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.

Friday, August 20, 2010

Starting to Eat Regular Meals Again

The day after the "hidden cereal bag attempt," my son was actually up before lunch! In fact, he was up before breakfast! I heard him starting his day with some exercises at 5am. Unfortunately, that was just far too early for me that day. He handled the news well and started again at 7am. He did some exercises, washed up, got dressed, and came downstairs. He decided to make his own breakfast. He took eggs out of the fridge and asked if it was okay if he cooked up some eggs. "Sure!" I said. "That would be a great idea." He then put the eggs back into the fridge and said he was going to just have cereal. I reminded him he'll need more than just cereal and that some protein and fruit would be good to have with his cereal. He put the cereal back. He then said he was going to have cornmeal. "Sounds good, just be sure to still have some protein and fruit." He stomped into the living room with arms folded across his chest and a scowl on his face. I reminded him to work off his frustration before returning to the kitchen, and that he'd still need to have a full breakfast after that, especially since he hadn't been giving his body all the food he needed the past few days. He did some "stomping" jumping jacks, came back to the kitchen, and had cornmeal, a boiled egg, and an orange for breakfast.

At lunchtime, we went to a local restaurant to eat. My son said he wished there were places in our town that served gluten-free hamburgers because he really wanted one. I suggested that he just order one without the bun, and an order of fries. He grinned and nodded. When the server came, he ordered his hamburger without the bun and an order of fries. When the server brought our order, she placed a plate of fries and a burger in front of me and a plate of fries and a bunless burger in front of my son. My son thanked her and started his lunch. He finished the burger first, then nudged the plate of fries a little to the side to make room for his paper, then sat and read for awhile. He continued reading without touching the fries. I reminded him he had fries to eat. He looked up at me then looked at the fries and said, "Oh, I wasn't sure if those were mine." I asked him whose he thought they might be and he said he didn't know. I did a quick review; Did we talk about what you were going to order? Yes. Did we agree that you'd be ordering a burger without a bun, and fries? Yes. Did the server bring your order and put your burger and fries in front of you? Yes, but now they're over to the side.

Sunday, August 15, 2010

One Step Forward, One Step Back, One Step Forward....

Today my son didn't get up til after 1pm...again...but he didn't complain about missing lunch, and stated he would have a snack. He then immediately started on dishes (he has yet to complete even one chore in the past 3 weeks, though has started on dishes a couple of times since we got home). There was much singing as he was doing dishes. I did a few check-ins to make sure there wasn't food hidden in the bathroom or under the sink or in the sink and all was clear :-) (There have been times when my son has put a jar of jelly IN the dishwater and eaten the jelly while washing dishes; has downed a bottle of corn syrup while washing dishes; has also tucked canned goods and can opener under the sink while washing dishes but was discovered with the reminder (again) that we access food appropriately and we don't hide food to eat it; etc., etc., etc.)

Over two hours and a few reminders later, my son was still happily singing but the dishes were far from being done. He was averaging about 3-4 dishes every 10 minutes. I reminded him that today was baking day and if he planned on doing any baking, the kitchen needed to be finished in 10 minutes. I went upstairs.

Shortly afterwards, I smelled something "hot"..then heard the furnace kick in. I went downstairs and checked the thermostat; it was set for 88 degrees. Dude, not cool.

It is now just past 5pm. I haven't checked them yet, but dishes are technically washed as of a few minutes ago!

Update: After supper my son put a load of laundry in the washer. While my son was clearing the table, I noticed that a case for one of my instruments was sitting in an odd place in the living room. On further investigation, I discovered a bag of cereal inside the case. My son's initial response was that he didn't know anything about it. He later stated that he'd put it in there so he could later take it up to his room so he could eat cereal in the morning without having to get up for breakfast. He is now in his room for the night - without the bag of cereal!

Getting There, Slow But Sure!

Yesterday we had a few errands to run. My son needs some of his clothing replaced again, so we needed to head over to the local (and wonderful, I might add!) thrift shop. I also wanted to pick up some local honey and some rice bread at one of the other shops downtown.

