Work Experience and Building Community

July 15, 2011

The idea for this summer has been to set up Chef with various volunteer positions. This continues Chef's understanding of the importance of building community, allows more people in Chef's community to get to know him, and provides work experience for Chef.

Our local library, thrift shop, and arts center all have volunteer opportunities. Chef already has some volunteer experience in visiting with seniors, helping out at local community events for newcomers through the local Immigration Services program, and helping out with events for adults living with disabilities. So far, Chef has always had me alongside supporting him while volunteering. I am partially hopeful that perhaps we'll be able to find a volunteer opportunity where Chef can be on his own amongst other volunteers/staff, at least for part of a day.

This past week we've been volunteering at the local arts center. They run a day camp for young children. Chef attended the day camp when he was younger, but never actually made it through an entire week. This past week, he spent over 5 hours preparing crafts one day and helped with crafts, games, various arts activities, and supervision for 2 full days plus one afternoon. With me by his side, Chef was very helpful with cleaning up, took direction well from the day camp coordinator, and needed frequent reminders that he wasn't there as a camper to play. Without me there at his side, Chef very much seemed to view himself as a camper and even had a moment or two when he disrupted activities by engaging other kids in playing something other than what they needed to be doing at the time. By his last volunteer day there this week, Chef's leadership skills had shifted to pointing at a child followed by, "Hey! Hey hey hey! Nuh-uh! I said no!" Maybe time will bring a sense of balance.

Next week, we're planning to spend only one or two afternoons at the arts center - this past week took a bit more energy than I could afford, and left little for what was still required for evenings at home. Tomorrow we're planning to ask at the thrift shop about volunteer opportunities, and next week we'll look into what's available at the library.

Chef has also been working on figuring out what he can create to sell online, and has been spending time with a few books(autism and history) as well as one of the guitars. In fact, until we get the window issue dealt with, Chef has been singing and/or playing guitar in his room at bedtime until he is too tired to stay awake. (Now we just need to figure out the mornings.) This evening he made supper (ground chicken mini-burgers, mashed sweet potato, steamed asparagus), asked if he could please do chores tonight so he could spend time playing with one of his nieces this weekend, and asked if we could watch a movie together. Very cool.

**Umm - Chef just brought my laundry upstairs (on hangers even!) because he wants to get his clothes into the dryer and mine were done. Nothing like this has happened before. Ever. "Wow!" seems like a drastic understatement.

Downtime, Decks, and Toga Days

July 11, 2011

The retreat. The music retreat. Where do I begin?

There's so much to tell because Chef did so exceptionally well the entire time!

And the day after the retreat, he came along on a day trip with a friend and me, followed by a day of absolutely nothing except life basics, followed by making crafts for his first volunteer shift at the local arts center. A year ago, I never would have imagined Chef accomplishing what he's accomplished in the past week.

I've decided to separate "The Retreat" from today's post. It really does need its own celebratory space.

And so, on to today....

Today is Day #2 of Chef sitting in his room wrapped in a sheet that has definitely seen better days. In my ongoing attempt at minimizing, I decided about a month ago that I don't need all the sets of sheets I've received over the years, so I passed along a nice, new'ish set to Chef. I figured a high thread count would enhance its longevity. Fast forward a few weeks and you'll find the bottom sheet no longer in existence and the top sheet is now torn along the edges with various holes here and there, and spotted with fingerprint-shaped bloodstains from picked/dabbed scabs. Apparently this is the stuff of which togas are made.

The most recent TogaDays started a few days ago if we include the lead-up days. Chef was reminded to toss in his load of laundry on Wednesday evening once we returned from retreat. He was reminded again on Thursday and again on Friday. On Saturday morning when Chef came downstairs to play with his niece who'd arrived for the day, he went down to put his laundry in the dryer then said he would finish on Sunday. I asked him how his clothes would look if he kept them in the dryer overnight. "Not good. But I don't want to do chores, it's holidays." "You've been on holidays for over a week without chores and you need clean clothes." "K." But it wasn't ok. Chores were avoided at all cost and we shifted into "no fun for Chef til his clothes are done and dishes are finished" mode. By yesterday, Chef had completely run out of clothes and decided this meant a day off to just hang out in his room. This created two self-confessed dilemmas for Chef: hunger and boredom. Togas are not welcomed mealtime attire in my home. This means that Chef needed to get his clothes, get dressed, and be ready to eat at mealtimes. Chef chose otherwise and was given a snack in the afternoon and another in the evening. We talked about what had "worked" and what hadn't "worked" and what would have "worked" and about Chef's plan for the next day. I went downstairs to water plants and discovered little white clumps/spots all over the deck. Baking soda. Chef was not impressed with having to come downstairs in his toga to clean up his mess on the deck.

