This blog was initially set up as a means of communicating with my son's team. Since then, I've heard from other parents with similar stories. If you are living with challenges or journeying alongside someone who is, you are not alone. There are many of us. I'm a single adoptive Mom (http://richesofsimplicity.blogspot.com/) of a young man who lives with many abilities and many diagnoses. We have journeyed together through many challenges and a few adventures over the years as my son has tried to find space in this world that makes him feel more comfortable, an attempt made especially difficult when living with Attachment Disorder, PDD-NOS (Autism), Developmental Coordination Disorder, ADHD, prenatal substance exposure, etc. Some of the strongest elements used in this journey have been music, visual arts, therapeutic parenting, team-connection, boundary-setting, boundary-setting, boundary-setting, communication skills, community-building, continual lifeskills training, and elements of Theraplay. (Click here for some written resources.) On this journey, there is laughter and tears and growth and hope. The greatest of these is hope.

Thursday, June 23, 2011

Chef's Plans for the Future

June 23, 2011

It's another robe 'n reading day for Chef.

I did a room check this morning and found that Chef has been slowly removing more of the metal bits (nails/screws) from his desk, and found two safety pins tucked between a baseboard and the carpet.

We had a lot of discussions today about the upcoming retreat and Chef has only made positive comments - mostly focused on the food since I read him the menu I received in an email and used that information to hopefully help motivate him towards wanting to be there, or at least be willing to be there.

Chef has continued working on "his paperwork" as he calls it, which is a potential step-by-step cookbook as well as step-by-step visual lists for individuals to use for daily living. He hopes to sell these items as part of his business plan this summer.

While he was doing his paperwork, we talked and talked and talked again about future.
Chef would like to be a Navy Seal, and has often talked about this the last few months (in addition to wanting to go to university to study Greek Mythology), so I read him the information found on various websites regarding the Navy Seals as well as Canadian special ops. We talked about the risks involved, and about Chef's desire to protect his country and "do really cool stuff" as well as how special ops may or may not be a good fit for all people. Some of the websites had specific preparatory items listed so I read those and we discussed them. We also reviewed other areas that are of interest to Chef (L.A.R.P., eating, cooking, video games) as well as some of Chef's present skills and talked about what could be developed into reasonable career goals. Chef worked very hard at trying to figure out how he could make a living with eating contests and larping and testing video games. We also reviewed work experiences that Chef has thus far (has played with kids and carried a flag as a volunteer with the local immigration services office, has pulled weeds and worked the canteen and admission table for an event with the local organization working with adults with disabilities, has handed out flyers at The Forks for our music organization, has set up chairs for events, has moved furniture at home and as a volunteer for others, shopped for groceries with family and as a volunteer for others, etc.) and discussed how he is going to add to that this summer and into next year (look into volunteering at the local thrift shop, possibly take a babysitting course, create a resume and distribute copies around town this summer). Chef and I then explored some of the career possibilities that might be of interest to him and would provide a reasonable income (daycare provider, cook, military cook, furniture mover) as well as explored a number of possibilities for Chef to be financially self-sufficient, either partially or completely, by doing various things that might be possible for him in his own home business. Chef's focus often switched over to comments such as, "I'll go on assistance though, right? I'm buying a tv and a game unit with my first cheque." Each time, Chef was strongly reminded that assistance does not provide much money at all and that he had other responsibilities such as debt repayment, rent, utilities, groceries, then we'd review the financial reality of a realistic budget he'd have on assistance. Chef seemed to understand - until he would again shift the conversation back and make a similar comment further along in the discussion.

For now, he's working on his cookbook and visual prompts. He's initiated discussion on doing painting this year ("cuz I saw that you make money selling your paintings so I should do that too" - Excellent!), then went downstairs and brought up a ripped/folded/bent-up pastel picture he'd made and said he could sell that. I smiled and suggested he consider making more similar pieces and I'd gladly do up a website for him.

At the moment, Chef is singing in the kitchen while he prepares supper. All is well with the world.

