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.
Tuesday, October 12, 2010
Late Friday afternoon, Chef and I went out for a snack. We talked about Chef still needing to bring up his laundry from the laundry room. Chef said that he thought he couldn't do laundry except on Thursdays now because on Thursday I'd said he should easily be able to get his laundry done on Thursday. I reminded him that he still had from Thursday til Saturday at supper to do his laundry, even though his one load of clothes and one load of tea towels shouldn't take more than one evening, and that he needed to get his laundry done so he'd have clean clothes to wear and clean tea towels in the kitchen. Most of our conversation, however, was about food. When I talked with Chef about removing food from the kitchen or having it out where he could see it, he said it is too hard for him to see food because he always wants it. He said he wants food all the time and whenever he sees it or smells it or thinks about it he has to have it. If there is a bag of marshmellows on the table, that's all he thinks about. If there is a loaf of bread on the counter, that's all he thinks about. He just wants to eat all the time. We talked about when he was younger and how he felt about food then and whether or not it has changed at all. He said he still feels the same way; he wants food all the time, and it feels better when he eats it by himself because then he doesn't have to look at other food. He also said it feels better when he eats without anyone knowing because it feels more like it's just his then.
We talked about different foods that might work to have out all the time so it would be there without Chef having to go looking for a snack and seeing other food that he might want to sneak. I suggested having a bowl of popcorn on the table at all times, and whether Chef felt that might be helpful. He immediately said, yes! (I found this interesting, since the only difference between this plan and what is already "the norm" at home is that I am specifically telling Chef to that he can makes popcorn anytime he wants and that there should always be popcorn in the bowl. He already has access to popcorn anytime but rarely makes it.) I smiled and said that was great, and that we'd start right away - when we got home, we'd make a big bowl of popcorn and Chef could eat to his heart's content, even if that meant the entire bowl, and could make more whenever he wanted to make sure the bowl was always full. Chef did not look happy with this; he looked at me, his eyes were starting to redden a bit and water up. I asked what was the matter. Chef said, "You mean you're going to make me eat that whole bowl of popcorn?" I found this interesting (though I tried not to show it), since Chef has eaten so much more than a bowl of popcorn on many occasions, and assured Chef that no one was "making" him eat "that whole bowl of popcorn" but that it would always be available to him, he can eat as much as he wants whenever he wants, and he can fill it up as often as he wants. Chef responded, "Oh, ok" then returned to reading a newspaper on the table.
For brunch, Chef had eaten sausages, eggs, and panfried potatoes, then an apple. Two hours later, he ate a bowl of borscht. When we got home (about half an hour after eating the borscht), Chef immediately filled up the popcorn bowl and ate almost the entire bowl. About an hour later, he ate a very full plate of supper (liver, potatoes with gravy, beets). After supper, we spent close to two hours walking with a friend and her dogs. Chef dropped into bed soon afterwards.
Before supper on Friday, I told Chef that he and I had been invited out for a Thanksgiving weekend outing and told him where we'd be going (a place that Chef has always enjoyed). Chef responded, "Oh ok, I'll just stay at (the neighbour's) instead." "Really? Why?" "There will be too many people." "But you've always loved going there." "There's too many people though." Chef went over to ask the neighbour if he could stay there the next day but she wasn't home. I suggested to Chef that the neighbour already had a lot going on for the weekend, with two Thanksgiving family events. Chef responded, "Oh ok. I won't go there then."
Chef slept in til almost lunchtime again on Saturday, then decided he wanted to make brunch. I reminded him that he already had dishes he hadn't finished (had put away dirty dishes and left a few here and there over the past couple days) and that would be a better bet, and I'd make lunch. Chef's eyebrows went down and he looked at the floor. I debated. I don't usually ever give in to a grump, but I wasn't about to let this issue escalate to the point where we wouldn't be going for an outing, and knew that it would be yet another opportunity for Chef to experience that using time for something he wants when it could have been used for something he needed to do - well, I knew full well that part didn't really matter. I reminded him that he would still need to get the dishes done later (can't use cooking as a way of getting out of dishes for which he was previously responsible) but if he wanted to do brunch he could. He asked if he could make what he'd made yesterday. I told him it was his choice but we were being picked up in half an hour and he still wasn't washed or dressed (a whole other chapter), and that he still needed to bring up his laundry. Chef made sausages, eggs, and panfries. VERY nicely done. I'd decided to use those extra few minutes to do up some s'mores (rice crackers with marshmellows and chocolate melted in-between) for us to take along. Chef went down to the laundry room and pulled one outfit from the dryer and changed.
Chef seemed quite pleased, content, and happy with his day. He chatted in the car about what he was reading in his Guinness World Book of Records, seemed very relaxed throughout the outing, saw the "Rescue Inc" fellows with my friends while I wandered off and took some photos, did a lot of laughing and chatting at a party store, and read his books while we ate supper.