Today was a rerun of yesterday until 1pm when I told Chef that he needed to go outside and get back into his exercise program and get his day going. Chef grumped down the stairs and out to the deck, tucked his elbows against his body and limply flapped his hands while bouncing a couple of times. He then came to the window and grumpily asked if he could come inside. I told him he could gladly come inside once his attitude shifted, and reminded him (again!) that he needed to cover his private areas. This was met with two stomping, partial jumping jacks and a grumpier return to the window. I told him if having the window open was going to be too difficult for him to focus on finding his good space, I could easily close it. Chef crossed his arms across his chest and scowled at me. I closed the window and walked away. Chef bumped his head against the screen, scowling into the kitchen. I closed the blind. Shortly thereafter, Chef was engaged in getting his exercise going. I went out to the deck with my guitar and strummed quietly. One of neighbours came by and said she was concerned because she's been seeing Chef leaning far out of his bedroom window. She also wondered why there were little clumps of "white stuff" all over their deck and the yard between our deck and her's. I glanced over at Chef with raised eyebrows. Chef scowled and said "I didn't.." but I interrupted him by putting my hand up and saying, "Stop. You need to go over immediately and clean the neighbours' deck." Chef stomped over to the neighbours'. The neighbour kept repeating, "It's ok, I cleaned most of it up. I just don't want him doing that anymore. And how did he throw it so far?" I told her my guess was that he'd probably mixed it with water to clump it together (interestingly, Chef had told me he couldn't do any chores on the weekend because he didn't know where the baking soda was) and told her that Chef still needed to clean her deck off as part of the message that this was not appropriate for him to do. The neighbour then told Chef that the next time he throws anything onto her deck she would be calling the police. I agreed with her decision. We tried talking with Chef about safety concerns regarding leaning out the window but he was in "scowl and ignore" mode, though he was doing a good job of cleaning up what was left of his mess. I decided it might be a good time to call in a male member of Chef's support network so Chef would have the same message from other supportive individuals other than just his mom (that would be me, the exterior brain that Chef accesses to help him get back to a reasonable space of life when he isn't coping well, aka the target of Chef's anger/frustrations/fear/worry/etc when he makes decisions that don't work for him and/or gets caught in his bad choices) and his female neighbour (who used to be his primary respite provider and now receives disrespect from Chef, though not always). Thankfully, I was able to get a hold of one such individual and he came down and talked with Chef about wanting to take him to hockey games next season, and the importance of dressing appropriately, the importance of safety, the necessity of chores, etc. He also pointed out to Chef that it would be good for him to apologize to the neighbours. Chef replied that he had already apologized but accepted Ed's comment that it would be good to apologize again. I sent Chef back over to finish cleaning up at the neighbours' then we went inside. Chef immediately went to finish his laundry. He then did most of the dishes, lied about cleaning up his messes he'd made on the floor then went back and cleaned them up, then announced that he was cleaning the bathrooms as well. I placed a few calls to other members of Chef's team with regards to the best way(s) to address safety concerns about the window. Presently, Chef still hasn't yet brought a clean sheet/blanket upstairs to his bedroom, but his clothing is clean and dry and hanging in the closet. Chef's had supper, has bathed and is wearing clean nightwear, and is singing in his room - near his door, so I know he isn't leaning out the window.

Tomorrow is Day #2 of Chef's volunteer position at the local arts center. He'll be helping with the little ones at their day camp.

So, we made it. Phew! A bit of grumping, a bit of on-strike, a bit of throwing (there are definitely much-worse things to throw than baking soda!)....but I'm thinking this might have all escalated into full-blown tantrum a year ago. Growth is such a good thing.

Oh Monday, I Will Miss Thee

What a weekend!

