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.

Showing posts with label pdd. Show all posts
Showing posts with label pdd. Show all posts

Friday, June 17, 2011

Ah, Summer

Today is Chef's official last day of Grade 10.

It's also party day at school and a festival weekend where we live. Both of these could cause the next few days to go either way, but I think I remember Chef enjoying last years town festival so hopefully that and the school party will help in getting Chef past the upcoming exam week.

Chef has been quite quiet the last few days other than regular comments about his EA going to Africa, exam week coming up, and how cool all the video games are at school. He's been wearing his bathrobe inside-out all week, even with reminders, and it is already showing signs of wear and tear even though he's only been using it a week or two. Hygiene prompts have fallen on deaf ears, and the same outfit has been worn for a week. Chef seems more tired than usual and has been sneezing.

When I asked him what he was looking forward to most about summer holidays, he first shrugged and said he didn't know. When reminded to take some time to think about the question before answering, he paused then said, "The quiet." When I asked him for more details, he said he was looking forward to not having to hear noise all day at school.

With Chef's recent interest in reading books about Autism (after watching the Temple Grandin and RainMan movies), I'm hoping his interest will continue through summer. We have tons of books in our house (though I'm trying to minimize!), including many on the medieval era (another area of interest for Chef, though he's recently developed more of an interest in greek mythology), nature, trivial facts, and various diagnoses, etc. Chef's an avid reader, but he didn't do much reading at all last summer (possibly due to my offer to pay him money for any 2 or 3 page book reports he would do on books he'd read). I'm also hoping he'll go back to strumming/experimenting on the guitar - something he was willingly doing outside last year til neighbourhood kids asked him why he was doing that. We'll try some visual art again this summer, probably focusing on watercolours since he did a cool watercolour piece before Christmas. We also have our deck plants and a plot in the community garden, and Chef's usually-eagerly-embraced role is to look for good shots when we go on photography walks.

There is a family who has signed on to do once-a-month weekend respite, but nothing's happened with that since the first weekend Chef went there at the end of April, and we haven't heard from them nor have they returned calls from Chef's worker. My married daughter and her husband usually provide 4 hours of evening respite every other week, but they will be moving to another town in summer. Finding respite providers has always been a challenge. When I worked with Community Living, there were some staff who would have been great with/for Chef, but they weren't interested in taking on respite in addition to their shifts. I'm so very thankful for the respite funding that is in place - hopefully we'll be able to find providers to match.

Friday, June 10, 2011

Recent Lunch Mystery Solved - I Think!

June 10, 2011

This evening we were grocery shopping - one of the most consistently pleasant activities with Chef. I really enjoy grocery shopping with Chef. He eagerly engages in every aspect of grocery shopping and successfully completes any and all tasks associated with it. He also is quite chatty while he is checking nutritional labels and prices, asking me whether or not I like certain foods and comparing to his own likes and occasionally the likes of friends at school (yes, the word "friends" seems very accurate this year!), points out if he spots a problem in the store and easily interacts with staff as needed. As we returned to the parking lot, I asked him if he just didn't like the stew anymore and that's why he wasn't taking it for lunches (thinking that maybe he doesn't take lunches when the primary item is something I've made rather than something he's made, and thinking that maybe that's something I'll need to sort of keep an eye on as a possibility). I was wrong.

"No. I just don't like it frozen."
"You've eaten it frozen??"
"No. I meant. Um, I can't think of what I mean. I need it to be thawed up because it's not thawed up at lunchtime."
"I thought you use the microwave at school."
"No. Well I do, but the EA who's with me then doesn't like me using it because I take too long and she's the only EA in the room then and needs to be with the other kids so she doesn't like me using the microwave."
"Did she tell you that, or did you just think that she thinks that way because of something that happened?"
"No, she told me a long time ago so I try not to bring anything that needs the microwave."
"But the main part of your lunches have almost always been cooked food that needs to be microwaved. Why didn't you say something a long time ago when that EA told you that?"
"I didn't want to get her in trouble. Plus I understand, cuz it's alot of other kids too and she's the only EA."
"It has nothing to do with anyone getting in trouble. If you needed a change in the lunches you were bringing, then there needed to be a change."
"K. I wasn't sure what to do when she told me. Besides, I just get full on the fruit I've been bringing anyway, except (Chef's regular EA) says the rash I've sometimes been getting around my mouth might be from the mango I eat every day."

So, one mystery solved - maybe even two! And with that, goodnight!

Glasses at Last!

June 10, 2011

Chef took his glasses to school today!

He also brushed his teeth, and it seemed as though he would take his lunch - he opened the freezer, put his hand into the freezer, paused, was reminded he needed to be out for the bus, removed his (empty) hand, closed the freezer door, walked slowly over to the fruit baskets, picked up a mango and a grapefruit, picked up his glasses, went outside, and started doing some morning exercises. I'll need to explore the "hand reaching into the freezer, removing still-empty hand from freezer without lunch item" with him later. When I intially asked him about it this morning, he said he pulled out his hand because he heard me talking and knew he had to look at my eyes so he closed the freezer door so he could see me. Excellent listening skills recall! The only problem is that he was already going towards the fruit as he closed the freezer door. So maybe "listening skills" was the initial message in his brain but the thought of picking up the fruit interrupted? I asked if his hand couldn't have just picked up the lunch item while it was right there, or did he just not want to take that in his lunch. He said he didn't know.

