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.

And Then What Happened?

Tuesday, November 2, 2010

We have had two fairly blissful evenings in our home.

Chef has been respectful, pleasant, and enjoyable. He's been smiling and independently interacting with me, his sister, and his niece. He's been independently and sporadically talking about his day. He's been doing his chores quickly and with positive attitude, and has left himself free time in the evenings! He also made supper last night, and prepared potatoes for tonight's supper.

Tonight we watched "The Soloist." I didn't realize there would be such a strong focus on mental illness. Chef and I had quite a few brief conversations during the movie, and will need to revisit some of them.

Mornings remain about the same when it comes to the actual "getting ready to leave" parts, but I have to say that I remain completely amazed that Chef starts his mornings by independently doing exercises. He also ate part of his breakfast again this morning (two mornings in a row!), and again took a better-sized lunch than he had been taking last week (again, two mornings in a row!), including food that I've prepared for him (which has frequently been a pretty big issue!)

For this I am truly thankful.

Friday, October 29, 2010

This morning I was thinking about the changes I've seen in Chef over the years; how it's really very amazing to consider how far he's come in his life. I was thinking about how he used to not tolerate praise and now he drinks it in like water in the desert. I remembered how hard he used to fight against getting ready for school because he just wanted to stay home with mom, and all the on-the-way-to-school events that have taken place while trying to get Chef to school over the years. Now he calmly and independently waits for his bus. I thought about how he always wanted to stay in his room if "new people" were in the house, and how bravely he has now ventured into all the "new" of high school. My mind went back to how looooong and difficult it was for Chef to learn any form of physical exercise, and how he now independently does 20 minutes of exercises every day plus uses exercises to help him find his focus or to deal with frustration. Chef isn't comfortable with loud noises, but he copes with them much better now, and no longer runs screaming into the house if there is a loud noise outside. And he is starting to occasionally discuss possible discomfort about an event beforehand. Chef used to be very clear about not wanting to have any disability or difficulty, but is now starting to appropriately communicate about and plan around his needs.

Last night there was a Halloween dance where I used to work. Chef's immediate response was that he didn't want to go because there would be too many people. I have taken Chef to these events for years, and he's even been up and smiling on the dance floor on a few occasions. At last year's Spring Social, Chef said he thought it might be too loud for him, but he agreed to come anyway and spent the evening sitting with other folks he knows (after being repeatedly encouraged by me so he isn't always just with me at a social event), up on the dance floor (after repeated encouragement from others who wanted to support Chef in participating), and volunteering with me in the drink booth. Last night he agreed to come anyway, and initially sat a bit of a distance from everything that was going on and focussed on his snack. Once everyone was finished eating, Chef asked if he could have thirds. I reminded him that chips (crisps) were a "sometimes" food and he'd already had two huge piles. Chef nodded, walked across the dance floor towards the chair where he'd been sitting, then stopped and sat down in a chair right by where people were dancing. At one point he came to me and said he didn't know what to say to a woman who was trying to communicate with him, so we talked about that a bit then I reminded him that he could dance or visit with other folks rather than just stand beside me. Chef nodded then went back to his chair across the room. He has been participating less and less at events, but when he "has" to come along he seems to still be finding ways to be ok with being there. There's been a change here; he used to come along with me to any event or outing and would participate with encouragement, then started to occasionally not get ready to leave or would do other things that would delay leaving. I noticed this about the time that I started nudging Chef to be a bit more independent when we were places where he'd frequently been. When we were going to our weekly music session regularly, for example, I started suggesting to Chef that he sit beside other folks he knew rather than sitting beside me and laying his head down on my lap, etc. Eventually, if it was a new or less familiar event and/or an event that held some sort of possible expectation for him and/or an event where I would be encouraging him to not be velcroed to me, he would act out after being at the event. Then there was a shift to Chef angrily refusing to go somewhere at the last minute. Very recently, he has started discussing concerns before events and has been open to discussing ways of coping with those concerns. It's still questionable as to how much notice to provide to Chef regarding events/outings. Two weeks in advance could mean two weeks of stressing/figuring out ways of not attending; one day or a few hours advance could mean one day or a few hours of the same stressing/figuring. There have been times when I haven't said anything until we're leaving and Chef asks where we're going. The latter has "worked" the best overall, but to me it feels disrespectful given that Chef's 15 years old. Chef says that he prefers knowing a few days ahead because he wants to know in advance, but acknowledges that it's easier for him if he doesn't know until it's time to leave.

