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.

Saturday, October 30, 2010

Saturday, October 30, 2010

Last night I discovered someone else's lunchkit hidden in Chef's room. The lunchkit contained over 20 full-sized candy bar wrappers.

This morning, I discovered odd lumps in Chef's mattress and discovered he's been using it for stashing. Again. He's been taking his mattress apart for weeks and it is now serving as more of a stashing area than anything else. Chef's been removing the foam and making it into small squares which he's then been piling along the baseboard in his bedroom. Thread is being formed into balls. There was at least one book inside the mattress; Chef lied about there being anything in the mattress and wasn't participating in removing anything else from inside after he'd pulled out the book - and I'm just not brave enough to reach my hand inside there! This morning, I told Chef it was time to take the mattress out of his room. Out of all of Chef's mattresses over the years, this one has lasted the longest - but it met the same end as all the others; taken apart and used for stashing.

(When Chef has had books in his room, he has been quite happy to drag out chores so he can go to his room and read or has said he is too tired to do anything then goes to his room to read. There have also been many mornings when he isn't functioning well at all because he's been reading instead of sleeping; it's just not worth the morning stresses/raging of Chef being overtired. Oftentimes, the books end up being wrecked or end up disappearing, though not always; this would be fine if they are Chef's books but the ones he usually takes to his room usually belong to someone else or occasionally are now books of his that have been put away for a period of time because he's been reading instead of doing a chore or getting dressed, etc. For awhile, Chef was able to have magazines in his room with the idea that he'd read the magazine and be done with it then go to sleep; that didn't happen. He was still up in the night reading and rereading and/or making magazine pages into paper airplanes or spitballs. So now the books are on the main floor and Chef has complete access to them when he leaves himself time in the morning, after his chore in the evening, when we are going somewhere and he wants to bring a book along, etc. Chef's bedroom is reserved for quiet time/sleeping. To me, this is less than ideal because it doesn't feel "most normal and least restrictive" yet it seems to be what "works best" when it comes to Chef being out of his room in the evening and Chef sleeping at night.)

Chef was out of sorts this morning and used his "getting ready to go out" time this morning to grump around the house and show his displeasure. When it was time to go, Chef walked out wearing his pyjamas, a pair of shoes, and a jacket. We met a friend for lunch (Chef brought some vegetables along after I told him he needed to bring a lunch because I wouldn't be buying lunch for someone who'd taken what didn't belong to him and had lied and grumped about what he'd done) then ran some errands. When we were walking home, I talked with Chef about honesty and responsibility and dignity.

It continues to amaze me that Chef's body can physically handle what he occasionally puts into it. 20+ candy bars?? This one rates up there with the jar of peanut butter he speedily emptied then washed down with a bottle of pancake syrup. I don't know how his body does it.

At any rate, there haven't been any meltdowns today; I'm hoping the rest of the weekend remains the same, and that Chef gets his chores done and leaves himself time to enjoy some weekend activities.

Friday, October 29, 2010

Friday, October 29, 2010

This morning I was thinking about the changes I've seen in Chef over the years; how it's really very amazing to consider how far he's come in his life. I was thinking about how he used to not tolerate praise and now he drinks it in like water in the desert. I remembered how hard he used to fight against getting ready for school because he just wanted to stay home with mom, and all the on-the-way-to-school events that have taken place while trying to get Chef to school over the years. Now he calmly and independently waits for his bus. I thought about how he always wanted to stay in his room if "new people" were in the house, and how bravely he has now ventured into all the "new" of high school. My mind went back to how looooong and difficult it was for Chef to learn any form of physical exercise, and how he now independently does 20 minutes of exercises every day plus uses exercises to help him find his focus or to deal with frustration. Chef isn't comfortable with loud noises, but he copes with them much better now, and no longer runs screaming into the house if there is a loud noise outside. And he is starting to occasionally discuss possible discomfort about an event beforehand. Chef used to be very clear about not wanting to have any disability or difficulty, but is now starting to appropriately communicate about and plan around his needs.

Last night there was a Halloween dance where I used to work. Chef's immediate response was that he didn't want to go because there would be too many people. I have taken Chef to these events for years, and he's even been up and smiling on the dance floor on a few occasions. At last year's Spring Social, Chef said he thought it might be too loud for him, but he agreed to come anyway and spent the evening sitting with other folks he knows (after being repeatedly encouraged by me so he isn't always just with me at a social event), up on the dance floor (after repeated encouragement from others who wanted to support Chef in participating), and volunteering with me in the drink booth. Last night he agreed to come anyway, and initially sat a bit of a distance from everything that was going on and focussed on his snack. Once everyone was finished eating, Chef asked if he could have thirds. I reminded him that chips (crisps) were a "sometimes" food and he'd already had two huge piles. Chef nodded, walked across the dance floor towards the chair where he'd been sitting, then stopped and sat down in a chair right by where people were dancing. At one point he came to me and said he didn't know what to say to a woman who was trying to communicate with him, so we talked about that a bit then I reminded him that he could dance or visit with other folks rather than just stand beside me. Chef nodded then went back to his chair across the room. He has been participating less and less at events, but when he "has" to come along he seems to still be finding ways to be ok with being there. There's been a change here; he used to come along with me to any event or outing and would participate with encouragement, then started to occasionally not get ready to leave or would do other things that would delay leaving. I noticed this about the time that I started nudging Chef to be a bit more independent when we were places where he'd frequently been. When we were going to our weekly music session regularly, for example, I started suggesting to Chef that he sit beside other folks he knew rather than sitting beside me and laying his head down on my lap, etc. Eventually, if it was a new or less familiar event and/or an event that held some sort of possible expectation for him and/or an event where I would be encouraging him to not be velcroed to me, he would act out after being at the event. Then there was a shift to Chef angrily refusing to go somewhere at the last minute. Very recently, he has started discussing concerns before events and has been open to discussing ways of coping with those concerns. It's still questionable as to how much notice to provide to Chef regarding events/outings. Two weeks in advance could mean two weeks of stressing/figuring out ways of not attending; one day or a few hours advance could mean one day or a few hours of the same stressing/figuring. There have been times when I haven't said anything until we're leaving and Chef asks where we're going. The latter has "worked" the best overall, but to me it feels disrespectful given that Chef's 15 years old. Chef says that he prefers knowing a few days ahead because he wants to know in advance, but acknowledges that it's easier for him if he doesn't know until it's time to leave.

"Where growth is greater than quandry, there is beauty."

Thursday, October 28, 2010

4am Mornings = Not Fun for Anyone

Thursday, October 28, 2010

Chef has been up the past few mornings around 4am to use the washroom. I'm not sure if he's been going right back to bed or not, since I seem to drift in and out of sleep and then feel the need to get up and check to make sure he's back in his room.