Last night, after yet another evening of not doing dishes, I asked Chef to sit outside by me while I worked on some deck-gardening. We talked about goals. Chef said his goal is to go to school - excellent life goal! I started asking him questions about the various steps involved in going to school, and kept working backwards until we got back to taking care of one's body, taking care of responsibilities at home, etc. Chef said he didn't want to do jobs at home because he only wants a good job where he can earn lots of money. Of course, we reviewed the ol' "need to show success in small jobs before taking on big ones." I explained (again!) that not everyone likes doing every kind of job, especially when it comes to chores at home, but that they need doing regardless. Chef nodded and said that he doesn't want to do chores. I reminded him that he needed some way of paying back for items he's stolen/damaged. He looked surprised, as though he had forgotten that part. I asked him if he could think of other ways to earn money to repay for items in that category (one past idea was "to make a picture that you could buy from me then I'd give you some of the money" - and I'm pretty sure he seriously thought that was a workable plan! When I offered to do up a website where he could sell pictures, plus numerous other ideas offered to him for making money, he's never shown interest or a willingness to start on anything along those lines). We've explored this possibility before, but this time he just shook his head. I reminded him that the sooner he does some extra chores, the sooner he'd be caught up and the sooner he'd have more spending money. I also told him that I would love to support him in applying for part-time summer jobs this summer but he has to show a willingness to work at home first. He again said that he only gets a little money til then so he doesn't want to work.

If anyone has ideas in this area, feel free to share them! Right now, my approach is to continue to support him in learning through repetition. Incentives historically have not been beneficial (and generally "don't work" with children living with attachment disorder). In the meantime, if you plan on dropping by sometime this afternoon or this evening, bring your own clean cup ;-)

Someone reminded me of something the other day. When a child with attachment disorder is exhibiting some challenges that differ than usual or are of a higher degree, sometimes it's because there's been growth or that they are feeling a healthier attachment and that brings about a sense of fear/panic in them. I think sometimes we forget how scary it is for some kids when they're healing. Chef's grown alot this year. That's been evident in many areas.

When I used to work with adults with disabilities, we'd often talk about putting ourselves in the shoes of the adults for whom we provided support. One individual needed help in using the washroom and sometimes showed frustration in the washroom. Well, there may have been other reasons as well for the frustration, but I'd feel frustrated if I always needed help in that area every single time every single day. And every single day, Chef needs to figure out how to function in this world that he doesn't even understand in so many areas, and he has to do so with a brain that doesn't always function the way he needs it to function and with a perception that makes the world a very confusing place at times. For all these reasons, I believe Chef's doing very well.

But yes, he still needs to do the dishes ;-)

Thursday, June 9, 2011

Lunch at Last!

June 9, 2011

Morning:

Chef took his lunch to school! And an entire lunch at that - stew, a mango, a grapefruit. He also picked up a loaf of bread and had intended to take that as well then put it down when he was reminded to take only some of the loaf and to wrap it or put it in a container.

I asked Chef why he hadn't changed his shirt yet this week. "Because I didn't have a bath last night." The schoolbus was already waiting, so I didn't continue the conversation at that point but I'll be exploring that statement with Chef tonight to find out what he meant. Maybe Chef's understanding of putting on a clean shirt after having a bath means the ONLY time you put on a clean shirt is after having a bath. Hmmm.

Partway through the morning I received a text from Chef's EA asking about Chef's glasses because Chef had told his EA that I wouldn't let him have them. I have two thoughts on this - either he's doing his usual and blaming me for his actions and/or choices OR he's confusing the conversations regarding his old glasses, which are to now stay home (though he knows his new glasses are to be at school and he's had numerous reminders to take them there).

This weekend a friend has offered to take us along for a tour of various artists' studios. As often happens regarding such events, I'm torn. As Chef's Mom, I know this would be a beneficial opportunity for him and would create some positive memories in his life. But also as Chef's Mom, it sure would be nice to have some time alone with friends and just focus on myself for a change during an event...shockingly, even with the way Chef has behaved her lately, my neighbour has offered to take Chef for the day so I could have the day to myself. The catch is, that as relaxing as that sounds, I have a sense that I'd be waiting all day for the phonecall saying Chef had run off from her place or was causing problems for her, and that I'd be dealing with his anger all the next day. On the other hand, there is never a guarantee that Chef will go along somewhere. The only thing for certain right now is that I won't be telling Chef anything until Friday evening or possibly Saturday morning because there's always a strong risk that Chef will "act out" if he knows in advance that we're going somewhere new or there's a change in his general routine. Right now, though, I'm definitely leaning towards bringing him along on the studio tour and hoping that the memories from that day will make it all worthwhile.

I've been looking for volunteers for this summer; folks who would be willing to commit to spending at least one hour a week with Chef to take him to the park or swimming, etc. I've put a request on Facebook and have sent emails to the local colleges. My hope is that having different people doing different activities with him throughout the summer would help Chef continue to grow in his social skills and accept a broader variety of people in his life, as well as provide a bit of respite time. It would definitely be of benefit to students who are studying in certain fields, and volunteer opportunities are always good for community-building. We sure haven't had much success in finding individuals to work with Chef otherwise, but I'm hoping that an hour a week will be do-able for some folks who are community-minded.

