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.

Friday, February 24, 2012

THE DAY OF THE PLAY

Monday was a holiday here. Tuesday was a snow day. Friday (today) there is no school.

On Wednesday, Chef's school had planned an outing to go see a play at a local college. Chef often talked about how he'd hardly had any field trips in high school and now would finally have one, and often reviewed field trips of days gone by. He gave me a permission slip to sign late last week but put it up on the top of the fridge and left it there once it was ready to go back to school. He was reminded on Monday night that he had to return it to school, but Tuesday was filled with snow rather than school so he took it back on Wednesday.

On Wednesday afternoon, Chef walked in after school and said hi. Our conversation then went something like this...
"Well hey! How was the play?"
"GooOOD (much anger tone and immediate anger'ish look). How was Mia and Ruth? (very nice tone and calm facial expression)"
"Wait a minute, I want to hear about your play. What did you think of it?" "I SAID IT WAS GOOD!"
"Oh. Ok. I'd love to hear more about it though. You haven't seen a play for a long time"
"I SLEPT THROUGH PART OF IT OK??"
(***HINT: An encouraged nap prior to further discussion would have been a GREAT idea at this point!)
"Ohhh, so you fell asleep. Do you remember anything about it before then?"
"I SAID I FELL ASLEEP!!"
"Oh. Yes, I heard that and am just wondering how your day went."
"I DIDN'T GO, OK!!!"
"You didn't go?"
"THAT'S WHAT I SAID! I WAS TOO TIRED SO I DIDN'T GO!"
"Oh, ok. So what did you do today then?"
"I SAID I WAS TIRED SO I FELL ASLEEP! AND I HAD TO WRITE EXAMS!"
(***Ok Mom, take the hint and drop the conversation for now...but noooo, my brain was stuck on "what was Chef doing if he wasn't at the play with his school")
"No one would have made you write exams on a day when a play is planned though."
"No but I knew I still had some so I WANTED to get the finished."
"Oh, ok. So you brought the money home then that was for the play?"
"No, it's in my locker. I'll bring it tomorrow (very grumpily)."

Chef slept. And slept. And slept. When he got up, he lied and lied and lied over ridiculously little things, grumped all over the place, and spent very much time in the washroom. By 6:30, he was in his room reading for the rest of the evening. He continued with numerous washroom trips through the evening and during the night which included much moaning and groaning and saying things such as, "it won't come out" and "it's stuck" and "it must be from the celery and hummus (in his lunch)" Chef has digestion problems. This is one of the indicators that he's ingested far over the top of what he can handle and I debated whether or not to take him to emerg but the night trips to the toilet seemed less troublesome than the evening ones had been.

Chef was in foul space the next morning (Thursday) and didn't change out of the clothes he'd worn to bed and didn't take his lunch when he stormed out of the house at 8am, but by 8:10 he was sort of doing sort of some exercises but still yelled at me the two times I asked if he was coming in to get ready. Thankfully, by 8:20ish he was in full exercise mode. When the bus pulled up he walked towards the bus so I opened the door, held out his lunch, and reminded him he would need his lunch or he'd be hungry. Chef kept walking. I debated the wisdom of commenting further but did anyway to see if he would take the lunch. It took four times before he turned around and came back for it.

When Chef got home after school, he did his usual check before coming inside to show he hadn't brought anything home that didn't belong here (stolen items - easier to check before he comes in than to get the phonecalls or later discover items and have a long mishmashed experience while we all try to figure out what happened).
"Hey, I noticed the money from the play wasn't in your pockets. Is it in your lunchkit then?" (We have a money program at home for Josh where he earns money. If he has debts to pay from stealing or purposely damaging something, the bulk of earned money goes towards repaying debts first - the longer the debt, the larger the percentage. Chef's actually coming along very nicely in this area. Lately I've also introduced the concept of fines for using my time inappropriately - this has not gone over well with Chef.)
"I SPENT YOUR @#%(* MONEY!!"
"Oh. On what?"
"NONE OF YOUR #@(*& BUSINESS!"
"Being disrespectful to someone else because you created a problem for yourself is not ok. Answer the question."
"NO!!"
I stepped away from the window and went about my business. Chef stormed in through the door - "AND I'M NOT DOING ANY STUPID EXERCISES!! I DID SOME THIS MORNING!!"
"You're bringing disrespect into this home and that's not ok. Out you go til you can be appropriate."

The next while our front and back yards were filled with yelling, swearing, banging the doors, repeated door slams (at which point the door was then locked), repeated doorbell ringing, etc., etc. I continued to go about my business inside and Chef turned things around on his own after about 25-30 minutes or so. He exercised for about 20 minutes, intermittenly responding respectfully when I debriefed with him*, then he went over to the neighbour's for half an hour before spending the evening with his sister while I attended a nice coffee-break evening with other parents whose children also live with autism.

