Chef continues to adapt to our new home since moving last year. He's always seemed most at home out in nature, especially around water, and that hasn't changed. When we go down to the lake, he excitedly runs along the shoreline, watches/feeds the seagulls, collects stones and shells and excitedly brings them to show me. He's always pointing out his discoveries - holes in the ground, a bed of shells, frogs, fish skeletons.

One of the biggest challenges continues to be Chef's lying. It's often used in what seems to be his attempt at expediting conversation, but there are times when dishonesty is still being used for other reasons. Most recently, he's been spending a lot of time at a neighbour's home saying that she needs him to help her with a lot of indoor housework as well as walking her dog and helping her take in her groceries. I've commended him for being so honourable and applauded his plan to save his "extra" money for his university application fee. (I've raised Chef with the mindset of the importance of community-building as well as being mindful of living each day mindfully and meaningfully. A meaningful day includes aspects such as community, personal growth, friendship, etc.)

Within a couple of weeks, however, Chef began spending his days in our kitchen playing on his phone (which he does all day/evening long, easily 12 hours a day unless he's out of the house or unless someone is visiting, and often does late into the night as well - yes, I've talked with him about balance, etc., he thinks I'm just being "mom") so he could watch out the kitchen window to see when this neighbour was home and as soon as he'd see her car he'd run out the door saying he had to get over there right away to help her with chores. It got to a point where all he was doing at home during the day was sleeping, eating, and watching for the neighbour. He'd greatly regressed in hygiene (back to wearing clothing the next day that he'd worn to bed the night before, reminders/refusals regarding bathing and brushing teeth, wearing clothes for days on end), was occasionally doing a chore at home but never doing a complete job (his jobs at home are to do the floors and washroom and bathroom once a week, plus clean up after himself) and stopped cleaning up after himself almost completely. When I've talked with him about it, he'd say he's tired when he comes home from helping the neighbour plus there he gets paid for what he does. Any further attempts at discussion fell on deaf ears.

One day while this was happening, Chef left the water running in the washroom just before running out the door to the neighbour's house. He's left water running frequently and has visual reminders in the washroom as well so I debated but knew it would help him remember better if I asked him to come home to turn it off and then thought this would be a good time to ask the neighbour if she could initiate a chat with Chef about streamlining Chef's help to specific days so he wasn't always watching for her out the window. When I walked over, Chef happily agreed to go home and turn off the water, and I chatted with the neighbour. I think we were both surprised. She shared with me that she has only asked Chef to vacuum once or twice for her and any help from him otherwise has been to walk her dog and occasionally help her bring in groceries, and once or twice he tried to help her with her computer. Otherwise, she said, "He's nice company for me but he mostly just sits at the table drinking coffee and playing on his phone."

Something new that Chef has started doing recently has been to offer to make supper for both of us then goes to the kitchen, makes something, then sits down in the living room with a bowl of something for himself, stating he'd changed his mind about making supper for us. This has happened five times in the past two weeks. And when Chef offers to make supper, he becomes sullen if I "turn down his offer" regardless of how I word it.

Chef is occasionally going out on his own now! This took a lot a LOT of work but he now independently goes to the store, the coffee shop, or just for a walk on his own. I started working with him on this by giving him a twoonie and suggesting that he treat himself to some coffee at a place we occasionally visit downtown. He initially refused, so my next step was to give him the twoonie, suggest he treat himself and I'd meet him there in 15 minutes. That worked. We did that a few times and I followed up with then lengthening the meeting-up time. Then one day I said, "Why don't you just go on your own today and see how that goes? You know some of the folks there and there's wifi there and you've spent some time on your own and that's gone well." So, Chef now goes for coffee on his own (and pays for his own) every once in awhile. And while he still doesn't initiate conversation with anyone, others who are now familiar with him will chat with him if they see him.

I continue to gently encourage Chef to explore ways of getting to know/spending time with people his age but that was completely rejected by him where we used to live, and now that we're living in a "new" place in a smaller town, he's even less inclined. Thankfully, he is still willing to come along to various music sessions and other community events.

We continue to work towards Chef's independence. Because there haven't been incidents of stealing or eloping for quite some time, I'm personally comfortable in that area with the idea of him being home on his own. The problem, however, is safety. There are still concerns with occasional problems in the area of cooking safety and awareness, and there are still many times when it's clear that Chef's brain doesn't always give him the messages he needs to keep himself safe or to make good choices
when something unfamiliar happens. My two biggest concerns as his primary support person and as his mom is physical safety (whether it be accidentally burning something in the kitchen or what he'd do if he accidentally cut himself, etc) as well as how he'd handle something unusual (such as a stranger at the door asking to come inside, a toilet overflowing, etc). Those are the types of situations I'm hoping to focus on with him over the next few months (though now that's been interrupted the last few weeks with his "hang out at the neighbour's so I can play on my phone all day" plan). Presently, we've implemented a plan where he's on his own in the house for one to two hours at a time right now and I'm within a 20 minutes drive, usually much less.

There are other areas of concern around learning to be mindful of consideration at home, the ongoing large quantity sugar/carb ingestion (which is worse, actually, when other areas are also more concerning), and the ongoing "I'm 18, I can do what I want" mindset around things like wearing scented deodorant that triggers physical issues for me, wearing clothes for days on end, spending money on an online game when he says he doesn't have money for groceries, etc., as well as the ongoing concern over Chef's sullenness when I try to talk with him about anything of concern.

One other challenge that has resurfaced lately is around times when I've made a commitment to do something and have to be somewhere at a certain time. Chef and I have numerous discussions around those commitments and talk about what each of us will do and explore options, etc. Both times last week that I has such commitments, Chef had stated he wanted to come along (one was a bank appointment and Chef wanted to come along to do errands for himself, another was a show he wanted to come along to attend even though there were other options for him) but when the time came to do so, he'd decided to have a long nap just beforehand and refused to get up/get ready/etc. and both times I was late for my commitments.

Another ongoing challenge is in trying to support Chef in making appointments, making phonecalls he needs to make, accessing information he's capable of accessing, etc. Yes, I could do all those for him but he is capable of making phonecalls and capable of looking up information online - it just takes a very very long time and many many prompts for him to remember/be agreeable to do so.

Otherwise, Chef is doing very well. I often have folks tell me things along the lines of, "He's such a sweet guy, I can't believe there's anything wrong with him" or "He's so mature for his age" or "He's such a good kid, he could easily be living on his own by now." While I clearly see that they don't understand things like appropriate language (there ISN'T anything WRONG with him, his brain just functions/thinks DIFFERENTLY than the brains many folks have) or the obvious lack of friends his own age or executive functioning challenges, etc., I'm so thankful that folks are seeing so much good in him. Chef generally presents well in public, especially if he has his phone with him, and is very capable in many areas. I'm especially proud/thrilled to be able to say that on "good" days, he's a good son (asks if I'd like tea/coffee if he boils the kettle, shares information he thinks might interest me, helps carry things from outside, never plays loud music, invites me to go for walks with him, has a fantastic laugh, often prepares food when we have company, etc., and my friends enjoy having him around).

He continues to having ongoing exposure to a large arts/music community of folks and I'm hoping that serves him well in life with regards to all the gentle people he meets along the way.

A Tag and a Snow Fort

Chef has often explained to me that his "brain just doesn't think of stuff." It hasn't been long since Chef finally started accessing a list of other things to do during his downtime besides sleeping, but even that hasn't been happening for very long, nor is it consistent. His list isn't long yet, mostly because he seems unable to think of activities to add to the list but also because when we discuss list options, it takes much prompting before he'll actually write something down.