Wednesday, June 8, 2011

Morning Brain

June 8, 2011

Today was Day #3 of Chef going to school without his lunch. He's back to waiting til the very last minute to get ready for the bus regardless of how much or how little time he has in the morning. He has lunch servings of one of his favourite stews frozen in the kitchen freezer and there are baskets of fruit on the table/counter. There are days when I've even removed the stew from the freezer and set it out with fruit for him to pick up and reminded him to take his lunch - and yet it is still sitting in the same place as he makes his mad dash out the door once the bus arrives. (There are many times that Chef does bring his lunch. In fact, there are many times that Chef prepares his own lunches AND brings them to school. Other times - well, not so much. Lately, the most consistency there's been with lunches going out the door and breakfast being eaten has been on mornings when I have put Chef's lunch and a portable breakfast item outside for Chef. And while that "works" as far as ensuring he's getting food into his belly, it doesn't work when it comes to supporting independence.) When I've asked what he's been eating for lunch, he says he hasn't been eating anything but his school staff has told me other times that when Chef doesn't bring his lunch, other kids share with him. This is the first year when that's been ok with a school - this is also the first year that Chef hasn't been sneaking food from other students' lunches regardless of whether or not he has his own lunch. This morning, Chef grabbed a mango and an orange on his way out the door.

During the past weekend, Chef found his new glasses that he'd misplaced shortly after receiving them. They look so nice on him! I reminded him to bring his broken glasses home from school on Monday so he could trade and have his broken glasses at home and his nice new ones at school. Chef did great - brought his old glasses home on Monday! His new glasses, however, continue to sit in the front hallway about 3-4 feet from the door. I asked him again this evening how things are going at school without glasses (terribly!) and reminded him again that he needs to bring his glasses to school.

We had an incredible storm last night, complete with lightning, hail, and very loud thunder. Chef and I were out chatting with a neighbour earlier this evening and she asked Chef if the storm had woken him. Chef shrugged and said he'd slept through it. I smiled and reminded Chef that it wasn't long ago when a storm like that would have had him screaming and panicking.

It's definitely nice to look back and see so much growth over the years.

Monday, May 30, 2011

Monday, May 30, 2011

Today is Monday.

Many of my friends dread Monday. Perhaps "dread" is too strong a word. Many of my friends don't look forward to the shift back to the workplace schedule and ongoing expectations.

For me, Monday is usually a day to breathe. Relax. Take in the peace and quiet.

As some of you know, Chef believes that he should not have to do chores or anything that he believes to be related to chores. This includes activities such as doing dishes, bathing, picking up items he drops on the floor in various rooms throughout the house, cleaning up urine in his room, cleaning up messes he makes throughout the house, dressing, etc., and sometimes even goes so far as including tossing food into his lunch container even if there are various food items out on the table in addition to the food in the fridge/cupboards, or making himself a sandwich.

It is a very, very rare occasion for Chef to do one of the above without prompting. It is equally as rare for Chef to do any of the above without numerous attempts at getting out of doing any of the above. Some of the challenges with which Chef lives do make such activities difficult for him to varying degrees - but the fact remains, he is capable of doing them, he gladly does similar activities if he deems them to be in the "fun" category (cooking, video games, running to get candy, making water balloons, making a bottle for his niece/playing with and picking up after his niece, etc. Chef seems to have the energy/ability for what he enjoys, and little to none for what he doesn't enjoy.

It used to be that Chef would come up with numerous attempts at avoiding even the start of any of the above - but for the most part that has changed. It is now more common for him to seem to be starting one of the above and then attempt to do whatever he thinks might get him out of continuing/completing the task at hand.

For example, Chef started this past Saturday with a tantrum because he didn't want to do the dishes. In all fairness, there were a lot of dirty dishes (so many, in fact, that by Saturday afternoon I'd told Chef I wouldn't be cooking due to the lack of clean dishes and that meals would be cold food until the dishes were done) but when Chef had chosen not to do the dishes before the weekend, he rediscovered that the dishes did not go anywhere nor did anyone else do his chore for him.

When Chef rediscovered that tantrums don't work, he hid the teatowels. When that didn't work (and he had pretty much worn himself out from having to turn to his exercise program to deal with his extra energy he had for whining, attitude, etc), he began washing the dishes. Slowly. And not actually washing/drying them. It took over an hour before he'd actually washed/dried two items. When he rediscovered that wasn't going to do much other than cause more problems in his day, he started washing the dishes. After 10 minutes of reasonable effort on his part, I knew Chef and I both needed a rest and I told him that he could take a break because he was now showing good attitude towards his work. I'd hoped that, even though there might be a few steps back after having a rest, the message that the antics involved in chore-avoidance weren't worthwhile would stick. Chef was reminded to have a bite to eat before having a rest since he'd only eaten two kiwis for breakfast and had whined when I reminded him he needed more to eat.