**********************************

One of our discussions earlier today was about businesses that do well because they have a specialty that no one else has. This evening, Chef has been working on "secret sauces" from scratch that he hopes to sell in the future. My eyes have been watering a bit upstairs from the experimenting taking place in the kitchen downstairs. I'm not much for BBQ-style sauces, but his first batch was quite good and is definitely a unique blend of ingredients. His second sauce smells wonderful; heavenly with a hint of fruit - or something like that. Of course, I can't share the recipe - it's a secret ;-)

Wednesday, June 22, 2011

Robe, Reading, and Retreat

June 22, 2011

Chef has spent the past two days lounging in his bathrobe eating bon bons and watching soap operas. No, not really. But he has been living in his bathrobe, preparing meals, doing dishes, and reading. He hasn't put his laundry in recently and has run out of clean clothes so I figured this is as good a time as any to see if he tires of living in a bathrobe if left to his own about it. Friday will be the cutoff, though. I wonder if I'll need to prompt him for Friday since he is fairly set when it comes to doing our weekend errands, especially when we start running low on food items he enjoys.

(Along those lines, I might add that he's recently been pointing out when we run out of other items as well and, with much training over the years, he will now talk about what we're out of while we're at the grocery store and is just recently starting to independently initiate picking up some of the items after checking with me. "We're out of baking soda, Mom. Can I get some?")

Chef has three books on the go: Their Majesties and Other Folks, The Poems of Al Purdy, and Unraveling the Mystery of Autism and Pervasive Developmental Disorder. He says he's going to read all summer long.

Today I was offered a bursary for Chef and I to attend an instructional music retreat in another city. I hadn't applied for the bursary because it didn't work to try to take Chef along last year and I wasn't able to arrange accomodations/ transportation by this year's application deadline. When I was told today I could have the bursary regardless, I tried again to find a place to stay and transportation to get there and back home. A friend immediately informed me that she was going to be away that weekend and was wondering if we'd stay at her place and care for her dog. Perfect! Only two pieces to figure out - transportation and getting Chef onboard. I'd also had a bursary last year for both Chef and I to attend, including specialized meals for Chef at the time. I think it was the night before the retreat when Chef was outside in our yard around midnight wearing not much more than a tent with his head poked out through the zipper and announcing to the neighbourhood that he wasn't coming to the retreat. He ended up staying with the neighbours. That respite option is no longer available (aside from a couple of hours here and there if occasionally needed). Until today, I'd ruled out the possibility of attending this year's retreat. But after being offered the bursary without having applied and after my friend offering her place for us to stay, I told Chef about the opportunity. "Oh, that's good. Where will I stay?" "Well, there isn't anywhere else for you to stay this year." "You mean I'd have to come with you?" So, I had a very respectful yet very blunt talk with Chef about how family members do things for other family members and sometimes we just have to figure out how to deal with things with which we'd rather not have to deal, tried to demystify the retreat for Chef as much as possible and pointed out that Chef could gladly just curl up in a comfy chair somewhere and read to his heart's content, reviewed coping mechanisms, talked a lot about my friend's dog (presently one of two highlights of this impending "adventure of doom" in Chef's life), and about the wonderful food (you guessed it - highlight #2!) they'd had at last year's retreat. I sort of feel like I've pulled the pin on a grenade, and am thinking the next week will now be just chock-full of downtime/R&R! But I really do believe Chef can do this. Maybe this year, and maybe not, but I know he is capable of facing this challenge. Please let it be this year!

*******************************
I was wrong! The tent incident didn't happen around the Retreat! I looked back at last summer's blogs and found the tent incident happened right after a week of camping and just before a week of attending a cultural event. It's a good thing we have blogs these days ;-) Chef did choose not to come to the retreat and did stay with neighbours, but that all happened much more mildly than the pre-Folklorama incident. So now I'm that much more hopeful for a smooth departure....

