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.

Monday, July 11, 2011

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.

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