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.
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.
Wednesday, 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.
-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
-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.