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.

Lunch at Last!

June 9, 2011

Morning:

Chef took his lunch to school! And an entire lunch at that - stew, a mango, a grapefruit. He also picked up a loaf of bread and had intended to take that as well then put it down when he was reminded to take only some of the loaf and to wrap it or put it in a container.

I asked Chef why he hadn't changed his shirt yet this week. "Because I didn't have a bath last night." The schoolbus was already waiting, so I didn't continue the conversation at that point but I'll be exploring that statement with Chef tonight to find out what he meant. Maybe Chef's understanding of putting on a clean shirt after having a bath means the ONLY time you put on a clean shirt is after having a bath. Hmmm.

Partway through the morning I received a text from Chef's EA asking about Chef's glasses because Chef had told his EA that I wouldn't let him have them. I have two thoughts on this - either he's doing his usual and blaming me for his actions and/or choices OR he's confusing the conversations regarding his old glasses, which are to now stay home (though he knows his new glasses are to be at school and he's had numerous reminders to take them there).

This weekend a friend has offered to take us along for a tour of various artists' studios. As often happens regarding such events, I'm torn. As Chef's Mom, I know this would be a beneficial opportunity for him and would create some positive memories in his life. But also as Chef's Mom, it sure would be nice to have some time alone with friends and just focus on myself for a change during an event...shockingly, even with the way Chef has behaved her lately, my neighbour has offered to take Chef for the day so I could have the day to myself. The catch is, that as relaxing as that sounds, I have a sense that I'd be waiting all day for the phonecall saying Chef had run off from her place or was causing problems for her, and that I'd be dealing with his anger all the next day. On the other hand, there is never a guarantee that Chef will go along somewhere. The only thing for certain right now is that I won't be telling Chef anything until Friday evening or possibly Saturday morning because there's always a strong risk that Chef will "act out" if he knows in advance that we're going somewhere new or there's a change in his general routine. Right now, though, I'm definitely leaning towards bringing him along on the studio tour and hoping that the memories from that day will make it all worthwhile.

I've been looking for volunteers for this summer; folks who would be willing to commit to spending at least one hour a week with Chef to take him to the park or swimming, etc. I've put a request on Facebook and have sent emails to the local colleges. My hope is that having different people doing different activities with him throughout the summer would help Chef continue to grow in his social skills and accept a broader variety of people in his life, as well as provide a bit of respite time. It would definitely be of benefit to students who are studying in certain fields, and volunteer opportunities are always good for community-building. We sure haven't had much success in finding individuals to work with Chef otherwise, but I'm hoping that an hour a week will be do-able for some folks who are community-minded.

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.

Planning for the Future

My son and I have had many conversations about his goals and dreams for his future. Up til he was about 6 years old, he wanted to be a firetruck. From about 5 to 9 years of age, he wanted to be a speed bump. He explained to his mental health worker and I that being a speed bump would be great because he'd get to feel heavy tires run over him. We explored this further with him and decided to view it as sensory-based.

For many years, my son talked about being a spy. It's unclear as to whether or not he actually believed himself to be one or hoped to someday be one, but he prided himself on his ability to "watch people when they don't know I'm watching" and to "do things when people don't know I'm doing them."

About two years ago, I started initiating discussions with my son regarding his future. He very much resisted such discussions at first, but as I continued to explore and discuss his interests with him he began to hesitantly participate. (When he was younger, my son refused/argued/ tantrummed over positive comments about him and directed towards him. I continued anyway, as did his some of the folks on his support team. Today, he seems to be unable to keep himself from responding with a shy smile or goofy grin when someone says something good about him.) As the process continued, my son arrived to where he is today; coming up with ideas that interest him and figuring out how they could realistically work for his future.

Following are some of his ideas, and the challenges he is trying to figure out in order to implement the idea:

-University: too many crowds and loud noises in classrooms/dorm
-Chef: crowds/noise, often forgets to turn off stove/oven at home, hygiene
-Computer: "Mom, did you know people get paid to test out computer games?" Is great on computers at school; working towards how that might fit into his future
-Homebased Business: wants to sell items he has made, but realistically doesn't want to put time/energy into making items
-Marine: challenges with decision-making, relating to people, focus, etc.
-Performer: is connected to many folks in the arts community and talks about maybe wanting to perform someday and has had many opportunities but often doesn't want to; doesn't want to put in time/energy into preparation; and "What if I'm too tired that day?"
-Entrepeneur: would like to someday have his own restaurant or cafe but crowds/noise level/training, etc. are again all challenges in this area
-Weeder/Grass-cutter: noise if yardowner wants power-mower used instead of rotary mower; dealing with public/ communicating clearly with yardowners

The journey continues!