Monday, June 20, 2011

Exams,Pizza,Dishes,Deck

June 20, 2011

Chef slept just over 2 hours when he came home from school today, then read for a bit ("Their Majesties and Other Folks"). We had a late supper, celebrating his last day of school/exams with a pizza. As soon as he finished eating, Chef said he was going to do the dishes. Excellent! There were dishes from yesterday and a couple of plates/cups from today, but no more than one load of dishes plus one load of pots/pans. 45 minutes later I went into the kitchen and found Chef sliding a very greasy, very wet pan into the drawer under the oven. Not so excellent. He was angry as soon as he was discovered before I even said anything. It's been a long weekend for both of us, and I imagine Chef is feeling as weary as I am and probably moreso. I told him that ONLY because he had written exams today and it was the last day of school, he could choose to finish up the dishes and have the rest of the evening free or he could just relax in his room for awhile then have an early night. Chef calmly said ok and walked nicely up the stairs. About half an hour later I went up to check on him. I suggested he open his window at least a crack for a little bit to air out his room. Chef said ok and when he slid his window open, I noticed something fall/flutter. I walked over to the window and glanced out. There on the deck were a couple of paper airplanes. "Ok, c'mon. Let's go down so you can clean up your stuff on the deck." Chef nicely walked down the stairs and out to the deck, picked up one paper airplane, and started walking towards the garbage. I reminded him he needed to pick up each piece, including the spitballs scattered around the deck. Chef grumped and attempted arguing, and was reminded that tossing things out his window was not a good plan. Once he was finished cleaning up outside, we went back into the house and Chef was asked to bring down the art folder from school (he's kept it in his room since January!) he'd been ripping up as airplane/spitball fodder. He brought it downstairs and threw it out. I asked him what would have worked better tonight. This was met with tone. I pointed out the front window. Chef nicely walked outside and stomped the ground then did some jumping jacks. I asked him through the open window if he was ready to talk without tone and he said and showed that he was. I asked him if it had worked to toss stuff out his window.
"No."
"Does it feel good to always be doing things that cause problems for you?"
"I'm tired of everyone talking to me all the time about what I do."
"If you hadn't tossed paper out your window, would anyone have had to talk with you about it?"
"No."
"If you hadn't tried putting away the wet, greasy pan, would anyone have had to talk with you about it?"
"No. I'm just tired of everyone talking to me all the time."
"Ok, so what would have been the easy way to have less talking?"
"To not do that stuff."
"Yep."

And with that, Chef took his meds (for the first time in weeks!) without issue and went to bed. A few minutes later, I asked him how far he'd read in his book earlier.
"Page 30, I think. I really like that one."
"Wow. I bet you'll be almost finished by bedtime tomorrow. Hey, I didn't see your hackey-sack on the kitchen counter. Does that mean you put it away somewhere?"
"I put it on the cupboard thingy. And I put my money thingy there too" (I'd dropped a quarter on the weekend. Chef picked it up and handed it back to me, so I let him keep the quarter as part of the ongoing plan to help Chef realize that there are feel-goods and other benefits to being a positive family member, and as part of the ongoing "surprise" reward system)
"Well, tomorrow let's find a better place for it."
"Ok."
"Goodnight sweetie."
"Night Mom."

Oh Monday, I Will Miss Thee

What a weekend!

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

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

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

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

Friday, June 17, 2011

Ah, Summer

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

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

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

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

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

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

Thursday, June 16, 2011

Where, Oh Where Has My Pumice Stone Gone

Thursday, June 16, 2011

Chef is drawn to stuff - little bits of stuff. Along the baseboards and on the floor of his bedroom, you can usually find balls that have been made up of lint/fluff/thread, tiny bits of paper, tiny bits of stone, broken bits of small metal objects (screws, bobby pins, nails, paperclips) tied to bits of thread or jammed between the baseboard and the carpet if I haven't been vigilant in keeping his room clear of metal bits, etc., etc. Sometimes he uses the latter to start holes in drywall; sometimes he tucks bits 'n stuff inside drywall.

Sometimes we keep vinegar in the bathroom for cleaning purposes. Sometimes, the vinegar bottle ends up with bits of thread, lint, fluff, and floor harvestings floating inside. Sometimes we keep baking soda in the bathroom for cleaning purposes. And sometimes the baking soda container also ends up with similar contents.

