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.

Thursday, March 22, 2012

There's often a fine balance between responding and hoping for a moment of connection and learning, and not responding. Sometimes we as humans mess up that balance and other times everything just lines up beautifully and the sun shines and the birds sing and the flowers bloom and...well, sometimes we stumble into those moments and hope that the seeming lack of negativity from the other person can be accurately translated as a moment of connection or some degree of understanding.

The past two mornings, Chef has slowly come downstairs 20 minutes later than he's needed to in order to have a successful morning.

When reminded that he was running late and needed to quickly get his list (with his morning routine on it because he has difficulties with organizing/remembering and doesn't want me reminding him of anything), Chef's response both mornings has been to tell me that he's late because I took his clock.

Chef continues to be guided towards responsibility. Sometimes a topic requires a lot of reviewing for the responsibility piece to start to settle in Chef's mind. The past two mornings, the clock has been one such topic.

Part A: Chef's been given a few clocks over the years, including two Thomas the Train alarm clocks, a travel alarm clock, a clock to wind, etc. Each clock has met its demise with the exception of one clock Chef received from my grandmother. In addition to the sentimental attachment, this particular clock also sings out various bird calls on the hour. To make a long story short, Chef seemed to find the bird calls to be very, very enjoyable regardless of the time of day or night - and for now, the clock resides in Chef's room without its batteries.

For years, Chef has been getting up in the mornings without the use of a clock. On some mornings when he's gotten up later, he's angrily told me he'd slept in because he doesn't have a clock and was reminded that he could gladly replace the many alarm clocks he's been given by earning money and buying one for himself. Finally the day arrived when Chef had money (gift money) to buy an alarm clock at the thrift shop. I'd suggested he choose one that uses batteries or could be wound, with the added bit that I'd had a few late mornings over the years from "plug-in" alarm clocks not going off because the power had gone off during the night, and that I only use a battery-powered alarm clock now. Chef chose an electric clock.

Part B: Chef has needed frequent reminders over the years to close doors - front door, back door, refrigerator door, freezer door, cupboard doors. Last winter he left outside doors open so often that I warned him that he would soon need to start paying for the heat he wastes. Being an environmentally-aware family, I've also often talked with him about the importance of appreciating resources and not wasting what we have. Chef was warned this past January that I would start keeping track of his financial responsibilities for wasted resources in February. I knew, however, that his would mean little if anything to a young man who doesn't really have a grasp of what value means so the first time I pointed to the door he'd left open and announced that would cost him 50 cents and would cost him more if he didn't close it immediately, I also attached a "real value for Chef" idea to the amount. "This is costing you 50 cents or half a bag of potato chips or the price of a book from the thrift shop." Chef slowly came over and closed the door with the response, "Some books are only 25 cents there."

Fast forward to the recent morning when we'd had to air out the house because of body odour. After all was said and done, I eventually let Chef know that he'd have no extra electricity in his room for awhile because of all the heat that had been wasted through the open windows. The only electrical item in Chef's room (other than his ceiling light) was the clock.

Part A and Part B Together = This Morning:
"You took my clock, that's why I'm late."
"Responsible communicating, please. What word should your sentence start with?"
"I? Um, I'm late because you took my clock."
"That doesn't work."
"(sigh - but no growling/yelling/swearing/tantrumming!) I don't have my clock, that's why I'm late."
"Here are some things you need to think about - you've gotten up plenty of mornings in your life without a clock, you've gotten up every morning the last few days without a clock until yesterday morning, and you've also gotten up around your usual time to use the washroom the past two mornings..."
"Yes, but.."
" addition, you need to think about WHY your clock is no longer in your room..."
"Well, that's..."
"...and also think about how many days you could have earned money to buy a different clock and haven't done so. Now, no one asked why you're late and that's not up for discussion. Bottom line - you have things you need to do quickly because you're late."

And with that, Chef slowly moved into his morning routine - which again included 20 minutes of jumping jacks even though we'd discussed that again yesterday. When he came in from exercising this morning, I said that I'd noticed he was still doing jumping jacks. "That's the one exercise I can do really fast," was the response.

