Thank god for comic relief

[Kristen (ColeysMom)]

So if you read Tracy's thread about autistic behaviors versus kid behaviors you know that we had another stressful dinner last night :rolleyes:

He was running around, completely unfocused on dinner, playing and moving furniture around the dining room. The straw that broke the camels back was when he started racing a car around the table top. I asked him to stop cuz it was scratching the table. He of course didn't. I asked him again and DH flew into the dinning room (by this time everyone was done and Coley had only had 2-3 bites...as usual, so DH was in the kitchen cleaning up) and he was po'd..."Coley put the car down and leave it alone or you ar going to lose it" Well he didn't. So DH took it and put it in the center of the table and said don't touch it again until your dinner is finished. Well Coley decided that he wanted the car not in the center of the table but next to his plate...As soon as he touched it, DH took it away...as you can well imagine that began the screaming...dinner was over...DH picked him up and carried him to his room.

I totally agree that there was a better way to prevent the blow-out, but I'm telling you patience is GONE here...we have given him more opportunities and more approaches, and nothing seems to help. We have even had toys at the table where he can take a bite, then play for a minute...at this point DH is going old school on me...and I'm actually getting nervous that spankings are going to be next...

So that just gives you a sense of the atmosphere here last night...

Well after I updated in the other thread, I went in to talk to Coley...he had been in there and quiet for 30 minutes or so. He was fast asleep! So, I decided to just leave him, kinda hoping that he slept through the night. I felt even worse cuz clearly he wasn't feeling well, and again I'm left with a nagging question about how to react to his behavior. So his focus was bad and maybe his appetite too cuz he was feeling sick...BUT he does remember/learn if we 'baby' him and he expects that...UGH!

So, around 8pm I'm just getting Audrey wound down & about to put her down for the night and I hear his little feet coming down the stairs...YIKES, nice nap! now he's ready to go! :eek:

He hops up on the couch apologizes for not eating his dinner and not listening to Daddy...and I just feel like a BIG HEAL! I asked him if he was hungry and he said he wanted dessert. Well, I was NO WAY going to be ok with a treat after the whole fiasco, even though he appologized & all...so I said, how about a little more dinner and then an oatmeal cookie. And the negotiation begins...he wants the cookie to sit NEXT to his chicken nuggets. So I say, ok Coley (HOPING after the blow-out he learned something) but you eat those chicken nuggets FIRST. Knowing full well the temptation would be too much, but I gotta give him a chance right? And I don't want to hit him with an argument right off... So he says...what about if I eat them together. So I say, listen Coley, you know the rule...no fructose without meat, right? He says Yup. So what does that mean...I need to eat my chicken nuggets. Ok, good I said.

I get him the cookie and 2 chicken tenders and put them on a TV table. Then go and get his PJs. When I came back sure enough the cookie was gone and the chicken was still there, with one little nibble out of one :rolleyes: and he's now running around...

Alright, so now my BP is starting. "Coley, I'm not happy right now. Do you know why?" And he looks right at his plate. I'm in no mood to talk him into eating at this point, so I just grab the thing and help him eat it. Then I tell him it's time to put his PJs on. He then tells me he needs help...which of course he does not. And at that point I'm in NO mood to dress him like a baby AND feed him like one simultaneously! So I basically say, No you do not need help, you want help, and I'm already helping you eat so you do your PJs, ok? "Ok, Mommy" I give him another bite and go into the kitchen holding my head like WTF!

DH is in there doing the dishes, he turns around, probably felt the tention as I walked in...just looks at me like what? which is largely nothing...but it just NEVER ends...so I just say..mother of GAWD give me strength!

No sooner do I get that out of my mouth DH sees Coley in the door way, I see the look on his face so I turn to see what he's looking at....

Coley is waddling over like a penguin, pants at his ankles, one hand clenching his penis, the other holding up his shirt.

Without bursting into laughter, DH says, what's up Coley...."I need to pee" DH says, ok, go ahead then...

The next thing I hear is a rattling of the latch on the bathroom door and Coley says "OH GA-REAT!"

I nearly lost it right then...the latch was hooked on the bathroom to keep Audrey out and Coley's hands were full!

OMG! I just burts out laughing...

DH runs to unlatch the thing for him, Coley hurries in to pee, and then he's yelling "Mommy what's so funny, what's so funny"

I just yelled, Daddy told a joke, grabbed the phone and ran out to the garage to call my mom....

OMG! If only I had the video recorder on...that would have been AFV grand prize material!

But it was just that much funnier after the stressful night we had...

Thank god for comic relief!

[milivica]

Hee hee!

Hey I got a classic for ya....

