This blog was initially set up as a means of communicating with my son's team. Since then, I've heard from other parents with similar stories. If you are living with challenges or journeying alongside someone who is, you are not alone. There are many of us. I'm a single adoptive Mom ( of a young man who lives with many abilities and many diagnoses. We have journeyed together through many challenges and a few adventures over the years as my son has tried to find space in this world that makes him feel more comfortable, an attempt made especially difficult when living with Attachment Disorder, PDD-NOS (Autism), Developmental Coordination Disorder, ADHD, prenatal substance exposure, etc. Some of the strongest elements used in this journey have been music, visual arts, therapeutic parenting, team-connection, boundary-setting, boundary-setting, boundary-setting, communication skills, community-building, continual lifeskills training, and elements of Theraplay. (Click here for some written resources.) On this journey, there is laughter and tears and growth and hope. The greatest of these is hope.

Friday, October 8, 2010


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.

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