When the school bus arrived, Chef was in the bathtub.
"Your bus is here. (Pause) Did you hear? Your bus is here."
"I heard!"
Chef slowly and grumpily came down the stairs trying to get his shirt on over his wet shoulders.
"You need to be moving quickly. Your bus shouldn't have to wait for you."
"Well, you made me take a bath." (The last two nights we've again been discussing hygiene and how sleeping in a bedroom that doesn't smell very good then putting on the same outfit as days before makes for a very unpleasant smell for others plus germs on Chef's body - quick morning baths would be good until Chef has clean clothes. Yesterday Chef opted out but exercised and bathed on his own this morning!)
I opened the front door, then asked Chef if he was going out to the bus or if I should wave to the driver to continue on without him.
"I'm going! I'm going! I just need to get dressed and get my lunch and shoes!"
Chef did up his pants by the front door and, with his shirt hanging around his neck, he tried to wriggle his feet into his shoes without opening them then huffed and bent down to put on his shoes then started down the hallway away from the front door, half-dressed and wearing one shoe.
"What are you doing?"
Chef stopped and adjusted his shoe with the all-too-common appearance of lack of awareness of time or sense of urgency
"The bus shouldn't have to wait for you."
Chef huffed then started walking slowly down the hall towards the kitchen.
"Moving quickly! Bus is waiting!"
And with that, Chef turned around grumpily and jogged to the door, slid his foot into his other shoe and went out to the bus, putting on his shirt on the way.

Tuesday, March 20, 2012

Chores! Chef did chores!

And not just his one daily chore (presently dishes/cleaning up the kitchen), but last week's weekly chores (bathrooms/hallways) were also started and completed this evening. In addition, the total chore time was less than an hour AND Chef moved his lunch from the freezer to the refrigerator and made sure it was ready for tomorrow morning. He also boiled an egg for himself for breakfast. I asked Chef how he felt about having taken care of all of that tonight - "Good. And I know I'll have more time in the morning now." Excellent!

One of Chef's support team was working with Chef today on the 5-Point Scale ( Following are my recollection (obviously not verbatim) of some of our general conversation bits from this evening:

"Hey, how did your scale go today?"
"Good. I had a lot more 1's and 2's than last time."
"Excellent. So what sorts of things are 1's and 2's now?"
"Brushing my teeth, because it doesn't bother me as much anymore."
"Oh that's interesting. What do you think made a difference?"
"I don't know. I guess I just kept doing it lots of times and now it doesn't bother me."

"So what were some of the things that were 5's?"
"People talking to me."
"No, but I don't like people telling me what to do."
"Which people?"
"Anyone. I don't like anyone telling me what to do."
"Who are the people that are telling you what to do though?"
"Kids at school."
"Older kids? Sometimes that happens at schools."
"Sometimes younger kids too."
"You have quite a few kids at school telling you what to do?"
"Well not lots but just random kids. Some are older, some are younger."
"Ah. Anyone other than kids at school?"
"M (our neighbour's daughter)"
"She tells you what to do?"
"Yeah. The other day she told me to wash my hands again when I had just washed them. And she tells me other stuff I'm supposed to do."
"That's interesting. You've never told me about that before. Who else tells you what to do?"
"Teachers and EA's"
"You have a bunch of teachers and EA's telling you what to do?"
"Do you mean when they're teaching you or trying to help you with something?"
"Well I don't like when they tell me the same thing 50 times."
"Oh. Why are they telling you the same thing 50 times?"
"I don't know."
"Are there times when they might be getting the message that they need to say the same thing 50 times?"
"Well I didn't mean 50 times. I was exaggerating. I just don't want them to talk so much."
"Even if they're talking because they're teaching and guiding you?"
"I don't know."

"So what else was on your 5's list?"
"I don't know. I didn't have very many there. Boredom I think was a 5."
"When do you feel boredom?"
"When I'm sent to my room or have to stay in there or when I do a video game too long or do anything for too long."
"Oh. So when do you get sent to your room?"
"When I break rules."
"Hmm, and what would work better so you wouldn't have to be bored in your room?"
"Follow rules?"
"Yeah, that would be a good choice. When are other times that you're in your room and bored?"
"When I don't have clothes to wear or I'm not doing chores."
"Ohh, so what would work better then instead of being bored in your room?"
"Do my chores."
"Another good choice. So it sounds like a lot of the boredom in your room would be different if you'd make good choices."
"Y'know, a lot of times it feels to me as though you try to get sent to your room so you can just sleep."
"That's cuz I'm tired lots."