Carmen told me that at school, this boy (with autism) was sort of stressing cause he had an itch on his nose or maybe it was in his nose. Anyhow, the teacher said to him, "It's ok, you can just scratch it with your finger" and the child gasped and said, "Ohhhhh NO, I can't use my FINGER" and the teacher asked, "Why not" and the kid held out his finger and seriously and calmly replied......
"Cause there's poop on it."

BAAWAWAWWAAAAAA!!!!

Classic!

Sorry about your guyses dinner, your dh is being as INflexible as Coley - gotta get more creative with that stuff. My dh too, I mean, what is it with this all or nothing 'I am the boss' type flexing men do. Yeesh. Tell him the penny story with the guy and his kid at Target that I posted to you. See what he thinks. When dad's get flexible in their thinking, and get open to parenting that produces results/progress more than being the authoritarian or boss or whatever, they really rock. It's hard to learn, I'm still learning but my dh is way behind me I'll tell ya.

[Isabelle]

hold on! i thought toys do not belong in the dining room, less in the dining table and one rule first the good stuff then dessert, no negotiation.
he is in control.
get to rule kristen, "from now on...when is time to eat, time to eat, time to play and when is done playing, toys away.... go pee washroom (LOL not in his hands), wash hands, come to eat..." simple routine, no arguments. get a "supper nanny" or rdi master yoda like mili :D

[Kristen (ColeysMom)]

Ok Isabelle, I'll bite...

Firstly there are no toys in the dinnng room...actually there is not much more than the table and chairs...I don't even have accessories in there.

Coley does not sit still - ever.

At dinner, he hops up from his seat and gets things, and to do things. We try to redirect him but it ALWAYS leads to a negotiation/argument...which eventually leads to a melt down if we are insistant and then no dinner is consumed.

My entire struggle with Coley seems to be getting him to follow directions. At times I feel like it's a focus issue, but often it's more about him wanting to do something else, like play, so it becomes a negotiation. He is VERY verbal and proud of his debate skills, so he uses them at every opportunity to control the situation, any situation. Ignoring seems to be the most effective technique with him at school.

But since we have probelms when he doesn't eat, beyond his control we can't let it go too far, so the idea of natural conseqences...like you don't sit & eat, you go hungry actually spirals into MUCH larger health issues. So more often than not we end up feeding him on the go...as he's flying around...once we've finished eating...we will fill the fork and on his way by we will stop him and fill his mouth. Mealtimes last a VERY long time and are filled with frustration for all of us.

The toys idea that I mentioned above was a technique that we used when he was 3, and was recommended by a therapist...it bombed because he got too mad when the toy was taken away. The idea was to make him take another bite so that he could have the toy again for a minute or wahtever. But waht happened was he would get so upset that he would throw-up.

As I also said...our patience has gone at this point...there are no games or techniques used now.

While we eat, we remind him to sit, we rimind him to take bites, we remind him to chew, we remind him to swallow. We tell him that time is running out, that he will lose priveledges if he doesn't follow directions, etc etc etc. If we do nothing he doesn't eat at all. If his behavior gets so disruptive that Audrey gets fussy, or that we are unable to eat, he is removed and put into his room.

It's REALLY hard to maintain patience when we are hungry ourselves, sitting in front of our dinner and are unable to eat it...while listening to a screeming 15mo because she is being distracted by a hyperactive 5 yo.

What do I do? HOW do I get control? And is control the right word here? Clearly I have none, that is true...but do I really want to have a battle of wills?????

[peglem]

I've been pondering your whole dinner problem, Kristen. I don't have any solutions, but, maybe some thoughts that will help you, or not....
I googled "appetite stimulants" (I have a 16 yo daughter who has developed some pretty severe appetite problems and is losing way too much weight, so really looking for both of us)...the result was a few psych drugs-neither of us wants to go there. But there was GOBS on cannibis! If it wasn't illegal, I'd sure give it a try. So anyway...

I'm thinking the 3 of you are so stressed out over the daily dinner battle. I wonder if Coley purposely does things to get sent to his room...nobody there reminding him to eat, nobody asking him to behave in a certain way...no anxiety. Could that actually be reinforcing for him?

Have you ever had a successful meal with the three of you? What made it work?

Looking at the idea of getting Coley to engage in the guided participant relationship here. How can you set up the situation for him (and you all) to be successful, so you'll want to do it again and again? Dinner seems to revolve around all these things that Coley does not feel competent in- eating, sitting, social relating. So, he switches to the things he is good at-negotiating, attention getting, etc. Is there someway to reduce the anxiety around all this and slowly build competency, working one area at a time? Like, try not reminding him to eat, at all (it sounds like that hasn't been working anyway and you end up saving it and feeding him later). Do you think that would lessen the pressure there and help him to enjoy just being at the table with you? Once you get him to enjoy the the dinner experience, start encouraging eating a little bit.