My son didn't get up til after lunch and was only ready to leave with an hour to spare before the thrift shop would be closing. He chose not to bring a snack with him, but he was in good space throughout the afternoon. We went to the thrift shop first and he did a good job in picking out appropriate shirts and a pair of shorts.

As he was waiting in line, I asked how much his clothing would come to and he said he didn't have enough money for what he was buying because I hadn't given him "all his allowance." I reminded him of how allowance works; average allowance for him right now is $5/wk. If he has taken care of his responsibilities, does not have to repay for damages to anything, etc., he receives the full $5. If not, he will receive $2. He has the opportunity to earn up to $8./wk if he chooses to take care of his responsibilities and do extra chores. I then asked him again if he had received all his allowance for the past 3 weeks, given the choices he'd made while camping, while away at the cultural event, and since we've been home. His immediate response was "Oh. Yeah. Yes." He then stated that he only had $4 with him rather than the $6 that was on the table for him. I reminded him that he then needed to make sure of what he was able to afford before he got to the check-out. My son nodded, and I stepped back a few feet so he was in line on his own with his clothing and his money.

When it was his turn at the check-out, he put all the clothing items onto the counter and informed the woman that he didn't have enough money. The woman beside him immediately offered to pay the balance and my son nodded and put out his hand. I stepped over to the counter and asked my son if that was the appropriate way to go about this. He said, "no" and looked away from the woman who'd offered to help him. I smiled and told her that he was learning about responsibility. She smiled back, as did the woman behind the counter who also added, "I appreciate what you're doing with your son." There are staff at the thrift shop who are aware of my son's challenges with clothing and stealing; they've done well with supporting him in learning to do the right thing.

We spent the rest of the afternoon together without incident and my son gladly ate supper without any issue.

Tuesday, August 10, 2010

Holidays are Hard!

(August 10, 2010)

Well, bits of the last few weeks have been fairly hellish. Those of you who know me fairly well know that silence usually means there are challenging events happening.

Summer has historically been my son's least challenging season. In fact, it's usually a consistently enjoyable season. The only real blips we've had during summers the past few years have been when we've gone camping or have had plans to go camping.

It all started a few weeks back when my son got wind that there was a possibility that we might be going camping. His anxiety rose, evidenced by numerous questions about animals and tents and food and water safety, occasionally mingled with positive comments about good memories from last year's camping trip.

Now, my son loves camping; or the idea of camping. Perhaps it is the "being out in nature" part of camping he enjoys. Prior to this year's camping trip, family members have commented that my son has even told them that he loves camping.

Camping, however, involves change; change in routine, change in scenery, and mostly just change from familiarity. And camping involves uncertainty and anxiety. Will there be a raccoon in the night? Will there be bears? What if someone comes into one's tent? And so it began.

My son was a great help in bringing the camping stuff up from downstairs and in coming up with "over the campfire" cooking plans. But by the day of departure for the campground, my son was still refusing to pack anything other than swim trunks. He was quite verbal about me not packing for him, and had occasionally stated that he was going to pack but just went up to his room then slowly dawdled down the stairs a few minutes later, stating he wasn't packing. And on the day of departure, he refused to get dressed until we were literally walking out the door.

When we got to the campsite, my son did a phenomenal job with setting up his own tent and said he would set up mine as well.

That's where the cooperation more or less ended for the week. His jobs for the week were: hygiene for himself and his belongings, clean up the dishes after he and I ate, and to not go anywhere other than our campsite without permission.

Some days, he just put the dishes away dirty and told me that he'd washed them, then grumped/made faces/went on strike/etc when I told him he still had to wash them. Some days he literally took ALL AFTERNOON to wash the dishes: two plates, two forks, two knives, a pan/pot. Some days, this was accompanied by whining and complaining that "other kids don't have to do anything when they're camping."