Present

I am pleased to say that, even through the stress of the lack of structure at the end of the school year and even through exams, my son has not chosen to relieve himself anywhere but in the washroom!! For some, I suppose that may sound crude or bizarre to report, but it is a great milestone in my son's life for which I am truly grateful!

And unless he visited some places on his adventure this morning, my son hasn't taken anything inappropriately at home or in the community (though school is a very different story, from what I understand from the resource teacher) for a number of weeks aside from a container of honey I'd left on the counter (he was very helpful in looking for it and was later very creative in his description of where he'd hidden it even though my daughter and I found it down in the storage room). Of course, I'm still very careful not to leave money around so he doesn't have to deal with the temptation of picking it up, and I still keep my bedroom door and my office door inaccessible for him, but there's still just such a different feel in our home with regards to not feeling quite as much vigilance is necessary.

He has had a couple of "meltdowns" during the past couple weeks, but I use the term loosely since the meltdowns simply (simply...ha!) involved a bit of mouthiness and being on-strike, meaning he just didn't do much else all evening other than try to start arguments, spitball his door and heating vent, and continually bang his feet on his carpet til he tired of it. Mind you, it lasted from the time he got home from school til the time he went to bed, so it was no party!! But compared to the all-out tantrums of yore over seemingly little things, this was a walk in the park. I'm so very proud of him that he went through what has historically been, and what seemed to still be, a high-anxiety time for him and that he did so without damaging anything and without running off to seek out sugar.

And (some of you who do know us might want to sit down for this one) my son is actually doing some chores and doing them without complaining! I know, some of you think the chore thing is just a teenage thing; but my son has never ever been agreeable to chores...at all....has had full-blown tantrums over them, etc..so the fact that I can now sit in the living room listening to him sing while he's doing dishes in the kitchen? Golden.
And he's come to a point where he understands that it doesn't work to not take care of his weekend responsibilities on the weekend. I'm not naive enough to think that my son is now going to always do his chores or do them without issue or take his weekend responsibilities seriously, but "a lot of the time" is definitely a nicer fit than "hardly ever and even then it's accompanied by tantrum."

My son has been reading a lot more this year. Presently, he's reading "Rabbit-Proof Fence." And when he heard a local pizza place was offering gluten-free pizza crust, his response was, "Mom, can they actually say it's gluten-free if it's in the same place as all the other crust?" He knows it's important to have protein, more vegetables than fruit, carbs, and calcium. He knows it's important to drink water throughout the day. Of course, he doesn't independently follow what he knows, but the information is in his head and at home he will make choices based on the information. He is a fantastic grocery-shopper, but that's not new ;-) And he has been independently attending a local walking club that gets together for a walk in the neighbourhood twice a week.

Clothing, hygiene (for himself and his belongings), and food continue to be the challenges he faces daily. It seems that his perfect life would involve him wearing the same outfit around the clock for days on end without washing or bathing, and eating lots of whatever he wanted but mostly at times that didn't constitute a "meal time" or having other people see him eat (he still seems to have a bit of a "I want everything to be secret" thing going to some degree). He still gets rid of clothes in a multitude of creative ways, but we seem to have had much fewer clothing restocks this year than other years. He is actually brushing his teeth much more often this year. That was a very difficult one for both of us because on days that he didn't brush, I brushed for him; it was not a party for either of us. He still doesn't seem to be able to handle much in his room. He will verbally say how he would like his room to be, but appears somewhat defeated when we talk about taking care of items. And when items are moved into his room, they do well (with daily room checks) for the first while but once they lose their novelty shinyness, they just don't seem to matter anymore.

Responsibility continues to be difficult for him but he's come along very nicely this year. He still lies, but not as much, and is sometimes quicker to the truth than he used to be. He's become more socially appropriate this year, and will often now spend time in the yard with other neighbourhood boys. And the neighbourhood boys are very ok with my son getting out his Rescue Hero action figures! Yes, he is technically too old for those now, but he didn't do a lot of playing when he was younger, and using action figures allows him to work out different scenarios and express himself in a way that would probably be very challenging for him otherwise.

He's also been doing some independent playing outside this year. That's been a difficulty for him all his life. This year, he's actually asked if he could go outside to play with his hackey-sac. It was amazing to hear him ask if he could play outside. I remember days when he couldn't handle being outside by himself, and even when he's spent some time outside on his own the past couple years it's been with hesitation and much looking at the window and coming to ask if I had called him. He's sure come a long way, baby!

My son is wonderful with his nieces, and he is wonderful with seniors. He doesn't understand the needs of babies and has often said he doesn't know what to say to them, but he loves spending time with them and makes eye contact with them, etc. And with seniors, he loves to play card games or board games, will ask if they would like some tea, etc. And when we're in a store, he'll often comment about something he thinks someone might like ("I think so-and-so would really like that scarf, Mom.")