One of the things that Chef tends to do in the evenings is to sit in the living room wrapped with his blanket and play with the tag on his blanket. Usually I prompt him within a couple of minutes to shift to another activity. Tonight I decided to glance at the clock and not offer any prompts at all, just to see how long Chef would continue to sit and do nothing other than play with the tag. I was curious whether he would tire of it and would move on to another activity on his own. Twenty two minutes later, I couldn't keep quiet anymore and asked Chef if there was anything else he could think of to do other than playing with the tag on his blanket. Twenty two minutes. 22 - and who knows how long it would have continued had I not said anything. These are the types of things that many people don't seem to understand about Chef because they see him in different environments where the flow of his day is led by school schedules, what other people are doing, etc. Left to his own, however, it's a very different world.

The bulk of Chef's unprompted activities now involve napping, relaxing in the tub, and reading in the living room. It's a far cry from the not-very-long-ago days when Chef's downtime goal was to sleep away as much time as possible. I'm happy to report that this winter Chef did something remarkable - he built a snow fort!  On his own!  One day while waiting for the school bus, he just started building a fort all on his own. He worked on it almost every morning for 20-30 minutes! Every day when he came home from school at noon, he'd give his snow fort update and would frequently look out the window throughout the afternoon and evening to check his fort. One evening he even went out on his own to work on the fort! I realize this may not sound like much to some folks - but for Chef to be doing something like that on a regular basis, and something that was of his own initiative, is truly heartwarming and nothing short of remarkable.

Chef has done amazingly well recently. He's been kind and helpful and has used appropriate language and worked on communication skills. He's been reading voraciously, engaging in conversation when we watch documentaries or TEDTalks in the evening, AND he has washed his bedding recently!!

Today, however, is day three of Chef being "off" and he's now left for school without eating and without anything for a mid-morning snack.

Sunday was full of many more reminders than are usually needed, particularly for a relaxing Sunday. He seemed to be on the verge of whining most of the day (but didn't go there:-) ), seemed to have trouble focussing on what he was doing/how to do it every single time he'd go into the kitchen to get himself a snack/tea, and otherwise spent the bulk of his day sleeping. I considered waking him at one point, but was my brain was glad for the break and I'd hoped the sleeping would reboot his system from whatever was going on. At one point the kitchen timer went off and he came to the living room and asked if he could turn off the timer. I asked him why he was asking permission for something like that. He said he knew he shouldn't turn off a timer that someone else had set unless he knew they'd heard it. That's great! I was pleased that he knew that. The concerning part was that I hadn't set the timer. Chef appeared confused and angry when I pointed that out (facial expression! and no meltdown!). At that point, I started trying to figure out what on earth had happened to cause all of this. Change in season? That's definitely had an effect over the years. Having a glass of soda pop a couple nights prior? Chef's behaviours have often been linked to what he's ingested, though once in awhile I figure "maybe it's ok by now" and offer something bizarrely different for him, though I did so in the evening with the idea that he'd sleep it off - it seems odd that it wouldn't effect him til a couple days later though.

I'd initially dismissed anything from Saturday since we'd spent the day at a CPR recertification class and Chef had spent the day in the back of the room reading and playing a computer game - though I did remember thinking it was odd that he said he couldn't wait to go home and nap because he was so tired out from the day. And then I realized it! The few times I turned to look behind me to check in with Chef, he was on the laptop. And when we broke for lunch, he proudly showed me how many buildings he'd created in his game. And when we'd finished our lunch, he went back to the laptop. Aha!! I'm guessing he played that computer game for around 4 hours!!

When Chef is left to just his own ideas on how to fill his time without any suggestion/guidance, eating and sleeping are his default with the recent addition of reading. If he runs out of books that are in his immediate area of interest, he will typically again default back to wanting to nap or eat rather than exploring other books or coming up with other activities. He is pretty easygoing now about activities that are suggested to him (as opposed to when he was younger and didn't want to leave his room/our house), but he still struggles to independently think of things to do. We've tried creating lists for him, and I had pictures for him when he was younger, but as many of you know, Chef is not fond (uncomfortable at some level) of accessing visual helps/prompts/information.

Yesterday was better than Sunday, and this morning I couldn't tell if there was still residual stuff going on or whether it was just his average, typical morning struggles. I'm hoping that by the time Chef comes home from school today things will have levelled out for him.

There is a lot of repetition in our house. As another mom worded it, my son and I need to frequently figure out what he was thinking/not thinking, find a solution, and work on the action plan. Repeatedly.  Each task he does throughout the day has had to be broken down and addressed. Repeatedly. Chef is a brilliant young man in many areas - he also struggles with not understanding and/or accurately perceiving some things in this world, has difficulties with remembering what he needs to do, has difficulties with organization, and has difficulty "thinking on his feet" when something unexpected happens. Chef continues to not want to have any disabilities but there are occasional days when he seems relieved to be reminded that something he's struggling with is typical of someone living with autism, for example, and that he's not the only one.

I am happy to report that, with much repetition and consistency over the years, Chef isn't requiring quite as much repetition as previously needed when it comes to some of the day-to-day routine. He is now capable of following (though it still doesn't necessarily happen on a regular basis!) the steps to brush his teeth, have a bath, use a toilet, wash his hands, get dressed, put on outerwear, and make his bed without any how-to reminders. He is consistently able to successfully make a pot or cup of tea. He sometimes forgets to turn off the stove/oven, and if he hasn't made something in awhile (such as rice) he'll sometimes forget how to make it and instead of looking at instructions will just guess, but Chef is otherwise capable of preparing a meal. He still has difficulty with independently gauging amounts and will still eat huge amounts of food at times (a large yogurt container full of lentils for a snack) when not reminded otherwise of appropriate amounts. Shovelling snow no longer needs how-to reminders, nor does putting out seed for our neighbourhood birds.

There are still many winter mornings when Chef walks out the door with only one eye clearly visible and his other eye partially hidden by his balaclava before being reminded that it needs straightening. This morning at -42 (with windchill), he still needed a reminder to wear his hat and scarf to the bus even though he'd just been reminded a few minutes ago when he'd been out for a couple of minutes just prior in order to keep his routine before I called him back to wait inside til the bus arrived (Chef's goal time to be outside in the mornings is a few minutes BEFORE his bus arrives, otherwise the bus will be sitting/waiting while Chef runs around inside the house quickly getting ready instead of getting ready beforehand). He almost always puts on his jacket now AND zips it up! (***Remember when Chef wouldn't even put/keep on clothing at all?? Hooray for wearing clothes now!!)

Visual and verbal how-to reminders are still required for chores. I'm happy to report that Chef is starting to do these more regularly and is starting to initiate them on his own! Chef's internal sense of what needs to be done to have a healthy space for himself is evidently lacking at this point, but he IS presently on-board with doing half an hour of weekly chores and with cleaning up the kitchen on a daily basis with visual and verbal how-to reminders (and without the meltdowns he used to have over this!) Chef still requires visual reminders as to how to do a chore and verbal reminders along the way, but his willingness to start a chore and accept guidance regarding a chore has definitely come a long way.

We continue to work on "up in the morning and ready for the day" - it's slowly coming along. One of the things that I believe has helped tremendously lately has been to limit the time that Chef now has available to him to get ready in the mornings in order to narrow his focus to what needs to be done to have a successful morning. If Chef consistently uses his time appropriately (focusing on what steps are required in order to get ready without meltdown/backlash at mom), more time is added so Chef can enjoy a slower pace and/or a relaxing addition (reading, extra coffee, etc.) to his morning after getting ready. This has been much more successful time-wise as well as growth-wise compared to mornings where Chef has had over an hour to get ready. This also gives Chef all morning to relax in his room from the time he wakes up (which can be anywhere from 5am-7:30am, with Chef going back to sleep most mornings) til he needs to start getting ready.