On Tuesday, Chef had stayed home from school because he hadn't been feeling well. I'm not sure if he's come down with a cold or if his bedroom is causing him some problems with his sinuses, but on Monday night he asked if he could have a homeschool day on Tuesday. I told him that we could gladly do a homeschool day but those days have to be planned at least a few days beforehand. "Oh," Chef said, "because I'm not feeling very good." We later agreed that we'd see how he was feeling in the morning and if he still wasn't feeling great then he'd stay home for a sick day, then talked a bit about the difference between a homeschool day and a sick day. The next morning, Chef was up just before 4 and was sneezing off and on til about 8:00. I'd turned off the usual 7:30 alarm, but Chef came out of his room at 8 and said he had to get ready for school then started doing exercises. I reminded him that he was just staying home because he was sick, and that he needed to go back to bed. Around 11'ish, Chef came out again but this time said he REALLY needed to get ready for school. He still sounded snuffly. I reminded him again that he was sick and needed to rest so he could get better. Chef said he needed to be at school by lunch. When I asked him why, he said he thought he might have a test. I explored this a bit more with Chef then told him to just go and rest. I had a sense that he was in a rush to get to school for lunch because he knew he'd be missing out on other students' treats at lunchtime. I could be wrong. It's happened before. At noon, Chef told me again that he was feeling fine. He spent the afternoon at home with his sister and niece, and that evening he "redid" the dishes from last week that he said were clean though they weren't (we'd had a respite weekend, so Thursdays dishes were checked after Chef went to bed on Thursday then Chef was away til Monday evening).

This morning I told Chef he could go downstairs on his own and I'd be down in a minute. It was probably closer to three minutes. Chef said, "Ok, I'm going to make some cornmeal." When I went into the kitchen, there was water on the floor by the fridge. Chef said he didn't know what it was from. I opened the fridge door and noticed the lid on a casserole dish wasn't sitting well on the casserole dish, and figured the puddle on the floor was likely condensation from the wet lid. I debated whether or not to ask Chef or just point out the obvious situation. He's been in fairly good space and he's been occasionally starting to own up to things without lying first, then acknowledging that he feels better when he deals with things honestly like that, so I decided there might be an opportunity for Chef to be open about what he'd done so he'd get that feel-good. I asked Chef what he'd been doing in the kitchen so far. He said he'd gotten out his lunch, so I asked him what else he'd been doing in the kitchen. His immediate response of "That's all I was doing" came with whining and the ol' teenager "you don't believe me??" body language. I told him he needed to go find his honesty and appropriate ways of talking then talk to me. Chef went outside and did some jumping jacks then came in and repeated the same scenario. Back outside again. When he came in this time, he made a "grumpy and/or angry" face and stated that he'd grabbed some of the casserole out of the dish and eaten it while getting his lunch out of the fridge. When I reminded him that it would have been better to have breakfast and that there are appropriate ways to access food, he appeared even more indignant, looked like he was about to yell and started to say something but I quickly put my fingers to his lips to close them so he wouldn't wake his niece. Chef immediately started twisting his head and almost lost his balance. After removing my fingers, I asked Chef what the appropriate ways are to get food other than sneaking/grabbing food and stuffing into his mouth. "To ask or to eat at the table" was the grumpy reply. "Ok, did it work to lie and get angry with me over it?" "No," came the grumped reply. "Did it work to use up morning time that you needed to use for getting ready for school?" "No." Chef then started pushing his lip around with his hand. When I asked what he was doing, he said his lip hurt. I told him that it would definitely hurt doing what he was doing, and that if his lip hurt it would be better to put something cold on it. I had a look at his lip, saw nothing, got out a bag of frozen vegetables and put it to Chef's lip. He made an angry face and said his lip didn't hurt, but I wasn't sure if he was just saying that because he didn't like the cold. I told him that if it hurt, the cold would help and that it would be good to have it on there for a few seconds, and if it didn't hurt, then we didn't need the drama. Chef pulled away from the bag and walked over to the counter to get his lunch. I put the frozen vegetables back into the freezer and reminded Chef that he needed to quickly put away dishes from last night (usually not a morning requirement at all but I'm having someone over today and we're using the kitchen, and there were issues with dishes last night) and that he needed to hurry because he was running late. Chef did put the dishes away very quickly then slowly started picking up his lunch items. I asked him where his clothes were and he pointed to the bathroom and said they were in there. I reminded him that he needed to quickly get dressed because his bus would be coming and he still needed to add more food to his lunchbag. Chef started spooning some sauerkraut into a lunch container. And then - the bus came. When I told Chef the bus was here, Chef walked to the bathroom while I hurried to the front door and opened it. I'm having someone over today and sure didn't want the bus leaving and Chef staying home for the day! Chef walked out the door barefoot, in his pyjamas, carrying his clothes and his lunchbag. I reminded him he couldn't be outside barefoot - another eyeroll from Chef, but he stopped, put on his shoes, and went to the bus.

Today's lesson? Even though Chef doesn't have a problem with it on occasional weekends, don't suddenly change up the school morning by telling Chef he can be downstairs on his own for a bit before school, especially when he's been waking early! And mornings aren't the time for "feel-good" opportunities around food-sneaking!

Last night while dishwashing was taking forever because the dishes were being declared as "done" but showed evidence of not having been washed and had to be "re"washed, I considered setting up my camera to record on the kitchen table. I'd done this once in the past and thought I was being fairly brilliant with the idea. However, while the camera was calmly recording the kitchen happenings, I was nervous about leaving my camera there on its own for fear it might be "accidentally bumped" or encounter some similar fate; the concern was outweighing the benefits of recording. I also had absolutely no desire to sit and watch an evening of dragged-out dishwashing after Chef had gone to bed that evening. So last night I decided instead to check in occasionally by watching the reflection of the kitchen in a glassed picture frame in our living room. I've also done this in the past. I turned up the tv volume a bit then walked to where I could see the reflection. Chef didn't seem to notice whatsoever, and what I saw confirmed some of my wonderings. Chef wasn't actually washing dishes, but was doing the "dip, dip, and drainer" move or occasionally giving a dish one swipe with the dishcloth. I then stepped into the kitchen to watch. Chef glanced from the corner of his eye, continued singing, and started using the dishcloth to scrub all parts of the bowl in his hand. Aha! This provided reassurance for me in two areas. First, Chef is indeed still able to wash the dishes and still knows how to do so even on evenings when it is questionable as to why dishwashing is taking so long. Secondly, Chef wants to do what is right and is capable of doing what is right as long as he knows someone is with him or watching him. The latter might be a bit of a stretch seeing that the reassurance was coming from observing dishwashing, but it does seem to follow in pretty well every area of Chef's life. If someone is with him or he knows someone is watching him, he will almost always make good choices.

Dishes and 4am's and this morning aside, Chef seems to be in good spirits. He is taking responsibility for correcting himself when necessary, is generally accepting boundaries at home, and has generally just been pleasant to live with this week. He's been bringing artwork home and seems to be waiting for his hug when he hands me a painting or drawing. On Tuesday afternoon he just about bowled me over when he hugged me unexpectedly as I walked in the door from grocery shopping. Yesterday, he asked if he could give me a hug and actually snuggled in and gave a great squeeze with his arms. Very cool. And last weekend while packing for respite, Chef independently without any prompting at all announced that he needed to pack books because he gets bored of just playing video games and watching tv. And then he packed books! And his respite provider said he did a lot of reading over the weekend. This makes me smile.

Thursday, October 21, 2010

A Lovely Time Was Had By All

October 21, 2010

We've had a very nice evening.

Chef came home from school, gave me a picture he'd coloured at school, accepted a hug from me, and went to his room for a rest.