As soon as Chef came home from school on Friday, we walked over to the festival downtown. I'd already walked through in the afternoon to get a sense of where everything was, and good thing I did because it didn't take long before Chef started asking what was set up and whereabouts, etc., etc. We did a lot of walking! Chef had a long, fully-loaded vendor hotdog for supper, as well as some fruit he'd brought along. I'd let him know that that was his only treat this weekend other than being at the event itself. We'd talked through the week about how I was choosing not to spend any money on Chef during the event because that's how I felt after he'd stolen from me, and about Chef needing to do chores to earn spending money for the event - which he didn't. But Chef didn't complain at all throughout the festival and seemed to very much enjoy himself. (In fact, when he later found some ride tickets on the sidewalk, I told him it would be a good idea to be a good community member by giving them to someone else considering he has often taken from his community without repayment/restitution. Chef said he didn't like the rides anyway and seemingly easily gave them to a passerby.) We walked the length of the main area first, then walked back along the other side. Chef talked a lot about how fun it would be to go on the small, inflatable bouncer structures they'd set up for the younger crowd. He filled in a ticket by every "free draw" sign he saw, collected papers from various vendors/info tables til I pointed out that he had plenty, and completely lit up when he saw cupcakes with multicoloured swirly icing. We saw Chef's CFS worker again, and again Chef didn't recognize him, and often asked throughout the day, "Who was that?" "Who were you waving at?" "Who were you talking to? Do I know them?" A couple of times we bumped into friends who have family members Chef's age who Chef knows - both times, Chef removed himself and sat a distance away while I visited, even after initially saying hello with encouragement. At the petting zoo area, we talked about how we would feel if we were in a small pen/cage all day having strangers pet and poke, and how it's a bit tricky when it comes to petting zoos because they encourage interest in the animals yet it's a cruel situation for the animals present. Chef pointed to a kitten in a small kennel container and said he sure wouldn't want to be that kitten. (Later on, we returned to the petting zoo with Chef's niece and Chef excitedly pointed and said, "Mom, look! They have kittens here!" I wasn't sure what to make of that.) One spot had a small putting area set up and Chef made 3 attempts to get the ball in and chose a small army figure as a prize. I asked what he planned on doing with it, since I don't allow war toys in our home. "I don't know," he said. We watched one of my former coworkers on the free stage. Chef seemed much more taken with his toy soldier, flying it in the air, pretending to have it shoot until I reminded him he was going overboard for a 15 year old. He grumped a bit, then tuned into the music and was soon tapping along to the beat. When we left the stage area, Chef went back to the putting area and traded in his toy soldier for Canadian flag tattoos. In the evening, we had my oldest grandchild with us and Chef went into full uncle mode. When Chef is in good space, he is so very good with his nieces. We took her to the children's tent where Chef showed her how to toss beanbags into a hole-y cow and coloured with her. Chef very excitedly showed her the petting zoo and proudly pushed her stroller throughout the evening. On Saturday, Chef eagerly packed a bag of food for the day and back we went. We watched a few friends perform on stage, then wandered and visited with folks. Around 6'ish, we were sitting for a moment when Chef pointed to the sidewalk. "That almost looks like a ticket for something except it would be backwards because it says Terms and Conditions on it." I glanced down and nodded. Chef went back to eating some fruit and looking around while we relaxed, then he bent down and picked up the paper and showed it to me. "Is this a ticket for the concert tonight?" It was! And with rush seating, there was no way of returning the ticket to its original owner. I quickly sent a text message to some folks I knew who were already seated by the stage and asked if Chef could join them. So Chef ended his day by attending his first concert and, even though he sat with women, he wasn't there with his Mom! A very tired Chef came home around 11:30pm and went right to bed.

At 1pm the next day, I asked Chef if he planned on coming downstairs at all or if he was going to sleep more. He grumpily came down the stairs, looked at what his sister and I were cooking on the stove (bacon and eggs), and grumpily announced that he needed to do laundry and asked his sister to go down to the basement so he could use the laundry room (because her room is downstairs and Chef has a problem with stealing). She said he'd have to wait. Chef grumped more. I reminded him to quickly get dressed because brunch was already later than usual and wouldn't be waiting for him. Chef slowly dragged his feet over to the sink and said he was doing dishes. I asked if he wasn't eating and he shrugged, so I reminded him to get dressed and have a bite to eat before he does anything else. More grumping. "Turn things around or go deal with your grumpiness or go back to bed, but don't continue the grumping." Chef went out to the deck and did some jumping jacks then came inside with tone/grumpiness. I told him that I was going to do something ONLY because he was out at a concert late the night before, then handed him some of his favourite fruit and told him to go up and have a nice, long, relaxing bath (Chef hasn't bathed again in awhile, so I wasn't sure if he'd accept it as a relaxer at that point) and that if he needed a nap afterwards, that would be fine. About half an hour later, I went up to check on his and heard what sounded like Chef quickly getting into the tub. When he said I could come in, Chef was sitting in the tub with dry hair and a mostly-dry upper body. He responded very grumpily to my step-by-step prompts for washing his hair then shifted (grumpily but on his own!) into washing his body. I went back downstairs. About an hour later, Chef announced from the stairs that he wanted brunch. I told him brunch was over long ago and that the rest of us were having a rest and that he could either just have some quiet time in his room or nap. He went to his room and when he came down later, he said he was going to do the dishes. I didn't say anything. A few moments later, he said he was going to clean the bathroom. I didn't say anything. A few moments later, he came into the living room and said he wanted bacon. I told him the bacon was for brunch and was gone, but he could have peanut butter sandwiches and fruit for supper (he's been asking on the weekend to take peanut butter sandwiches to school for lunch on Monday but I've been reminding him that it's best to have those just at home due to others' sensitivities). He made an angry face and started talking with tone and I just pointed to the window. Chef went outside and did some jumping jacks. When I opened the door to talk with him, he continued with tone. I closed the door and let him work things out for a bit then I asked him through the open window what he should have done when he came downstairs. We reviewed, he came inside, ate, and had a quiet evening in his room. I thought he'd taken some books up with him to read, but when I went to check on him later, I noticed the books on the hallway desk. I went upstairs and knocked on his door. When he said to come in, I opened the door to find a foggy room and a naked Chef standing and holding a piece of cloth over his groin area. His window was closed, his bathrobe was along the floor behind the door, and there was water dripping from different spots on the ceiling and along the walls, and shaving cream foam inside the keyboard bench. I picked up the spray bottle that he'd used from the bathroom and told Chef to open his window and to clean up the water. "I can't open my window. Bugs will come in (Chef has already wrecked two screens in short order, so there isn't one in his window at the moment). That's why I've been spraying water - to kill the bugs." I glanced over to the desk where Chef was pointing. Three dead flies.

