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.

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.

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.

"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.

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.