I don't know- it just seems like you keep repeating the same scenario over and over again. Want you to know that I'm not judging you, at all...just sympathizing with your frustration and trying to figure out what's happening beneath it all. My husband loves to eat out...we used to constantly try bringing Allie to restaurants (when she was really young it was okay). When it became a struggle for her- the solution seemed to be to keep bringing her and she'll get used to it and then she'll be fine. But, it never got better. Finally, I just decided- Nobody is enjoying eating out. We keep doing this thing that makes us all miserable. Why? It clearly was not accomplishing anything. So, I just refuse to do it anymore...My husband can take the other kids, I'll stay home with Allie. They can enjoy themselves and bring us back some food. Yes, this makes it so we can't eat out as a family, but insisting that Allie would do what she was obviously not capable of doing...she just felt like a failure everytime- and so did we.

Okay, so that all was not all that coherant-sorry, I'm not really saying things as clearly as I want. But, I think you need to examine what works and what doesn't work and think about how important those classic family dinners are vs. the misery they are producing.

[Kristen (ColeysMom)]

There are some appetite stimulants that you may be interested in, we've tried them and like every other man-made substance Coley went whacko on them so we had to stop...other than that they did boost his appetite though...UGH!

there are 2 that are VERY successful, Megace which is a hormone and generally tried second to periactin which is an antihistamine. From what I can tell, but I don't know for sure because I stopped looking when the whole thing bombed for us...is that if the periactin works there is a good chance that there is a mild allergy at work, and therefore other antihistamines could work too. This came up for us recently again too...Dr. Y said that he's had a number of his paitents on the spectrum with eating issues respond well to singulair and another one I forget...but since we've had such HORRIBLE results with all meds, I kinda shut it down, but still have it in the back of my head. I did do some research after that discussion and found one allergy med that does not have fructose or any other substance known to us as adversive for Coley. I forget which it is right now...

On the other thoughts...I absolutely agree with you...it's largely frustrating for us because of the weight issues. I'm afraid too that in my descriptions that it sounds like I have a throbbing vein in my head as I nag him to death during dinner...this is not the case. The best scenario is that we are sitting and able to eat...Audrey too...and Coley is bouncing around relatively quietly. DH, Me & Audrey interact and largely ignore him. Every onnce in a while, I will remind him of something. Once we are done I will then direct my full attention to getting the food down his throat!

It's stressful because he doesn't do it himself!

And then it gets worse when he starts to get the urge to redirect attention to him. He does this by pulling on our chairs, or acting like AUdrey's highchaor is a jungle gym. This is where we draw the line. He also gets loud which makes it impossible for us to have a conversation over him, and overstimulates Audrey. When this happens we end it.

Otherwise we feed him like a baby getting a bite in every couple minutes which drags dinner out FOREVER!

I know this is gonna sound snippy, but I don't mean it too...but this IS the best we've been able to achieve. He used to kick and scream at the very thought of eating. Tantrums getting into his chair, etc. I use to have to use distraction just to get the fork into his mouth. I used to even have to sneak up on him with his bottle as a baby. This is actually better...and just typing/thinking about that gives me some relief right now...

I think what Coley is trying to achieve with his antics is attention. He does this when DH & I are talking and he does it when we are focused on Audrey. He says he HATES going to his room and generally comes back down to the dinning room within minutres appologizing and saying he's ready to eat...although he's not. But if we get a chance to eat during that time, then it's ok because then we can feed him.

Not sure that really answered your questions...but I do understand what you are saying...and really why I thought the reward chart would help...sorta show him positive reinforcement so that he may decide that dinner is hell and change it on his own...well that plus all the other negotiations that go on too...

I can't reread...Audrey is fussing...hopefully that'll make some sense, and hopefully it touches on all your thoughts...

Thanks you though for thinking of us...I REALLY need some ideas, and could use all the help I can get!

[Isabelle]

Ok Isabelle, I'll bite...

He is VERY verbal and proud of his debate skills, so he uses them at every opportunity to control the situation, any situation. Ignoring.........

The toys idea that I mentioned above was a technique that we used when he was 3, and was recommended by a therapist...it bombed because he got too mad when the toy was taken away.

What do I do? HOW do I get control? And is control the right word here? Clearly I have none, that is true...but do I really want to have a battle of wills?????