Ok, enough blogging for tonight. We are off to volunteer at a fundraising event :-)

Great Places to Hide Stuff!

Disclaimers:
*For the purposes of this blog, "stuff" is generally defined as items not acquired by socially acceptable and/or appropriate means, OR items for which the intended use is not socially acceptable and/or appropriate (a container of mush hidden away for later spitball creation, for example)
*The following list is NOT intended to be seen by children who live with various "must stash" challenges. Actually, this list is not for children at all; it's more of a "sometimes ya just have to find ways to smile" for adults who live with and understand how it feels to find treasures in unexpected places
*This list is not exhaustive; and I have a sense it's not conclusive either

Beginner Level
-under bed/dresser/nightstand
-inside drawers
-under blankets/pillow
-behind doors/in the fold of bifold doors

Intermediate Level
-inside venting system (bedroom vents, bathroom vents)
-between baseboard and wall
-under bedroom rug when you remove the cover for the bedroom vent
-taped under the bottomside of drawers
-inside a hole created at the back of bedroom closet
-inside a hole created behind any piece of bedroom furniture
-in pockets of clothing hanging in closet
-if clothing doesn't have pockets, just tie a knot in sleeves/pantlegs
-inside mattress/quilted comforter/pillow/stuffed toys
-in light fixtures
-inside legs of keyboard stands, exercise bikes, closet organizers, etc
-behind posters/pictures on walls; make sure it's light and flat
-between books
-between the pages of books; encyclopedias are great for hiding stuff

Expert Level
-anywhere in the crotch or general genital area!

School Exams

My son has had a wonderful year; his best year yet. His only "big" anxiety blips have been around school re-entry following Christmas and Spring Break. This bliss has continued through til a couple of weeks ago when the school started helping him prepare for exams.

Last night, my son made it very clear that he wasn't going to school today for his math exam. He got rid of clothes, didn't eat his supper, and just seemed a little "lost" overall. He told me he wanted to write his math exam next year instead, then conceded to the fact of writing it on Monday if he didn't write it today. When he went to bed, he suddenly started coughing and "sneezing" then immediately called down the stairs to ask if I could give him cough syrup because he was so sick then asked if I had called his resource teacher yet to tell him my son wouldn't be there. I reminded him that teachers weren't at school at that hour but that I'd leave a message, and if his coughing continued through the night or in the morning I would give him cough syrup. He seemed quite relieved and content with that and went to bed. My son was up a few times in the night, and I was certain he would have one of his late-sleep-in mornings. I was wrong. At 8:10, he got up, went into the washroom, came out of the washroom, then flew down the stairs muttering something about having to write his exam so he could get something. He grabbed a pair of ski pants from the closet and ran out the front door in the opposite direction from the school. I was busily pulling on a sweater to hide my pyjamas as I called out to him but there was no stopping him. I came back inside, called the school, threw on some clothes, and went out looking for him.

And he did end up at the school. I got confirmation from the school at 9am that my son was there and that all is good. I'm hoping he went straight to the school instead of making pitstops at stores as he's done in the past when he's suddenly decided to be somewhere other than where he is at the time. I wonder what he's having for lunch today. And I wonder what he's wearing.

Stones

I had a phonecall from the school one day when my son was in Kindergarten. The call was to say that, while they understood that my son loved stones, he was removing too many from the playground.

There were days when my son would come home looking like the weight of the world was on him; literally. Every pocket would be filled with stones; pants pockets and jacket pockets would be drooping-full. If he had worn boots that day, they'd have stones in them. There were days when my son came shuffling home with his feet dragging the sides of his boots along the ground with the bottom of the boots facing out sideways because he'd filled the boots with stones. So we continued to work on having him wear shoes to and at school, which was no easy feat! Boots were the footwear of preference!

I gave my son a jar and told him he could fill the entire jar with stones, and he could fill the jar as often as he liked, but he could only have one jarful of stones at a time. For some reason, he followed that guideline until one day he said it was too hard to always fill up the jar with stones. The jar and the seeming need to gather stones dwindled away. At the time, I'd also started taking my son to buy special stones to collect. He was very taken with them in the store, spent much time looking at them and deciding which to choose, would hold the stone or the stone in its box all the way home; then would either leave the stone in the car or on the counter or lose it in short order and not seem at all concerned. Receiving special stones as gifts met with a similar response; seemingly quite please with receiving it, much time looking at the stone, holding it for awhile, then usually leaving it where he'd opened the gift and not seeming to be concerned with its whereabouts. (As an aside, this is still very common when my son receives gifts; Christmas, Easter, birthday, etc.) My son is now in his teens, and when we go into the bookshop where we used to buy his stones or when he sees similar stones, his usual comment is along the lines of, "I remember when I used to collect stones like that."