When he got up, he threw his laundry into the washer, asked if he could make supper while he was waiting for teatowels that were in the washer, and cooked a lovely supper of pasta with fried ground turkey and fried onions with tomato sauce. After supper, Chef did the dishes (I haven't checked them yet, but Chef had worked quickly and without issue), made popcorn, cleaned the downstairs bathroom and the upstairs bathroom, finished his laundry, made his bed (bottom sheet, top sheet, blanket!) had a bath (first bath in weeks, though did have a shower on his last respite weekend) and changed into pyjamas (first time in two weeks). Chef visited with his baby niece while we watched a video together, then he brushed his teeth, said goodnight, and went to bed.

There were only a couple of prompts throughout the entire evening; twice, Chef came into the living room and was getting ready to relax for the evening and I asked if he was finished everything he needed to finish. Chef normally would only have one chore in the evening plus a weekend chore, but he hasn't really been doing any of his chores for weeks and he knows he needs to do them before having free time. After each of the two times when I asked him if he was finished everything he needed to finish, he took some time to think about it then independently continued on with what he needed to do without any further prompting.

There had been talk at one point about the possibility of going out to see a movie but that hadn't been til after Chef was already on a roll with his chores.

We've had a very nice evening.

Wednesday, October 20, 2010

Hugs and Food and Foster Care

October 20, 2010

We've had a nice evening.

When Chef came home, he handed me a card he'd made for me at school. This is the third piece of art he's given me since school started. I told Chef that I felt like giving him a hug, and I know he doesn't like hugging but I wanted him to know that I felt like giving him one. Chef looked down at the floor and said, "Oh." I asked why he was looking down at the floor, and Chef said that he likes hugs. Well, this was news! There have been many "issues" with hugging over the years and Chef has stated that he isn't comfortable with hugs. When I said I was surprised to hear he likes hugs because he's said and shown that he doesn't like them, Chef said he doesn't remember saying he doesn't like hugs and stated again that he likes them. Well, well! Hugs it is then!

Chef had his usual rest when he got home from school, then immediately worked on dishes. He and I talked for a bit before supper. I told him I'd been hearing that he has the possibility of foster care on his mind, and that he seems to think that if he's in foster care he wouldn't have to do any chores - two people told me that today, so I decided I didn't need to discuss specific names with Chef and that it was enough to say that I'd been hearing it from folks. Chef's initial response was, "Yeah, I said that a long time ago when I was angry because I didn't want to do chores." When I said that I'd heard it recently, he said that he hadn't said it recently, then repeated that he'd said it a long time ago when he was angry because he hadn't wanted to do chores. I said I wondered if there were any other reasons he might have talked about foster care. Chef said, "Just chores cuz I didn't want to do them. And I wanted some new stuff." "New stuff?" "Yeah, sometimes kids get new stuff if they're in a foster home and maybe I'd get some new stuff." "Or you could go through the appropriate steps at home and use allowance to get new stuff, or take care of things so people want to buy you new stuff, or behave appropriately so you don't miss out on opportunities where you could get new stuff." Chef nodded, then repeated that he'd said that a long time ago when he was angry about chores. I asked Chef if he felt like I might place him in foster care. "No, I don't think so. You did that one time, I think, but that was a long time ago." We talked about some of his experiences in that foster home (I'd placed him for a short time when he was in grade 5 because I was exhausted from not sleeping at night after discovering Chef had been climbing out his bedroom window to get candy from the corner store), and I was shocked when Chef started talking about chores. In the past, he'd said he hadn't had to do chores there. Tonight he said everyone had to take turns cleaning up different parts of the kitchen after supper and no one had to clean up the whole kitchen and no one ever had to do any other chores. So I explored that with him. As I asked questions, Chef seemed surprised to realize that the other/older foster children (in jr high, according to Chef, when Chef was in grade 5) in that home were actually doing supper dishes for six people compared to him doing supper dishes for two. He'd apparently been focusing on the fact that the kitchen chores in the foster home had been divided among 4 children (dishes for family of 6 plus bigger kitchen), whereas his kitchen chore involves the dishes plus wiping the counters/stovetop plus sweeping (dishes for family of 2, tiny kitchen). Chef then pointed out that no one there had to do any other chores. I asked if they had to keep their rooms reasonable. "Well, yeah, but that's it other than helping in the kitchen." "Did they have to get up in the morning and wash up?" "Yeah." "Were they expected to wear clean clothes?" "I don't know." "Hmmm, so you're thinking they had it easier because the kitchen chores were divided up, even though they had to clean up after more people, and they didn't have another chore to do on the weekend?" We talked a bit more then had supper.

Chef worked on dishes again after supper and was done in half an hour. Unfortunately, about a sinkload needed to be "re"washed, and there weren't any clean teatowels available; some had been tucked away in different places in the kitchen closet and hadn't make it into the laundry, so the rewash will need to wait til tomorrow.

Food: At supper tonight, I asked Chef if he could get out a leftover meatball that was in the fridge. Chef initially said, "OK" and went to the fridge - then he stopped, looked at me, and said "I ate it last night." "Oh. I didn't see you eating it in the kitchen or living room or anywhere." "That's cuz I snucked it." Honesty! No games, no lying ad nauseam. Honesty! I told him to go think about the appropriate ways of having food and gave him kudos for being honest about sneaking. After finishing his supper tonight, Chef asked if he could have an orange! I'd just bought a box of Christmas oranges that was on sale, and I knew I'd be having one later in the evening and figured Chef would want one then as well, so we talked about some other options and I told him he could have baby carrots for now then have an orange with his popcorn during his free time once he was finished his dishes. He ate the carrots, then worked on dishes - see above. He started popping popcorn and peeling an orange, but was reminded that free time comes after dishes and dishes hadn't been checked. Chef accepted that. I went into the kitchen to check the dishes and discovered the popcorn popper was sitting in a puddle of water beside the sink; plugged in and turned on. After removing it and drying it off, I reminded Chef of the importance of not having appliances in water and not having water all over the counters. Chef cleaned up the water, said that he would get his laundry done tomorrow so he could finish dishes, brushed his teeth, said goodnight, and went up to his room in good space.

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

Tuesday, October 12, 2010

Long Weekend

Late Friday afternoon, Chef and I went out for a snack. We talked about Chef still needing to bring up his laundry from the laundry room. Chef said that he thought he couldn't do laundry except on Thursdays now because on Thursday I'd said he should easily be able to get his laundry done on Thursday. I reminded him that he still had from Thursday til Saturday at supper to do his laundry, even though his one load of clothes and one load of tea towels shouldn't take more than one evening, and that he needed to get his laundry done so he'd have clean clothes to wear and clean tea towels in the kitchen. Most of our conversation, however, was about food. When I talked with Chef about removing food from the kitchen or having it out where he could see it, he said it is too hard for him to see food because he always wants it. He said he wants food all the time and whenever he sees it or smells it or thinks about it he has to have it. If there is a bag of marshmellows on the table, that's all he thinks about. If there is a loaf of bread on the counter, that's all he thinks about. He just wants to eat all the time. We talked about when he was younger and how he felt about food then and whether or not it has changed at all. He said he still feels the same way; he wants food all the time, and it feels better when he eats it by himself because then he doesn't have to look at other food. He also said it feels better when he eats without anyone knowing because it feels more like it's just his then.