"Where growth is greater than quandry, there is beauty."

"Morning After Respite" and "Food"

Chef came home from respite this morning to get his lunch about 15 minutes before his bus would arrive.

When he walked in the front door, he had some difficulty maneuvering around his "stuff" he's been piling for a few days in the front entrance - there were about 6 small items in total that were supposed to be for the outside garbage bin and a small plastic bag for the thrift shop. It was a small pile, but a pile nonetheless, and certainly didn't belong in the front entrance where it would cause problems for Chef using the door. Natural consequences.

When reminded (again!) that the front entrance would be easier to use once the pile is cleared up, Chef chose to clear it up! He did so in three parts; two trips to the bin, then down the lane to the thrift shop with the small bag. Just before he returned, the school division called to say his bus wouldn't be running today due to a medical emergency. I told them I'd work on figuring out transportation and if I couldn't then I'd just keep Chef home. I made a couple plan changes, and was phoning the school when my neighbour rang our doorbell. This was all happening within the first 15 minutes of Chef arriving home. Not fun for me; that much more difficult for Chef. Ah, Monday mornings.

I noticed Chef was wearing a dirty, wrinkled shirt when he came home, so I asked him to change it before heading off to school. He made a face and told me it was clean. I pointed out where it was dirty. This was not received well - our short morning together had been very busy thus far. I told Chef to take a bit of time in his room to just relax and find his focus.

A few minutes later, I called Chef down to get his lunch from the counter and go out to the deck. I'd put everything out on the counter (apple,carrots, peppers, rice/beef casserole), he just needed to pack the items into his lunchbag. Instead, Chef opened the fridge. I pointed out that there were lunch items on the counter for him and that his lunchbag was still in the living room where he'd left it last week. He said, "Ok" and kept looking in the fridge. I told him there wasn't time for anything else and that he needed to get his lunch and go out to the deck. With eyebrows down, he got his lunch items together and carried them out the door.

I've often talked with Chef about preparing "dessert" items together, such as cream puffs or rice krispie cake to take in his lunches with the idea that he would have something right in his lunch that would be immediately available for him when he feels like seeking carb-type foods otherwise. I still think this would be a very beneficial idea for Chef's lunches, though his responses to this have been varied - usually he just doesn't want to make items on the weekends, the ingredients often disappear before the items are made, or the items I make disappear en masse, leaving nothing for lunches. When Chef was in his younger grades (and prior to going gluten-free!), the lunches I packed for him were so large that the top of the lunch bag couldn't fold over. In addition, he also had access to snacks that I brought to school for him on a weekly basis. Chef still secretly and successfully sought out food otherwise - food belonging to other students, staff, the food collection box in the hallway at Christmas, etc., etc. At one point, Chef also had open access to a snack shelf in his classroom; I don't recall if he ever accessed it at all, but he still sought out food otherwise. Food remains a very challenging area for Chef when he does not have an adult with him.

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.

Pre-Adoption and Beyond

I adopted my son when he was 2 years old. His birthmom had been a drug user and street-worker. He was removed from her at birth, placed in foster care, returned to birthmom, then placed in 1 or 2 more foster homes before his adoption placement. The agency presented his adoption information at a meeting for a group of adoptive parents who were in the final stages of their acceptance process. The information presented was with regards to children for whom the agency had not been able to find forever-families for various reasons.

When I spent time with my son's pre-placement foster mom, she said that she kept his clothes in a room other than his bedroom. I never thought to ask her why. She also said that there weren't a lot of foods that he would eat aside from steak and potatoes and canned pasta. Foster Mom said he rarely cried when he hurt himself and, in fact, rarely cried at all. She also said that he loved going to the park but clung to her if other people were around, and that he loved putting on adults' shoes and tromping around the house, but hated wearing his own shoes and would throw them out the car window on occasion when they were driving places. I remember he broke a railing on the crib up in his room one time when Foster Mom and I were visiting downstairs. Another time, he grabbed a knife from the kitchen, ran through the living room, crawled under the dining room table, and put the knife towards an electrical outlet as though he were going to try to unscrew it. Needless to say, Foster Mom and I jumped in on that immediately with Foster Mom talking and distracting him while I crawled under the table, removed the knife, and was able to bring a smiling toddler out from under the table. He was a gorgeous child, and had the sweetest eyes and the sweetest smile.