After having a rest, we went out for a walk for about half an hour. On the way home, I bought myself a small takeout for lunch and told Chef that I sure wasn't about to buy him lunch after the way he'd behaved and that he would need to make his lunch when we got home. Chef again chose to eat a bunch of fruit. This isn't new. Chef has gone through periods in the past when his focus is primarily on fruit, though it was interesting to see him focus on it on the weekend after he'd said it was too much work to put into his school lunches even though it's sitting in baskets on the table. As an aside, mayonnaise is a big focus for Chef right now - mostly while doing dishes or using the washroom. We went through two jars last month. He hasn't been going for the spices recently, and my daughter has kept a bottle of vanilla in the cupboard the last couple of weeks without incident.

Back to the dishes - to make a VERY long story short, it was late Sunday evening before Chef actually started putting in a reasonable effort at getting them done. I sure got a lot of music practice in this weekend :-) There was no participation in making lunches (and I don't make Chef's lunches for him if he hasn't participated in taking care of his responsibilities), no bath, and Chef hadn't eaten more than some fruit earlier in the day, (even with reminders that of what was available in the refrigerator and even though I'd put out meat and wraps by the fruit so he could make wraps for himself) stating that he was going to wait until I cooked supper. I reminded him that I still wouldn't be cooking due to the amount of dirty dishes and unavailable prep space. He made a face. I then reminded him that cooking would also create more dirty dishes. Chef relaxed his face and said "K" but still didn't eat. When I later told Chef it was bedtime, he put his head to the side, made a scowling face and a scoffing sound, and said "Well, can I at least have a piece of fruit?" I reminded him that he was supposed to eat earlier and had had opportunity to do so. "Well, I'm hungry NOW." I told him he could go out and have a seat on the deck. I brought him out a bowl of baby spinach. He stated he wasn't hungry and that he didn't like spinach. I reminded him that he's eaten spinach many times and has even chosen to make spinach salads and that his body could use the nutrients. "It's gross." I picked some up, put it in my mouth, chewed it, swallowed it, said "eat", and walked back into the house. Chef tossed the spinach over the deck and sat on the chair grumping and saying he was hungry. I came out, put more spinach into his bowl, and asked if he needed me to feed him. Chef scowled and ate. When he came inside, he thanked me and apologized for his behaviour on the weekend. We talked a little bit about choices and consequences and the importance of eating and the importance of talking/behaving appropriately and about time and donating weekends to trying to get out of a chore rather than taking care of responsibilities then enjoying the weekend. We talked about dignity and responsibility. We talked about switching chores to the mornings since he doesn't want to do them in the evenings and on weekends, and told him he could try that and see how that goes. This morning, I woke Chef twice but both times he went back to his room. When I woke him the third time, I reminded him that he needed to get up earlier today but was now later than usual. He said he had gone back to bed because the alarm hadn't gone off. I went and turned on the alarm, he was up a couple minutes later and working on getting the kitchen cleaned up. This morning, his job was to wipe the stove and get the cupboard under the sink back in shape from previous choices Chef had made regarding the garbage pail. He seemed to be in good spirits, until I reminded him that he didn't have much extra time this morning because he kept going back to bed. He grumpily wiped the stove then brought in the garbage pail (he'd taken the pail out to empty it then put it under a chair on the deck the other day when I told him it couldn't come back inside smelling like that after he'd decided not to put a bag inside, and there wasn't time for him to wash it at the time because we were on our way somewhere), put it under the sink, and closed the door. He was reminded it needed to be rinsed and a bag needed to be inside. He very slowly (and grumpily) opened the door and very slowly removed the pail and very slowly walked to the bathroom with it. Everything was in slow motion for the next while - until the bus arrived! Chef quickly ran down the hallway, grabbed his clothes, and ran out the door to the waiting bus.

Clothing: We've turned the tables. If Chef leaves an item on the floor, it goes to the thrift shop. Of course, I'm the only one who seems effected by that at this point but I'm hoping that maybe that will help motivate Chef to start taking care of his belonging and his home. It didn't "work" in the past, but trying again! At one point, I decided to see how long he would actually leave something on the floor and have to step over it/walk around it, etc. I didn't say anything about two items - one was a pair of his pants on the floor in the front hallway where he had to walk over/around them to go out the door, going up/down the stairs, and to get to closet where his clothes are. Another item was one of his hats which sat on the kitchen floor. A week later, both items were still there. If I prompt Chef to pick up an item, he will pick it up then he will usually stash it somewhere rather than putting it away "because it's easier than putting it away." In order for Chef to pick something up and put it away (clothing, paper that he drops, cleaning up a mess he's made, etc., well basically anything that requires effort) I usually need to provide a verbal prompt and then see the task through with a frustrated Chef.

Today is Monday. Relax. Revitalize.

Wednesday, November 3, 2010

That Good Ol' Swinging Pendulum

Wednesday, November 3, 2010

This morning, Chef independently got up when the alarm went off the first time, independently did 25(!) minutes of exercise, came downstairs and independently got out his breakfast(!) AND ate it(!), independently got his lunch items together and packed them into his lunchbox AND said he was going to make popcorn to bring along then made the popcorn(!), and only needed prompting during the last few minutes before it was time to leave because he wasn't yet washed or dressed for school.

Wow! This has been a rare and very appreciated morning.

As an aside, Chef asked the other day if people are reading my blogs and I told him that there are readers from a lot of different places. I told him someone from a place called Oman had read the blog, and that I had never heard of Oman and wasn't sure if I was remembering the name of the place correctly. "Oh yeah," Chef replied. "There's a place called Oman. It's on my map."