We talked about different foods that might work to have out all the time so it would be there without Chef having to go looking for a snack and seeing other food that he might want to sneak. I suggested having a bowl of popcorn on the table at all times, and whether Chef felt that might be helpful. He immediately said, yes! (I found this interesting, since the only difference between this plan and what is already "the norm" at home is that I am specifically telling Chef to that he can makes popcorn anytime he wants and that there should always be popcorn in the bowl. He already has access to popcorn anytime but rarely makes it.) I smiled and said that was great, and that we'd start right away - when we got home, we'd make a big bowl of popcorn and Chef could eat to his heart's content, even if that meant the entire bowl, and could make more whenever he wanted to make sure the bowl was always full. Chef did not look happy with this; he looked at me, his eyes were starting to redden a bit and water up. I asked what was the matter. Chef said, "You mean you're going to make me eat that whole bowl of popcorn?" I found this interesting (though I tried not to show it), since Chef has eaten so much more than a bowl of popcorn on many occasions, and assured Chef that no one was "making" him eat "that whole bowl of popcorn" but that it would always be available to him, he can eat as much as he wants whenever he wants, and he can fill it up as often as he wants. Chef responded, "Oh, ok" then returned to reading a newspaper on the table.
For brunch, Chef had eaten sausages, eggs, and panfried potatoes, then an apple. Two hours later, he ate a bowl of borscht. When we got home (about half an hour after eating the borscht), Chef immediately filled up the popcorn bowl and ate almost the entire bowl. About an hour later, he ate a very full plate of supper (liver, potatoes with gravy, beets). After supper, we spent close to two hours walking with a friend and her dogs. Chef dropped into bed soon afterwards.

Before supper on Friday, I told Chef that he and I had been invited out for a Thanksgiving weekend outing and told him where we'd be going (a place that Chef has always enjoyed). Chef responded, "Oh ok, I'll just stay at (the neighbour's) instead." "Really? Why?" "There will be too many people." "But you've always loved going there." "There's too many people though." Chef went over to ask the neighbour if he could stay there the next day but she wasn't home. I suggested to Chef that the neighbour already had a lot going on for the weekend, with two Thanksgiving family events. Chef responded, "Oh ok. I won't go there then."

Chef slept in til almost lunchtime again on Saturday, then decided he wanted to make brunch. I reminded him that he already had dishes he hadn't finished (had put away dirty dishes and left a few here and there over the past couple days) and that would be a better bet, and I'd make lunch. Chef's eyebrows went down and he looked at the floor. I debated. I don't usually ever give in to a grump, but I wasn't about to let this issue escalate to the point where we wouldn't be going for an outing, and knew that it would be yet another opportunity for Chef to experience that using time for something he wants when it could have been used for something he needed to do - well, I knew full well that part didn't really matter. I reminded him that he would still need to get the dishes done later (can't use cooking as a way of getting out of dishes for which he was previously responsible) but if he wanted to do brunch he could. He asked if he could make what he'd made yesterday. I told him it was his choice but we were being picked up in half an hour and he still wasn't washed or dressed (a whole other chapter), and that he still needed to bring up his laundry. Chef made sausages, eggs, and panfries. VERY nicely done. I'd decided to use those extra few minutes to do up some s'mores (rice crackers with marshmellows and chocolate melted in-between) for us to take along. Chef went down to the laundry room and pulled one outfit from the dryer and changed.

Chef seemed quite pleased, content, and happy with his day. He chatted in the car about what he was reading in his Guinness World Book of Records, seemed very relaxed throughout the outing, saw the "Rescue Inc" fellows with my friends while I wandered off and took some photos, did a lot of laughing and chatting at a party store, and read his books while we ate supper.

The plan for Sunday was for us to make a smaller version of a Thanksgiving dinner for the two of us. Chef again slept til almost noon and again wanted to make brunch. I reminded him again that it would be better if he just focussed on getting his dishes done from the week and I'd make brunch. He said he would do the dishes after brunch. Again, he made a terrific brunch of sausages, eggs, and panfries. Again, he puttered with dishes. I asked how the popcorn was coming along and did the bowl need filling? "I'll make some," Chef replied. The popcorn maker hadn't been running very long when Chef unplugged it. There was very little popcorn in the bowl. When I asked Chef what happened with the popcorn, he said that if he makes too much popcorn, it doesn't all go into the bowl and that bothers him. "What about turning the bowl? If you turn the bowl, the popcorn doesn't all pile up on one side." "I have to turn the bowl??" "Well, turning the bowl makes room for more popcorn to fall into the bowl." "Then do I have to do a whole scoop??" "We usually do a whole scoop for one bowl. That's what fills the bowl. If you want, you could do less and then the bowl just needs to be filled more often." "Would I have to fill it more often then?" "Well, I could easily do that or you could do that." "K, I'll do more." Chef looked somewhere between uncertain and displeased. I'll need to explore this more with him sometime. Chef then spent most of his time just eating popcorn. I reminded him that we needed the kitchen finished up so we could make our dinner and dessert. Chef slowed down. He kept singing, but slowed down. I'm not sure if it was the idea that he needed to get it done but hates chores so didn't want to do it, or whether it was that now he was thinking about food and couldn't focus on what he was doing, or whether he was still tuckered from the day before, or something else, but after I'd reminded him about us doing up the dinner and dessert, Chef seemed out of sorts. (It reminded me of when he was in Kindergarten and didn't want to go to school in the afternoon. I told him we could make a special picnic lunch then we'd go for a picnic before school once he was ready. He'd looked at me and told me that he wasn't getting ready and that he wasn't going to have a picnic and then I couldn't have a picnic either.) A cold supper from leftovers and whatnot in the fridge was the end result and Chef just relaxed in his room. I suggested he take popcorn up with him.
"I'm too tired."
"Too tired to put popcorn into a bag and carry it to your room?"
"*sigh* Ok, I'll take some."

The plan for Monday was for us to make a small version of Thanksgiving dinner just for the two of us. Monday was very similar to Sunday, except that we had farmers' sausage instead of breakfast sausage and that even after going slowly, Chef FINISHED the dishes! Yay! I haven't checked them, but am hoping for the best. He has one more night of his 2 weeks (14 days) of dish-duty that he'd taken on as an extra chore back in July (started earning in June, up to 14 days in July). He hasn't been doing any regular chores during that time aside from occasional bits of laundry. (Chef was very focussed on making potato pancakes for his lunches, but I'd asked him to slow down on the potatoes because he usually has 2 every time he eats them and he is focussing on those again right now instead of other carbs. There is always rice available (I found a great rice from India that has even higher nutritional value than other brown rices, and we've been using that for the past few months), and Chef generally will go to potatoes and potatoes and potatoes when preparing meals until I remind him that he needs to change it up sometime with rice. Chef used to do the same with rice until just a few weeks ago.) I did up herbed chicken with potatoes and mixed vegetables for supper. After supper, Chef put on a pot of rice and got out a frying pan to do up eggs for protein for his school lunches after I reminded him that rice and an apple and some carrots wasn't a complete lunch. I reminded Chef that one egg was enough for each lunch and to make sure he was doing at least a serving size of rice per lunch. Chef took out two cartons of eggs, but showed me that one carton only contained 4 eggs. I reminded him that he only needed 4 because there were only 4 lunch days in the week. (Months back, I had to really work with Chef to keep him from making himself 3-6 eggs everytime he cooked; eventually I discovered that if I wasn't in the kitchen or checking in occasionally while he was cooking, he would do up extra eggs to eat while he was cooking otherwise. I discovered this by the number of eggs out of the carton and the number of shells in the garbage, and started supporting the egg-cooking differently.Now, he knows that 2 eggs per day is more than enough eggs for one day and that 2 eggs for breakfast and lunch means 4 eggs a day and there are much better food options for better health) "Won't I need to do an extra in case I go somewhere?" "No, you've been having suppers at home when you go with R." (R is Chef's support worker. Chef used to take a supper along because they'd be gone from around 3:30 til 6:30 and Chef would be hunry; this year, R picks up Chef just after 3, Chef takes a snack along, and they're back around 6.)

