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.

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.

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.

Summer, 2010

The air is crisp with the promise of Autumn. Did someone famous already write that? I have no idea; I just know that the sky is clear, I've heard both ravens and crows today, and there is a crisp breeze nudging the branches of the evergreen tree outside my window.

School starts in two days. I'm still amazed that my son isn't damaging objects or himself in an attempt to make it all go away. At this very moment, he is doing one of his favourite activities in the world; cooking. He is singing and boiling eggs and looking forward to spending the rest of the afternoon learning how to do up different mayos/sauces. We might still go hiking later.

My mind has been reviewing the summer and comparing it to some of the "let's do" ideas we'd come up with before the summer holidays started. Camping? Check. Go-Karting? Was planned for the week we were in the city but was missed out on in exchange for sleeping by my teenaged son. Spending time by the river? See above. Picnics? We had two, and are planning to squeeze in more before the cold weather sets in. Birthday? Yes! My son helped prepare for and attended an at-home birthday party this year!

Summer, 2010
-Camping for a week with extended family
-Spent a week house-sitting and performing/volunteering at large cultural event in the city
-Some geocaching
-Apple-picking
-Attended our local Fringe festival's outdoor performances, an indoor venue, and a couple galleries
-Attended a local outdoor concert
-Time with new nieces/grandbabies
-Started collecting supplies for homemade Christmas gifts for our "no-buy Christmas"
-Cooking. Lots of cooking. See below.

One of our plans for the summer was to increase my son's food-prep repertoire. We succeeded.

Cooking/food-prep is an area we both enjoy. I love coming up with new ideas in the kitchen, and my son loves the hands-on experience of the actual creations.

This summer, we've - well, you can see for yourself! My food blog is at http://www.findthesimplefoods.blogspot.com/

Today we're aiming to work on homemade, flavoured mayos and exploring what else we can do with rice paper....

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.

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."

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...