One day, my sister caught my son having a look in a garbage can on the way to get water to wash the dishes after lunch (the concern here is that my son has taken food from garbage cans in the past, even right after eating a large meal; if my son sees something that interests him, he is drawn to it, even if it is sitting in a garbage can). My son informed me that my sister was lying about him. Another day, she discovered that some muffins were missing in her vehicle after my son had been in the backseat on a trip into town. My son's response to me was that his aunt was lying about him again.

There are more details of the camping trip, but I'm too tired to go into them right now.

The positives were that my son did a primo job of putting up and taking down both tents, AND slept in his own tent every night without crying or calling out to me in the night/early morning.

Now, this is where things got tricky.

We got home from camping one day before we had to leave for a week-long cultural event in another city. And though my son had been to the same event in the past and stated he enjoyed it, and though my son was presently talking about fun things he hoped would be taking place during the event, it all started crumbling as time progressed. Piggy-back transition time. Long story, short? My son was standing outside, naked, in our back yard around midnight telling me that he wasn't going to go anywhere the next day.

We don't have a big yard. We don't have our own yard. We live in an attached home and share the yard area with other families.

Eventually, he sat down then started complaining that bugs were bothering him. I put his tent outside on the deck for him. He dragged it onto the grass, crawled into it (disassembled), zipped it up around his shoulders, and sat there on the grass with his head sticking out, complaining. He eventually came into the house under the agreement that he would behave appropriately inside. I was shocked and relieved to find out the next day that the neighbours hadn't heard him.

The next day, he refused to get dressed (I remember he WAS wearing something though; I think it was maybe a towel wrapped around himself) and again stated that he didn't want to go anywhere (we'd had many discussions about the time away, etc). When I reminded him that there was nowhere else for him to go, and started talking about the positives he'd previously discussed, he made his angry face, crossed his arms, made disrespectful remarks, and turned away. He later was not happy to discover that one of his sisters and her friend were downstairs and had heard conversations we were having. He suddenly shifted gears and asked me if the friend was going to be there the rest of the day or would be coming back later, and turned his attitude around, grabbed a bunch of his clothes, etc., though still didn't get ready to go. It was when my daughter and son-in-law were parked on the driveway waiting for us before my son quickly ran into the house, finished getting ready to go, and tossed his clothes into a bag.
During the week away, my son actually did very well with being in a different house. We house-sat for friends, and my son didn't get up at all at night, nor did he go through cupboards, etc. Of course, I was with him the entire time except when he decided to sleep away his entire morning, which was every day. I knew, however, that there were books where he was sleeping and he can't help himself if there are books to be read. I was fairly confident that the draw of the books would call his name should he decide to try to do any unauthorized exploring upstairs while I was downstairs.

Every single day, he attempted to just stay in his pyjamas (which were actually just an old outfit because he doesn't have any pyjamas left). Every single day, he attempted to complain about doing anything that came close to resembling a chore/responsibility, or anything that he didn't deem to be fun. He often missed lunch because he refused to get up and start his day til the afternoon. Sometimes he would have a snack in the afternoon but other days he wouldn't get up and ready til I was getting things together for us to leave the house, and would then complain that I wasn't feeding him. Interestingly, he was up and dressed for lunch every time he knew we were having corn on the cob. So let's see, corn on the cob every day....every meal....

We spent every evening at the cultural event. Before I would go up on stage, I'd get my son settled in wherever he was going to sit with the statement that he was to stay there until I came off stage (anywhere from 10-20 minutes). There were no problems the first couple of days, and he behaved very well whenever I was with him, but by the third day I was receiving reports from others he was talking as though he owned the place and was giving people directions as to what they should be doing. His theme for the week also seemed to be, "if I lie, I might get more stuff or stuff I shouldn't have or at least the entertainment of adults believing my lies." By the last couple of nights there, he would wait til I was performing on stage then would leave where he was sitting and try to get people to get him extra helpings from the kitchen, have Pepsi, lie to folks to get them to do what he thought they should do, etc.