Thursday, October 21, 2010

A Lovely Time Was Had By All

October 21, 2010

We've had a very nice evening.

Chef came home from school, gave me a picture he'd coloured at school, accepted a hug from me, and went to his room for a rest.

When he got up, he threw his laundry into the washer, asked if he could make supper while he was waiting for teatowels that were in the washer, and cooked a lovely supper of pasta with fried ground turkey and fried onions with tomato sauce. After supper, Chef did the dishes (I haven't checked them yet, but Chef had worked quickly and without issue), made popcorn, cleaned the downstairs bathroom and the upstairs bathroom, finished his laundry, made his bed (bottom sheet, top sheet, blanket!) had a bath (first bath in weeks, though did have a shower on his last respite weekend) and changed into pyjamas (first time in two weeks). Chef visited with his baby niece while we watched a video together, then he brushed his teeth, said goodnight, and went to bed.

There were only a couple of prompts throughout the entire evening; twice, Chef came into the living room and was getting ready to relax for the evening and I asked if he was finished everything he needed to finish. Chef normally would only have one chore in the evening plus a weekend chore, but he hasn't really been doing any of his chores for weeks and he knows he needs to do them before having free time. After each of the two times when I asked him if he was finished everything he needed to finish, he took some time to think about it then independently continued on with what he needed to do without any further prompting.

There had been talk at one point about the possibility of going out to see a movie but that hadn't been til after Chef was already on a roll with his chores.

We've had a very nice evening.

Friday, October 1, 2010

Respite Weekend

Last night after supper, Chef agreed that he needed to get his laundry done so he didn't have to worry about it the rest of the weekend, and said he would ask his sister for permission to go into the basement (because she is home and he has to walk through her room to get to the laundry room) as soon as she was finished with what she was doing. I told him that in the meantime I needed to chat with him. Our neighbour had told me that the last time Chef was at her place he was loudly and repeatedly passing wind and laughing. I reminded Chef that that isn't ok in our home and certainly not ok to do in the neighbours' home either. I told him he could go up to his room to think about that while waiting for his sister. I called him about three minutes later. No response. I called him again a couple of minutes later. Nothing. His sister finished what she was doing. After chatting with her a bit, I quickly ran an errand. I glanced up at Chef's window from outside and noticed his light was off. When I got home and peeked into Chef's room, he was sound asleep. I'd planned to talk with him about the weekend but sure wasn't about to wake him up to do so.

The weekend is a music and culture weekend event. Chef has previously attended, though has always participated very passively. One time, he did agree to attend a workshop on his own while I attended one (he has known most of the musicians for quite a few years, so he feels fairly comfortable around most of them). He was the only one in his workshop, so he had an hour of individual music instruction. That was awesome! With me being a musician, Chef has had much exposure to the music community, has attended many group performances, and has performed a few times with our group as well (including one time when he played part of a tune as a solo at a public indoor market and one time when he was even on stage with us at the Concert Hall). And though he's chosen to no longer play any instruments for the time being, he definitely still benefits from being at events. However, given the way things were around camping, and the cultural event in August, and him (suddenly not!) attending the music retreat in July, and the fact that Chef has often said to our neighbour, "I didn't want to go anyway" regarding music events, I chose to do this weekend on my own. Sometimes I feel like 24/7 staff whose only time off is when Chef is asleep or at school or with a respite provider. So even with recognizing all the social benefits and feel-goods this event may have provided for Chef - sometimes, I just need a break.

This morning, Chef independently started his day again with 20 minutes of exercising. Awesome! This was followed by much rushing-around-but-not-really-doing-anything. As of this morning, Chef has now agreed that he will go back to eating breakfasts that I make, so we will re-start that next week. I'm glad he has come to the point of recognizing that benefit.

Unfortunately, Chef was out and waiting for the bus before there was a pause for me to talk with him about the weekend (for those of you unfamiliar with Chef's challenges, there have been many times when I've started preparing Chef for something different a few days or more before the event, only to have Chef be all over the map for the entire time leading up to the event - it's always tricky trying to find that balance). When I told him I'd be going away and that he'd be at the neighbour's - he cried! This completely caught me off-guard. When I told him I was going for a music weekend (thinking he'd say he didn't want to go anyway), he continued to cry and said that he wanted to come. I was stunned. There wasn't much time before the bus. I asked if he'd put in his laundry so he had free time on the weekend, and regretted asking that question as soon as it was out of my mouth - as though he were missing the weekend away with me because he didn't do his laundry. I hugged him and told him there would be other music weekends together and that I hoped he'd have a great weekend. He dried his face and walked to the bus.

Sunday, September 19, 2010

Turn-Around Day!!

Sunday, September 19, 2010

Today has been a turn-around day. I love turn-around days.

Chores were extremely dragged out (literally all afternoon puttering with dishwashing that was started yesterday and is still not complete; we truly do not have THAT many dishes!) BUT the stairs and the front entrance floor are clean and the "on strike" phase is over. Hooray!!