Kristen, please don't bite me. i am sorry if making light of your situation upsets you, it was not my intention.

i noticed that you say coley is very verbal and proud of his debate skills...ok, you be the mute and do the action...he knows what is expected of him, right? so relax, go through the motions do ignore him like he is invisible, unless he does something nice. put your attention to the baby, to your husband to the food you are eating and if at dinner time he doesn't eat i would remove the plate, saying "i guess, coley is not hungry" and then say like thinking aloud "if he gets hungry i am leaving this and that for him" with not a glance on his direction and make yourself busy.

now, you say "the toys idea was a technique recommended by a therapist". of course it bombed! kristen, that's how we ended up at the moment, we thought all these "experts" knew our son more than us....so it is not a surprise if you can't get a handle of the "situation". you lost trust on your maternal instincts.

by following 'experts' advice that's how i failed...

but my senses is telling me that when a kid run the household is to ignore, calmly ignore even if he is hanging from the chandelier and threatening to jump, if he threatens to hurt the baby or make her cry, pick her up saying "let's have a pudding or let's read a story" and don't say a word to coley and speak OF him as in third person, no reaction, no confrontation, no debate...

but do not listen to me i am not an expert and i failed my boy because i believe the 'experts'.

[mrsjerome]

Kristen
I am far from being an expert on this issue. I remember at times when my son was little. There were times we could not all eat as a family without some commotion from him. He usually had a lot of meltdowns at the dinner table. He would start eating then after maybe a bite or two would just start gritting his teeth and clenching his hands and start crying . Then would grab at the food on his plate and with his hands just start squeezing and throwing it all over. So I tried to feed my husband and my younger boys separately. It was not an ideal situation for us but at least the younger ones & my husband were fed without this distraction.
My son is 44 now. He lives in a group home. The case manager tells me at times , he will just get up from the table and leave without eating. They allow him to do this. Later in the evening if he comes out indicating he is hungry they do have granola bars etc they will give him. But of course they do not keep his plate warm or will feed him supper later. At other times he will sit & eat with the others
Like all of us our biological timetable for eating can fluctuate. Sometimes there are foods that are distasteful and as everyone else we have our likes and dislikes.
Maybe with Coley his appetite is just not at the time your supper is served. I know it is hard because of the dietary issues he has and you want to have him get his proper nourishment. But if having to warm up his supper later is still not working maybe he just needs to skip it altogether for that evening and just let him have whatever prescribed snack that he is allowed to eat. Then see how he does the next day.
Maybe the fixation at the supper time is overwhelming for him and also for yourself.
Sometimes it’s not a bad thing for everyone to eat at different times.
In my family when I was growing up everyone came home at a different time and it was rarely we all sat down at the table together. My Grandma used to have food prepared on the stove and we would just heat it up whenever we were ready to eat. If I didn’t like what she had would just fix a sandwich .
Hopefully you will find the right combination that will work in your case.

[froggy]

Coley sounds a bit like my son, but younger. In our family the dinner dynamic changes dramatically depending on who is present. Is your husband always home for dinner? When my dh is not home at dinner it is more casual and less stressful for my son.
Also, my son does much better when he eats on his own. This happens often at lunch. I am usually preparing something else for my younger son or the younger one is eating at the counter while older son is at the table. The distraction of other people is gone and he focuses on eating.
Although we have had dinner difficulties at home, going out to eat brings a new side and he is appropriate and pleasant 99% of the time. Does Coley go out to eat at all, how does he do with that?

[Kristen (ColeysMom)]

LOL...I'm not biting you...and please don't misinterpret my frustration as anger toward you.

Here's my trouble with the approach you described...which yes, indeed I've tried. Infact I think the more things I try the more inconsistent I become and the more incompetent I appear to Coley...which of course has it's own issue, as you've pointed out.

That aside. If I ignore him, he gets louder & louder or more & more disruptive until the focus is directed toward him.

There was a time where he would do things like throw his food and spit it out & worse...those days have gone since correcting his diet. Now it is behavioral. The feeding therapist has said that for every one uncomfortable/negative eating experience he will need 3 to undo that. I try to remind myself of that to keep my patience in check...he was almost 2 when the projectile vomiting stopped after every meal, and almost 3 when we he was diagnosed with the fructose intolerance. So based on that he will be 8 or 9 before we should expect him to have a more or less stress free meal.

And I can deal with him being cautious or whatever about eating...but in my mind that should not exempt him from sitting and behaving appropriately...maybe my expectations are too high...but I feel like having lower expectations only promotes the behavior....sometimes I SWEAR he has ESP!

I understand the whole idea about ignoring bad behavior & not reacting, but when he does things that can't or shouldn't be ignored...like damaging furniture or hurting us...there's a line right? So when it gets to the point of NEEDING to intervine, this is when things get REALLY pumped up. And where I don't know how to respond.

Sometimes I think it is about control or whatever, like I see the difference between how he behaves with DH versus me at times and I've noticed that my husband tends to talk down to him when he's frustrated and also repeats himself a dozen times giving Coley no real time to 'do the right thing' ...like DH expects him to screw it up if Coley has a second to think on it for himself. Does that make sense?

So from that I gotta believe that much of what is going on with him has more to do with the fact that he CAN and wants to do better, but that he also thrives on attention. Course he's used to it too...I mean he's gotten a lot of pretty intense attetion since he was VERY small...he's been conditioned. Now that we have Audrey, and I have higher expectations I think things are changing.