I haven't kept my toiletries in the bathroom for years because Chef used to experiment with them, pour some down the drain, break off pieces of deodorant, etc., and I only needed to find my toothbrush not in its usual place once before deciding to keep toiletries somewhere else. We've stopped keeping Q-tips and bathroom linens in the bathroom as well. Every once in awhile, I put a couple of towels in the upstairs bathroom cupboard, and every once in awhile I put a box of Q-tips in the main floor basement, but that never lasts long and it's not an area where I've chosen to put much time and effort when there are other areas that are more of a priority for Chef. My daughter who moved back in last summer, however, keeps all her shampoos, hair products, some hair accessories, etc., in the bathroom and has thus far only had one or two minor mixing experiments happen and they've been fairly recent.

I've recently decided to keep one of my pumice stones and my homemade "shampoo" in the bottom drawer in the bathroom. So far, that's been fine so I decided that I'd put my bottle of olive oil in the drawer as well. The bottle itself, as far as I can see, is fine. There has since, however, been olive oil on Chef's bedroom wall ("Why is today's urine on the wall shiny?" Ah yes, one of those things I'd never imagined myself wondering), olive oil in the baking soda container, and an olive oil/baking soda blend smeared onto the tub surround wall (likely to see if olive oil/baking soda works as well as vinegar/baking soda, I imagine). And so, the olive oil bottle has migrated back to my bedroom.

This morning, I noticed my grey pumice stone was not in bathroom - not in the drawer, not by the tub, not on the counter, not in the garbage pail, not in the cupboard. It's a pumice stone. No feet, no friends with cars. I don't take it to other rooms. I checked Chef's room. Not there. I very bravely lifted the corner of his vent cover with the edge of my thumb and even more bravely slid my arm down and felt inside with the back of my hand then pulled it out and exhaled. Not there.

Then my mind started to wander. What would be the draw of a pumice stone? Maybe it was one of the items thrown onto the neighbours' deck. No, they would have easily found it and it would have made a different sound than the sound they'd described. Maybe it will just suddenly re-appear like the cell phone that went missing then suddenly re-appeared in a very obvious spot on the hallway desk after I'd pointed out that it no longer worked anyway.

Not that a pumice stone matters. It's just stuff.

Wednesday, June 15, 2011

Studios, Seashells, and Dignity

Thursday, June 16, 2011

This past weekend was wonderful.

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

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

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

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

Friday, June 10, 2011

Recent Lunch Mystery Solved - I Think!

June 10, 2011

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

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

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

Glasses at Last!

June 10, 2011

Chef took his glasses to school today!

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

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

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

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

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

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

Thursday, June 9, 2011

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.

Wednesday, June 8, 2011

Morning Brain

June 8, 2011

Today was Day #3 of Chef going to school without his lunch. He's back to waiting til the very last minute to get ready for the bus regardless of how much or how little time he has in the morning. He has lunch servings of one of his favourite stews frozen in the kitchen freezer and there are baskets of fruit on the table/counter. There are days when I've even removed the stew from the freezer and set it out with fruit for him to pick up and reminded him to take his lunch - and yet it is still sitting in the same place as he makes his mad dash out the door once the bus arrives. (There are many times that Chef does bring his lunch. In fact, there are many times that Chef prepares his own lunches AND brings them to school. Other times - well, not so much. Lately, the most consistency there's been with lunches going out the door and breakfast being eaten has been on mornings when I have put Chef's lunch and a portable breakfast item outside for Chef. And while that "works" as far as ensuring he's getting food into his belly, it doesn't work when it comes to supporting independence.) When I've asked what he's been eating for lunch, he says he hasn't been eating anything but his school staff has told me other times that when Chef doesn't bring his lunch, other kids share with him. This is the first year when that's been ok with a school - this is also the first year that Chef hasn't been sneaking food from other students' lunches regardless of whether or not he has his own lunch. This morning, Chef grabbed a mango and an orange on his way out the door.