The plan for Sunday was for us to make a smaller version of a Thanksgiving dinner for the two of us. Chef again slept til almost noon and again wanted to make brunch. I reminded him again that it would be better if he just focussed on getting his dishes done from the week and I'd make brunch. He said he would do the dishes after brunch. Again, he made a terrific brunch of sausages, eggs, and panfries. Again, he puttered with dishes. I asked how the popcorn was coming along and did the bowl need filling? "I'll make some," Chef replied. The popcorn maker hadn't been running very long when Chef unplugged it. There was very little popcorn in the bowl. When I asked Chef what happened with the popcorn, he said that if he makes too much popcorn, it doesn't all go into the bowl and that bothers him. "What about turning the bowl? If you turn the bowl, the popcorn doesn't all pile up on one side." "I have to turn the bowl??" "Well, turning the bowl makes room for more popcorn to fall into the bowl." "Then do I have to do a whole scoop??" "We usually do a whole scoop for one bowl. That's what fills the bowl. If you want, you could do less and then the bowl just needs to be filled more often." "Would I have to fill it more often then?" "Well, I could easily do that or you could do that." "K, I'll do more." Chef looked somewhere between uncertain and displeased. I'll need to explore this more with him sometime. Chef then spent most of his time just eating popcorn. I reminded him that we needed the kitchen finished up so we could make our dinner and dessert. Chef slowed down. He kept singing, but slowed down. I'm not sure if it was the idea that he needed to get it done but hates chores so didn't want to do it, or whether it was that now he was thinking about food and couldn't focus on what he was doing, or whether he was still tuckered from the day before, or something else, but after I'd reminded him about us doing up the dinner and dessert, Chef seemed out of sorts. (It reminded me of when he was in Kindergarten and didn't want to go to school in the afternoon. I told him we could make a special picnic lunch then we'd go for a picnic before school once he was ready. He'd looked at me and told me that he wasn't getting ready and that he wasn't going to have a picnic and then I couldn't have a picnic either.) A cold supper from leftovers and whatnot in the fridge was the end result and Chef just relaxed in his room. I suggested he take popcorn up with him.
"I'm too tired."
"Too tired to put popcorn into a bag and carry it to your room?"
"*sigh* Ok, I'll take some."
The plan for Monday was for us to make a small version of Thanksgiving dinner just for the two of us. Monday was very similar to Sunday, except that we had farmers' sausage instead of breakfast sausage and that even after going slowly, Chef FINISHED the dishes! Yay! I haven't checked them, but am hoping for the best. He has one more night of his 2 weeks (14 days) of dish-duty that he'd taken on as an extra chore back in July (started earning in June, up to 14 days in July). He hasn't been doing any regular chores during that time aside from occasional bits of laundry. (Chef was very focussed on making potato pancakes for his lunches, but I'd asked him to slow down on the potatoes because he usually has 2 every time he eats them and he is focussing on those again right now instead of other carbs. There is always rice available (I found a great rice from India that has even higher nutritional value than other brown rices, and we've been using that for the past few months), and Chef generally will go to potatoes and potatoes and potatoes when preparing meals until I remind him that he needs to change it up sometime with rice. Chef used to do the same with rice until just a few weeks ago.) I did up herbed chicken with potatoes and mixed vegetables for supper. After supper, Chef put on a pot of rice and got out a frying pan to do up eggs for protein for his school lunches after I reminded him that rice and an apple and some carrots wasn't a complete lunch. I reminded Chef that one egg was enough for each lunch and to make sure he was doing at least a serving size of rice per lunch. Chef took out two cartons of eggs, but showed me that one carton only contained 4 eggs. I reminded him that he only needed 4 because there were only 4 lunch days in the week. (Months back, I had to really work with Chef to keep him from making himself 3-6 eggs everytime he cooked; eventually I discovered that if I wasn't in the kitchen or checking in occasionally while he was cooking, he would do up extra eggs to eat while he was cooking otherwise. I discovered this by the number of eggs out of the carton and the number of shells in the garbage, and started supporting the egg-cooking differently.Now, he knows that 2 eggs per day is more than enough eggs for one day and that 2 eggs for breakfast and lunch means 4 eggs a day and there are much better food options for better health) "Won't I need to do an extra in case I go somewhere?" "No, you've been having suppers at home when you go with R." (R is Chef's support worker. Chef used to take a supper along because they'd be gone from around 3:30 til 6:30 and Chef would be hunry; this year, R picks up Chef just after 3, Chef takes a snack along, and they're back around 6.)
Chef was taking a long time working with the eggs after putting the carton back into the fridge. I went over to the stove to find six eggs in the frying pan, another cracked into a small container, and another sitting on the counter. It was about 7:30 in the evening. I was tired. I told Chef we could finish up the lunches tomorrow, and suggested that he take some popcorn along with him and go upstairs for some downtime. He made a "I can't believe you're asking that of me" face and said, "I have to take popcorn upstairs?" I'm sure I looked surprised, and answered, "Well, we've talked about the popcorn." "I didn't think I was supposed to have food upstairs!" He sounded angry'ish, and I realized that I hadn't specifically talked with him about the popcorn-upstairs-at-night extension-idea of the popcorn plan, and just thought he'd take to it since he is always trying to sneak food into his room anyway - and he had taken some to his room without issue the night before. After a bit of word-juggling, Chef took his meds and went upstairs with popcorn. He was snoring shortly thereafter.