That goes across the board...getting dressed, cleaning up, the way that he occupies his 'free' time, etc. But dinner and all mealtimes have a special kinda difficulty because of his history with eating. His current health status and the dangers of him going without a meal...or too long between meals really...so dinner is especially important.

Lunchtime and breakfast is not so stressful as dinner. Audrey and DH are not generally present. I allow him to sit infront of the TV...I know...bad bad bad! But really all that does is keep him put, it doesn't insure eating. I still need to feed him, most of the time. You know, if it was all the time, I think I'd just accept the fact that he's 'delayed' or whatever in that area, but it's not...sometimes, rarely, and I just don't know what makes these times different, but there are some times that he does eat on his own. And then there are even times where he not only eats on his own without reminders or help, but he eats well...I could probably count on one hand but, there have even been times where he's eaten enough for a teenage boy. But for the most part he just never seems to have any appetite...not a small one. None.

I'm sure that it has to do with lots of internal stuff...stuff I can't use to my advantage...but the thing I can do is KNOW that it is possible for him to do it without help...I mean it's not like he's without the skill.

So ya, of course he's sick now and doesn't have much of an appetite...I can handle that and help him out...more milk, easier to go down with a sore throat than a hamburger...whatever...but what about when he's not sick?

I dunno, maybe I should try the ignore thing again...it kills me too to see the rejected look on his face when we walk away from him too. I am sure some is about attention seeking and when I take it way it breaks his heart. But attention seeking from a hyperactive child. Some is also about focus...he really does lose interest with things quickly...and eating is no different...it just has other consequences for which we need to stay on top of.

Oh one other thing that I think plays largely into his behavior is his method of learning. I suspect most of our kids are visual learners...so he's likely no different in that respect. But add onto it, his stubborn strong willed genes, and determination & tenacity that is unmatched... This kid he studies things around him, and then wants to build a house...and will not take no for an answer. He wants to try...so we end up having to give him some way to try to use a saw or a drill or whatever until he gets a feel for it enough to satisfy his desire to try it out. Course he could never build a house on his own, and once he figures that out, he'll let it go. But short of a major contruction project we run into MAJOR problems all the time where it's VERY hard to explain to him that he can't do something...because he's already determined that he can. It has nothing to do with danger, it has nothing to do with size, or even laws...if he thinks he knows how...that's all that matters.

Now I'm getting WAY off subject...

Thanks everyone...lots to think about! Keep it coming, I'm DETERMINED to get this right!

[Isabelle]

LOL, what a cute angelic face in that picture !!!

Kristen, i don't think he has ESP, he knows you like the palm of his hand....LOL
that's the way some very smart kids are, sorry you have one like that....'sorry' is the wrong one, 'congrats' is better :):D:)
i wish i could say relax, take it easy, let him learn by mistakes, but wanting to build a house with pops' tools...LOL that's a memory for posterity, but also a bit dangerous and is up to pops to say to step up and explain to corey calmly from man to man what's involved in building a house:
1. the design is put first in paper
2. then the design is build in a maquette with foam board glued to another board

enjoy that kid of yours, but sometime take a few steps back and 'ignore'...if you can. if you control your emotions, corey will learn to control his too.

a quickie example, i got rolled over twice by cars at the age of 4, nothing serious, but from then on i felt sheer terror at crossing major streets. i was 8 and still nervous, heart pumping would cling to my mom's legs and screamed. my older sibs were sure that it was attention-seeking behaviour from my part. my father and even some of my mom's friends thought i was being spoiled and a whack on my butt would fixed me up for good. but my mother said no and patiently waited for my panic to subside and then carefully we crossed the street...i remember looking up at my mother's face and seeing her calm resolution, that calm action from my mother clicked in my head and from then on no more panic attacks.

[RathyKay]

Maybe with Coley his appetite is just not at the time your supper is served.
This kind of got me thinking. How often are you feeding Coley before bedtime? Maybe, at the first sign of "trouble," go ahead and have Coley get up from the supper table. Have him play in his room while the rest of the family finishes supper. Tell him he can eat later, when he's hungry. If that means he's only sitting with you for 30 secs, so be it. Hopefully, you'll be able to eat and keep your blood pressure down. If you want to give him a second chance to join you, that's up to you. But, don't go for third and fourth and fifth chances. He can eat later, when your stomach is happy.

The other thing I got to thinking about...it could just be my interpretation. But, it sounds like sometimes he sits at the table for an hour and a half and all you manage to get in him is two bites of a chicken nugget. Maybe keep track of how much he's eating, versus the time involved. Say he eats half a chicken nugget in the first 10 minutes, and then only two more bites over the next hour. (And I have no idea how big these nuggets are or how big a bite Coley takes, so work with me.) The point is, is it worth sitting there getting upset for the next hour, when he's only going to eat two more bites?