Chef planned and made his lunches for the week (homemade potato patties with onions,tofu,hot chillis; sliced cucumbers; rice crackers; apple), ate two snacks, and ate two meals! There were no inappropriate verbal expressions, no inappropriate physical communications, and no disrespecting of boundaries. There were a lot of "yes, Mom" responses to reminders of what was needed to be done, and there were independently-initiated, appropriate strategies used as well.

We also spent some time talking about tomorrow. Given the weekend we've had following the first week of school and the reports of Chef's choices while not being presently able to have the supports that work best for him, I believe it is in everyone's best interest that we take a one-day-at-a-time approach to Chef being at home for the time being until the school hears back from the division regarding the requested emergency funding for full support for Chef. I talked with Chef about it this evening and we've made some plans for tomorrow. (I also called his bus driver who told me that Chef had told him he only got up a couple minutes before the bus on Thursday which was why he was getting dressed on the front step when the bus arrived. I let the bus driver know that Chef has 50 minutes to get ready every morning (including last Thursday) and has the opportunity to earn extra time by using the 50 minutes appropriately. While on the phone with the driver, I informed Chef that the driver was telling me what Chef had told him. After the call, I talked with Chef again about the importance of honesty and about his goal of what type of person he wanted to be and how he wants people to think well of him. We then talked about tomorrow's plan.) He'd like to do some WWI research online, and I'll also direct him towards some food-related research along with a related activity. We'll take the camera along and do a fall nature walk. Chef also said he wants to get back into learning how to draw and paint. Very cool. I hope he isn't just saying that because he thinks I'd like to hear that - though that wouldn't be the worst thing in the world either.


Saturday, September 18, 2010

Pause for Station Identification

For those of you who are unfamiliar with Chef's day-to-day challenges, some of the diagnoses he carries are PDD-NOS(Autism), ADHD, Attachment Disorder, Developmental Coordination Disorder, and brain damage from birthmom's drug use. One doctor had also put Hypotonia on his chart; my son has problems digesting some foods. He is also extremely drawn to almost any food and is capable of ingesting huge amounts of food very quickly - he's been both hospitalized and had his stomach pumped due to food choices. He often makes choices that cause problems for him and then becomes frustrated when those choices don't work or cause other problems for him, then misdirects that frustration. Without constant and consistent support, he will usually make many bad choices and his resulting frustration escalates. He has difficulty with controlling impulses, consistently remembering and/or putting into action what he needs to do each day, learning from consquences, learning new routines, coping with crowds/noise, controlling anger/managing stress, etc., etc. For more information, please see http://www.minddisorders.com/Del-Fi/Executive-function.html.

Chef presents very well.  He's a handsome young man with gorgeous eyes. He has a very sweet, gentle, pleasant nature about him when he isn't living in the storm of his challenges. He now knows enough kids at school well enough to feel comfortable enough to participate well in class and joke around with other students and teachers. He also has started to greet people independently without verbal prompts, and knows that it doesn't work to wear pyjamas to school or to be naked outside. He has learned that it doesn't work to try to make friends by jumping onto older students' backs or latching himself onto their leg and refusing to let go. He still seems to believe that giving stuff to people is the best (read "quickest") road to friendship, and that no one should ever talk with him about anything that he might have taken or suspect him of lying. He often displays creativity in doing whatever he thinks might work to get out of doing any, but my son is capable of doing quite a few household chores. Yes, it took (and still takes) a LOT of brain-training! And he does a great job of doing his laundry independently when he is in good space. He is great with computers, and he's a fantastic cook! (More to follow...)
http://findthesimplethings.blogspot.com/2010/09/finding-balance.html

Friday, June 25, 2010

Present

I am pleased to say that, even through the stress of the lack of structure at the end of the school year and even through exams, my son has not chosen to relieve himself anywhere but in the washroom!! For some, I suppose that may sound crude or bizarre to report, but it is a great milestone in my son's life for which I am truly grateful!

And unless he visited some places on his adventure this morning, my son hasn't taken anything inappropriately at home or in the community (though school is a very different story, from what I understand from the resource teacher) for a number of weeks aside from a container of honey I'd left on the counter (he was very helpful in looking for it and was later very creative in his description of where he'd hidden it even though my daughter and I found it down in the storage room). Of course, I'm still very careful not to leave money around so he doesn't have to deal with the temptation of picking it up, and I still keep my bedroom door and my office door inaccessible for him, but there's still just such a different feel in our home with regards to not feeling quite as much vigilance is necessary.

He has had a couple of "meltdowns" during the past couple weeks, but I use the term loosely since the meltdowns simply (simply...ha!) involved a bit of mouthiness and being on-strike, meaning he just didn't do much else all evening other than try to start arguments, spitball his door and heating vent, and continually bang his feet on his carpet til he tired of it. Mind you, it lasted from the time he got home from school til the time he went to bed, so it was no party!! But compared to the all-out tantrums of yore over seemingly little things, this was a walk in the park. I'm so very proud of him that he went through what has historically been, and what seemed to still be, a high-anxiety time for him and that he did so without damaging anything and without running off to seek out sugar.