I sent my sister, who also works with children with various different abilities, a text message asking if she had any ideas for air circulation in Chef's room. If there is air (warm in winter or cool in summer) coming through his vent, Chef usually blocks it off with his mattress or books. My sister suggested a plug-in fan but Chef has played dangerously with items with electrical plugs so a plug-in fan would make me very nervous, plus he doesn't like air movement. She suggested a ceiling fan, but again that's blowing air and Chef has already wrecked 2 or 3 light fixtures. My concern is keeping Chef's body temp in a good place when he's spending any time in his room on hot summer days or days with high humidity, such as yesterday. We thought maybe ice packs might work - unless he opens them up. Ice frozen in a baggie would quickly be removed and used for various purposes, as I've learned with water in a hot/cold water bottle. Hopefully I can find ice packs that have safe interiors and tough exteriors.

Today is Monday. This is Chef's one exam day. Before school, Chef took out the garbage, got dressed, asked again about taking peanut butter sandwiches, asked if I had made anything for his bus driver (we'd talked earlier in the week about making some baked goods on the weekend to give his bus driver as a year-end gift), grabbed two pieces of fruit, and was out the door before the bus arrived.

Ah, Summer

Today is Chef's official last day of Grade 10.

It's also party day at school and a festival weekend where we live. Both of these could cause the next few days to go either way, but I think I remember Chef enjoying last years town festival so hopefully that and the school party will help in getting Chef past the upcoming exam week.

Chef has been quite quiet the last few days other than regular comments about his EA going to Africa, exam week coming up, and how cool all the video games are at school. He's been wearing his bathrobe inside-out all week, even with reminders, and it is already showing signs of wear and tear even though he's only been using it a week or two. Hygiene prompts have fallen on deaf ears, and the same outfit has been worn for a week. Chef seems more tired than usual and has been sneezing.

When I asked him what he was looking forward to most about summer holidays, he first shrugged and said he didn't know. When reminded to take some time to think about the question before answering, he paused then said, "The quiet." When I asked him for more details, he said he was looking forward to not having to hear noise all day at school.

With Chef's recent interest in reading books about Autism (after watching the Temple Grandin and RainMan movies), I'm hoping his interest will continue through summer. We have tons of books in our house (though I'm trying to minimize!), including many on the medieval era (another area of interest for Chef, though he's recently developed more of an interest in greek mythology), nature, trivial facts, and various diagnoses, etc. Chef's an avid reader, but he didn't do much reading at all last summer (possibly due to my offer to pay him money for any 2 or 3 page book reports he would do on books he'd read). I'm also hoping he'll go back to strumming/experimenting on the guitar - something he was willingly doing outside last year til neighbourhood kids asked him why he was doing that. We'll try some visual art again this summer, probably focusing on watercolours since he did a cool watercolour piece before Christmas. We also have our deck plants and a plot in the community garden, and Chef's usually-eagerly-embraced role is to look for good shots when we go on photography walks.

There is a family who has signed on to do once-a-month weekend respite, but nothing's happened with that since the first weekend Chef went there at the end of April, and we haven't heard from them nor have they returned calls from Chef's worker. My married daughter and her husband usually provide 4 hours of evening respite every other week, but they will be moving to another town in summer. Finding respite providers has always been a challenge. When I worked with Community Living, there were some staff who would have been great with/for Chef, but they weren't interested in taking on respite in addition to their shifts. I'm so very thankful for the respite funding that is in place - hopefully we'll be able to find providers to match.

Studios, Seashells, and Dignity

Thursday, June 16, 2011

This past weekend was wonderful.

I needed to rent a car for an appointment (and when you rent for a Friday or Monday, it costs less to rent for the entire weekend on the weekend special than to rent for just the one day), so took a friend up on an invitation for a day of touring artists' studios up along the lake on Saturday. It was an altogether wonderful day.

On Friday, I told Chef that we'd be renting a car and going places on the weekend but wasn't sure exactly where yet, aside from running errands on Friday evening. He also knew his oldest niece was spending Friday evening with us which always is always a positive note.