We don't always eat together. For the most part, the kids and I eat together, and Mr. Kay eats when he gets home... which is close to bedtime for the kids. And when Claire has play practice, she typically eats by herself. When we ate a more standard American diet (SAD:p), I had enough times that Mr. Kay took the girls out to eat, and I stayed home with Tom. Less stress for all involved.

The disappearing oatmeal cookie reminds me of one of my visits to my brother's when I was in college. They had a dog, and my SIL worked with him and he was very well trained (unlike my dog... sorry Mili:o). My brother was at work, and we were in their basement having pizza. My SIL went to show me something, and she set her pizza on the chair. I made some comment about the dog, because it was definitely easy access for the dog to eat it, and she said the dog wouldn't do that; he knew better. Well, we weren't gone very long, and sure enough, the dog was eating that pizza. The temptation was too great.

Anyway, good luck. It's always easier to tell others what they're doing wrong when you don't live it yourself.

[Kristen (ColeysMom)]

UGH! Well Kathy, it would seem then that Coley is NEVER hungry, because left to his own, he just doesn't eat. I hear his stomach, we've even had specific lessons with him (through school and sensory therapy) to make him aware that THOSE noises and feelings mean he NEEDS to eat...it's crazy! There really does seem to be a disconnect between his body and his mind when it comes to eating.

His feeding therapist suspects that his hunger cues and eating have been 'miswired' due to all the discomfort he's had in the past with eating. The shortest idea being that it's more comfortable for him to be hungry than it is for him to digest food...but that shouldn't be the case anymore...but back to the idea that it takes 3 good meals to every 1 bad to rewire eating disorder issues.

Meantime I need to keep him from having a low blood sugar episode though...it seems once he slows down in eating he goes on a total carb kick, which then affects his behavior and concentration...which makes mealtimes even harder We are dealing with that at this moment...I'm struggling again to get protien in him...seems it all was triggered by a B-day party on Saturday...I know I'm an idiot! But he needs to interact and he really is getting depressed/sad at the fact that he's different than the other kids, and it's just magnified at events like that...

Sigh.......oh no, he doesn't sit at the table for 2 hours, that's the compounding issue (focus & distraction)...I'm lucky if one but cheek lands on the chair for a mili-second during mealtime. He just honestly has no focus...we have been able to get the table set...but then he's done. Getting him to actually take his seat and take the first bite is unbelievable...and if he does, as soon as there is something in his mouth he is up and off...

The other night he spent 10 minutes trying to 'build' a more appropriate (in his terms) seat...he felt he needed a cushion to boost him up higher (he already has a booster). He wanted to put the booster on top...which makes it precarious (sp) and we knew that and tried to help him out...but OH NO...he needs to do it himself...then oh, he needs a second cushion...on & on...FINALLY he was satisfied with the set up when his booster was literally at the same hieght as the table top...:eek:

But there was no helping him or anything...he HAD to have it that way & HAD to show us it was perfect...

Well, of course...it didn't work and then he had to start all over again...then he was mad at that...finally he decides he's going to kneel...he takes every thing off the chair and has the chair so far away from the table that if it was any further he wouldn't be able to reach. I just pulled his chair in for him...and he got mad at me and pushed it way out...now food is dropping all over the floor, so I suggest he push his chair in just a little to avoid the mess...nope, "don't worry Mommy, I'll pick it up" So one bite and now he's out of his chair...and Audrey is done and fussing...

I clean her up and take her outside for a stroll, DH stays with Coley. Before I left DH grabs his bowl and starts with the 'helping' about 30 minutes later they come outside. I don't say a word...when I get back in I see his bowl on the counter and it looks like maybe 4-5 bites are gone out of it. DH doesn't have the patience to stick with it.

This was actually a good dinner in that he mostly stayed in the dinning room...generally he's all over the house.

Coley has the opportunity to eat 5 times a day: breakfast (7am), snack (at school, 9:30), lunch (1ish), dinner (5ish), snack (8ish). If he actually ate during those times I'd say ok, maybe we should cut the snack out or whatever...but he doesn't.

There is just no rhyme or reason to this kid's eating issues...well except that they get worse when he varies off his diet! Which just brings me back to that nagging thought...paleo!

At this point, though, I'd just like for him to sit down and behave during dinner. I'm still pondering the idea of giving him a separate dinner...but I just imagine that being like lunch...where he sits in front of the TV and I feed him. It goes down the hatch (which is good) but he's distracted by the TV....