During the past weekend, Chef found his new glasses that he'd misplaced shortly after receiving them. They look so nice on him! I reminded him to bring his broken glasses home from school on Monday so he could trade and have his broken glasses at home and his nice new ones at school. Chef did great - brought his old glasses home on Monday! His new glasses, however, continue to sit in the front hallway about 3-4 feet from the door. I asked him again this evening how things are going at school without glasses (terribly!) and reminded him again that he needs to bring his glasses to school.

We had an incredible storm last night, complete with lightning, hail, and very loud thunder. Chef and I were out chatting with a neighbour earlier this evening and she asked Chef if the storm had woken him. Chef shrugged and said he'd slept through it. I smiled and reminded Chef that it wasn't long ago when a storm like that would have had him screaming and panicking.

It's definitely nice to look back and see so much growth over the years.

No Shirt, No Shoes, No Service?

June 8, 2011

Chef came home from school in good space yesterday. He usually has a rest time when he gets home and yesterday was no exception - snoring was heard in short order and there were no other sounds from Chef's room for nearly 2 hours. Chef came into the kitchen wearing just a shirt; a long-sleeved, button-up shirt that covered
"everything" well, but just a shirt nonetheless. I raised my eyebrows.

"Really? Is wearing just a shirt appropriate?"
"I can't find my shorts for at home" (because Chef is back down to just one pair of pants, he has a pair of shorts that he changes into when he comes home from school and has been using them as pyjamas as well)
"You can't find them?"
"I left them at school."
"Should they have gone to school?"
"No."
"Tell me what should have happened this morning."
"I should have gotten dressed before the bus came."
"What do you need to do now?"
"Put on my robe."
"Quickly. Then we'll do supper on the deck."

I went into the washroom and when I came out I noticed Chef's robe still on the living room chair but I knew I'd heard the back door. Sure enough, when I glanced out, there was Chef sitting on a chair on the deck, eating. Shirt only.

"Is this appropriate?"
"Um. No. I was hungry."
"I don't want your bare bottom on one of my chairs. Get off the chair immediately and get your robe."

I came inside without closing the door behind me, thinking Chef was following. He wasn't. I glanced back out the window and saw him sitting on the deck, eating.

"What did we just talk about that you need to do?"
"Um. Get my robe?"
"Exactly. Get your robe on. Find your focus or your willingness to do what you need to do, whatever it is you need to find to move on appropriately with your evening, find it now."

Chef stood up and started doing some jumping jacks.
"I don't want to see your penis when I look out the window, and the folks across the way sure don't need a show. Come inside, put on your robe, find your focus."

Thump.Thump.Thump. Chef was now doing jumping jacks with his shirt tucked between his legs.

"Dude! To your room. Immediately."
"I'll look dumb in a robe!"
"To your room."

As Chef walked past the living room chair, he glanced down at his robe and said, "Oh, there it is."

When Chef was called down a few minutes later, he immediately put on his robe.

Chef remained in good space the rest of the evening. At one point, he asked again whether we're going to any music performances this summer, chatted again about how his EA is leaving for Africa, we talked a bit about again at how surprised I was that he hadn't wanted to finish a can of iced tea the other day because it was too sweet for him. When Chef started dishes, I went up to see how things were in his room since the ripped-open lining of the armchair and books had been discovered. The concern was that the neighbour thought that the first item Chef had thrown onto her deck was likely a screw or something along those lines. I'd noticed awhile back that Chef had removed a couple of the nails out of the back of his computer desk. And he'd started more toenail collections. All in all, time to do a safety check.

And there they were - little piles of staples that had been removed from the underside of the armchair. The chair's been in Chef's room for over a month, I think, and the lining was just torn open within the past week. The staples will have been removed within the last two days. I'm still not sure when Chef will have taken the pile of books upstairs, nor how he got them home without any of us noticing. I do know that he's sometimes done such in stages; hidden something outside then stealthily brought it inside at some point and hidden it somewhere else, etc. Sometimes he's even forgotten about items he's hidden. I don't usually watch Chef walk from the bus anymore, and there have been a couple of days here and there when my daughter has been home when Chef has arrived at home, so there are possibilities there for stolen books to make their way into the house. Chef always does "a check" before going up to his room, but not always when he is going upstairs under the guise of cleaning the upstairs bathroom so there's that possibility. Hmmm.

