Food Bank Days

I've recently noticed that after our last three trips to the food bank, Chef acts up at home. This past time, Chef was very, very chatty about and very, very visually-focused on the food in the room at the food bank. He was quiet on the drive home with a friend of mine, then became very very chatty about the food bank food again once we were home and were unpacking the food, and continued to be very very chatty about it while making supper he offered to make. The high degree of chattiness was concerning since that's usually an indicator that Chef is pretty wound up inside, but all seemed fine - until Chef was reminded that he needed to wipe out the sink before washing dishes. The rest of the evening was not fun at all.

Going to the food bank seems to be an enjoyable outing for Chef when it comes to choosing food items, discovering what's in our pre-packed bag, seeing all the many many bread items and being told he can choose 3 or 4, seeing the large packages of cheese (Chef's been back on dairy now for over a year though in small amounts every day and very small amounts at a time due to digestive/"behavioural" experiences), and exploring/choosing items from the table by the door. He seems to enjoy seeing the now-familiar volunteers and definitely seems to enjoy the comments they make about him growing or how good it is that he removes sugary foods from our prepacked bag (which is interesting to watch, especially when knowing that if Chef were there on his own and no one knew him, he'd been inhaling all those sugary foods before he even left the food bank ;-) ), etc.

And while Chef isn't "bouncing off the walls" at the food bank, it's clear to those who know him well that it's almost like Christmas for him - there's a plethora of food.

There's also usually a large crowd and fluorescent lights and often a long wait in line that Chef has to deal with (standing for that length of time is difficult for Chef and that much moreso while waiting outside on winter days, other folks might accidentally nudge him or be physically closer than Chef's comfort level allows, etc). Typically what happens is that once he has a visual on food items, that becomes his focus and he'll talk about food generally from that point until we are on our way home - actually he'll quite often still continue talking all the way home and at home about the food.

Grocery shopping has always been one of Chef's favourite outings, and it's something that we've very much enjoyed together. I used to take him to a variety of different shops to buy various ethnic foods, taught him much over the years about nutritional value and how to read the labels, etc., etc. and Chef happily and peacefully drank it all in. I also worked with him for years before he stopped sneaking food off shelves and trying to eat it, and I learned fairly early on not to put grocery bags into the back seat with Chef if I wanted the items they contained to still be there when we got home.

Back to the present, my theory is that he's pretty excited and wound up inside on food bank days, and once we are home and have unpacked and eaten supper, he crashes - similar to a young child at Christmas who is overspent by the excitement of the day and the let-down when it's over.

The other piece is that, through the years, Chef has always wanted all the food immediately after grocery shopping and it generally takes a couple of days before his focus shifts away from that. Food bank days are no different.

The one difference is that Chef doesn't typically act up after grocery shopping yet it's definitely on my radar that "acting up" has happened the last three food bank days. We walk to both the grocery store and the food bank and we walk home from both. There are fluorescent lights and groups of people at both, though foodbank is much smaller and much more enclosed, and requires Chef to hold it together for quite awhile while waiting in a line.

Food bank has the added piece of mystery with a prepacked bag, which is a huge thing for Chef and he often wants to explore the contents of the bag the second it's in his hands, so that will likely add excitement and/or anxiety.

We still remain mostly gluten-free at home so Chef has the greatest dietary benefit possible but we' ve started having some regular bread on weekends when he doesn't need quite as much focus/brainpower/etc as schooldays require, and Chef usually has a bun or two from the food bank once we get home. For as long as I've known him, Chef has been a carbaholic. But when we're grocery shopping, if we pick up bread it primarily involves walking to where the bread is and picking up what we're looking for. At the food bank, there's the excitement/anxiety possibility piece with bread as well because the selection is always different, there's a jumbled myriad of various items on each shelf, and there may or may not be something Chef may have had in mind - it's not nearly as cut and dry as at the grocery store.

The bottom line is that we'll be doing some preplanning now around coping and appropriate behaviour at home for food bank days.

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.

Disrespecting the Neighbours

June 7, 2011

I missed an item on the "what is in Chef's room" list. He also had an old "valet" (for men to hang suit jackets, a little shelf for change, etc.) we'd picked up at the thrift shop quite some time ago.

I was reminded of it when our neighbour showed up at our door last night at 10pm. She held out a piece of wood that had a large metal tab on the side, and told me that had been thrown onto her deck. She said just prior to the wood landing on her deck, there had been a different sound similar to maybe a screw being thrown against wood. My mind wandered through possibilities but also realized there was a slight familiarity about this piece of wood with a large metal tab with the words, "Made in Italy" imprinted on it. Then I realized - Chef's valet. What had landed on the neighbours' deck was the top part of the valet. I went up to Chef's room and told him he needed to come downstairs. He pretended to be angry that I'd woken him and very grumpily sauntered down the stairs.

This neighbour used to provide respite/childcare for Chef when I was working. The more he was the there, the more disrespectful Chef became towards her and her children (who live with various disabilities) and the more things began to fall apart to the point where I no longer had anyone to provide care/support for Chef. To date, Chef continues to harass/disrespect this neighbour and her family at times if he believes I am not in earshot or can't see what he's doing.

To make a long story short, Chef vehemently denied that he had any knowledge of anything landing on the neighbours' deck. He feigned anger at the neighbours for lying about him and at me for believing the neighbours instead of believing him. From 10:00pm til 11:15ish, Chef swore, grumped, and showed many inappropriate responses to the situation he'd created and at the reminders to use his management tools. He did, however, take the valet over to the thrift shop drop-off area as requested. Around 11:15ish, Chef went for a run and by 11:30pm he was back in bed.

This morning, Chef slept through his alarm and through a reminder from me that it was time to get up. When I told him his bus had arrived, however, he jumped up and flew down the stairs, making faces at me and attempting to blame me for him having slept so late. I reminded him that his morning would have gone easier if he hadn't done what he'd done the night before, reminded him that his lunch was on the kitchen counter, and reminded him that he would need to get dressed at school rather than outside (which is what he has often done if he waits til the bus arrives before getting ready to leave). Chef grabbed his clothes and ran out the door wearing the old jean shorts he's recently been wearing as pyjamas.

Restitution: Chef will be paying his allowance to the neighbour for the inconvenience/disrespect/risk of property damage from last night, and will be sweeping her deck and steps for the next week to practice being a good neighbour and good community member.