On Saturday, Chef read and slept in the car, occasionally glancing out the window and commenting on a place where he'd been. When we stopped to pick up water, I let him run into the store on his own because I could park the car where I could see him, and reminded him to bring the receipt. He was back in short order and very excitedly reported that there were fresh samosas in the store. I gave him enough for two and he came back with his little paper bag, eager to eat them right away. Chef wandered throughout the various studios with my friend and me through the day, commenting on what he liked, and easily went off to talk with folks if he asked me a question and was redirected to ask the artist. Occasionally he moved into what I know as the beginning of his "baby'ish mode" which usually only happens when he is either with someone brand new (doesn't always happen with new folks, but when it does happen it is often around new folks) or happens in combination with something he is wanting; ice-cream, for example! Chef also has no qualms about asking people for something he wants when it comes to things like ice-cream or other items in the "treat" category, so sometimes there's a combination of outright asking and baby'ish mode. All in all, he definitely seemed to enjoy his day. There were the studios with all their colours, textures, pictures, shapes, etc., a lovely dog to pet, instruments to see and Viking horns to blow, chilli fries, ice-cream, the beach, the other beach. Oh yes, the beach. Chef remembered being at a stretch of beach further down the highway than where we were on Saturday, and very much wanted to go there to collect shells, evidenced by the questions/comments about the other beach and the great amount of shells there compared to the beaches we visited. Once he settled into just enjoying where he was, however, it didn't take long before Chef rolled up his pant legs and waded in, collected clay and stones and - yes! An occasional shell!

On Sunday, Chef got up and...well, I don't remember who made brunch nor what we had. But after brunch, Chef did dishes and put in his laundry and put his younger niece into time out for not listening to him about leaving the bottles in the door of the fridge. My daughter and I were quite surprised by this turn of events and were not completely unamused as we quietly watched Chef perfectly replicate all the timeout steps he has seen his sister and me use with his niece. A bit later, I went upstairs and left Chef to himself for a few minutes while he finished up in the kitchen then went out on the deck to play with his niece til we left for my sisters' place. When I came back downstairs, I sadly discovered that my backpack had been looted. There it is. That ol' "he's been doing so well with not stealing" misdirected radar. Chef does well for awhile with not stealing when I'm with him then I'm lulled into a sense that I can let down support in that area once in awhile and BAM! Stealing. I went into the kitchen to see if I could find where the money had been stashed and chatted with my daughter about how it sure didn't work when I left my backpack downstairs with an unsupervised Chef - and there it was! A $20 bill sitting on top of the fridge, nudged near the back. That still left some smaller money unaccounted for, but at least the 20 was found. Chef seemed to have a great time at my sisters' place. He had two mounding plates of supper followed by dessert (and showed his "poor me" expression when reminded that was enough), and spent the bulk of the visit otherwise playing video games with my niece and using her scooter outside (very nice, especially considering it wasn't that long ago when Chef would stay in his room when folks came to visit, and would refuse to do anything to get ready to come along when we were going to someone else's place, even family). When we came home, I told Chef he still needed to deal with his stealing. He made his confused look/scoffing sound and started with, "I didn't.." but stopped when I shook my head. He then went into "poor me" mode. I reminded him that he could either deal with it now or we would be continuing this discussion first thing in the morning and that's no way to start a day. "I took the money." "The whole story." "I took money from your backpack. It's on the fridge." "The rest of the money?" "I only took what's on the fridge." Since Chef has not been doing his regular chores consistently, nevermind doing any extra chores to earn money, he will lose his free time as well as his opportunity to earn money this week in order to pay back for the act of stealing. Now, the tricky part here is that one of Chef's goals in life has often/usually been to just be by himself in his room and to get out of chores. What I've found, however, is that if this is used routinely enough and Chef loses times with his niece in the evening, etc., it does make some degree of difference to him. There have been times when Chef purposely does something in hopes of being sent to his room for at-home respite, but it has a bit of a different impact if it is implemented otherwise. It's my opinion that Chef is growing in this area. It's a very slow growth and there are times when "one step forward, two steps back" is all too true, but it's almost like a life-dance - trying different steps, moving back to his comfort zone, finding his comfort zone being used differently and having to rethink that, finding comfort in moments outside his comfort zone, and slowly realizing that it does actually feel good to grow and experience dignity.

Recent Lunch Mystery Solved - I Think!

June 10, 2011

This evening we were grocery shopping - one of the most consistently pleasant activities with Chef. I really enjoy grocery shopping with Chef. He eagerly engages in every aspect of grocery shopping and successfully completes any and all tasks associated with it. He also is quite chatty while he is checking nutritional labels and prices, asking me whether or not I like certain foods and comparing to his own likes and occasionally the likes of friends at school (yes, the word "friends" seems very accurate this year!), points out if he spots a problem in the store and easily interacts with staff as needed. As we returned to the parking lot, I asked him if he just didn't like the stew anymore and that's why he wasn't taking it for lunches (thinking that maybe he doesn't take lunches when the primary item is something I've made rather than something he's made, and thinking that maybe that's something I'll need to sort of keep an eye on as a possibility). I was wrong.

"No. I just don't like it frozen."
"You've eaten it frozen??"
"No. I meant. Um, I can't think of what I mean. I need it to be thawed up because it's not thawed up at lunchtime."
"I thought you use the microwave at school."
"No. Well I do, but the EA who's with me then doesn't like me using it because I take too long and she's the only EA in the room then and needs to be with the other kids so she doesn't like me using the microwave."
"Did she tell you that, or did you just think that she thinks that way because of something that happened?"
"No, she told me a long time ago so I try not to bring anything that needs the microwave."
"But the main part of your lunches have almost always been cooked food that needs to be microwaved. Why didn't you say something a long time ago when that EA told you that?"
"I didn't want to get her in trouble. Plus I understand, cuz it's alot of other kids too and she's the only EA."
"It has nothing to do with anyone getting in trouble. If you needed a change in the lunches you were bringing, then there needed to be a change."
"K. I wasn't sure what to do when she told me. Besides, I just get full on the fruit I've been bringing anyway, except (Chef's regular EA) says the rash I've sometimes been getting around my mouth might be from the mango I eat every day."