Yesterday at lunch I just left him to his own and didn't give him any reminders at all. He had a 1/2 burger and a 1/2 bagel with cream cheese (his choice). Trying to be that zen mom that Isabelle (and I think Keggy) is suggesting. After Audrey finished eating, got changed and was settled down for her nap...so like 45 monutes, he's had only a couple bites of the bagel (like 1 or 2). So without saying anything I gave him the clicker and told him when he was done to shut off the TV and I'd meet him outside. "Ok mommy."

Well I dunno maybe 30 minutes later he comes outside and wants me to put his shoes on for him...so the first thing I said..."Oh wow you're all done with lunch, great I could use your help out here"

Coley: "I wanna have a picnic on the pouch"
Me: "Ok, go get your plate, I'll wait here"

He goes in and comes back...he has eaten nothing more than when I left...and oh, he didn't eat any breakfast (horrible morning and only had the small snack at school) it was about 2pm at this point.

He sits down and I continue the yard work...a few minutes goes by and he's out asking me to put his shoes on again...I check...nothing eaten!

So I told him that just as soon as he ate that hamburger that I'd be happy to help him with his sneakers.

Well that went on & on where no matter how much I tried to ignore him, or whatever , just basically telling him 1 time for ever 10 times he asked that I've already given him his answer..."you need to finish lunch before I can help you...the answer is not going to change so please stop asking"

Well he tried getting in my way to stop me from doing my thing and screaming loud enough for all the neighbors to hear, both failing for him...he runs inside, leaving the plate on the outside table. I'm thinking, Ok, time to destroy his room or something...I just left him. Well about 15 minutes goes by and he comes out wearing his sandles.

There he's got his shoes on and now he can leave the porch.

I just told him that I recognized his clever solution, that he was able to get his shoes on by himself, that I am proud of how smart he is, and NEVER EVER question his intellegence...but that he STILL needs to eat...

He just looked at me, like yeah try to make me...so I said, I'm not going to fight with you Coley, if you aren't going to eat, bring your dish inside and put it in the sink. So he does. Mealtime over...an hour and a half later. And he's eaten 2 bites.

Then before DH gets home he wants a snack (3:30 ish) so I'm thinking great he's finally hungry he's going to eat...he picks out a baby yogurt...all of 4oz and a woppping 100 cals. Whatever...I'm thinking ok, it'll hold him over until dinner and then he'll be hungry...

WRONG! He ended up in his room before his dinner even made it to the table cuz he was falling to pieces...likely a blood sugar thing...but we need to eat too...I'm thinking he's going to pass out...when we were done we cleaned up and planned to go back out with Audrey...but before we did he came out of his room:

"you're done with dinner already?"

yes, are you hungry now?

Can I have potatoes?

"No. we don't have potatoes tonight. We have chicken, broccoli and rice."

And he starts with the tantrum...I want potatoes....

I'm going out now Coley, do you want chicken broccoli & rice or not.

Well, maybe I'll just have my dinner.

Coley, that means chicken broccoli & rice, is that what you want?

I said I want my dinner...

So I take it out for him ...I put it at the table and he was tinkering with something else. I told him it was there & go out

15 minutes goes by and he's out on his bike...he tells me he ate his chicken and nothing else. Well that's really all I care about anyway...it's the first met he's eaten since Saturday morning.

So that means in the course of 24 hours he's had: 5 or so bites of totelini, 2 bites of a bagel, a baby yogurt and a chicken theigh (no skin).

I got him to eat 2 eggs this am...it took him 40 minutes, but he did it on his own with a lot of encouragement & reminders.

The feeding tube comes up a lot for him...but that would only make his feeding issues worse AND there is NO way they'd have a formula that would meet his restrictions....

edited to add: sorry this was so long...this subject gets me venting...but I'm also trying to show every detail hoping that you guys can pick up on something...a key here that I'm missed....

[peglem]

Here's what occurs to me:

1st of all, though he didn't eat very much, was it about what he usually eats? If so, then you got the same eating results w/o the anxiety and that's a plus right there. I'd continue to destress the eating issue and have stuff available for him to snack on all day. I know, bad habit- but that's the way people ate long ago- hunter food gatherers- you ate when it was available. That should also help with the low blood sugar stuff.

The other thing that came to mind was yeast issues. By the way, has his rash cleared? Hyperactivity in the face of hunger and low blood sugar usually means yeast in Allie.

Has Coley ever seen an endo? What's that hunger hormone-leptin? or is that the one that signals all full? Anyway, there is some hormone that triggers feelings of hunger. How's his thyroid?

Okay, leptin is the all full hormone I was thinking of this one:
http://en.wikipedia.org/wiki/Ghrelin

That brings us back to the G-protein pathways and the vitA/acetylcholine thing. (if you read that, it says that the receptors for this hormone are G-protein pathways.) And, I've recently found out that yeast produce an anticholinergic toxin (so do a lot of bacteria).

here's another hunger hormone, also G-protein receptor:

http://en.wikipedia.org/wiki/Orexin

Sadly, for those with not eating issues, science seems mostly interested in studying these for ways to reduce them-to treat obesity.

