Food

How to best support Chef's food challenges has been one of the most difficult aspects of raising Chef.

Here's what we know:

-According to pre-placement information, Chef experienced prenatal drug exposure and early life neglect, had more than one foster placement in addition to his few months with birthmom, and that he'd come into his last foster home having had only juice or water rather than formula the first few months of his life
-In his foster home prior to placement, Chef would not accept many foods other than meat and potatoes and alpha-getti, though his foster mom said he would eat an apple if they carved a face into it. She once showed me how Chef responded to her offering of food. She put him in his highchair, then opened the fridge, took out an item, asked Chef if he wanted that or liked it or made comments similar to, "Mmmm, doesn't this look good" etc. With every item, Chef would grin and shake his head. Foster mom would then place the item on the counter and remove another item from the fridge and present it to Chef with the same result. Chef shook off every item she offered in this manner until she took alpha-getti from the fridge, and that's what Chef accepted.
-Chef has stated that it's difficult to be around food because he wants it all.
-Chef has stated that he prefers to be by himself in general, and prefers to eat by himself
-Chef says when he eats by himself the food feels more like just his, and he doesn't have to see other people
-Food-sneaking has happened any time of the day or night, even right after a meal
-Schools selling chocolates for fundraisers? Entire case between the time he'd receive it from his teacher during the day and the time he got on the bus; though in grade 8 or 9 (schools were no longer giving Chef any chocolates to sell), he did purchase some boxes and shared them with other students. Unfortunately it wasn't with his own money.
-My grandmother and I once wanted to see if Chef really would keep eating if there was unlimited food available to him. He was 3 years old at the time. We took him to a restaurant after he'd eaten lunch one day and ordered a "finger platter" that was listed as being large enough for 2-4 people to share. My grandmother and I ate the chicken wings and battered shrimp, but left all the rest (numerous raw vegetables, battered zucchini sticks, etc.) My son ate them all except for a few celery sticks that were still on the otherwise-empty platter as my son slowly laid down on the bench seat and closed his eyes, raw veggies in each hand. That's when we knew that this was more than just appetite.
-Chef's food-sneaking has usually not involved a "regular" amount of food; it's usually a large amount of food and multiple food items (an entire box of cereal and an entire loaf of bread and a bag of apples; an entire loaf of bread and a bottle of salad dressing and a bottle of mustard; a bottle of salad dressing and a box of cereal and various other items, etc., etc.)
-It took many years and many reminders/prompts before Chef would get himself a drink other than apple juice, or water from the bathroom tap (though he says he doesn't drink water otherwise because he doesn't like water). He used to drink milk on occasion, before being dairy-free and after as well, but rarely does anymore. He is now 15 and still will rarely have a drink and will sometimes show frustration over being reminded to do so. When I've purchased one-liter boxes of apple juice,he often empties 4 or more in one day; I can't afford to provide unlimited apple juice nor the amount of apple juice he'd need in order to have 8-10 glasses of liquid per day. When the apple juice is gone, he doesn't do anything different with drinking unless I buy more apple juice (at which point he drinks as much as he can). He does like tea; he seems to prefer hot tea over cold tea (unless he'd be given cans of iced tea; I'm sure he'd drink those or cans of pop all day long if he had that option!) I've recently given him a cup of coffee. Not that caffeine-drinks are necessarily great for liquid intake, but after reading that caffeine helps some folks with adhd and fasd, I figured I'd give him a cup to see how he would do for a few hours afterwards, then talk with the school about the possibility of Chef having coffee at school. Maybe the strong flavour might also help satiate some of his food-seeking drives, who knows?
-In Grade 2, Chef wanted to eat his school lunches in the school hallway because "it's too hard to see everyone's food all the time because I want it all"
-There has been much sneaking of food into the bathroom and Chef's bedroom over the years
-When Chef was 2, he climbed out of his crib at night, got a bunch of overripening bananas (they were being saved for banana bread; Chef had wanted them during the day but I had given him something else instead), then took them to his crib to eat them, evidenced by the banana peels in his crib in the morning. He didn't seem to have touched the 3-4 bowls of candy that were sitting near the bananas.
-When Chef was 2, a heavy crystal fruit bowl was empty in his crib
-Chef was very very taken with fruit when he was younger, so at one point I kept a bowl of it in the kitchen for him as well as a bowl in his bedroom. He would eat the fruit in the bowl in his room then sneak the rest of the bag of apples or oranges or whatever fruit/vegetables, as well as other food, out of the fridge and into his room during the night. At that time, it was recommended that a bell be put on the outside of his door and that food not be allowed in his room in hopes that he would learn to access food appropriately. If I remember correctly, that is around the time that Chef's focus shifted to carbs; he would still sneak fruit or other items, but was very focussed on carbs and would sneak/eat an entire loaf of bread, boxes of granola bars, cereal, cookies, etc
-When I used to bake on a regular basis, Chef would sneak the entire cake or pie or all the cookies into his room or the bathroom and quickly eat them