So, one mystery solved - maybe even two! And with that, goodnight!

Glasses at Last!

June 10, 2011

Chef took his glasses to school today!

He also brushed his teeth, and it seemed as though he would take his lunch - he opened the freezer, put his hand into the freezer, paused, was reminded he needed to be out for the bus, removed his (empty) hand, closed the freezer door, walked slowly over to the fruit baskets, picked up a mango and a grapefruit, picked up his glasses, went outside, and started doing some morning exercises. I'll need to explore the "hand reaching into the freezer, removing still-empty hand from freezer without lunch item" with him later. When I intially asked him about it this morning, he said he pulled out his hand because he heard me talking and knew he had to look at my eyes so he closed the freezer door so he could see me. Excellent listening skills recall! The only problem is that he was already going towards the fruit as he closed the freezer door. So maybe "listening skills" was the initial message in his brain but the thought of picking up the fruit interrupted? I asked if his hand couldn't have just picked up the lunch item while it was right there, or did he just not want to take that in his lunch. He said he didn't know.

Last night, after yet another evening of not doing dishes, I asked Chef to sit outside by me while I worked on some deck-gardening. We talked about goals. Chef said his goal is to go to school - excellent life goal! I started asking him questions about the various steps involved in going to school, and kept working backwards until we got back to taking care of one's body, taking care of responsibilities at home, etc. Chef said he didn't want to do jobs at home because he only wants a good job where he can earn lots of money. Of course, we reviewed the ol' "need to show success in small jobs before taking on big ones." I explained (again!) that not everyone likes doing every kind of job, especially when it comes to chores at home, but that they need doing regardless. Chef nodded and said that he doesn't want to do chores. I reminded him that he needed some way of paying back for items he's stolen/damaged. He looked surprised, as though he had forgotten that part. I asked him if he could think of other ways to earn money to repay for items in that category (one past idea was "to make a picture that you could buy from me then I'd give you some of the money" - and I'm pretty sure he seriously thought that was a workable plan! When I offered to do up a website where he could sell pictures, plus numerous other ideas offered to him for making money, he's never shown interest or a willingness to start on anything along those lines). We've explored this possibility before, but this time he just shook his head. I reminded him that the sooner he does some extra chores, the sooner he'd be caught up and the sooner he'd have more spending money. I also told him that I would love to support him in applying for part-time summer jobs this summer but he has to show a willingness to work at home first. He again said that he only gets a little money til then so he doesn't want to work.

If anyone has ideas in this area, feel free to share them! Right now, my approach is to continue to support him in learning through repetition. Incentives historically have not been beneficial (and generally "don't work" with children living with attachment disorder). In the meantime, if you plan on dropping by sometime this afternoon or this evening, bring your own clean cup ;-)

Someone reminded me of something the other day. When a child with attachment disorder is exhibiting some challenges that differ than usual or are of a higher degree, sometimes it's because there's been growth or that they are feeling a healthier attachment and that brings about a sense of fear/panic in them. I think sometimes we forget how scary it is for some kids when they're healing. Chef's grown alot this year. That's been evident in many areas.

When I used to work with adults with disabilities, we'd often talk about putting ourselves in the shoes of the adults for whom we provided support. One individual needed help in using the washroom and sometimes showed frustration in the washroom. Well, there may have been other reasons as well for the frustration, but I'd feel frustrated if I always needed help in that area every single time every single day. And every single day, Chef needs to figure out how to function in this world that he doesn't even understand in so many areas, and he has to do so with a brain that doesn't always function the way he needs it to function and with a perception that makes the world a very confusing place at times. For all these reasons, I believe Chef's doing very well.

But yes, he still needs to do the dishes ;-)

Weekend Balance

Chef spent Friday evening with his sister and niece. I was pleasantly surprised to find that he'd worked on weekend chores. Saturday morning and early afternoon were great; Chef ate, washed up and dressed (still sandals though; he continues to say he can't find his socks because his sister put them somewhere, which she did - on top of the dryer after helping Chef with his laundry. This is the second weekend that Chef has again said that he doesn't have his socks anymore, even with reminders of exactly where they are), and seemed quite relaxed and happy as we ran errands together. We got home just before supper and I reminded Chef that his mattress was still in the front yard and needed to be cleaned up. Chef said ok, then went outside. Glancing outside a few minutes later, I noticed a seemingly angry Chef tearing apart the mattress even more; foam and other mattress bits were strewn across the yard. I opened the door and asked what was happening. Chef looked at me angrily and said that he knew I still didn't believe that he hadn't hidden anything in his mattress. "Well, that's right, but the issue right now is that you need to get your mattress cleaned up so it's not in the yard anymore." Chef started escalating. I reminded him that all he needed to do right now was clean up the mattress and that we weren't discussing anything else about his mattress today. Chef escalated. I reminded him of his anger management tools. Chef continued his yelling and whining and angry facial expressions; I shut the door. Two hours later, the mattress was cleaned up and Chef was calm and inside. He had a quick bite to eat, then we walked down to a small local cafe for an evening of music/jamming. It was interesting to note that when we were listening to the performing group for the first half-hour, Chef expressed some difficulty with the noise-level yet when I went up and started playing with the band, Chef independently and seemingly enthusiastically moved so he was sitting right up front by the band.