And (some of you who do know us might want to sit down for this one) my son is actually doing some chores and doing them without complaining! I know, some of you think the chore thing is just a teenage thing; but my son has never ever been agreeable to chores...at all....has had full-blown tantrums over them, etc..so the fact that I can now sit in the living room listening to him sing while he's doing dishes in the kitchen? Golden.
And he's come to a point where he understands that it doesn't work to not take care of his weekend responsibilities on the weekend. I'm not naive enough to think that my son is now going to always do his chores or do them without issue or take his weekend responsibilities seriously, but "a lot of the time" is definitely a nicer fit than "hardly ever and even then it's accompanied by tantrum."

My son has been reading a lot more this year. Presently, he's reading "Rabbit-Proof Fence." And when he heard a local pizza place was offering gluten-free pizza crust, his response was, "Mom, can they actually say it's gluten-free if it's in the same place as all the other crust?" He knows it's important to have protein, more vegetables than fruit, carbs, and calcium. He knows it's important to drink water throughout the day. Of course, he doesn't independently follow what he knows, but the information is in his head and at home he will make choices based on the information. He is a fantastic grocery-shopper, but that's not new ;-) And he has been independently attending a local walking club that gets together for a walk in the neighbourhood twice a week.

Clothing, hygiene (for himself and his belongings), and food continue to be the challenges he faces daily. It seems that his perfect life would involve him wearing the same outfit around the clock for days on end without washing or bathing, and eating lots of whatever he wanted but mostly at times that didn't constitute a "meal time" or having other people see him eat (he still seems to have a bit of a "I want everything to be secret" thing going to some degree). He still gets rid of clothes in a multitude of creative ways, but we seem to have had much fewer clothing restocks this year than other years. He is actually brushing his teeth much more often this year. That was a very difficult one for both of us because on days that he didn't brush, I brushed for him; it was not a party for either of us. He still doesn't seem to be able to handle much in his room. He will verbally say how he would like his room to be, but appears somewhat defeated when we talk about taking care of items. And when items are moved into his room, they do well (with daily room checks) for the first while but once they lose their novelty shinyness, they just don't seem to matter anymore.

Responsibility continues to be difficult for him but he's come along very nicely this year. He still lies, but not as much, and is sometimes quicker to the truth than he used to be. He's become more socially appropriate this year, and will often now spend time in the yard with other neighbourhood boys. And the neighbourhood boys are very ok with my son getting out his Rescue Hero action figures! Yes, he is technically too old for those now, but he didn't do a lot of playing when he was younger, and using action figures allows him to work out different scenarios and express himself in a way that would probably be very challenging for him otherwise.

He's also been doing some independent playing outside this year. That's been a difficulty for him all his life. This year, he's actually asked if he could go outside to play with his hackey-sac. It was amazing to hear him ask if he could play outside. I remember days when he couldn't handle being outside by himself, and even when he's spent some time outside on his own the past couple years it's been with hesitation and much looking at the window and coming to ask if I had called him. He's sure come a long way, baby!

My son is wonderful with his nieces, and he is wonderful with seniors. He doesn't understand the needs of babies and has often said he doesn't know what to say to them, but he loves spending time with them and makes eye contact with them, etc. And with seniors, he loves to play card games or board games, will ask if they would like some tea, etc. And when we're in a store, he'll often comment about something he thinks someone might like ("I think so-and-so would really like that scarf, Mom.")

Ok, enough blogging for tonight. We are off to volunteer at a fundraising event :-)

Great Places to Hide Stuff!

Disclaimers:
*For the purposes of this blog, "stuff" is generally defined as items not acquired by socially acceptable and/or appropriate means, OR items for which the intended use is not socially acceptable and/or appropriate (a container of mush hidden away for later spitball creation, for example)

*The following list is NOT intended to be seen by children who live with various "must stash" challenges. Actually, this list is not for children at all; it's more of a "sometimes ya just have to find ways to smile" for adults who live with and understand how it feels to find treasures in unexpected places
*This list is not exhaustive; and I have a sense it's not conclusive either

Beginner Level
-under bed/dresser/nightstand
-inside drawers
-under blankets/pillow

-behind doors/in the fold of bifold doors

Intermediate Level
-inside venting system (bedroom vents, bathroom vents)
-between baseboard and wall
-under bedroom rug when you remove the cover for the bedroom vent
-taped under the bottomside of drawers

-inside a hole created at the back of bedroom closet
-inside a hole created behind any piece of bedroom furniture
-in pockets of clothing hanging in closet

-if clothing doesn't have pockets, just tie a knot in sleeves/pantlegs
-inside mattress/quilted comforter/pillow/stuffed toys
-in light fixtures
-inside legs of keyboard stands, exercise bikes, closet organizers, etc
-behind posters/pictures on walls; make sure it's light and flat
-between books
-between the pages of books; encyclopedias are great for hiding stuff

Expert Level
-anywhere in the crotch or general genital area!

Pitstops

The first time my son used a visit to a store as part of an independent coping plan, he was in Grade 5 and had recently started a new medication. I'd heard a bit of noise in his room but nothing alarming. Then I heard sounds that just didn't seem quite right. When I got up and checked, my son was nowhere to be found, his bedroom window was open, and his screen was torn. When I checked outside, there were footprints under his window; all the same size. He was eventually found at the local convenience store. The clerk there said he had come in, scooped up an armful of candy bars and very nonchalantly headed for the door. The clerk had stopped him, took the candy from him, and told that if he did that again he wouldn't be allowed back. According to the store clerk I spoke with later in the day, this was not the first time this scenario had played out.