Chef was taking a long time working with the eggs after putting the carton back into the fridge. I went over to the stove to find six eggs in the frying pan, another cracked into a small container, and another sitting on the counter. It was about 7:30 in the evening. I was tired. I told Chef we could finish up the lunches tomorrow, and suggested that he take some popcorn along with him and go upstairs for some downtime. He made a "I can't believe you're asking that of me" face and said, "I have to take popcorn upstairs?" I'm sure I looked surprised, and answered, "Well, we've talked about the popcorn." "I didn't think I was supposed to have food upstairs!" He sounded angry'ish, and I realized that I hadn't specifically talked with him about the popcorn-upstairs-at-night extension-idea of the popcorn plan, and just thought he'd take to it since he is always trying to sneak food into his room anyway - and he had taken some to his room without issue the night before. After a bit of word-juggling, Chef took his meds and went upstairs with popcorn. He was snoring shortly thereafter.

Friday, October 8, 2010


Post-meltdown days seem to usually go more or less one of two ways - either the meltdown continues in different forms, or Chef is in very good space and talks about what happened, what worked, what didn't work, etc., is kind, and appears to regret acting out through the meltdown. Today is the latter. Phew.

Chef waited til we were almost out the door before he got up. He brought some leftovers to eat and we went off to a voluntary music performance I was doing down the lane. Chef seemed in very good spirits and I commented that he seemed to be having a very nice day. He nodded and said that he wanted to be very nice and try to make up for what he had done last night. He did some running on the way to where we were going, sat beside me while I played my music, and commented on the great food they had there for lunch. During the music, he started opening a set of chopsticks to eat what he'd brought. I glanced over at him and shook my head very slightly. He stopped. When I was finished, we walked over to a friend's art shop for a few minutes, then headed towards the thrift shop. Chef still hadn't eaten the leftovers, so I told him he could run home to our deck and have what he'd brought, then meet me at the thrift shop. He did. No issue. While at the thrift shop, we chatted more about what would work for him at school regarding his difficulty with lights and crowds and noise. He said he'd like to wear sunglasses and earbuds, and said that his school staff is now leaving the classroom with him before the bell rings so Chef is not in the hall during class changeover times. I reminded him that he has a school meeting coming up and asked if there were any other things he wanted to see on the agenda. He said he would like to cook his lunches at school, for 3 reasons: other students do that and he thinks that's very cool and wants to show what he can make, his former assistant is the person supporting the other students making their lunches and Chef wants to spend time with him,and making his lunches at school would mean he still gets to make his lunches but doesn't have to use his time at home to do it. We continued chatting while looking at different items in the shop, and I asked Chef again about being gluten-free and whether or not he wanted to remain gluten-free. He asked if there was a cost difference. I said with what we all are able to make the only real difference is when it comes to bread (rice bread is about $6/loaf). Chef's response was, "Oh, well then I just want to stay with the gluten-free. I don't want to switch back." This continues to really surprise me. I wonder if he realizes that.

When we got home, Chef immediately started washing some dishes without being reminded AND - are you sitting down?? He announced that he was going to have an apple!! And then he asked if that was ok! I reminded him that he could snack anytime as long as it was appropriate snack food and not being handled in a sneaky way. Chef then called out from the kitchen,"Mom! I'm sitting at the table and having an apple!"

I haven't talked with him today yet about snacks, and figured we'd chat about food during an afternoon walk.

Very cool turn of events.


How to best support Chef's food challenges has been one of the most difficult aspects of raising Chef.

Here's what we know:

-According to pre-placement information, Chef experienced prenatal drug exposure and early life neglect, had more than one foster placement in addition to his few months with birthmom, and that he'd come into his last foster home having had only juice or water rather than formula the first few months of his life
-In his foster home prior to placement, Chef would not accept many foods other than meat and potatoes and alpha-getti, though his foster mom said he would eat an apple if they carved a face into it. She once showed me how Chef responded to her offering of food. She put him in his highchair, then opened the fridge, took out an item, asked Chef if he wanted that or liked it or made comments similar to, "Mmmm, doesn't this look good" etc. With every item, Chef would grin and shake his head. Foster mom would then place the item on the counter and remove another item from the fridge and present it to Chef with the same result. Chef shook off every item she offered in this manner until she took alpha-getti from the fridge, and that's what Chef accepted.
-Chef has stated that it's difficult to be around food because he wants it all.
-Chef has stated that he prefers to be by himself in general, and prefers to eat by himself
-Chef says when he eats by himself the food feels more like just his, and he doesn't have to see other people