On Sunday, Chef attended an AGM with me as well as an afternoon performance, then we spent the evening having a leisurely, story-filled supper with a friend. On the way home, we talked about how Chef had used two hours to tantrum when that time would have been much better spent working together on his lunches for the week then having free time. Chef agreed.

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.

Post-Meltdown

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.

Food

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.

Tantrum

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?"
"No."
"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.

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.

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.

Balance

I've often said, if it weren't for times of issue around school (sensory stressors around bright lights and hallways and crowds and noise, etc., having to get ready in the morning, etc) and chores and lying and stealing and hygiene and responsibility, everything would be fine.

I'm sure many of us have seen someone walk in the door at the end of the day and dump their backpack on the floor or toss their briefcase onto a chair, then flop down on the couch with an exaggerated exhale and a non-relaxed look on their face. They've held it together all day through thick and thin, then they come home and need a place to just relax.

For Chef, frustrations and anxieties are almost always reserved just for home. This is where he can dump everything and know that he will be supported in continuing to learn to dump appropriately. Chef also knows that there is an expectation here for him to continue to learn to use the tools he's been given and trained to use when it comes to anger/stress management. And he also knows that he will be continue to be supported in continued learning and growing to become a contributing member of his family and community.

And unlike the person who can walk in their door and flop then exhale and vent a bit then move on with their evening, Chef's anxieties and frustrations are sometimes delayed or skewed and are communicated through other "behaviours" either in response to something or as a prelude to something he's anticipating.

Aside from all those times (which can sometimes take up the bulk of an entire day or evening or even weekend if there have been issues), Chef and I have a lot of nice moments (good talks while walking, "Mom, would you like some tea?", good talks when driving somewhere, enjoying nature walks, "Mom, there's something over here you could take a picture of", watching videos together, "Yes, Mom", etc., etc., etc.) When Chef is in good space and not in the midst of dealing with issues/behaviours/ consquences, etc., it really is very pleasant being Chef's Mom.

T is for Tuesday Evening

It's another beautiful Autumn day. As soon as Chef came home from school, we went for a short walk to pick up some eggs. We chatted on the way there and back. Chef said he's going to look at hair samples through a microscope in science, and that he's very glad the school has Microsoft 2010. He likes his art teacher. We continued a previous conversation about plans for Friday; I have an afternoon and an evening performance, both out of town. Chef always comes to the place where we're performing in the evening, so we've been chatting about what might and might not work as far as transportation. If he doesn't come with me during the day, he won't be able to be there for the evening and I don't have a care provider for him who can keep him as late as needed. He doesn't want to miss anything fun that might be happening at school (Excellent!! A far far cry from just a few years back when he did anything and everything possible not to go to school!) but it looks like that's what's going to have to happen. I told him we could look at it as a volunteer event for him; if he returns to playing his pennywhistle or decides to participate in performing at some point (he says he wants to sing and has been working on a specific song), then he will earn some of the money I receive for the overall performance. "Volunteering" at performances once in awhile beforehand gives him the opportunity to see what it's like to perform in different environments and he's great with seniors and seniors love him, so Friday should be a positive life experience for him, aside from missing school. We also made our supper plans. Chef has decided that gravy is awesome, so asked about gravy and potatoes with supper. We decided he'd get the potatoes going on the stove and I'll do up homemade chicken patties with gravy and apples. Once he had the potatoes going, Chef and a young neighbourhood friend picked dandelion leaves and roots for us to freeze for using in winter (http://health.msn.com/nutrition/slideshow.aspx?cp-documentid=100256169&imageindex=13). I had to chuckle because I told Chef that it was really important to get roots but we needed lots of leaves as well. When I checked a few minutes later, the report was that they'd given up on roots because they were too difficult. "No problem," I said. "If you manage to get any roots I'll pay you for them but just focus on the leaves otherwise." A few minutes later, Chef came inside and said they had a bunch of roots ;-)

We had supper, watched a bit of a video that Chef had put in then Chef started dishes. A few minutes later, I remembered he hadn't had a rest after school so he had a rest then came down to finish dishes. He was almost finished almost an hour later, but when I checked the dishes I discovered that only two had actually been cleaned. The rest had received the ol' "wet 'n wipe" treatment. I wasn't about to have Chef continue on into the evening doing dishes (for both our sakes!) but he knows that he doesn't have free time til dishes are done so it was off for a quiet early evening in his room at 8pm. Around 8:10 I heard snoring.

