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.

Monday, June 20, 2011

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.

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