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 ( 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, July 27, 2011

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.

Monday, July 25, 2011

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.

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.

Friday, July 15, 2011

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.

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.