"I think I put exercise as a 5 too."
"Oh, why is that?"
"Because it hurts my muscles."
"Your doctor and I have talked to you about how it's not good to do so many jumping jacks but you keep doing them. And when I remind you how to do them with less stress on your muscles, the message I get from you is that you're angry with me for reminding you."
"I can't do any other exercises. I can go longer on jumping jacks without my muscles hurting."
"So they don't hurt when you do jumping jacks but they hurt when you do other exercises?"
"Well they hurt but it takes longer before they hurt."
"Ok. Why do you not want to be reminded of how to do them with less stress on your muscles?"
"I don't know. I don't want you telling me."
"Is it more that you don't want to do them, or you just don't like being reminded? When you were younger you didn't want to exercise or get dressed or wash, etc., and we kept working on all those things and we both eventually noticed a difference for you when you exercised."
"I can't exercise. It's too hard for me."
"Do you remember our conversations about what's good for the body? And that your body needs some training so it will work better for you? And how going overboard with jumping jacks is not a good idea?"
"Yeah, but I can't exercise. It's too hard."
"I'm thinking it would be good to go back to the idea of doing different exercises like some jumping, some balancing, some running, and other stuff in smaller bits instead of one big chunk of jumping jacks."
"I don't know. Exercise is too hard."

So tonight Chef did chores. No whining, no arguing, no tantrum, no grumping, no huffing, no delaying responsibilities. In addition, he also had a very full conversation about things he typically wouldn't want to discuss. What a wonderful evening!

Wednesday, March 14, 2012

We seem to be coming to the end of a nearly three-week spiral. We haven't had a long haul like this one for awhile - I don't recall the last one that's been to this extent where Chef does little more than sleep/rest during evenings and weekends (and attempt to argue/tantrum at any suggestion to do otherwise) for such a long period of time, regardless of whether the activity possibilities included chores/responsibilities, videos, playing with his nieces, or outings, etc. Today will be Chef's second day home from school this week, aside from the day off all students had on Monday. Yesterday evening was the first sign that Chef was ready to get back on board with participating in day-to-day living without attempting to struggle with me about it, though he seemed to continue to have difficulty focussing, and his energy level continued to appear low and he tried a couple of times to come up with reasons to go back to his room.

On Monday, Chef's poor hygiene had caught up with him to the point that my daughter and I woke up to realize the upper level of our house smelled horribly like body odour and a hint of it was starting to hang in the air on the main level. Chef was asked to open his window, but after receiving no response to that nor to my knocking I covered my mouth and nose and opened his bedroom door. Chef was in bed and rose up on one arm with a very grumpy look on his face. I opened his window, told Chef the house smelled from his body odour and he needed to take a bath immediately, and walked quickly towards the door. Chef yelled that he didn't smell bad and got up and closed the window. I went over and walked Chef to the other side of the room and told him "the whole freaking house smells, son, and you need to stay away from the window and you need to take a bath immediately." I re-opened the window and left the room gagging. Chef escalated. I opened windows upstairs and downstairs while Chef's yelling and whining grew louder. After 20 minutes, I told him he'd used lots of time for that already and it was time for him to move on with his day or take the noise outside. He took it outside and repeatedly yelled, "I don't stink, fuckface!" Fast-forwarding to just over an hour later, Chef and I debriefed. We retraced choices that had lead up to the smell of the morning, and Chef agreed (again) that it would have been easier to wash everday and wear clean clothes.

About three weeks ago, before Chef had run out of clean clothes, he'd worn the same outfit for 10 days in a row. He's now run out of clean clothes days ago and states he doesn't know where the rest of his clothes are. He was reminded that he's often left clothing on hallway floors, outside, etc., and those are donated to the thrift shop. He didn't argue that, but said he thought he had others but he doesn't remember where they are. We discussed again the importance of clean clothes being in the closet and dirty clothes in the hamper - that makes life simpler when it comes to keeping track of clothes and having clothing easily accessible. Last night he said he plans on doing his laundry today. He'd also said he was going to do it last Thursday, Friday, Monday, and yesterday, so hopefully today's the day.