At any rate, it's clearly no longer safe for the chair to be in Chef's room. He brought it downstairs and took it out to the trash, along with the remainder of the nails I'd pulled out from his computer desk.

And with that, we called it an early night and Chef was soon snoring upstairs.

Tuesday, June 7, 2011

Disrespecting the Neighbours

June 7, 2011

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

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

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

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

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

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

Monday, June 6, 2011

Books

June 6, 2011

Chef's bedroom is fairly empty

Right now, it contains a computer desk (which is slowly being taken apart), a mattress, what is left of the bench from when the piano keyboard was in Chef's room, an upholstered armchair, and a laminated map which Chef keeps on the floor beside his mattress.

After years of continuing to attempt to create a nice space for Chef and then attempting to help Chef create a nice space only to have numerous items just not last very long within those four walls, Chef stated that he feels better with nothing in his room. Kudos for self-awareness and communication.

Books in the bedroom are a bit of a tricky area though. We have tons of books, and Chef is a great reader. But books in the bedroom are a different creature - they've kept Chef up at night making it nearly impossible for him to function the next day, they've woken others in the night when they've dropped onto the floor, they've had pages torn out and turned into teeny bits of paper ball lined up along the bedroom baseboards or made into spitballs to decorate the bedroom ceiling or turned into paper airplanes and flown out the bedroom window (years ago, some even had notes written on them, something to the effect of, "Please help! My mother has been in the hospital for weeks and I have been here by myself. Please go to shoppers and get me cereal and chips. If you don't do this, imagine how you are making someone feel"), and there have been times when books have been the reason that Chef seems "off" on an occasional evening.

For all those reasons and then some, Chef does presently have limited access to books. Magazines can be in the bedroom anytime at all as long as they are magazines that belong to Chef. Books, however, are not to be in his bedroom unless they are his own or he has asked permission to borrow someone else's book, and they can only be in his bedroom during certain times - anytime (free time) on the weekend as long as they are brought back downstairs before going to bed Sunday night, and anytime (free time) during the week as long as they are brought back downstairs before bedtime.

The exception: no sneaking/hiding books upstairs. As mentioned earlier, there have been times that Chef has seemed "off" during an evening/afternoon and it has later been discovered that his goal was to be sent to his room so he could read. Reading as a goal? Awesome. Trying to get sent to your room? Not cool. Such was the case today. Six books tucked into the ripped lining on the underside of the armchair. So we chatted. The lining and the books have been removed. Chef is in bed. Tomorrow is a new day.

Turnaround Day!

After ten days of backed-up chores, I am happy to announce that Chef did a turnaround. He caught up on his previous chores, did his present chores, and surprised me with a kiss on the cheek and some lilacs that he'd picked! When asked why he was suddenly doing his chores, he said he was tired of seeing everything pile up and he didn't want everything to pile up more.

Since then, Chef has been doing his chores and helping with some extra family projects. He is also cleaning up messes he's made (with prompting but without acting out even though he appears frustrated/sad at the time) and is once again a positively-participating and contributing family member.

Stress

There was a time when it was anybody's guess as to what may have been bothering Chef on any given day when "behaviour" was the bulk of Chef's communication regarding how he was feeling. There was also a delay in how he responded to stress.

Lately, however, Chef has been frequently talking about his EA leaving for Africa sometime next year. He's also asked about which music festivals/ activities we might take part in this summer. AND, Chef recently stated that one of the reasons he doesn't like taking his meds is because he feels a bit dizzy around mid-morning when he takes his meds. Progress. Self-awareness. Communication.

It feels good to have days when the focus just needs to be on prompts and reminders and communication skills and developing lifeskills. And it feels wonderful to see Chef continuing to grow and develop.