My son spent a lot of his first few months after placement glued to me. I thought this was wonderful, that my adopted child wanted to be held/carried by me most of the time. He made it very clear, however, that any ideas I had with regards to playtime or activities were not acceptable to him. If I pulled out a puzzle to do with him, he shook his head and pushed it away. Any and all toys received the same response. I could, however, play with his fingers and toes so we counted his toes, counted his fingers, counted my fingers, pretended that toes and fingers each had their own sound, and bestowed many kisses on each of them.

He didn't cry in the mornings when he woke up; just sat in his crib until I came in to lift him out. Then one morning, I found a handful of empty banana peels in his crib. Another morning, I discovered one of my (previously-filled and fairly heavy!) crystal candy dishes in his crib; empty. One afternoon when we were out visiting, an aunt and I watched my son toddle over to the kitchen just after we had finished cleaning up from a wonderful meal. We commented on how cute he was and then we watched in horror and ran towards him as he lifted the lid of the garbage bin, scooped out a handful of coleslaw, and immediately put it into his mouth.

Over the years, there was much discovery of urine and feces throughout my son's room; urine on the floor, walls, and ceiling. There was urine on the window, out the window, and urine in the track of the window frame. And there was frequently urine in the closet; on the walls, on the floor, on the ceiling, in the corners, and yes, on the clothes. Feces was occasionally tucked behind furniture or inside my son's mattress but mostly it was found in the heating vent; daily.

Over the years, little piles of bits of food, wrappers, paper, q-tips, fabric, string, and indistinguishable balls of combined bits were often found behind furniture, under the bed, under sheets, and poked into holes that my son had made in his mattress. Behind his dresser, I once discovered a large hole that housed various items of clothing, an empty peanut butter jar, and a myriad of other bits that had been collected in short order and stashed in the newly-crafted hole. If there was a box of q-tips within his reach, the box would usually be emptied in one shot and the broken q-tip bits could often be found under his bed. My son said they were airplanes that had crashed.

Over the years, there have been many food issues. My son would often refuse to come to the table for meals, and wanted meals brought to his room. There have been many times when it seemed he was doing whatever he could possibly do to ensure he was not eating meals (being naked, refusing to come for meals, going in his room and not coming out, etc.), which would always be followed by him ranting about being hungry. At mealtimes when he did come to the table, he would usually be watching everyone else's plate while he ate from his own. His eating speed would increase if someone took another helping from a serving dish. My son didn't seem to have an understanding of when he was full, and he was eventually assessed for Prader-Willi. Test results were negative. He is capable of eating huge amounts of food without vomitting, though he then often ends up having abdominal pains and/or bowel difficulties later in the day/evening/night. And he has a mind-boggling ability to transport and hide food. He has inhaled a jar of peanut butter and washed it down with a bottle of pancake syrup quicker than you could say the word, "shudder". There have been many many unimagineable food combinations eaten by my son in huge amounts after eating a full meal and in the time it took me to take a quick washroom break. When my son was in Grade 2, he stated that he just wants to eat alone because when he eats with other people he always wants all the food everyone else has.

Over the years, there have been many clothing issues. My son has been naked on many occasions in our home and occasionally outside of our home. There were mornings where I had already dressed and redressed him a few times, carried him out to the front steps, then had quickly run inside to grab my keys and returned to the front door to find him undressed or in the process of undressing in the front yard. Clothing has been urinated across in the closet and in drawers ("Now I can't go to school because all my clothes have pee on them"), and occasionally torn, but mostly they have been stashed away down vents, tossed out windows, hidden behind toilets, hidden in the storage room, taken out with the trash, stuffed inside a ripped-open underside of a mattress or stuffed inside stuffed toys, or taken over to the local thrift store. Yes, we have tried many different types of clothing and fabrics. Pyjamas, on the other hand, were the clothing of choice for the first few years...but that's another chapter!

Well, my hands are telling me that's enough typing for today. This has been a very brief introduction, and will continue with other topics such as "stones" and "school" and "water" before fast-forwarding to the present update of where my son is at now and the successes and celebrations in his life.

For privacy reasons, I will only provide non-identifying information..but if you are alongside someone on a similar journey, my hope is that you will find hope and comfort and peace knowing that you and your family member or friend are not alone, and that there are many many joys and life gifts along the way...