-There have been many times over the years when Chef has not come for meals then hollered that he wanted his food in his room. Adoption workers told me early on that he would eventually come for a meal once he was "hungry enough" - not so. He still held out for food to be brought to his room. One time I brought a green pepper or apple to his room at the end of the second day of him not coming for meals. It was recommended to me by the adoption worker that I should not have done that. When I talked with his mental health worker and pointed out that that was the only way Chef was eating at that point, his mental health worker supported what the adoption worker had said, then added that it might get to the point where Chef would have to end up at the hospital to be fed that way if he continued to refuse to come for meals. He also stated he didn't know of anyone who would hold out for more than 2 or 3 days. I was not good with exploring that possibility.
-There have been times when it seemed as though Chef had almost set himself up so he couldn't come for a meal (ie. making sure he didn't have clothes to wear then attempting to come to the kitchen naked then stating that he wanted his food in his room, etc)
-Over the years, Chef has often often often taken food from other students or teachers. When he started taking the bus, we discovered that he was eating his lunch on the bus then saying he didn't have a lunch when he was found taking items from other students' lunches. We started having Chef hand his lunch to the bus driver and then his EA would meet Chef at the bus and Chef would then carry his lunch into the school. At that point, we were still working out details of how to transport Chef to school. He always wanted to just stay home, and before Chef started taking the bus I was always driving him to school but with much difficulty getting him out the door in the morning. Once he started taking the bus, he had to walk a few blocks, so I initially walked with him then moved on to driving while he walked then eventually just drove to the bus stop to wait and make sure he'd arrive - all in hopes of facilitating independence. Chef, however, started showing up at the bus stop with his lunch already eaten so I started taking his lunch with me to the bus stop to wait for him. He then started making stops at neighbourhood houses and asking for food, saying that he wasn't allowed to bring a lunch to school. Eventually a neighbour told me that there was a door-to-door bus service for funded students. The plan then became that I watch Chef until the bus arrives, and Chef then hands his lunch to the bus driver. The latter part of the plan doesn't always happen. Historically, school staff have been checking Chef's lunches on arrival at school to ensure it's arrived with him, and to take note of what's there so we can gauge how much of his lunch he is leaving for himself for lunchtime.
-At one point, Chef had an always-accessible snack shelf in his classroom as well additional snacks in a fridge elsewhere in the school that would be brought by staff to Chef at his request. This was in addition to the lunches that Chef was bringing - the lunches filled the paper lunch bag to the top. I don't recall whether Chef ever accessed the snack-shelf, or how frequently he accessed the fridge-snacks, though I do recall that staff were surprised at how much food he was still taking and how he didn't seem interested in his snacks, even though they were snacks that he'd chosen. I recall replacing food that had spoiled without Chef eating it. I also recall that the snack-shelf and fridge-snacks were available the better part of an entire school year, and that it didn't continue to the next year because they had so rarely been accessed and the food-sneaking in the school had continued throughout.
-When Chef was still in his younger years, his mental health worker at the time recommended that some food be kept elsewhere in the house so Chef wasn't sneaking anything and everything. I didn't agree and didn't really have another place for food, so didn't follow the recommendation.
-When Chef finished grade five, we moved to a place where Chef could not climb out his window and where he could attend a different school that had the reputation of having better and less punitive understanding of the needs of children living with various disabilities. On occasion, I put sugar, bags of cereal, etc., elsewhere other than the kitchen except at times when it was being used, and kept trying to find a place to keep bread where Chef wouldn't sneak it off and eat the entire loaf. I don't think we've ever ever had a loaf of bread in our home that was eaten "normally" prior to that. When we first moved, I also had an extra fridge in the basement to house jars of homemade soup, frozen casseroles, etc. In addition to the other food-sneaking, Chef would sneak down during the night and eat to his hearts content, evidenced by empty jars/dishes in his bedroom and in the storage room. One year on the week before hallowe'en, I put the bags of candy in my room but left some downstairs in a bowl in the kitchen. Chef had some of the candy from the bowl on occasion when I asked him if he didn't want any, but one night after he'd gone to bed and I was still downstairs, he'd made a hole (about 9"x9") in the drywall between our bedrooms in hopes of retrieving the bags of candy (I had already been locking my bedroom for some time prior to moving already; Chef would often go through my bedroom or his sisters' bedrooms, taking whatever seemed to tweak his interest.)
-Chef has always been told that snacks are available to him, and we've discussed snacks and he knows what is and isn't appropriate to eat. This has not kept him from eating entire jars of peanut butter or jelly, drinking entire bottles of pancake syrup or corn syrup, etc., etc. Knowing that he can have snacks whenever he wants has not kept him from sneaking food, and it has been rare to actually see Chef having a snack. He has stated that he prefers to be by himself all-around and that it's easier for him to sneak food because then he feels more like the food is his and he can eat by himself. He says being by himself is less stressful for him than being around other people.
-Interestingly enough, Chef has consistently come for many more meals once I stated that we wouldn't be eating at the table anymore. It just seemed too difficult for Chef to sit at the table with other people to eat. He was always watching the other plates, saying that he didn't like eating at the table, etc. We now eat in the living room for the most part, on furniture that does not face each other. Sometimes we watch the news or put in a video. And now, Chef sometimes chooses to sit at the table on his own.