-Food-sneaking has happened any time of the day or night, even right after a meal
-Schools selling chocolates for fundraisers? Entire case between the time he'd receive it from his teacher during the day and the time he got on the bus; though in grade 8 or 9 (schools were no longer giving Chef any chocolates to sell), he did purchase some boxes and shared them with other students. Unfortunately it wasn't with his own money.
-My grandmother and I once wanted to see if Chef really would keep eating if there was unlimited food available to him. He was 3 years old at the time. We took him to a restaurant after he'd eaten lunch one day and ordered a "finger platter" that was listed as being large enough for 2-4 people to share. My grandmother and I ate the chicken wings and battered shrimp, but left all the rest (numerous raw vegetables, battered zucchini sticks, etc.) My son ate them all except for a few celery sticks that were still on the otherwise-empty platter as my son slowly laid down on the bench seat and closed his eyes, raw veggies in each hand. That's when we knew that this was more than just appetite.
-Chef's food-sneaking has usually not involved a "regular" amount of food; it's usually a large amount of food and multiple food items (an entire box of cereal and an entire loaf of bread and a bag of apples; an entire loaf of bread and a bottle of salad dressing and a bottle of mustard; a bottle of salad dressing and a box of cereal and various other items, etc., etc.)
-It took many years and many reminders/prompts before Chef would get himself a drink other than apple juice, or water from the bathroom tap (though he says he doesn't drink water otherwise because he doesn't like water). He used to drink milk on occasion, before being dairy-free and after as well, but rarely does anymore. He is now 15 and still will rarely have a drink and will sometimes show frustration over being reminded to do so. When I've purchased one-liter boxes of apple juice,he often empties 4 or more in one day; I can't afford to provide unlimited apple juice nor the amount of apple juice he'd need in order to have 8-10 glasses of liquid per day. When the apple juice is gone, he doesn't do anything different with drinking unless I buy more apple juice (at which point he drinks as much as he can). He does like tea; he seems to prefer hot tea over cold tea (unless he'd be given cans of iced tea; I'm sure he'd drink those or cans of pop all day long if he had that option!) I've recently given him a cup of coffee. Not that caffeine-drinks are necessarily great for liquid intake, but after reading that caffeine helps some folks with adhd and fasd, I figured I'd give him a cup to see how he would do for a few hours afterwards, then talk with the school about the possibility of Chef having coffee at school. Maybe the strong flavour might also help satiate some of his food-seeking drives, who knows?
-In Grade 2, Chef wanted to eat his school lunches in the school hallway because "it's too hard to see everyone's food all the time because I want it all"
-There has been much sneaking of food into the bathroom and Chef's bedroom over the years
-When Chef was 2, he climbed out of his crib at night, got a bunch of overripening bananas (they were being saved for banana bread; Chef had wanted them during the day but I had given him something else instead), then took them to his crib to eat them, evidenced by the banana peels in his crib in the morning. He didn't seem to have touched the 3-4 bowls of candy that were sitting near the bananas.
-When Chef was 2, a heavy crystal fruit bowl was empty in his crib
-Chef was very very taken with fruit when he was younger, so at one point I kept a bowl of it in the kitchen for him as well as a bowl in his bedroom. He would eat the fruit in the bowl in his room then sneak the rest of the bag of apples or oranges or whatever fruit/vegetables, as well as other food, out of the fridge and into his room during the night. At that time, it was recommended that a bell be put on the outside of his door and that food not be allowed in his room in hopes that he would learn to access food appropriately. If I remember correctly, that is around the time that Chef's focus shifted to carbs; he would still sneak fruit or other items, but was very focussed on carbs and would sneak/eat an entire loaf of bread, boxes of granola bars, cereal, cookies, etc
-When I used to bake on a regular basis, Chef would sneak the entire cake or pie or all the cookies into his room or the bathroom and quickly eat them
-There have been many times over the years when Chef has not come for meals then hollered that he wanted his food in his room. Adoption workers told me early on that he would eventually come for a meal once he was "hungry enough" - not so. He still held out for food to be brought to his room. One time I brought a green pepper or apple to his room at the end of the second day of him not coming for meals. It was recommended to me by the adoption worker that I should not have done that. When I talked with his mental health worker and pointed out that that was the only way Chef was eating at that point, his mental health worker supported what the adoption worker had said, then added that it might get to the point where Chef would have to end up at the hospital to be fed that way if he continued to refuse to come for meals. He also stated he didn't know of anyone who would hold out for more than 2 or 3 days. I was not good with exploring that possibility.
-There have been times when it seemed as though Chef had almost set himself up so he couldn't come for a meal (ie. making sure he didn't have clothes to wear then attempting to come to the kitchen naked then stating that he wanted his food in his room, etc)
-Over the years, Chef has often often often taken food from other students or teachers. When he started taking the bus, we discovered that he was eating his lunch on the bus then saying he didn't have a lunch when he was found taking items from other students' lunches. We started having Chef hand his lunch to the bus driver and then his EA would meet Chef at the bus and Chef would then carry his lunch into the school. At that point, we were still working out details of how to transport Chef to school. He always wanted to just stay home, and before Chef started taking the bus I was always driving him to school but with much difficulty getting him out the door in the morning. Once he started taking the bus, he had to walk a few blocks, so I initially walked with him then moved on to driving while he walked then eventually just drove to the bus stop to wait and make sure he'd arrive - all in hopes of facilitating independence. Chef, however, started showing up at the bus stop with his lunch already eaten so I started taking his lunch with me to the bus stop to wait for him. He then started making stops at neighbourhood houses and asking for food, saying that he wasn't allowed to bring a lunch to school. Eventually a neighbour told me that there was a door-to-door bus service for funded students. The plan then became that I watch Chef until the bus arrives, and Chef then hands his lunch to the bus driver. The latter part of the plan doesn't always happen. Historically, school staff have been checking Chef's lunches on arrival at school to ensure it's arrived with him, and to take note of what's there so we can gauge how much of his lunch he is leaving for himself for lunchtime.
-At one point, Chef had an always-accessible snack shelf in his classroom as well additional snacks in a fridge elsewhere in the school that would be brought by staff to Chef at his request. This was in addition to the lunches that Chef was bringing - the lunches filled the paper lunch bag to the top. I don't recall whether Chef ever accessed the snack-shelf, or how frequently he accessed the fridge-snacks, though I do recall that staff were surprised at how much food he was still taking and how he didn't seem interested in his snacks, even though they were snacks that he'd chosen. I recall replacing food that had spoiled without Chef eating it. I also recall that the snack-shelf and fridge-snacks were available the better part of an entire school year, and that it didn't continue to the next year because they had so rarely been accessed and the food-sneaking in the school had continued throughout.
-When Chef was still in his younger years, his mental health worker at the time recommended that some food be kept elsewhere in the house so Chef wasn't sneaking anything and everything. I didn't agree and didn't really have another place for food, so didn't follow the recommendation.
-When Chef finished grade five, we moved to a place where Chef could not climb out his window and where he could attend a different school that had the reputation of having better and less punitive understanding of the needs of children living with various disabilities. On occasion, I put sugar, bags of cereal, etc., elsewhere other than the kitchen except at times when it was being used, and kept trying to find a place to keep bread where Chef wouldn't sneak it off and eat the entire loaf. I don't think we've ever ever had a loaf of bread in our home that was eaten "normally" prior to that. When we first moved, I also had an extra fridge in the basement to house jars of homemade soup, frozen casseroles, etc. In addition to the other food-sneaking, Chef would sneak down during the night and eat to his hearts content, evidenced by empty jars/dishes in his bedroom and in the storage room. One year on the week before hallowe'en, I put the bags of candy in my room but left some downstairs in a bowl in the kitchen. Chef had some of the candy from the bowl on occasion when I asked him if he didn't want any, but one night after he'd gone to bed and I was still downstairs, he'd made a hole (about 9"x9") in the drywall between our bedrooms in hopes of retrieving the bags of candy (I had already been locking my bedroom for some time prior to moving already; Chef would often go through my bedroom or his sisters' bedrooms, taking whatever seemed to tweak his interest.)
-Chef has always been told that snacks are available to him, and we've discussed snacks and he knows what is and isn't appropriate to eat. This has not kept him from eating entire jars of peanut butter or jelly, drinking entire bottles of pancake syrup or corn syrup, etc., etc. Knowing that he can have snacks whenever he wants has not kept him from sneaking food, and it has been rare to actually see Chef having a snack. He has stated that he prefers to be by himself all-around and that it's easier for him to sneak food because then he feels more like the food is his and he can eat by himself. He says being by himself is less stressful for him than being around other people.
-Interestingly enough, Chef has consistently come for many more meals once I stated that we wouldn't be eating at the table anymore. It just seemed too difficult for Chef to sit at the table with other people to eat. He was always watching the other plates, saying that he didn't like eating at the table, etc. We now eat in the living room for the most part, on furniture that does not face each other. Sometimes we watch the news or put in a video. And now, Chef sometimes chooses to sit at the table on his own.