*Chef said that he wanted to keep the $3 for treats instead of go to the play. His resource teacher was away from school and his EA went to the play. Chef said he had no one supporting him through the day. He said he was on his own for the day unless he went somewhere where there was an EA. He bought candy from the canteen. That clears up the digestion problem he'd had plus the anger issues. The remaining mystery is whether or not it's true that he had no EA with him and if so, why not. And how was he able to make a purchase from the canteen or cafeteria when last year's resource teacher put a plan was put in place last year already with the canteen and the cafeteria so they would never sell to Chef unless he had his regular EA with him who'd had the ok from home to ensure Chef wasn't ingesting food that might send him back to the hospital again and to ensure he wasn't spending stolen or unearned money.

So, lesson learned for Chef? Unlikely. Without a knowledgeable, appropriately-supportive adult with him, Chef has always made poor choices when it comes to money regardless of how sick he has made himself other times. With a knowledgeable, appropriately-supportive adult with him, Chef might attempt to lie about where he got the money or about what does or doesn't work for his body, but if he is with someone he respects and he knows they know what works and doesn't work, he usually wants to show that he can make a good choice - just like removing the sugary foods from the food bank bag that he would have otherwise eaten if no one else were there.

Food Bank Days

I've recently noticed that after our last three trips to the food bank, Chef acts up at home. This past time, Chef was very, very chatty about and very, very visually-focused on the food in the room at the food bank. He was quiet on the drive home with a friend of mine, then became very very chatty about the food bank food again once we were home and were unpacking the food, and continued to be very very chatty about it while making supper he offered to make. The high degree of chattiness was concerning since that's usually an indicator that Chef is pretty wound up inside, but all seemed fine - until Chef was reminded that he needed to wipe out the sink before washing dishes. The rest of the evening was not fun at all.

Going to the food bank seems to be an enjoyable outing for Chef when it comes to choosing food items, discovering what's in our pre-packed bag, seeing all the many many bread items and being told he can choose 3 or 4, seeing the large packages of cheese (Chef's been back on dairy now for over a year though in small amounts every day and very small amounts at a time due to digestive/"behavioural" experiences), and exploring/choosing items from the table by the door. He seems to enjoy seeing the now-familiar volunteers and definitely seems to enjoy the comments they make about him growing or how good it is that he removes sugary foods from our prepacked bag (which is interesting to watch, especially when knowing that if Chef were there on his own and no one knew him, he'd been inhaling all those sugary foods before he even left the food bank ;-) ), etc.

And while Chef isn't "bouncing off the walls" at the food bank, it's clear to those who know him well that it's almost like Christmas for him - there's a plethora of food.

There's also usually a large crowd and fluorescent lights and often a long wait in line that Chef has to deal with (standing for that length of time is difficult for Chef and that much moreso while waiting outside on winter days, other folks might accidentally nudge him or be physically closer than Chef's comfort level allows, etc). Typically what happens is that once he has a visual on food items, that becomes his focus and he'll talk about food generally from that point until we are on our way home - actually he'll quite often still continue talking all the way home and at home about the food.

Grocery shopping has always been one of Chef's favourite outings, and it's something that we've very much enjoyed together. I used to take him to a variety of different shops to buy various ethnic foods, taught him much over the years about nutritional value and how to read the labels, etc., etc. and Chef happily and peacefully drank it all in. I also worked with him for years before he stopped sneaking food off shelves and trying to eat it, and I learned fairly early on not to put grocery bags into the back seat with Chef if I wanted the items they contained to still be there when we got home.

Back to the present, my theory is that he's pretty excited and wound up inside on food bank days, and once we are home and have unpacked and eaten supper, he crashes - similar to a young child at Christmas who is overspent by the excitement of the day and the let-down when it's over.

The other piece is that, through the years, Chef has always wanted all the food immediately after grocery shopping and it generally takes a couple of days before his focus shifts away from that. Food bank days are no different.

The one difference is that Chef doesn't typically act up after grocery shopping yet it's definitely on my radar that "acting up" has happened the last three food bank days. We walk to both the grocery store and the food bank and we walk home from both. There are fluorescent lights and groups of people at both, though foodbank is much smaller and much more enclosed, and requires Chef to hold it together for quite awhile while waiting in a line.

Food bank has the added piece of mystery with a prepacked bag, which is a huge thing for Chef and he often wants to explore the contents of the bag the second it's in his hands, so that will likely add excitement and/or anxiety.

We still remain mostly gluten-free at home so Chef has the greatest dietary benefit possible but we' ve started having some regular bread on weekends when he doesn't need quite as much focus/brainpower/etc as schooldays require, and Chef usually has a bun or two from the food bank once we get home. For as long as I've known him, Chef has been a carbaholic. But when we're grocery shopping, if we pick up bread it primarily involves walking to where the bread is and picking up what we're looking for. At the food bank, there's the excitement/anxiety possibility piece with bread as well because the selection is always different, there's a jumbled myriad of various items on each shelf, and there may or may not be something Chef may have had in mind - it's not nearly as cut and dry as at the grocery store.

The bottom line is that we'll be doing some preplanning now around coping and appropriate behaviour at home for food bank days.