One day when my son was in Gr. 8, a friend of mine called to say she'd seen my son leaving a convenience store by his school during school hours. She was concerned that he was wandering on his own. When I called the school, they were surprised to hear that he had left the school grounds. When they connected up with him, however, they found his pockets were full of penny candy; his resource teacher guesstimated approx. $8-$10 worth. They were very surprised that he had slipped away and returned that quickly before they'd realized he was gone. When the teacher took my son to the store to return the candy, apparently the store clerk was also very surprised to see the amount of candy he'd been able to take without anyone realizing. (It reminded me of the time I once had a teacher tell me, "I couldn't believe it! He took the gum right out of my desk drawer while I was sitting right there!")

Another day in Gr. 8, I got a phonecall from the school saying my son was missing. His school staff were out looking for him, and I called some friends and went out looking for him. After visiting all his usual "pitstops" where he had historically gone to stock up on candy (hair salon, video shop, grocery store, convenience stores, etc) and not finding him, I called the police then decided to ask around at the local coffee shop. While at the coffee shop, the school called. They'd found him. He'd been curled up in a stairwell at the Jr. High. I met up with them to find my son looking very sleepy and not in good shape. Apparently another student on his bus had told him there were "really cool snow hills" at the local high school, so my son had run off from the jr. high to check them out. He said that while he was at the high school, some of the kids had pushed him down and that he felt sleepy so he had gone back to the jr high. He was later treated for frostbite on his leg from having/keeping snow in his boot throughout his adventure.

One beautiful Sunday morning at home last year (the same gr. 8 year), my son woke up and said, "I'll be right back, I'm just taking something" to the local thrift store. I checked what he was taking and said I'd see him in a bit then I went back to making breakfast. After awhile, I realized he'd usually be back already so I went to have a look. He was nowhere to be seen. I called a couple friends and the police, and we went out looking. He was eventually found crouched down between two buildings. There was what appeared to be chocolate around his mouth. He said he had "taken off" because he was hungry. I asked him if it wouldn't have been easier to just come home for breakfast or to just open the fridge and grab an apple or something to take with him when he went to the thrift shop. I later learned from a friend that he had gone to the video rental store and slipped out with candy, so I took him there to talk with the staff and make a repayment plan.

Back when my son was in the early years of grade school, he was home alone with my daughters while I was volunteering in another city. On my way home, I got a call from one of my daughters saying my son was missing. He'd thought it would be funny to hide on my daughters at one point and had sat very quietly in the back of a closet while his sisters and their friends looked for him and called him. By the time they'd found him, they were quite scared and upset, and had told him so; next thing they knew, he was gone. I called the police, and by the time I got home, they'd had a call from someone living a couple blocks from our place. A young boy had shown up at their house, barefoot and in pyjamas. He had asked if he could use their washroom and they'd let him in. After using their washroom, he'd asked if he could have a snack. They'd given him a granola bar. He'd asked for another. If I recall correctly, it was when he'd requested the third that the husband had told his wife to hold off. They contacted the local police, the police picked up my son and brought him home, and the couple and I connected by phone. The husband immediately said he knew something was up when he kept asking for more granola bars. I don't remember if the couple have fostered children or if the husband's family had fostered children, but he said something told him there was just something not ringing right with how my son was acting. At that point, my son had not yet been diagnosed with autism. His diagnoses at that time were attachment disorder, adhd, possibly schizoid personality disorder, developmental coordination disorder, and he was being assessed for possible prader-willi syndrome. He came home, appeared quite calm and quite unconcerned about the whole event except to tell me that he didn't like that his sisters "got mad" at him, and calmly went to bed.

Thursday, June 17, 2010

Stones

I had a phonecall from the school one day when my son was in Kindergarten. The call was to say that, while they understood that my son loved stones, he was removing too many from the playground.

There were days when my son would come home looking like the weight of the world was on him; literally. Every pocket would be filled with stones; pants pockets and jacket pockets would be drooping-full. If he had worn boots that day, they'd have stones in them. There were days when my son came shuffling home with his feet dragging the sides of his boots along the ground with the bottom of the boots facing out sideways because he'd filled the boots with stones. So we continued to work on having him wear shoes to and at school, which was no easy feat! Boots were the footwear of preference!

I gave my son a jar and told him he could fill the entire jar with stones, and he could fill the jar as often as he liked, but he could only have one jarful of stones at a time. For some reason, he followed that guideline until one day he said it was too hard to always fill up the jar with stones. The jar and the seeming need to gather stones dwindled away. At the time, I'd also started taking my son to buy special stones to collect. He was very taken with them in the store, spent much time looking at them and deciding which to choose, would hold the stone or the stone in its box all the way home; then would either leave the stone in the car or on the counter or lose it in short order and not seem at all concerned. Receiving special stones as gifts met with a similar response; seemingly quite please with receiving it, much time looking at the stone, holding it for awhile, then usually leaving it where he'd opened the gift and not seeming to be concerned with its whereabouts. (As an aside, this is still very common when my son receives gifts; Christmas, Easter, birthday, etc.) My son is now in his teens, and when we go into the bookshop where we used to buy his stones or when he sees similar stones, his usual comment is along the lines of, "I remember when I used to collect stones like that."