We got home around 1:30am on August 8. My son slept til after lunch. He came downstairs but didn't want to do anything and said he was going up to his room - then he quickly grabbed my keys (which I'd unfortunately left hanging from my doorknob!), ran into my bedroom, and closed the door behind him, apparently thinking he had locked me out. He hadn't, and when I walked into the room he was just standing there. He said he was hungry. I asked him whether this was an appropriate way to get food, or whether it would have been better to go in the kitchen and eat. He agreed that it would have been better to go to the kitchen to eat. He immediately gave me my keys when I put out my hand, and though he initially resisted for a moment when I told him to leave my room, he walked to his own room a few seconds later. He did get dressed at some point during the afternoon, had a snack, did a chore and ate supper, then did dishes.

Monday and Tuesday were "try not to get dressed" days again, followed by much complaining when he wasn't welcome at meals if he wasn't wearing clothes. As of Monday, he had four outfits still in the closet. He went through three of them on Monday because he'd suddenly taken to blowing his nose into his shirt (and chuckling about it) then attempting to blame me because he was running short of clean shirts.

On Tuesday, he waited til we were out the door to get dressed then attempted to leave the house in short, ripped, boxer shorts and a dirty shirt, stating he had only one pr of shorts and one clean shirt left and he was saving them. Needless to say, he didn't get off the deck in the boxers and dirty shirt and did end up putting on appropriate clothes. When we got home, I reminded him that he needed to water the plants on the deck. When he came inside, his clothes were dripping soaking wet from head to foot - well, shoulder to knee! He looked at me then stated he had gotten his clothes wet and that this was his last clean outfit. He attempted to blame me for his situation, citing that he'd still have clean clothes in the closet if I hadn't made him change shirts after blowing his nose into them. He once again became "naked boy" though he would occasionally wrap a towel around himself, and agreed that it would be good to not get rid of pyjamas/bathrobes in the future.

Evening laundry time started out with a food adventure; my son decided to grab a jar of Miracle Whip out of the fridge then threw it into the hall closet on his way downstairs (for supposedly consuming later after sneaking it up to his room later; historically not new, but haven't seen this "behaviour" for quite some time). Present status: load of clothes in the washer, mayonnaise and closet contents cleaned up and tossed out, son seemingly in good space, tuckered out, and in bed around 10pm.

Next day:
My son came out of his room this morning shortly after I was up. I reminded him that I didn't want to see him naked, and that "naked" is only appropriate in his bedroom and in the bathroom. He wrapped a towel around himself, smiled when I told him how nice it was to see him in the morning, and accepted a hug from me. We talked about the importance of wearing clothing around other people and at the table, and the importance of eating. He said he knew what he needed to do to "have a good day" and decided that he would immediately throw his clothes into the dryer; he seemed to be on the road back to making good choices. While my son was waiting for the dryer, he kept a towel around himself and did dishes, singing the whole time, while I worked on my music in the living room. When the dryer buzzed, I reminded him that it was time to bring his clothes up from the dryer, get dressed, and eat. My son quickly ran into the washroom and closed the door. I came into the kitchen and knocked on the washroom door. My son called out in a "telltale" tone that he needed "to pee." I waited for more than enough time for him to use the toilet, then knocked again and said that it sounded like he was up to something in the washroom rather than just using the toilet. No response. I turned the doorknob and discovered it was locked. My son started laughing from inside the bathroom. I unlocked the door and found my son sitting naked on the bathroom floor, surrounded by numerous tins of food, and starting to open a tin of beans with a can opener. He looked up at me and started crying. I told him to stand up and take the food out of the washroom. He then yelled, "I need my food!" I reminded him that people do not get their food by sitting naked on a bathroom floor; that they wear clothes and eat in appropriate places. He then went back to sad-crying. I talked with him awhile while he removed the food from the washroom. After the food was all back in the kitchen, I reviewed with him the appropriate ways of having food then had him repeat them back to me. We then reviewed whether it was better to sit naked on a bathroom floor after sneaking food into the bathroom, or to bring up his clothes from the dryer, get dressed, and eat.