offered him money for each painting he did in the hopes that he would realize how cool it was to have money he'd earned but instead he stopped painting etc., etc., and treats were used as motivators briefly in the past til I learned that food shouldn't be used for children with food challenges. I don't remember the treats motivating Chef either except that he was angry when he didn't receive the treat. Chef's choices of free time opportunities (free time happens after chore time) include video games (hand-held now, since the game systems/computer games didn't seem to matter as motivators either and eventually moved out with his sister), playing with his baby niece, painting or other art, reading, movie/popcorn night with rental movie of his choice, doing stuff outside/in town, possibly going to a movie, board games or card games, doing a puzzle, etc., etc., etc. Unfortunately, Chef presently doesn't seem motivated towards any of these to the point of completing a chore. If I look at Chef's life overall, the completion of a chore happens when he "just decides to do it" seemingly regardless of outcomes. It's as though he just gets tired of not doing it.

If his support worker sits in the kitchen, Chef will complete dishes. One evening, a friend dropped by to help with a door and Chef, who'd been puttering in the kitchen, was suddenly scrubbing the outside of the oven!

Food: Recently, there were dried herbs on the kitchen floor. I reminded Chef that he needs to clean things up when he spills, then asked what they were from. Chef said the spices were from the pan where I'd cooked chicken. Given the amount on the floor and the fact that the dinner remains from the chicken pan were in sauce form, not dried and separate green bits, Chef's response didn't make sense but I didn't say anything and again reminded him to clean it up. The next day I found that the lids to some of the dried herbs/spices were topsy-turvy, and the lid to the sea-salt jar was loose. When I asked Chef what was going on with the herbs/spices, he said he was hungry (ok, yes, first he said he didn't know why the lids were like that and that he hadn't touched them and then said again that he hadn't, but on the third time he said that he had eaten them because he was hungry). I asked if it wouldn't have been a better idea to get some food from the fridge or make some popcorn if he was hungry. I wonder if he'd smelled the herbs I used on the chicken and just needed more of that taste. Sometimes I've wondered if it's a big hit of taste that Chef's unknowingly needing/wanting. He's very big on hot sauce, hot peppers, etc. When he took someone else's money to the school cafeteria that one day, he inhaled a burger and a meat pie but - he ate FOUR cinnamon buns; could be many reasons attached to that but maybe the cinnamon smell drew him in and called his name. He has downed bottles of salad dressing, loves loves loves ketchup, inhaled mustard from the bottle, mixed vanilla with rice flour and ate it, drank vanilla and other flavour extracts, has eaten mayo by the jar, has eaten peanut butter by the jar and washed it down with syrup, etc., etc. He's never taken to drinking olive oil or canola oil or any other kitchen oil, and I can't think of anything else that's bland that has drawn him in the past. Maybe I'm just not remembering. Chef used to drink water at home when he was younger, but he's rarely been drinking water the past couple of years. I thought he'd stopped drinking it because when he told his respite provider that he doesn't like water, I said that seemed strange because he drank water at home without issue. Maybe it's too bland for him. In the past, a team member had suggested a lot of crunchiness in Chef's diet to help with oral satiation. Maybe he also needs a lot of big hits of flavour as well. I don't know. As I'm typing this, I'm also thinking about the fact that Chef has always had full access to spices and herbs and his hot sauces so maybe it's not just flavour but specific flavours. If he smells something, maybe he needs/wants more of that flavour? I could be way off on this; after all, Chef says the reason he tries to sneak food is because he wants to be alone and the food feels more like his if he sneaks it and eats it by himself. I get that. I feel that way occasionally about candy bars or other treats.

**This Thursday will mark two weeks of not trying to sneak food upstairs.
**Today marks the one-week anniversary of not sneaking food at home at all.
**For the past while, Chef has taken any hint of grump or dishonesty or attitude or frustration outside to deal with. Sometimes he's spent more time outside than inside. It makes for a lot of door-activity in our house, but door-activity makes for much nicer evenings than otherwise.
**For quite some time now, Chef has been independently doing 20 minutes of exercise a day! It took literally years to get to this point, and much work on both of our parts regarding when (after school?before bed?mornings?evenings?), where, and how, but for months now (except on days when Chef stays in bed til we're almost out the door) Chef does 20 minutes of exercise when he gets up in the morning.

"It takes time." ~Russell Bergmann

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