I could go on and on, but if we fast-forward to today - I have removed flour, sugar, cornstarch, vanilla and other flavourings/extracts, etc., from the kitchen, but Chef has full access to the fridge and freezer etc, and knows he can have a snack when he wants. I've sometimes wondered why he seeks out such unusual snacks at times; I realize sometimes it's for sugar content, but flour mixed with vanilla? Sneaking and rushing through an entire jar of peanut butter instead of enjoying a plate of crackers with peanut butter is a sad commentary. It's not that Chef has never chosen to have a snack in an appropriate manner (in the living room, the kitchen, on the deck, or other places that don't involve sneaking/secretive snacking), but mostly when he does, it's at times that I have suggested it rather than those times being self-directed. Maybe I need to be more proactive in teaching Chef steps towards self-directed snacking.

So, with everything in mind, I am going to still keep the "highly unusuals" elsewhere in the house (so Chef isn't eating flour and vanilla, etc) but will stil keep the other food items still in the kitchen and accessible, with the ongoing reminder to Chef to snack when he wants but without sneaking. We are going to have a big bowl of always-accessible popcorn always on the table or on the counter, and Chef can gladly take some with him when he leaves the house if he wants; in fact, I might strongly promote that for the first while. I'm also going to be more proactive in his snacking otherwise. Since Chef does not do much self-directed snacking yet at this point (other than the food-sneaking), I am going to work on helping him gain more awareness of what/how/when he's eating. It's been recommended that we do up a food journal, so we'll work on figuring out how to fit that into a daily routine. And I am going to be reminding him regularly to eat (appropriate!) snacks with hopes that he will eventually embrace it on his own.

Thursday, October 7, 2010


Thursday, October 7, 2010

It is the Thursday before Thanksgiving. Traditionally, Chef has often not done well with any kind of holiday/celebration. It's yet another change in routine, it's still the beginning of a new school year, he asks almost every day whether or not my daughter and granddaughter are going to be at our place or not and where they are. There always seems to be so much running under the surface for Chef.

On our way to the store today, Chef looked at me and said, "Oh, I have something for you. It's a hug. I haven't given you one in awhile." Then he hugged me.

Wow! THAT is a rarity.

While we were at the store, Chef talked about some things he'd like us to make on the weekend. Fantastic! Chef doesn't usually initiate conversations like that, plus there were some "planning ahead" pieces in that statement! Some of the items required flour. When I reminded Chef that some of those items might have to wait because he'd recently eaten the rice/potato flour, he said, "Ok." I asked him how he'd managed to eat flour just on its own and he said he hadn't - he'd mixed it with vanilla.

Chef had a good evening tonight. We ate supper around 6:30pm, he tossed in his laundry, did some dishes, talked about the painting he'd brought home for me yesterday, we talked about weekend possibilities - all in all, a really nice evening.

And then I saw it.

A link of sausage (about a foot long) from the freezer had found its way to the railing going upstairs. I commented that that looked odd and asked Chef what his plan had been.

"To eat it," he said.
"Is sneaking raw meat from the freezer and putting it in the railing the appropriate way to get food?"
"What would have been better?"
"To eat something else."

"And sneak it?"
"No. But the package says it's been cooked."
"Does that make it appropriate to take it from the freezer and try to sneak it upstairs?"
"No! But I was hungry!"

"We had supper not long ago. If you were still hungry wouldn't it be better to have more supper or to have an appropriate snack?"
"I want the sausage!!"

Chef's eyebrows went down. His arms crossed. His voice raised. And Chef was reminded that he could either take some time outside to calm down or show that he could be respectful inside. Chef slammed out the door. He had taken his dresser drawers outside awhile back because he had never used them as drawers (except for a few puzzle pieces in one and food hidden under some fabric in another) but was frequently opening then slamming them when something wasn't going his way. He and I had talked about using the drawers for plants on our deck next year. Tonight, 4 out of 6 of them were destroyed. Chef started by banging them up against the house and the door, then started taking them apart and using the wood to hack apart the other drawers. I found it interesting that when I came out to give him his med, he stopped what he was doing, opened his mouth for the med, swallowed, then opened his mouth again to show me he'd swallowed. When I turned and went back into the house, Chef went back to grumping, banging on the house, and destroying the drawers. I called the local crisis unit to have someone on the phone while this was happening. We stayed on the phone while Chef finished with the drawers and agreed to clean up the mess and use his tools (usually exercising, especially if he is outside; inside tools also include reading, art, etc.) to deal with his frustration/tantrumming. When I got off the phone, Chef came running in the house screaming that he couldn't stay outside because there was something scary, then pointed to a tiny kitten on the lawn. Chef has never shown any fear of kittens. I asked if the kitten had surprised him and he said, "Yes, and it shouldn't have done that! I can't be outside with a kitten!" I picked up the kitten. Chef continued his tantrumming and yelled that he wanted to come inside. I reminded Chef that I hadn't seen a turn-around yet and needed to see him put some effort into dealing with his tantrumming. Chef walked away, turned around, folded his arms across his chest, and made a face at me. I closed the door. Chef started kicking/banging against the house and the door, and ringing the doorbell repeatedly and swearing. I took the kitten to our back door and gave it some food on our deck, thinking it might stay there for a bit, then I went back into the house. Chef was still tantrumming out front though he would occasionally pause to stare at the house with arms folded across his chest and an angry expression on his face, but would then go back to the tantrum. He even spent time playing with the kitten, who'd returned to the front yard, and would then go back to tantrumming. I called the police so he would receive the message from someone else that it wasn't ok to do what he was doing. The neighbours also came out and talked with Chef, but he'd initially continued on with the banging/kicking/swearing until I came out and said that I'd call the police. Chef stopped immediately and leaned quietly against the wall with his hands folded in front of him. The police came, talked with him, laughed with him, did a few jumping jacks with him, had him apologize, offered him their business card, and told him to listen to his mom. After they left, Chef and I went into the house and Chef immediately started to say something to me using disrespectful tone but I interrupted him and told him he had a choice of starting all over again by taking it outside to deal with it or turning things around immediately. He then rolled his eyes and started to try to argue. I told him that the message he was giving me was that he wasn't yet finished tantrumming and asked if that was the message he wanted to give.
"No," was the reply. By now it was after 10pm (I'd found the sausage around 8'ish). I said goodnight to him and Chef stomped into his room. I called him and asked him again if he still had some frustration to deal with because that was the message he was giving by stomping away and not responding. He started to roll his eyes and I told him to look at my eyes and take the time to find his calm. I haven't done that in ages and wasn't sure if it would still be beneficial - but Chef's eyes met mine and there was a moment of quiet. I then repeated, "Goodnight, Sweetie. Hope you have a good sleep," and Chef calmly said goodnight and went to bed.

I was just telling someone this afternoon that Chef has come such a long way in his life, and that a lot of his attachment difficulties have been healing (not healed, but healing!) over the years. This evening's trigger was very obviously one that is not historically unfamiliar - when Chef has tried to sneak an item into his room or the bathroom and the item is discovered before he can eat it or use it, he becomes furious. I had discovered the length of sausage before it had made it into his room and before he had a chance to eat it.