I could go on and on, but if we fast-forward to today - I have removed flour, sugar, cornstarch, vanilla and other flavourings/extracts, etc., from the kitchen, but Chef has full access to the fridge and freezer etc, and knows he can have a snack when he wants. I've sometimes wondered why he seeks out such unusual snacks at times; I realize sometimes it's for sugar content, but flour mixed with vanilla? Sneaking and rushing through an entire jar of peanut butter instead of enjoying a plate of crackers with peanut butter is a sad commentary. It's not that Chef has never chosen to have a snack in an appropriate manner (in the living room, the kitchen, on the deck, or other places that don't involve sneaking/secretive snacking), but mostly when he does, it's at times that I have suggested it rather than those times being self-directed. Maybe I need to be more proactive in teaching Chef steps towards self-directed snacking.

So, with everything in mind, I am going to still keep the "highly unusuals" elsewhere in the house (so Chef isn't eating flour and vanilla, etc) but will stil keep the other food items still in the kitchen and accessible, with the ongoing reminder to Chef to snack when he wants but without sneaking. We are going to have a big bowl of always-accessible popcorn always on the table or on the counter, and Chef can gladly take some with him when he leaves the house if he wants; in fact, I might strongly promote that for the first while. I'm also going to be more proactive in his snacking otherwise. Since Chef does not do much self-directed snacking yet at this point (other than the food-sneaking), I am going to work on helping him gain more awareness of what/how/when he's eating. It's been recommended that we do up a food journal, so we'll work on figuring out how to fit that into a daily routine. And I am going to be reminding him regularly to eat (appropriate!) snacks with hopes that he will eventually embrace it on his own.

"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.

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...