Homeschool Day

This morning, Chef got up, exercised, had breakfast, washed and dressed and was ready to go in short order. We walked downtown and our first stop was watching one of the parking lots being repaved. Chef seemed very taken by it all. We talked about what steps were involved in the paving. Chef had just told me that he wondered how the new asphalt felt when one of the workers walked over with a pail and spewed water across the new surface. Chef seemed pretty impressed with the steam that rose up. We walked for awhile and chatted, took some photos, went to the bank, went to the post office to pick up some 3D glasses to watch a tv documentary Chef wanted to see about Queen Elizabeth, stopped for a tea/coffee break where Chef immediately immersed himself in reading the papers, then went over to the library. Chef researched the nutritional value and uses of dandelions, recipes, and had just started looking at WWII sites when his computer time was up. He then read for a bit before we headed back outside. We walked and took more photos and talked. Chef shared anxieties he'd been experiencing throughout the first week at school; hazing ("They talk about it every day over the intercom, so I can tell they're expecting it to happen, and I'm just a small guy so I can't protect myself if someone gets me"), crowds/noise in the hallways ("I try to walk way over to the side and try to get into a room as fast as I can"), getting lost ("I get confused and there are lots of stairs and hallways"), feeling alone and scared ("It's a really big place and I don't know what to do if I don't have an adult with me"). The school and I had been communicating through the day and Chef's resource teacher told me that Chef had also been frustrated when he couldn't independently go online in one of his classes on Thursday (being independently online is an earned privilege/responsibility in our family) and that there had been an unexpected change in EA's Thursday morning.

Chef also told me that when he goes into his room and refuses to come out, it's because he doesn't want to hurt anyone or damage anything. Wow!! Huge huge kudos went to him for his insight and self-discipline in keeping himself and his family and his environment safe all those times, and for sharing that with me!

We talked about how I had misinterpreted him being in his room as being "on strike" and trying to get "his own way" by refusing to do anything, then talked about the great self-control he's been showing and how great it was that he had communicated that to me. We also talked a bit about recognizing balance between taking time for what he needs to do for self-control and the time he needs for other things (eating, preparing for the next day, enjoying time with family and friends, hobbies, etc) and how sometimes it takes time to find that balance while still living with the natural consequences of time not waiting for what needs to be done otherwise.

Chef's support worker who usually picks him up after school now on Mondays picked him up around 1:00 and they spent the afternoon together. Chef had told me at one point that he wants to sweep the parking lot on Mondays at one of the local shops from where he's stolen. He and his support worker set that up then hung out at the library.

Chef was in great space throughout the evening. He did a couple chores (not dishes, I'm too tuckered for that today!) and completed them quickly, then watched the documentary and part of the movie (The Queen) that followed. At 9:30 he said he was too tired to stay awake anymore and went up to bed.

An all-around very nice day!

Turn-Around Day!!

Sunday, September 19, 2010

Today has been a turn-around day. I love turn-around days.

Chores were extremely dragged out (literally all afternoon puttering with dishwashing that was started yesterday and is still not complete; we truly do not have THAT many dishes!) BUT the stairs and the front entrance floor are clean and the "on strike" phase is over. Hooray!!

Chef planned and made his lunches for the week (homemade potato patties with onions,tofu,hot chillis; sliced cucumbers; rice crackers; apple), ate two snacks, and ate two meals! There were no inappropriate verbal expressions, no inappropriate physical communications, and no disrespecting of boundaries. There were a lot of "yes, Mom" responses to reminders of what was needed to be done, and there were independently-initiated, appropriate strategies used as well.

We also spent some time talking about tomorrow. Given the weekend we've had following the first week of school and the reports of Chef's choices while not being presently able to have the supports that work best for him, I believe it is in everyone's best interest that we take a one-day-at-a-time approach to Chef being at home for the time being until the school hears back from the division regarding the requested emergency funding for full support for Chef. I talked with Chef about it this evening and we've made some plans for tomorrow. (I also called his bus driver who told me that Chef had told him he only got up a couple minutes before the bus on Thursday which was why he was getting dressed on the front step when the bus arrived. I let the bus driver know that Chef has 50 minutes to get ready every morning (including last Thursday) and has the opportunity to earn extra time by using the 50 minutes appropriately. While on the phone with the driver, I informed Chef that the driver was telling me what Chef had told him. After the call, I talked with Chef again about the importance of honesty and about his goal of what type of person he wanted to be and how he wants people to think well of him. We then talked about tomorrow's plan.) He'd like to do some WWI research online, and I'll also direct him towards some food-related research along with a related activity. We'll take the camera along and do a fall nature walk. Chef also said he wants to get back into learning how to draw and paint. Very cool. I hope he isn't just saying that because he thinks I'd like to hear that - though that wouldn't be the worst thing in the world either.