Tomorrow I'm going to start a combination of support strategies regarding food and see if a combination might be more beneficial for Chef.

Monday, October 4, 2010

Vanilla (or "And We Parents Become the Stashers")

Today I've been moving food to a locked cupboard. This sure isn't an ideal support tool and hasn't been necessary for quite some time, but those of you who have been following the blog know that the recent transition period has seen the food challenges all back in full swing - and then some!

A few days back, I'd discovered that the large vanilla extract bottle was quite a bit emptier than it had been the last time it was used. I decided to put it away in my room. Today as I was moving food, I found two other vanilla extract bottles at the back of the top shelf of one of the cupboards - both had been drained empty. Needless to say, extract of any kind will no longer be kept in accessible kitchen cupboards.

**UPDATE: My son is due home in a few minutes, so I thought I'd best triple-check the locking doorknob that I've put on the closet then get the closet closed. I'd checked the key/lock before installing the doorknob. I'd checked it again after installing it. Both times, the key unlocked the doorknob. This time? The key didn't unlock the doorknob! My son is about to walk in the door, and all the "cupboard food" is now in an unlocked closet a few feet from his bedroom (because all the food easily fit on a couple shelves in that closet). Once he walks in the door there can't be any more attempts or he'll know that's where it all is and we could have another adventurous night ahead!

Life can be a funny thing at times

"Morning After Respite" and "Food"

Chef came home from respite this morning to get his lunch about 15 minutes before his bus would arrive.

When he walked in the front door, he had some difficulty maneuvering around his "stuff" he's been piling for a few days in the front entrance - there were about 6 small items in total that were supposed to be for the outside garbage bin and a small plastic bag for the thrift shop. It was a small pile, but a pile nonetheless, and certainly didn't belong in the front entrance where it would cause problems for Chef using the door. Natural consequences.

When reminded (again!) that the front entrance would be easier to use once the pile is cleared up, Chef chose to clear it up! He did so in three parts; two trips to the bin, then down the lane to the thrift shop with the small bag. Just before he returned, the school division called to say his bus wouldn't be running today due to a medical emergency. I told them I'd work on figuring out transportation and if I couldn't then I'd just keep Chef home. I made a couple plan changes, and was phoning the school when my neighbour rang our doorbell. This was all happening within the first 15 minutes of Chef arriving home. Not fun for me; that much more difficult for Chef. Ah, Monday mornings.

I noticed Chef was wearing a dirty, wrinkled shirt when he came home, so I asked him to change it before heading off to school. He made a face and told me it was clean. I pointed out where it was dirty. This was not received well - our short morning together had been very busy thus far. I told Chef to take a bit of time in his room to just relax and find his focus.

A few minutes later, I called Chef down to get his lunch from the counter and go out to the deck. I'd put everything out on the counter (apple,carrots, peppers, rice/beef casserole), he just needed to pack the items into his lunchbag. Instead, Chef opened the fridge. I pointed out that there were lunch items on the counter for him and that his lunchbag was still in the living room where he'd left it last week. He said, "Ok" and kept looking in the fridge. I told him there wasn't time for anything else and that he needed to get his lunch and go out to the deck. With eyebrows down, he got his lunch items together and carried them out the door.

I've often talked with Chef about preparing "dessert" items together, such as cream puffs or rice krispie cake to take in his lunches with the idea that he would have something right in his lunch that would be immediately available for him when he feels like seeking carb-type foods otherwise. I still think this would be a very beneficial idea for Chef's lunches, though his responses to this have been varied - usually he just doesn't want to make items on the weekends, the ingredients often disappear before the items are made, or the items I make disappear en masse, leaving nothing for lunches. When Chef was in his younger grades (and prior to going gluten-free!), the lunches I packed for him were so large that the top of the lunch bag couldn't fold over. In addition, he also had access to snacks that I brought to school for him on a weekly basis. Chef still secretly and successfully sought out food otherwise - food belonging to other students, staff, the food collection box in the hallway at Christmas, etc., etc. At one point, Chef also had open access to a snack shelf in his classroom; I don't recall if he ever accessed it at all, but he still sought out food otherwise. Food remains a very challenging area for Chef when he does not have an adult with him.

Friday, October 1, 2010

Respite Weekend

Last night after supper, Chef agreed that he needed to get his laundry done so he didn't have to worry about it the rest of the weekend, and said he would ask his sister for permission to go into the basement (because she is home and he has to walk through her room to get to the laundry room) as soon as she was finished with what she was doing. I told him that in the meantime I needed to chat with him. Our neighbour had told me that the last time Chef was at her place he was loudly and repeatedly passing wind and laughing. I reminded Chef that that isn't ok in our home and certainly not ok to do in the neighbours' home either. I told him he could go up to his room to think about that while waiting for his sister. I called him about three minutes later. No response. I called him again a couple of minutes later. Nothing. His sister finished what she was doing. After chatting with her a bit, I quickly ran an errand. I glanced up at Chef's window from outside and noticed his light was off. When I got home and peeked into Chef's room, he was sound asleep. I'd planned to talk with him about the weekend but sure wasn't about to wake him up to do so.

The weekend is a music and culture weekend event. Chef has previously attended, though has always participated very passively. One time, he did agree to attend a workshop on his own while I attended one (he has known most of the musicians for quite a few years, so he feels fairly comfortable around most of them). He was the only one in his workshop, so he had an hour of individual music instruction. That was awesome! With me being a musician, Chef has had much exposure to the music community, has attended many group performances, and has performed a few times with our group as well (including one time when he played part of a tune as a solo at a public indoor market and one time when he was even on stage with us at the Concert Hall). And though he's chosen to no longer play any instruments for the time being, he definitely still benefits from being at events. However, given the way things were around camping, and the cultural event in August, and him (suddenly not!) attending the music retreat in July, and the fact that Chef has often said to our neighbour, "I didn't want to go anyway" regarding music events, I chose to do this weekend on my own. Sometimes I feel like 24/7 staff whose only time off is when Chef is asleep or at school or with a respite provider. So even with recognizing all the social benefits and feel-goods this event may have provided for Chef - sometimes, I just need a break.

This morning, Chef independently started his day again with 20 minutes of exercising. Awesome! This was followed by much rushing-around-but-not-really-doing-anything. As of this morning, Chef has now agreed that he will go back to eating breakfasts that I make, so we will re-start that next week. I'm glad he has come to the point of recognizing that benefit.

Unfortunately, Chef was out and waiting for the bus before there was a pause for me to talk with him about the weekend (for those of you unfamiliar with Chef's challenges, there have been many times when I've started preparing Chef for something different a few days or more before the event, only to have Chef be all over the map for the entire time leading up to the event - it's always tricky trying to find that balance). When I told him I'd be going away and that he'd be at the neighbour's - he cried! This completely caught me off-guard. When I told him I was going for a music weekend (thinking he'd say he didn't want to go anyway), he continued to cry and said that he wanted to come. I was stunned. There wasn't much time before the bus. I asked if he'd put in his laundry so he had free time on the weekend, and regretted asking that question as soon as it was out of my mouth - as though he were missing the weekend away with me because he didn't do his laundry. I hugged him and told him there would be other music weekends together and that I hoped he'd have a great weekend. He dried his face and walked to the bus.