Chef now almost always remembers to say, "Hi Mom. How was your morning?" when he comes in from school. We've recently added, "What did you do this morning?" and he's started occasionally saying, "Oh, that's good" after hearing my response. Sometimes he'll even ask a further question - this is brand new and wonderful.

Anger. Again.

Today Chef attempted to make black bean brownies. He's frequently talked about this since I initially showed him a recipe and suggested he talk with a friend of mine about details because the recipe I'd come across didn't explain whether or not to drain the can of black beans required.

Chef did eventually ask my friend when reminded, and I don't recall whether it was my friend or Chef who'd written down the specifics of the recipe, but Chef happily came home with the detailed recipe in hand.

Chef's attempt at black bean brownies didn't work out today - at all. After  close to an hour, the contents of the pan were still extremely soupy. When looking at the pan, I asked Chef if he'd followed my friend's instructions about draining the beans. Chef already had that dark, angry look about him when he growled a "no" in response. I thought about how to handle the situation - the "soup" could be put into a container and used in smoothies I supposed, but I knew very well that Chef wouldn't  relax until he'd inhaled the chocolatey mixture and the last thing he needed would be to have all those ingredients marching through his system in one fell swoop. I told him we'd have to dispose of the brownie soup, explained the reason, and said he could try again  another time using the full recipe. Chef kept saying he could just cook it longer. I shook my head and  started to say that we all have times when we're trying something new and it doesn't work out, but Chef stormed off in a huff.

Since that moment, Chef has responded with that same dark, angry cloud to almost every interaction this afternoon and evening. Right now, he's outside snarling after I told him it wasn't acceptable to leave feces in the toilet bowl - his initial response was that it wasn't his fault because he thought he'd flushed. I said I understood that but that it was still his job to make sure the bowl is empty, especially when there's a sick person in the house. Chef started yelling and spitting words and continued verbally escalating as I walked away. I know Chef well enough to know this was a sign that he wasn't going to calm on his own. I turned and put my finger to my lips with a quiet "shhh, calm" but to no avail. I put my finger and thumb on his top and bottom lip, accompanied with "shhh, calm" and he immediately pursed his lips together and he immediately became quiet but started bobbing his head up and down and sideways. I stepped away into the next  room and reminded Chef that he needed to clear the toilet and deal with his anger immediately and if he couldn't do it inside, he'd need to take it outside - he flushed, stormed down the hall, put on his outerwear (something he wouldn't have bothered doing in past years!), screamed at me, and slammed out the door.

***********
Chef went for a short distance at a half-jog sort of pace, came inside and was still not calm enough to be inside so went for a run then came in and actually apologized and was able to have a reasonable discussion over what had happened. He's now calmly folding paper cranes. This is a very, very quick turn-around for Chef, who has often held onto his frustrations for hours/days - I'm hesitantly hopeful this is a sign of growth and positive things to come regarding managing frustration/disappointment/anger.
 

Many of us have explored various sensory enhancements with our children. Chef has had a myriad of items over the years and, though none of them have survived to date, Chef has certainly shown appreciation of their presence.

For parents who might be new to the idea of using sensory enhancements, here's a great link:

http://www.sensory-processing-disorder.com/sensory-room.html

It's been a challenging holiday season. Urinating in the bedroom (which hasn't otherwise taken place for months) started again a few weeks ago, evidenced by the large, urine-filled vinegar bottle discovered in Chef's room - I'm glad a container was being used.

 On the morning of Dec. 20th, there was an all-too-familiar-and-really-bad odour coming from Chef's room. Nothing was visible, which made my heart sink with the thought of having to check the carpet and vent, but as I followed my nose I found the source - four incontinency briefs stuffed in the 3-inch space under Chef's desk. I called the school to let them know Chef was accessing someone's briefs. When Chef arrived home he made it clear that he was furious with me for contacting the school. I reminded him that it isn't cool to take someone's briefs and even less cool to use them to hide urine in his room, and that he needed to take the briefs out to the garbage immediately. Chef stormed up to his room, came down a few minutes later with a bag of garbage, and stormed out the door. When he came back, he sullenly had a bite to eat then stormed back up to his room. Hours later, Chef had made four trips to the washroom but didn't answer when I called from the bottom of the stairs so I went upstairs and reminded him through his door that his respite family would be picking him up shortly and he still had things to do to get ready for Christmas. I heard what sounded like a book dropping on the floor - I asked Chef if he'd heard me and heard a low 'yes' through the door. An hour later Chef still hadn't come down so I called him from the stairs. "I know!" was the response from his room. Chef still didn't come downstairs and didn't come down when called for supper. At 6:30pm, Chef slowly came down with a very grumpy look on his face. He slowly started getting a rag and cleaners out then asked if he could have supper. I reminded him that he was supposed to have supper but had chosen not to come when it was ready, then asked Chef if he was going to get himself a quick snack before getting his chores done. Chef growled and humphed then started slamming around in the kitchen. I reminded him that he could be appropriate or take it outside til he was ready to be appropriate inside. Another growl but no more slamming, then Chef moved on to whining about not being able to find anything for a snack. A few minutes later, Chef's respite family pulled in and suddenly Chef was racing around putting food into containers. "Am I staying til Monday?" he asked. "No, we talked about this. You'll be coming back Saturday night because you need Sunday to get yourself ready for Christmas. There's no more urine in your room? You took those out to the garbage?" "Ya, you even SAW me!!" And with that, Chef was away for the next few days.

On Saturday, I noticed a terrible smell coming from Chef's room - similar to the Thursday before, but stronger. When I opened the door, I immediately saw clothes and bedding rolled/bundled all together on Chef's bed. I started unbundling, gagged, rebundled, and looked at the time. The briefs were still there in the room. This time he'd bundled them inside clothing and bedding. Chef would soon be home and the bundle would wait til then.

As soon as Chef got home, he was ordered to remove the entire bundle from the house. There was much stomping and grumping but he took everything out to the garbage and disinfected his mattress. The next day was filled with hours of Chef grumping about having to empty out and clean his room - it took hours. By suppertime he just needed to finish disinfecting the walls, bedframe, etc. That was a week ago. The past week, Chef has been mostly polite and pleasant at other people's homes but the same certainly cannot be said for his time at home. In addition, I've been down the last few days with  terrible cold symptoms along with bacterial conjunctivitis. I guess I could look at it as things being worse because of it, but I figure if things are going to be rough through the holidays, being sick may as well happen then.

Today is December 30th. Today is the first day Chef has been pleasant at home since the 20th. He got up, exercised, bathed, combed his hair (!!!), etc., made lunch, did dishes, asked if I wanted anything, and is now resting in his room. I sure appreciate turn-around days.

A solid list of ideas for helping your child (and yourself!) through the holidays:

http://fasdthinktank.blogspot.ca/2012/12/holiday-strategies-for-fetal-alcohol.html

All the very best to you and yours,
Christine

Folk Fest

Chef and I were privileged to receive bursaries for our local Folk Fest Retreat this year. Chef received workshop instruction from Abigail Washburn (who did a terrific confidence exercise for Chef during her workshop; thanks Abigail!), Kai Welch, Martyn Joseph, and Willy Porter.

Chef also had two bouts of one-on-one time with Martyn Joseph.  Chef had never touched a tenor guitar before that, and has only spent about an hour on his 6-string in the past year, but with Martyn he learned a song on the tenor guitar. I'll see if I can get the recordings set up here at some point.