[Kristen (ColeysMom)]

Pegs, first off THANK you for staying interested in this...I'm VERY greatful for all the info you have and share!!!!!

I only have a second and then I won't have more time until later, so I wanted to just answer your questions quickly...

NO...UGH! I haven't had a chance to read the vit A stuff yet...and I'll have to get that to that link later too...but I did think there was enough in what I read before to peak my curiosity...I'm planning to have it read and follow up on it before our next visit with Dr. Y.

I also think yeast has a lot to do with it...particularly since going off diet sets him off, and one of the big symptoms is a VERY strong desire for things like bread and crackers.

I've been rotating the s.boulardii lately with his enzymes...

Yes we've been to an endo...and his levels get checked every once in a while...they are normal, AND very steady. There are a LOT of thyroid issues in our family, both sides! So they are keeping an eye on him, particularly with his eating and growth issues...but that is done outside of an endo, but at the endos suggestion. IF things get out of whack, then we go back.

If I help Coley and basically not encourage him to 'particapate' in the process, I could get probably 1000+ cals in him a day without much of a problem...just a ton of work and time on my part.

If Coley does it all himself...probablly 200 cals, maybe 300...mosly countable bites, plus maybe a glass of milk or a yogurt or something.

With a lot of reminders, somewhere in between.

[RathyKay]

The feeding tube comes up a lot for him...but that would only make his feeding issues worse AND there is NO way they'd have a formula that would meet his restrictions....
Not that I'm really pushing the feeding tube, but... you don't have to use formula. You can buy a VitaMix blender and blend your meals for him. (Yes, VitaMix is very expensive, but they do the best job for blending meals for tubes.) We've had some threads recently on blenderized / blended diets for tube fed kids over on Child Neuro. It can be done, and the results over formula have been worth it. And, Coley could still eat by mouth, if he wanted to. It'd be quite easy to go Paleo and push the protein as much as you wanted with a tube. And, maybe after a long term on food that agrees with his body, his appetite would improve along with his oral feeding? I know, sounds like I'm arguing for a feeding tube. I'm not, really, but I can see how it might help things for the long term. End your mealtime battles - he eats what he wants and then you "supplement" through the tube accordingly. You do a better job of controling how much protein he eats. Hopefully, with a better diet, that will improve things all around (focus, hyperactivity, yeast, blood sugar, etc.), and maybe get his appetite issues resolved and ultimately go back to eating orally fulltime.

In some ways, I'm glad Tom has seizures. (Did I write that?!?!:eek:) It makes it easier to say NO to birthday cake at parties, because I do not want Tom to have a seizure. He still goes to parties, as well as the girls, but I send food and I make sure both host and child know what is acceptable to eat. I did my waffling in the early days, and I've moved on.

[Kristen (ColeysMom)]

I hear you Kathy...and trust me there are times when I'd like to do it just to end the insanity...but it really would be a BAD idea! If his health was less stable then it would be warrented.

Here's the thing. If he were to get a feeding tube, he wouldn't eat at all. It would actually set him back in his eating. I know that that sounds insane to you...but he would lose his desire to eat orally. It's actually a very common thing. It even happens to adults that get surgery or have strokes or something that makes it impossible for them to eat on their own.

I think it has to do with how cravings work (which obviously isn't working so well with Coley now)...but a person craves food when they are hungry or NEED something. If we are feeding him all that he needs, his body will have no need to 'request' something else. Does that make sense?

He MAY actually miss a taste or something...that is possible, but how often does that happen with the normal person, and what types of things are typically missed? Generally things he can't eat, right?

There is one kid in the fructose group that at age 8 needed to get one, everything was just going right through him. Even on the diet. His system was just SO banged up! His teeth were falling out and he was getting sick a LOT, so they had to get him stable. He stopped eating and only craved one thing: gum. He wanted to chew, but not food...just chew. Course he couldn't have gum, so I think a straw ended it for him. They wanted him to eat so they could isolate foods affecting him in a very controlled way...he just wouldn't do it. And he is nt. They ended up having to get him healthy and his weight up...I think it was like 18mos or something...then start cutting out feedings to make him hungry again. But they had to wait until he was strong enough to lose those cals.

And I'm not so sure he isn't having some sorta events...maybe slow processing or something...but something is not working right...but he needs interaction...sure I can make him stuff, and there have been a few times (since he could care less about food anyway) where he just didn't have cake and it didn't bother him...even when he has cake he only has a couple bites anyway... it's not a lot, so at this moment I still see it more beneficial to his social development to not make him different, ya know????

He's starting to get back to himself now...5 days later. :rolleyes: