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Karl Otto

My Youngest Son Is Not Coping At All Now

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My youngest son just flat out refuses to eat anythng that is gluten-free. For two days now, he is refused to eat anything put in front of him. It does not matter how you cook the food or, how fancy you make it look in the plate or bowl. His weight is going down each day. He puts me in mind of a cigarette smoker; I got to have my cigarettes and nicotine or, I will surely die. So, I have decided to continue on as the doctor has suggested and, one of us is going to die. I will not give in to his wishes and, go back to the old way of eating food. Either he dies of starvation or, I die of aggrivation either way, one of us is going to die. I took down his list of favorite foods and bought the gluten-free version of the very same foods. He picks up the plate, smells it, and, picks up the food between two fingers and tests it. Then, he shoves it aside or out of his sight. He is complaining about his stomach being enpty but, still refuses to eat anything. He wasting ton of food that frankly cost 2 - 3 more times than ordinary food. How is he able to test this food, is pure smart mouth, I just do not understand his method. Well, I too am stuborn so, one of us is surely going to die for, I refuse to give up trying.

Who else is going through this pig-headed situation?

Remember he has full blown Autism, Mild Retardation, and Celiac Disease since birth and, he is newly diagnosed.

I have Celiac Disease, Hyperinsulinism, and Neuropath thing going on in addition to seizure ever once in a while.

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I know you will probably ignore this because several of us have made these suggestions before but:

What do his special Ed teachers at school say? Does he eat for them? Do they have some ideas you can try?

Don't make a fuss that food is gluten-free. Doesn't he eat anything that is naturally gluten-free that all people eat? Mashed potatoes, Ore Ida fries, applesauce, Chex cereal, chocolate pudding, strawberries? There are many things.

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Plain hamburger and rice, baked potatoes, ore ida fries, scrambled eggs, butterball turkey bacon, apples, bananas, gluten free chex cereals. On the cerals, make a big deal that you're giving him his regular cereal. But it dosen't have to be gluten free processed foods.

I am sure if you put something like that in front of him sooner or later he'll get hungry enough he will eat.

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I think I said to you before that I didn't understand why you think the kids can only eat packaged stuff that says gluten free. Seriously? He never eats ice cream, apples, popcorn, Fritos, cheese, peanut butter, carrots, raisins, grapes, tacos, hamburgers, beef stew, hot dogs, green beans, corn, fruit snacks, M&Ms, chocolate milk, fruit smoothies?

Not sure if he can have milk but I included it. I remember you aren't supposed to have milk but you drink it anyway.

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I have to agree with the other posters. There is tons of gluten free food out there that "normal" people eat. My father was very surprised to visit me last Thanksgiving only to discover that he really liked my food. But I didn't substitute things. I made fish, meat, veggies. My daughter (age 8) and I both found that just switching to the gluten free counterparts of our usual food still made us sick. Plus it's mostly gross. So here are some suggestions for things that don't take much time: scrambled eggs, cut up fruit and veggies, hamburger (a slight bummer as we eat them without buns), salmon with some lemon pepper takes 10 minutes in the oven on broil. Spinach pesto (spinach/basil/pine nuts/garlic/olive oil in food processor) with gluten free rice noodles....or over rice, or chicken. Potatoes are very easy...as is rice. I think as you get into this journey your definition of convenience changes. I can spend 8 hours a day in the kitchen if I let myself. So..I've listed for you a few of my easy meals. They still take time compared with opening a box and eating from it, but nobody should be eating like that. Even those who can tolerate gluten/dairy/corn/soy/"name your poison." Good luck

I also have to agree with Karen that enlisting outside help with this issue is probably the best way to go. I know it must be hard to have a child who is special needs who needs to adhere to this diet. Thankfully my daughter and I are on this journey together and It's nice that she understands why we're doing it.

eta: some of my daughter's snacks: Annie's gummy bunny snacks/fruit leather,lara bars,potato chips, sorbet, frozen grapes, spoon of peanut butter, rice chex with almond milk (check labels). She used to eat Envirokidz bars except we stopped b/c of soy. Still give these to neighbor kids and they love them. Fruit (obviously), veggies dipped in magic sauce (or olive oil and balsamic vinegar. If Mama has time it will also have proper seasonings like oregano, basil, garlic, onion powder)

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My kids have no idea that they eat gluten free. Even my 15 year old doesn't really know or care that 90% of his diet is gluten free (I have no control over the 10% he eats/buys outside the house).

Dinner for the past week has been:

Chicken nuggets, fries and tabouleh

Fried fish, rice and frozen corn

Pork tenderloin in the crock pot with an Asian peanut butter sauce, rice and cauliflower

Breakfast skillet with eggs, potatoes and sausage

Maple baked salmon, rice and grilled zucchini

Roast turkey, mashed potatoes, gravy and peas

Green Thai curry with rice and lots of vegetables (carrots, cauliflower, broccoli, baby corn)

Now these meals may or may not be the type of thing you eat but my point is that they are all either naturally gluten free or can be made so with really minor adjustments. I use gluten free panko crumbs for the chicken and fish, I make my fries from scratch, I make my tabouleh with quinoa instead of bulgar, thicken my gravy with potato flour instead of wheat flour and use wheat free tamari instead of soy sauce... other than that it's just regular food.

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I agree with everyone else. Try giving him REAL food, not the prepackaged gluten free substitutes. I would be doing the same thing as your son if you were trying to feed me that stuff. Prepackaged gluten-free mac and cheese is disgusting. Cookies and other gluten-free baked things do taste different and have a different texture. Give him things that are not different like carrots, apples, bananas, pudding, jello, salad, potatoes, green beans, chili, rice, corn, corn chips, chicken, steak, hamburger patty without a bun, etc. There MUST be something that he will eat that is just normal everyday food. If he has never tried any of these foods now is your chance to test it. He might just find new favorites that are naturally gluten-free.

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You have gotten some great advice from previous posters. If he is getting to the point where you can not handle him at all it is time to get his caseworker involved. You are in poor health yourself and this food fighting with him is not helping you. I would also suggest that you prepare his meals first so that you can eat them if he refuses or wrap them up and eat them yourself later. You do not need to prepare specialty gluten free food for him as the others have mentioned. If he refuses to eat even 'regular' food at this point you do really need to get his doctors and caseworkers involved. Perhaps with your health and his age a group home placement with others with his disabilities might be the way you have to go for now. You do not want to risk being charged with neglect by DSS so pull in some help now so they know you are doing all you can.

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All of your suggestions are good advise if, you were dealing with a normal Celiac child. Eggs, sausages, and gluten free breads would be nice, for breakfast. Oatmeal, fruits, and veggies would be nice as well. Thank you for your suggestion but, my son is not your tippical child.

Before, he was diagnosed, he had a problem with sugar from any source in his diet. It made him go into hyper-active mode. So, I had to cut back on sugar in his diet. He loved to eat pizza, burritos, and hot pockets. These contained wheat flour with other things, not on the Celiac diet list. He would have trouble going to the bathroon, on a daily basis. I had to slip suppositories up his behind ever three or four days. It was the gluten he was consuming on a daily basis that did this. He never would eat eggs, scrambled, boild, or fried ever. He would not drink milk once he was off the bottle. His teeth practically all came out in his very young years. He got no more than 10 teeth in his whole head. Myself and he have no jaw teeth what-so-ever in our head. We must either eat soft foods or grind up our foods in a blender.

We tried, Nestly's Quick strawberry drinks with milk and, it did not work. We did the fruit smooth thing as well and, that was a waste of time and money on him. Like, I said, I refuse to go back and feed him his favorite gluten laiden foods again.

If some had to quit smoking, they would not go back to smoking a cigarett every other day. That would be defeating the whole purpose of quiting. There was a time when, I use to eat eggs and have toast for breakfast until, they started making me really sick. Even as a child these things made me sick for 2 -3 years at a time, never did figure out why back then.

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Hi Karl, I think, i'm not for sure, that maybe you have misunderstood something? Corn, green beans, potatoes, plain brown rice, plain hamburger meat,plain chicken, these do not have gluten in them nor or they high in sugar. Plus you can mash them up for you to eat.

I am so sorry that the 2 of you are having such problems. I hope you can resolve these issues.

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So all he ever ate was pizza, burritos, and hot pockets? No fruit, no veggies, no hot dogs, no lunch meat, no cheese, no chicken, no ground beef, no cereals, no puddings, nothing? Just about anything can be cut up very small to make it easier to chew. You say one of the reasons why his diet was so limited was his teeth problems but those items he did eat need to be chewed especially the pizza and hot pockets. If he could chew those he can chew a piece of broiled chicken or some ground beef and potatos. If you are not able to cook whole foods for him that he will eat you seriously need to get some help with this beyond what we can give you if you want to keep your son alive.

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No one suggested that you feed him gluten foods. Surely he used to eat somethings that didn't have gluten. A parent wouldn't feed a child, Autistic or not, only things like pizza.

You have completely ignored the suggestions of getting some professional help from his teachers or a state social worker or his mother.

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I still think you really need to consult his special Ed teachers and any case worker he has. Here is a link to an Autism site with links to info about picky eaters. Some of these posts are several years old so I don't know if every link works. Autism sites might be of more help to you.

http://www.autism-pdd.net/forum/forum_posts.asp?TID=18317&PN=6&TPN=1

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You can still make pizza gluten free and such as well as many of his other favorite foods.

Have you tried rewarding him for eating new foods? It can be anything really like stickers for example. Have you tried making a big deal out of each and every new food he tries? Making them into fun shapes and such?

If that doesn't work, i would also suggest going to his special ED teachers or any other such people in his life and seeing if they have any ideas on what to do.

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Have any of you ever seen the film or movie, called 'Rain Man, by Dustan Hoffman?

On that film, he made it after months of studing Autistic Children and adults with Autism.

well, in the movie he wore only Fruit-of-deloom underwear. He also watched his favorite television program every day at the same time. His brother took him on a long road trip. When he could not get clean umderwear or see his favorite tv program, he went completely nuts and scream loudly and jumped up and down on the floor. He was a grown man but, he still acted that way, anyways.

Once, Autistic children fixate on a certain, program, clothing, or food, hell or high water will not change their minds or attitude. He is acting this way toward me at present time. He has fixated himself on certain foods in my house and will not deviate from that course. Those with Autistic Children, how did you get them to change their minds? What methods has worked for you? Pulling this Rain Man trick could casue him to harm himself or others around him. Should I have to go back to all those foods he use to eat, jus because he cannot accept anything new? If he himself does not choose the new food, he will not touch it absolutely.

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Karl, with all due respect, you need some outside help. Neither you, nor your son can EVER eat gluten again. Nobody on this board would ever advise that you feed him even a little bit. You've gotten a lot of great suggestions. If you can't get your son to eat this, I think you need a specialist to work with him. I'm exhausted at the end of the day just trying to get my daughter to eat fish before she eats dessert. I think we are very capable of suggesting delicious and easy gluten free options, but nobody seems equipped to tell you how to get your son to eat them.

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All I can say is wow, I have no other ideas except get him some profesional help from someone who deals with autistic children. I'm sorry karl, wish I could have been more help to you.

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Have any of you ever seen the film or movie, called 'Rain Man, by Dustan Hoffman?

On that film, he made it after months of studing Autistic Children and adults with Autism.

well, in the movie he wore only Fruit-of-deloom underwear. He also watched his favorite television program every day at the same time. His brother took him on a long road trip. When he could not get clean umderwear or see his favorite tv program, he went completely nuts and scream loudly and jumped up and down on the floor. He was a grown man but, he still acted that way, anyways.

Once, Autistic children fixate on a certain, program, clothing, or food, hell or high water will not change their minds or attitude. He is acting this way toward me at present time. He has fixated himself on certain foods in my house and will not deviate from that course. Those with Autistic Children, how did you get them to change their minds? What methods has worked for you? Pulling this Rain Man trick could casue him to harm himself or others around him. Should I have to go back to all those foods he use to eat, jus because he cannot accept anything new? If he himself does not choose the new food, he will not touch it absolutely.

Funny <_< i'm autistic (high functioning but still) and yes it was hard to change my eating habbits, but it is not impossible. I was like that when i was younger, however, if something was presented enough and say served differently (cucumber without skin as opposed to skin as an example) i would eat it.

Like i said, encourage him, perhaps even take him to the store with you (if possible) and have him 'help' you choose something new, let him be in somewhat control in that sense. Have him help you prepare it (again if possible), make it fun, make it exciting.

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Karl, I have no doubt that you are doing your best for your son. Autistic behavior is very difficult to deal with, and I have seen (and read about) the fixations you describe. They are very difficult to alter. I think it is time for you to consider getting more help for your son than you are able to give him, being not well yourself as well. There is specialized care available for autistic children and, as has been suggested by other posters, you probably need to access that help that your son obviously needs. No, you can't go back to giving him gluten because his behaviors will likely get more fixated. What assistance have you had in the past from any kind of social service? You need to contact these people again and get the help you need with your son.

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Karl,

This is not an Autism site. A few may have Autistic kids. I suggested the Autism site because they deal with kids with Autism everyday.

Honestly, if this is truly your life, you need to get help, right away. A Celiac Forum is not the professional Autism assistance you really need. Your refusing to get the help or ask for the help your child needs is bordering on child abuse/ neglect.

We can try to help you with things related to Celiac and gluten intolerance. His

Autism caused eating problems are not something we all know about.

Sorry if this sounds harsh, but there is a helpless kid involved.

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Karl,

This is not an Autism site. A few may have Autistic kids. I suggested the Autism site because they deal with kids with Autism everyday.

Honestly, if this is truly your life, you need to get help, right away. A Celiac Forum is not the professional Autism assistance you really need. Your refusing to get the help or ask for the help your child needs is bordering on child abuse/ neglect.

We can try to help you with things related to Celiac and gluten intolerance. His

Autism caused eating problems are not something we all know about.

Sorry if this sounds harsh, but there is a helpless kid involved.

Yes, it is not a website for Autism but, my son has both Celiac Disease and he has Autism at the same time. He deserves to be here the same as everyone else. Just because, he has additional medical issues does not me he does not have Celiac Disease.

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Yes, it is not a website for Autism but, my son has both Celiac Disease and he has Autism at the same time. He deserves to be here the same as everyone else. Just because, he has additional medical issues does not me he does not have Celiac Disease.

What I am trying to say is that we aren't here to help with the behavior issues from his Autism. Most of us know nothing about that, yet you keep insisting we should. We can help with food suggestions but he clearly needs more than all of us here can offer.

You have never said anything to the suggestions that you get help from his teachers and social services. I worry that you may not be using them. I worry about the boy's health and happiness.

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I'm going to add this one thing in the hope that it might clear things up a bit;

If someone came on this forum and wanted to know how to fix his car, 1 or 2 people might know how. Most of us wouldn't. The fact that the person who asked for help has Celiac doesn't have anything to do with it. We still can't tell him how to fix his car. We can sympathize, maybe tell him what we did when our car broke down. But in the end, he needs more assistance than we can give. He needs to consult a professional.

I really don't wish you any ill will, Karl. The only reason I have engaged with you for this long is that I am worried for you and the child. I fear there is nothing more I can add to this particular discussion.

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Yes, it is not a website for Autism but, my son has both Celiac Disease and he has Autism at the same time. He deserves to be here the same as everyone else. Just because, he has additional medical issues does not me he does not have Celiac Disease.

All we can tell you is how to deal with the celiac and of course you are welcome to whatever knowledge we have. Some of us may have some knowledge about autism and the problems that arise with it. I am one of them. That is why I am begging you to get outside assistance. I am sure you love your son and want him to be as healthy and happy as he can. It is apparent that you can not achieve this on your own. Dealing with someone as heavily impacted by autism as you say your son is, well it is not easy even for someone with special training and in good health. As someone mentioned not getting the help your son so desperately needs could be considered abuse or neglect. If he truly has not eaten in two days then you should take him to the hospital and explain what is going on. They will be able to help you.

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Have any of you ever seen the film or movie, called 'Rain Man, by Dustan Hoffman?

On that film, he made it after months of studing Autistic Children and adults with Autism.

well, in the movie he wore only Fruit-of-deloom underwear. He also watched his favorite television program every day at the same time. His brother took him on a long road trip. When he could not get clean umderwear or see his favorite tv program, he went completely nuts and scream loudly and jumped up and down on the floor. He was a grown man but, he still acted that way, anyways.

Once, Autistic children fixate on a certain, program, clothing, or food, hell or high water will not change their minds or attitude. He is acting this way toward me at present time. He has fixated himself on certain foods in my house and will not deviate from that course. Those with Autistic Children, how did you get them to change their minds? What methods has worked for you? Pulling this Rain Man trick could casue him to harm himself or others around him. Should I have to go back to all those foods he use to eat, jus because he cannot accept anything new? If he himself does not choose the new food, he will not touch it absolutely.

I have seen the movie, although it has been a long time. I do remember the final outcome of that film however was that Tom Cruise's character (the Rain Man's brother) had to leave his brother in the assisted living home (or whatever it is called) where he could get the most help. He learned that even though he wanted to take care of his brother for the money his brother had inherited, he loved his brother enough to admit that could not take care of his brother. Others here have already suggested that you need to get outside help and you have not responded to their suggestions. So perhaps you will respond to the movie example YOU gave to indicate how bad your son's behavior is. If he is that bad off then you need to get him some profesional help. We are not drs and cannot tell you how to respond to your son's autism in a way that would get him to eat. We can only suggest different foods to try, which you seem to be rejecting every suggestion. You need to get someone involved that knows about autism and celiac both and can work with you.

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