Abigail told me Chef had no trouble picking up the banjo exercises she taught in her other workshop Chef attended. Chef hadn't touched a banjo before the retreat.

When we arrived back home, Chef and I decided to pick up a ukelele for him to start on before investing in something pricier. Yesterday he carried the uke and good ol' Mel Bay's ukelele book downtown and hung out on a nearby bench while a friend and I sat outside of a local coffee shop.

An hour later, Chef came over and played a two-chord song for us. He played at a good tempo, and without mistakes.

 Prior to sitting on that bench, he'd never picked up a ukelele.

It's always exciting to see Chef pick up a new instrument. He's had the same experience in easily picking up tunes/songs on keyboard, penny whistle, and guitar - but thus far, he's always chosen to not continue because "it's too much work."  It would be great to see that way of thinking change someday. In the meantime, it's a real pleasure to see what he's capable of doing when introduced to a new instruments.

There's often a fine balance between responding and hoping for a moment of connection and learning, and not responding. Sometimes we as humans mess up that balance and other times everything just lines up beautifully and the sun shines and the birds sing and the flowers bloom and...well, sometimes we stumble into those moments and hope that the seeming lack of negativity from the other person can be accurately translated as a moment of connection or some degree of understanding.

The past two mornings, Chef has slowly come downstairs 20 minutes later than he's needed to in order to have a successful morning.

When reminded that he was running late and needed to quickly get his list (with his morning routine on it because he has difficulties with organizing/remembering and doesn't want me reminding him of anything), Chef's response both mornings has been to tell me that he's late because I took his clock.

Chef continues to be guided towards responsibility. Sometimes a topic requires a lot of reviewing for the responsibility piece to start to settle in Chef's mind. The past two mornings, the clock has been one such topic.

Part A: Chef's been given a few clocks over the years, including two Thomas the Train alarm clocks, a travel alarm clock, a clock to wind, etc. Each clock has met its demise with the exception of one clock Chef received from my grandmother. In addition to the sentimental attachment, this particular clock also sings out various bird calls on the hour. To make a long story short, Chef seemed to find the bird calls to be very, very enjoyable regardless of the time of day or night - and for now, the clock resides in Chef's room without its batteries.

For years, Chef has been getting up in the mornings without the use of a clock. On some mornings when he's gotten up later, he's angrily told me he'd slept in because he doesn't have a clock and was reminded that he could gladly replace the many alarm clocks he's been given by earning money and buying one for himself. Finally the day arrived when Chef had money (gift money) to buy an alarm clock at the thrift shop. I'd suggested he choose one that uses batteries or could be wound, with the added bit that I'd had a few late mornings over the years from "plug-in" alarm clocks not going off because the power had gone off during the night, and that I only use a battery-powered alarm clock now. Chef chose an electric clock.

Part B: Chef has needed frequent reminders over the years to close doors - front door, back door, refrigerator door, freezer door, cupboard doors. Last winter he left outside doors open so often that I warned him that he would soon need to start paying for the heat he wastes. Being an environmentally-aware family, I've also often talked with him about the importance of appreciating resources and not wasting what we have. Chef was warned this past January that I would start keeping track of his financial responsibilities for wasted resources in February. I knew, however, that his would mean little if anything to a young man who doesn't really have a grasp of what value means so the first time I pointed to the door he'd left open and announced that would cost him 50 cents and would cost him more if he didn't close it immediately, I also attached a "real value for Chef" idea to the amount. "This is costing you 50 cents or half a bag of potato chips or the price of a book from the thrift shop." Chef slowly came over and closed the door with the response, "Some books are only 25 cents there."

Fast forward to the recent morning when we'd had to air out the house because of body odour. After all was said and done, I eventually let Chef know that he'd have no extra electricity in his room for awhile because of all the heat that had been wasted through the open windows. The only electrical item in Chef's room (other than his ceiling light) was the clock.

Part A and Part B Together = This Morning:
"You took my clock, that's why I'm late."
"Responsible communicating, please. What word should your sentence start with?"
"I? Um, I'm late because you took my clock."
"That doesn't work."
"(sigh - but no growling/yelling/swearing/tantrumming!) I don't have my clock, that's why I'm late."
"Here are some things you need to think about - you've gotten up plenty of mornings in your life without a clock, you've gotten up every morning the last few days without a clock until yesterday morning, and you've also gotten up around your usual time to use the washroom the past two mornings..."
"Yes, but.."
"...in addition, you need to think about WHY your clock is no longer in your room..."
"Well, that's..."
"...and also think about how many days you could have earned money to buy a different clock and haven't done so. Now, no one asked why you're late and that's not up for discussion. Bottom line - you have things you need to do quickly because you're late."

And with that, Chef slowly moved into his morning routine - which again included 20 minutes of jumping jacks even though we'd discussed that again yesterday. When he came in from exercising this morning, I said that I'd noticed he was still doing jumping jacks. "That's the one exercise I can do really fast," was the response.

When the school bus arrived, Chef was in the bathtub.
"Your bus is here. (Pause) Did you hear? Your bus is here."
"I heard!"
Chef slowly and grumpily came down the stairs trying to get his shirt on over his wet shoulders.
"You need to be moving quickly. Your bus shouldn't have to wait for you."
"Well, you made me take a bath." (The last two nights we've again been discussing hygiene and how sleeping in a bedroom that doesn't smell very good then putting on the same outfit as days before makes for a very unpleasant smell for others plus germs on Chef's body - quick morning baths would be good until Chef has clean clothes. Yesterday Chef opted out but exercised and bathed on his own this morning!)
I opened the front door, then asked Chef if he was going out to the bus or if I should wave to the driver to continue on without him.
"I'm going! I'm going! I just need to get dressed and get my lunch and shoes!"
Chef did up his pants by the front door and, with his shirt hanging around his neck, he tried to wriggle his feet into his shoes without opening them then huffed and bent down to put on his shoes then started down the hallway away from the front door, half-dressed and wearing one shoe.
"What are you doing?"
"I HAVE TO GET MY LUNCH!!"
Chef stopped and adjusted his shoe with the all-too-common appearance of lack of awareness of time or sense of urgency
"The bus shouldn't have to wait for you."
Chef huffed then started walking slowly down the hall towards the kitchen.
"Moving quickly! Bus is waiting!"
And with that, Chef turned around grumpily and jogged to the door, slid his foot into his other shoe and went out to the bus, putting on his shirt on the way.

Chores! Chef did chores!

And not just his one daily chore (presently dishes/cleaning up the kitchen), but last week's weekly chores (bathrooms/hallways) were also started and completed this evening. In addition, the total chore time was less than an hour AND Chef moved his lunch from the freezer to the refrigerator and made sure it was ready for tomorrow morning. He also boiled an egg for himself for breakfast. I asked Chef how he felt about having taken care of all of that tonight - "Good. And I know I'll have more time in the morning now." Excellent!

One of Chef's support team was working with Chef today on the 5-Point Scale (http://www.5pointscale.com/books_links.htm). Following are my recollection (obviously not verbatim) of some of our general conversation bits from this evening:

"Hey, how did your scale go today?"
"Good. I had a lot more 1's and 2's than last time."
"Excellent. So what sorts of things are 1's and 2's now?"
"Brushing my teeth, because it doesn't bother me as much anymore."
"Oh that's interesting. What do you think made a difference?"
"I don't know. I guess I just kept doing it lots of times and now it doesn't bother me."

******************************************
"So what were some of the things that were 5's?"
"People talking to me."
"Always?"
"No, but I don't like people telling me what to do."
"Which people?"
"Anyone. I don't like anyone telling me what to do."
"Who are the people that are telling you what to do though?"
"Kids at school."
"Older kids? Sometimes that happens at schools."
"Sometimes younger kids too."
"You have quite a few kids at school telling you what to do?"
"Well not lots but just random kids. Some are older, some are younger."
"Ah. Anyone other than kids at school?"
"M (our neighbour's daughter)"
"She tells you what to do?"
"Yeah. The other day she told me to wash my hands again when I had just washed them. And she tells me other stuff I'm supposed to do."
"That's interesting. You've never told me about that before. Who else tells you what to do?"
"Teachers and EA's"
"You have a bunch of teachers and EA's telling you what to do?"
"Yeah."
"Do you mean when they're teaching you or trying to help you with something?"
"Well I don't like when they tell me the same thing 50 times."
"Oh. Why are they telling you the same thing 50 times?"
"I don't know."
"Are there times when they might be getting the message that they need to say the same thing 50 times?"
"Well I didn't mean 50 times. I was exaggerating. I just don't want them to talk so much."
"Even if they're talking because they're teaching and guiding you?"
"I don't know."

*************************************
"So what else was on your 5's list?"
"I don't know. I didn't have very many there. Boredom I think was a 5."
"When do you feel boredom?"
"When I'm sent to my room or have to stay in there or when I do a video game too long or do anything for too long."
"Oh. So when do you get sent to your room?"
"When I break rules."
"Hmm, and what would work better so you wouldn't have to be bored in your room?"
"Follow rules?"
"Yeah, that would be a good choice. When are other times that you're in your room and bored?"
"When I don't have clothes to wear or I'm not doing chores."
"Ohh, so what would work better then instead of being bored in your room?"
"Do my chores."
"Another good choice. So it sounds like a lot of the boredom in your room would be different if you'd make good choices."
"Oh."
"Y'know, a lot of times it feels to me as though you try to get sent to your room so you can just sleep."
"That's cuz I'm tired lots."

**********************************
"I think I put exercise as a 5 too."
"Oh, why is that?"
"Because it hurts my muscles."
"Your doctor and I have talked to you about how it's not good to do so many jumping jacks but you keep doing them. And when I remind you how to do them with less stress on your muscles, the message I get from you is that you're angry with me for reminding you."
"I can't do any other exercises. I can go longer on jumping jacks without my muscles hurting."
"So they don't hurt when you do jumping jacks but they hurt when you do other exercises?"
"Well they hurt but it takes longer before they hurt."
"Ok. Why do you not want to be reminded of how to do them with less stress on your muscles?"
"I don't know. I don't want you telling me."
"Is it more that you don't want to do them, or you just don't like being reminded? When you were younger you didn't want to exercise or get dressed or wash, etc., and we kept working on all those things and we both eventually noticed a difference for you when you exercised."
"I can't exercise. It's too hard for me."
"Do you remember our conversations about what's good for the body? And that your body needs some training so it will work better for you? And how going overboard with jumping jacks is not a good idea?"
"Yeah, but I can't exercise. It's too hard."
"I'm thinking it would be good to go back to the idea of doing different exercises like some jumping, some balancing, some running, and other stuff in smaller bits instead of one big chunk of jumping jacks."
"I don't know. Exercise is too hard."
*************************************

So tonight Chef did chores. No whining, no arguing, no tantrum, no grumping, no huffing, no delaying responsibilities. In addition, he also had a very full conversation about things he typically wouldn't want to discuss. What a wonderful evening!

We seem to be coming to the end of a nearly three-week spiral. We haven't had a long haul like this one for awhile - I don't recall the last one that's been to this extent where Chef does little more than sleep/rest during evenings and weekends (and attempt to argue/tantrum at any suggestion to do otherwise) for such a long period of time, regardless of whether the activity possibilities included chores/responsibilities, videos, playing with his nieces, or outings, etc. Today will be Chef's second day home from school this week, aside from the day off all students had on Monday. Yesterday evening was the first sign that Chef was ready to get back on board with participating in day-to-day living without attempting to struggle with me about it, though he seemed to continue to have difficulty focussing, and his energy level continued to appear low and he tried a couple of times to come up with reasons to go back to his room.

On Monday, Chef's poor hygiene had caught up with him to the point that my daughter and I woke up to realize the upper level of our house smelled horribly like body odour and a hint of it was starting to hang in the air on the main level. Chef was asked to open his window, but after receiving no response to that nor to my knocking I covered my mouth and nose and opened his bedroom door. Chef was in bed and rose up on one arm with a very grumpy look on his face. I opened his window, told Chef the house smelled from his body odour and he needed to take a bath immediately, and walked quickly towards the door. Chef yelled that he didn't smell bad and got up and closed the window. I went over and walked Chef to the other side of the room and told him "the whole freaking house smells, son, and you need to stay away from the window and you need to take a bath immediately." I re-opened the window and left the room gagging. Chef escalated. I opened windows upstairs and downstairs while Chef's yelling and whining grew louder. After 20 minutes, I told him he'd used lots of time for that already and it was time for him to move on with his day or take the noise outside. He took it outside and repeatedly yelled, "I don't stink, fuckface!" Fast-forwarding to just over an hour later, Chef and I debriefed. We retraced choices that had lead up to the smell of the morning, and Chef agreed (again) that it would have been easier to wash everday and wear clean clothes.

About three weeks ago, before Chef had run out of clean clothes, he'd worn the same outfit for 10 days in a row. He's now run out of clean clothes days ago and states he doesn't know where the rest of his clothes are. He was reminded that he's often left clothing on hallway floors, outside, etc., and those are donated to the thrift shop. He didn't argue that, but said he thought he had others but he doesn't remember where they are. We discussed again the importance of clean clothes being in the closet and dirty clothes in the hamper - that makes life simpler when it comes to keeping track of clothes and having clothing easily accessible. Last night he said he plans on doing his laundry today. He'd also said he was going to do it last Thursday, Friday, Monday, and yesterday, so hopefully today's the day.

THE DAY OF THE PLAY

Monday was a holiday here. Tuesday was a snow day. Friday (today) there is no school.

On Wednesday, Chef's school had planned an outing to go see a play at a local college. Chef often talked about how he'd hardly had any field trips in high school and now would finally have one, and often reviewed field trips of days gone by. He gave me a permission slip to sign late last week but put it up on the top of the fridge and left it there once it was ready to go back to school. He was reminded on Monday night that he had to return it to school, but Tuesday was filled with snow rather than school so he took it back on Wednesday.

On Wednesday afternoon, Chef walked in after school and said hi. Our conversation then went something like this...
"Well hey! How was the play?"
"GooOOD (much anger tone and immediate anger'ish look). How was Mia and Ruth? (very nice tone and calm facial expression)"
"Wait a minute, I want to hear about your play. What did you think of it?" "I SAID IT WAS GOOD!"
"Oh. Ok. I'd love to hear more about it though. You haven't seen a play for a long time"
"I SLEPT THROUGH PART OF IT OK??"
(***HINT: An encouraged nap prior to further discussion would have been a GREAT idea at this point!)
"Ohhh, so you fell asleep. Do you remember anything about it before then?"
"I SAID I FELL ASLEEP!!"
"Oh. Yes, I heard that and am just wondering how your day went."
"I DIDN'T GO, OK!!!"
"You didn't go?"
"THAT'S WHAT I SAID! I WAS TOO TIRED SO I DIDN'T GO!"
"Oh, ok. So what did you do today then?"
"I SAID I WAS TIRED SO I FELL ASLEEP! AND I HAD TO WRITE EXAMS!"
(***Ok Mom, take the hint and drop the conversation for now...but noooo, my brain was stuck on "what was Chef doing if he wasn't at the play with his school")
"No one would have made you write exams on a day when a play is planned though."
"No but I knew I still had some so I WANTED to get the finished."
"Oh, ok. So you brought the money home then that was for the play?"
"No, it's in my locker. I'll bring it tomorrow (very grumpily)."

Chef slept. And slept. And slept. When he got up, he lied and lied and lied over ridiculously little things, grumped all over the place, and spent very much time in the washroom. By 6:30, he was in his room reading for the rest of the evening. He continued with numerous washroom trips through the evening and during the night which included much moaning and groaning and saying things such as, "it won't come out" and "it's stuck" and "it must be from the celery and hummus (in his lunch)" Chef has digestion problems. This is one of the indicators that he's ingested far over the top of what he can handle and I debated whether or not to take him to emerg but the night trips to the toilet seemed less troublesome than the evening ones had been.

Chef was in foul space the next morning (Thursday) and didn't change out of the clothes he'd worn to bed and didn't take his lunch when he stormed out of the house at 8am, but by 8:10 he was sort of doing sort of some exercises but still yelled at me the two times I asked if he was coming in to get ready. Thankfully, by 8:20ish he was in full exercise mode. When the bus pulled up he walked towards the bus so I opened the door, held out his lunch, and reminded him he would need his lunch or he'd be hungry. Chef kept walking. I debated the wisdom of commenting further but did anyway to see if he would take the lunch. It took four times before he turned around and came back for it.

When Chef got home after school, he did his usual check before coming inside to show he hadn't brought anything home that didn't belong here (stolen items - easier to check before he comes in than to get the phonecalls or later discover items and have a long mishmashed experience while we all try to figure out what happened).
"Hey, I noticed the money from the play wasn't in your pockets. Is it in your lunchkit then?" (We have a money program at home for Josh where he earns money. If he has debts to pay from stealing or purposely damaging something, the bulk of earned money goes towards repaying debts first - the longer the debt, the larger the percentage. Chef's actually coming along very nicely in this area. Lately I've also introduced the concept of fines for using my time inappropriately - this has not gone over well with Chef.)
"I SPENT YOUR @#%(* MONEY!!"
"Oh. On what?"
"NONE OF YOUR #@(*& BUSINESS!"
"Being disrespectful to someone else because you created a problem for yourself is not ok. Answer the question."
"NO!!"
I stepped away from the window and went about my business. Chef stormed in through the door - "AND I'M NOT DOING ANY STUPID EXERCISES!! I DID SOME THIS MORNING!!"
"You're bringing disrespect into this home and that's not ok. Out you go til you can be appropriate."

The next while our front and back yards were filled with yelling, swearing, banging the doors, repeated door slams (at which point the door was then locked), repeated doorbell ringing, etc., etc. I continued to go about my business inside and Chef turned things around on his own after about 25-30 minutes or so. He exercised for about 20 minutes, intermittenly responding respectfully when I debriefed with him*, then he went over to the neighbour's for half an hour before spending the evening with his sister while I attended a nice coffee-break evening with other parents whose children also live with autism.

*Chef said that he wanted to keep the $3 for treats instead of go to the play. His resource teacher was away from school and his EA went to the play. Chef said he had no one supporting him through the day. He said he was on his own for the day unless he went somewhere where there was an EA. He bought candy from the canteen. That clears up the digestion problem he'd had plus the anger issues. The remaining mystery is whether or not it's true that he had no EA with him and if so, why not. And how was he able to make a purchase from the canteen or cafeteria when last year's resource teacher put a plan was put in place last year already with the canteen and the cafeteria so they would never sell to Chef unless he had his regular EA with him who'd had the ok from home to ensure Chef wasn't ingesting food that might send him back to the hospital again and to ensure he wasn't spending stolen or unearned money.

So, lesson learned for Chef? Unlikely. Without a knowledgeable, appropriately-supportive adult with him, Chef has always made poor choices when it comes to money regardless of how sick he has made himself other times. With a knowledgeable, appropriately-supportive adult with him, Chef might attempt to lie about where he got the money or about what does or doesn't work for his body, but if he is with someone he respects and he knows they know what works and doesn't work, he usually wants to show that he can make a good choice - just like removing the sugary foods from the food bank bag that he would have otherwise eaten if no one else were there.

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.

August 25, 2011

THIS SUMMER'S GOOD STUFF, THUS FAR

-Chef attended Folk Fest Retreat! And he did not remain velcro'ed to me the entire time! I cannot express how incredible that was! Andy White spent quite a bit of time with Chef, teaching him guitar chords and having meals together and just hanging out. Connie Kaldor also spent time with Chef, encouraging his musical exploration, and played a big part in getting him up on stage performing a solo part with his retreat band!

-Chef carried a flag in our local parade. Almost the entire length of the parade, he talked with a schoolmate about all the food at the FolkFest Retreat. His schoolmate has invited him to a youth group this coming year! My eyes teared up.

-Chef attended our Folklorama pavillion and discovered that he has more of a community there now that he's attended for a second year. One evening, without prompting, he sat at a table with some of the men he knows and was very pleased to report that one of them was working the bar one evening and allowed him to switch cups of soda (which he wasn't allowed to have) for bottles to bring home - "just cuz I know him. He's my friend." Also, Chef was not allowed any treats that week (due to his earlier overdose) and handled that very well. He was also very pleased to discover that there were women working in the kitchen who remembered him from last year. Chef handled coming home at 4am twice in a row, managed himself well when he was very frustrated with the volume level coming from the stage as well as from the crowd, and wasn't velcro'ed to me the entire time when I was busy with other things at the pavilion.

- Chef volunteered with the Summer Arts Day Camp

- Chef has read Edward Rutherfurd's "Sarum" as well as "The Rise and Fall of the British Empire" by Lawrence James. He has taken great pride in the fact that he has his own copy of "Sarum" (sort of a family tradition) and has thus far taken very good care of it in his room. He has also been re-reading both of these books as well bits of various other books, and is requesting more of Rutherfurd's writings.

- Chef remains fascinated by food preparation. I was surprised at how very very pleased he was when I canned homemade lemonade (and wasn't quite so surprised to find that he sneakily drank almost all of it the next couple of days. I have yet to discover a workable way to store prepared food). He frequently talks about how hopeful he is that we'll pick some apples so we can make apple sauce/juice, etc.

- We talk a lot. A lot! And Chef is open to that. It's important that he absorb as much healthy teaching/information/humour/storytelling/etc as possible, and it's equally and possibly more important that I get glimpses into the way his mind operates. It's a good reminder of how much he often has to work at understanding the world. As difficult as his tantrums are, I immensely appreciate having a 16 year old son who seems to enjoy walking and talking with his Mom, and who appreciates being out in nature and has come to a point in his life where he seems to really appreciate what he receives.

- Chef's school bus driver told me this morning that Chef is a joy to have on the bus

- Aside from when he's tantrummed, Chef's growth/development really has come a very long way this year. He seems much more settled than other years, he seems more sure of himself, expresses great appreciation for what he receives, and is (again, tantrums aside!) taking more responsibility for his actions more frequently. I also have to say that even though Chef does tantrum, there are a myriad of times when he does handle it well when things don't go the way Chef would like them to go or when he doesn't get what he wants, etc.

-When he was younger, Chef worked very very hard at trying to wear turtlenecks every day in summer. A few months ago, Chef found big puffy outerwear vest at the thrift shop and was thrilled when I purchased it for him. This summer, the vest started showing up over Chef's arm, in a bag, and on Chef when we would go out. He was reminded by various family members that he would have heatstroke if he wore that outside on such hot days. Most of the time, he would then put it back in the closet. Eventually it became such an issue, however, that the vest was returned to the thrift shop with the statement that we'd look for another one once the weather turned chilly. Chef accepted that without meltdown.

-Oh, and in the clothing department - CHEF IS STILL WEARING THE SAME SHOES HE WORE LAST SUMMER AND ALL THROUGH THE SCHOOL YEAR AND ALL THIS SUMMER!! This is unprecedented. Croc-esque shoes are apparently the answer.

-Chef still isn't wanting to use visual aids for independence pieces and prompts from me are still often barely tolerated mostly due to the high frequency. HOWEVER, Chef is now often carrying a notebook around in his pocket - he's almost never referring to it, but he's carrying it and that's a good step.

-Having now realized that it really does help him and that he feels better when he takes it, Chef is now agreeably taking one of his meds on a regular basis. He has also communicated that the other med gives him headaches. That's a pretty big communication piece for Chef.

-Chef continues to be a wonderful (and very loved) uncle to his two nieces. He is also starting to be quite proactive in setting boundaries with them which, needless to say, has been interesting to watch. It also reaffirms that he's learning and does have a sense of appropriate social expectation/boundaries

-Chef had his first Greyhound ride. He was very nervous about it, then expressed much relief when he discovered we'd be travelling by van rather than bus. We arrived at our destination much later than anticipated, house/pet-sat for another friend that weekend, had a schedule that was all over the place (Retreat weekend) and a myriad of new people to meet. And Chef did it all.

-Chef experienced his first bee sting. We were walking from our friends' house to Wolseley. We stopped to buy drinks but Chef couldn't come inside because he was having a shoeless day, and when I came out I found a very-loudly-crying Chef. Once he was able to calm enough to form words, he showed me his sting then put a cold bottle of water on it and continued walking. On our way back home later in the day, we again stopped at the same shop for drinks. This time when I came out after buying the drinks, a smiling Chef greeted me. "Mom, look. I found my bee. It's the one that stung me and now it's dead." Sure enough, there in the palm of his hand was a dead bee. He carried it all the way home. He might even still have it somewhere.

-Splash Park: We went to the Wolseley splash park. I sat on a nearby bench. Chef sat on the edge of the wading pool and basically didn't move for close to an hour. I eventually called him over and we walked down to Westminster. I asked why he hadn't done anything other than sit, especially since it was such a hot day that there were even adults and other teens cooling off there. He shrugged and said he didn't want to. I asked him if he thought he could try to be more active there if we stopped by again on the way back. He said ok - and he did. He splashed under the sprinklers and submersed himself in the wading pool and kept looking over at me with a look that seemed to say "are you watching?" and afterwards announced that he'd had fun

-Wolseley: Chef loves Wolseley. When he was younger, he used to call it his neighbourhood. On the day that we were going, Chef was shoeless (he'd had to deal with some frustration just before leaving and had thrown his shoes back into the house in anger and had just shrugged and grumped when reminded that he needed to be ready to leave) and therefore had to wait outside instead of choosing produce at Organic Planet and choosing a special stone at Prairie Sky. And he handled it.

It really has been a pretty big summer. After Retreat, I was so amazed at what Chef had accomplished there that I figured that was more than enough for an entire year. And then he successfully managed through Folklorama, plus all the other successes he's had.

August 24, 2011

Yes. I ate the cookies.

Not all of them. At least, not yet.

It's interesting how the brain operates. I felt fully justified in eating the ones I ate, having heard my son repeatedly call me "fuckhead" during today's tantrum, but I was also keenly aware that if I ate them all it would be from a vengeful place and that's not how I want to live my life. My mind also wandered into one of those ol' dark humour spaces - what exactly is a "fuckhead" anyway?

We spent the first week of August house/pet-sitting for friends in another city. Chef did fantastically well all week. He was a very responsible pet-sitter with feeding and grooming and walking. He was thrilled to see a tv in the living room and even moreso when he discovered it was connected to "netflix" as well as a dvd player. He talked a lot about how happy he was that we were able to walk a couple of blocks and find such an abundance of organic produce, and happily overdosed on toasted tomato sandwiches. He agreeably went on fairly long walks almost every day. And then it happened - he found a candy stash. Unaware of the amount of sugar coursing through Chef's veins, I picked up three small wrappers off the floor in the room where he'd been sleeping during the week. I approached Chef holding the wrappers in an open palm and raised my eyebrows. "What? It wasn't me." My eyebrows went higher. "I DIDN'T DO IT!! I KNOW YOU WON'T BELIEVE ME! IT WASN'T ME!" And that was the start of a 3+ hr meltdown in the yard outside of the house where we were staying. From what I was able to piece together between wrappers and Chef's eventual conversation, he'd eaten a sleeve of graham crackers, a large Lindt chocolate bar, a box of granola bars, and various pieces of random candy. Needless to say, he was fairly exhausted following his afternoon of bellowing/swearing/kicking/throwing/ hollering in the yard - and seemed quite stunned to learn that we'd be going out to the first night of a cultural festival that evening regardless, but he handled it. He handled the crowds, the late evening, the noise, the busyness, the action, the friends greeting him and attempting to start a conversation with him. Oh, and he also handled the fact that he wasn't allowed any desserts or treats at the pavillion.

Last week, a 2 hour tantrum. I don't remember right now if it started with the crumpets I'd found wrapped in a teatowel and tucked under the hallway cupboard outside Chef's room or whether it was chore-related. It came two days after a weekend of getting home at 4am two mornings in a row at the end of the cultural festival.

Today, another 2 hour tantrum with much swearing and verbal-machine-gun-firing and yelling, and a few moments of throwing sticks at the house. Last night, Chef hadn't wanted to sweep the floor. He was reminded that he needed to do it tonight or it would be an additional chore waiting for him the next day. He swept a bit then came upstairs and said the floor was done. I checked. It wasn't. This morning, he said he would sweep where he hadn't swept last night. A few minutes later he said the floor was done. I checked and pointed out that there was a magnet on the floor. Cue the tantrum. Chef went into immediate anger mode of yelling, posturing, and general disrespect. A couple hours later, we had a post-tantrum chat where Chef stated that he had been angry because he shouldn't have had to pick up a magnet that wasn't his and that he hadn't put on the floor. When reminded that the magnet belonged to his 17 month old niece, Chef said he hadn't thought of that. We also explored the choice of spending two hours of being disrespectful in order to try to avoid taking a couple of seconds to pick up a magnet. Chef very humbly responded that he hadn't thought of that either. I also had a look at Chef's arm. At the beginning of the tantrum, Chef was asked to go out to the deck. He chose, instead, to stand in the doorway with a very dark facial expression and crossed arms. I put my hands on his shoulders to lead him out of the doorway. He yanked his shoulder and complained about being hurt but did turn and walk to the deck. Later on, I noticed from an upstairs window that Chef had his hand inside his nightshirt and was moving it around by his arm. Shortly afterwards, his yelling started to include statements about how he didn't want to live with me anymore because he shouldn't have to live with someone who would hurt him and that he wanted to talk with one of his workers. I told him I'd already called all his workers and was only getting their voicemails. "I DON'T GIVE A FLYING F---!!! GET HIM ON THE PHONE, YOU F---HEAD!!!" When Chef was able to be back on our deck respectfully, I pointed out that I had seen him from the upstairs window when he had his hand inside his nightshirt. When we chatted once he was able to come inside, I asked him to show me where he was hurt. He explained that his shoulder had felt a bit tight when I'd put my hands on his shoulders. I asked him again to show me where he was hurt - it was his underarm. There was a hive and what appeared to be either light scratching marks or a bit of redness in the folds/lines of his skin. Chef said he hadn't realized that - he just thought that his underarm was bothering him because he hadn't liked it when I put my hands on his shoulders to walk him out the door. We reviewed that it would have worked better to to not struggle against having help to walk out the door, and it would have worked even better to have walked out the door on his own but that either way, having someone put their hands on his shoulders is not going to cause a problem in his underarm. At the end of our post-tantrum chat, I asked what he wanted to do now. "I want to eat but I know I tantrummed through a meal and now I have to wait til snacktime so I'll just do dishes." Wow. WOW!!! I told him that my next question was going to be, "and what WILL you be doing now" and that he had already answered the question very appropriately. I asked him how he planned to repay me for my time spent during his tantrum today - he said I could have the homemade cookies his sister had made for him. WORKS FOR ME!!!! I mean, er, good for Chef!! That was a huge step for him to give up something so valuable to him. I didn't give any specific reply regarding the cookies. And I really did try very hard not to eat even one - and then, I gave in as per the "it's interesting how the brain operates" paragraph. Later in the afternoon, I was on the phone with one of Chef's other team members and asked Chef if he wanted to talk with her. He declined, stating that he only wanted to talk with "T." When I was finished talking on the phone, Chef said he didn't want to talk with T anymore either. I asked why. He said he'd only said that so I would hurry up and get him on the phone so he could talk with him without me talking with him, and that he was angry but now he was embarassed about how he'd acted and didn't want T knowing. I told him that I would have talked with T if I'd chosen regardless of whether or not Chef wanted me to, and that I'd left a message asking T if he'd be willing to talk with Chef about the choices he'd made this afternoon. Chef's eyes watered, then he said he really didn't want to talk with T and that he had to go to the washroom.

After supper, Chef made it clear that he was not into doing the dishes. I had him help me carry a table out into the yard and handed him some sandpaper. Tonight he worked on sanding a table. Tomorrow the dishes will still be there.

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Recent Triggers:
-Nine zillion ounces of sugar from Chef's candy discovery
-Chef's youngest niece and oldest sister are moving out at the beginning of September
-Chef's oldest niece and other sister and brother-in-law who also provide respite once a week are moving to another town this weekend
-This past weekend was a respite weekend, which is wonderful though there was a mix-up regarding scheduling - and regardless of how wonderful respite is, it's still a change
-School.Starts.Soon.
-Housesitting and Folklorama week, back to back, finishing up with coming home at 4am two mornings in a row after much sensory assault for Chef's ears/eyes/patience
-Chef turned 16 last Friday. He didn't get the "all adults" birthday party he wanted, and he bought the candy stash with a big chunk of his birthday gift money and will be having a cake some other time. (There was, however, VERY VERY much appreciation shown for the personal CD player he received)
-More people are talking with Chef about his hygiene. Last night, his sister had him shower when he went over to her house for the evening.
-The local fire dept tested our smoke detectors today

A lot of triggers. And there are always triggers. Environmental. Sensory. Events. Change. People. It's always a balance between supporting Chef through exploring what he can handle and when, and dealing with the times when it's all just too much.

Books and Business

"Mom, did you know...."

This was the beginning of a very, very long sentence in which Chef attempted to explain to me everything that happened in "The Rise and Fall of the British Empire" by Lawrence James. The next day, he started reading "Sarum" by Edward Rutherfurd. Chef's also been reading cookbooks and books about autism.

Chef is also making "pictures to sell" in hopes of starting his own business. He's generally spending a couple of minutes on each picture. In the past, Chef has done some very nice, simple watercolour pieces, and agrees that he wants to have a website to sell some, but when it comes down to doing the base-work for them (drawing the shapes before painting), it's back to mass-producing very basic pictures in very short order.

Chef is frequently talking about wanting to sell items at the local farmers' market. Last week, while at the market for our first time, he suddenly pulled out from his binder of papers a loose piece of canvas he'd painted months ago and announced to me that he was going to sell it. I reminded him that we weren't there as vendors (just playing music for now) and didn't have a sales table set up, and that he could gladly sell some items sometime when we've made plans together regarding what would be reasonable items to sell. Then he realized a lot of baked goods were being sold. This week, there have been many many lists of recipe names, with frequent verbal reminders of the additional need for cookbook names and page numbers. There's also been one long list of necessary ingredients proudly presented to me one day just as we were walking out the door to shop for groceries. Excellent planning! Unfortunately the list only contained the names of the items needed - no amounts, no reference back to the recipe, etc. Chef seemed very disappointed when he realized his ingredient-list was for naught and seemed deflated at the suggestion that he could still use the list and try to figure out the recipes that matched the ingredients, or try again with a new list and let me know when he was working on it so I could help him.

Everything new is step-by-step. It's nice to know there's a degree of motivation that's starting to surface. Hopefully that will stay long enough to smooth out the bits that Chef is finding to be challenging/disappointing.

1.5 Notches Below "Tantrum"

July 25, 2011

Two hours.

Two hours of an outside, "all is not well" show in our yard we share with neighbours - a yard easily viewed by numerous passersby, many of whom were of particular interest to Chef who seemed sure that if he complained loudly enough, some of them might rescue him from having to deal with the attitude he'd given his mom after being reminded that he needed to clean up what he'd left on the stove. He believed he'd cleaned it up - the smoke coming from burner indicated otherwise, and I was the messenger.

And just this morning I was telling someone that things were going well. And they are, for the most part. There have been some amazing happenings this summer, and no major tantrums (loosely defined as yelling and/or swearing and throwing things and not participating in de-escalating, etc). Everything is relative.

One of the things I've started to notice is that whenever I take Chef to see a movie (I'd taken him Saturday evening, the night before last), there are a couple of days when he is somewhat off, starting either the next day or the day after; sometimes it shows in easily-triggered anger/frustration such as today (though easily-triggered anger/frustration are definitely not limited to such days; it's not uncommon for Chef to turn to angry blame when something he's done or hasn't done doesn't work out), sometimes it shows in not wanting to do much of anything at all for a couple of days, sometimes it shows in other ways. But it's just starting to nudge my radar that it's been happening after we go out to see a movie. My daughter and I have also started to notice that it's starting to happen on Sundays or Mondays prior to the Tuesday evenings that Chef spends with his sister.

Within minutes of the yard-show ending, Chef was singing and happily preparing supper. I was worn out. We sat on the deck and I played guitar and sang for a bit, then we came inside. Chef is now alternating between singing and reading in his room and I'm relaxing in mine. I think I'll put in a movie.

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This week, Chef has been great with getting his chores dones and tossing his laundry in on his own, all without reminders. He has also been asking everyday if he can prepare meals. He's been great with his nieces, was a great help in preparing for the local farmers' market, and one day he offered to carry numerous items home from the thrift shop. When I asked why he would want to carry so much instead of dividing everything between us as usual, his response was, "If I carry most of it, maybe you'll let me cook supper." Wow.

As an aside, I do have some mixed feelings on the cooking front. I thoroughly enjoy the meals Chef prepares - it's like a celebration of the skills we've crafted together in his life, it feels good for me when Chef prepares supper at the end of a day that has had its moments due to Chef's choices and/or "behaviours", it feels nice to have Chef giving to his family by cooking, and...well, he loves cooking! At some point somewhere along the line, I'd read that it's not good for children with unhealthy attachment to prepare their own food because it removes a sense of "my parent will provide for me" and feeds their sense of fending for themself, in addition to giving them an unhealthy sense of power over the parent and removing an area in which the parent can be further building attachment. I wish I could remember where I'd read/heard that. It does make sense. It also makes sense to let Chef prepare meals on his own for the reasons mentioned above. Some might even say it makes sense to allow Chef to prepare meals as a reward....hmmmm.

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.