A Letter To My Son w/ Severe Autism: Can you try these 4 new foods? PLEASE! :)
June 4, 2012
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Now Reading: A Letter To My Son w/ Severe Autism: Can you try these 4 new foods? PLEASE! :)
June 4, 2012
I know you’re not a huge fan of eating as it is. I get it. Eating is just not your thing.
But you’ve lost 10% of your body weight once before and Mommy worked her ass off putting those pounds back on.
So now that we’ve got you back to your 7 year old weight it’s time to move up. Your 9 years old now buddy and in the 25th percentile for weight at your age.
But that’s not what this letter is truly about. This letter is to tell you how much easier you’ll make mommy & daddy’s lives if you add 3, ok maybe 4 new foods to your repertoire.
These are 4 foods that are part of your family culture. If you want to be part of our Italian family these are 4 foods that you need to
start liking ASAP!
You know how much easier our lives would be if you liked pizza? Pizza is served at EVERY kids birthday party and you see most of the other kids happily munching on it. Why not give it a try?
Also pizza is part of the fabric of your extended family. Saturday night pizza nights after church are a long standing tradition on daddy’s side of the family (even though daddy stopped going to church a LONG time ago).
And you know on mommys side of the family that your Uncle Joe makes delicious homemade pizza and they have pizza nights at their house about 5-6x a year. Mommy and daddy are tired of carrying popcorn & hot dogs to the pizza nights!
2) BUNS & ROLLS
I know your receptive language isn’t great but you must be able to pick up how much your “Peepa” (mommy’s daddy) LOVES having buns and rolls at his house on 5-6 Sunday mornings a year! Mother’s Day, Fathers Day, etc he gets so excited about having his whole family over for jelly donuts, fresh bakery rolls, danishes, etc and he’s always asking “Buns & rolls, Sunday at 10am. What does Kyle like?” I would LOVE to one day say “get Kyle a jelly donut and a crumb bun. He loves those”. It would make Peepa (and mom & dad) SO happy to see you dive in and eat a jelly donut with gusto.
3) PASTA / MACARONI
You’re getting a lot better about this. You’ve been ok with the Mac & cheese once in awhile but it’s hit or miss. But your mommy and your “Meema” and your grandma are all great Italian cooks and they all make awesome marinara sauce and gravy and they would LOVE to see you elbow deep in a bowl of pasta with tomato sauce all
over your face.
4) CHINESE FOOD
Ok, this one is for to make daddy happy. Mommy doesn’t like Chinese food all that much, but it is part of the fabric of daddy’s side of the family. It is somewhat of a family tradition… Daddy grew up with Sunday afternoon dinners at a Chinese restaraunt about twice a month. And your grandma is always inviting us to go and we usually say no.
Remember we went a few weeks back? You were pretty good buddy and you ate those crispy soup noodles with gusto, but Mommy & daddy still had to bring cheerios & popcorn to supplement your meal.
It would mean so much to daddy and grandma to see you eat some sesame chicken and fried rice!
That’s it buddy! If you could add those 4 new foods to your repertoire you’d make mommy and daddy SO happy and make our lives SO much easier!
So what do you say? We wouldnt even care if you used utensils or sat at the table. Just wander around the house or bd party or restaraunt eating one of these new foods is all we ask.
So, whataya think?
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
32 People Replies to “A Letter To My Son w/ Severe Autism: Can you try these 4 new foods? PLEASE! :)”
I am going through the same thing, Justin will only eat grits, egg yoke with sugar, pizza, tacos, spinach, hawaiian buns and cranberry juice.
My son likes juice mostly V8 Fusion strawberry/banana so I bought a Vitamix and make him spinach, carrot, strawberry & banana drink and mix in the V8. It is thin since I use water and it tastes like the V8. It is the ONLY veggies he gets in his system. He will not eat fruit or veggies on their own. I just can't say enough about the Vitamix. You can create so many things and mix in healthy foods and they would never know.
My son is 12 with autism. We have the same problem with food. My son is becoming over weight because he only likes to eat pizza with red sauce no cheese. No pasta, but lots of bread! I try to buy gluten free but he will not eat all GF items. Most items need to be crunchy. He seems to get very silly after eating pizza. They always say they crave what they should not eat because it is most likely causing inflammation. I feel your struggle! Feeding therapy has helped him try other foods. I wish I had the answers…
My son does not eat at all. Extreme oral sensory issues. He has a feeding tube. We wish he would eat. He is 23 years old so it probably won't happen.
My son has HFA and was diagnosed by our current pediatrician as having an aversion to textures with failure to thrive just before his 2nd birthday. This was after months of asking our initial pediatrician why he wouldn't eat and why he wouldn't transition to solid foods. Our initial pediatrician told me I was babying him too much and that I wasn't trying hard enough. Looking back, this was our first sign of autism and its related conditions.
Well, he turns 10 in a couple of weeks, and he will still only eat blended foods. We've had him in almost every feeding program known and are wait listed for those we haven't yet tried, and we've made very little progress in the 8 years since diagnosis. I can't help but wonder if things would have been different if he'd have been diagnosed at 6 months when this first started.
With that, I certainly know how you feel. There is no such thing as a spontaneous dinner out or over at a friend or family members house. We might do ok if they have a blender and some of the foods he'll eat, but if not, it's either a trip to the store, or a trip home. Whenever we travel, we have to load up our Magic Bullet blender, the foods he'll eat, and mix his meals for the day in our hotel room. I have about every type of ice packs, insulated lunch bags, etc. since I'm almost always carrying some of his food with me – just in case we want to try for that "spontaneous" meal out.
At some point, we'll have to just say it is what it is and move on. But he's very aware that socially his eating is very different from everyone else, and he struggles with trying so hard to do something that is so incredibly difficult for him versus always standing out as different in yet another area. He's not ready to give up yet, so we keep going.
Not sure what the answer is, but I can definitely relate to your post.
We had real problems with my son's diet or lack of it when he was younger. He is severely autistic and was completely non verbal till he was 6 years old (he is 13 now) and although he has very good expressive language now 90% is non functional and his level of understanding is low. He was assessed a couple of years ago and his functional age was 3 years and 1 month old, don't ask me how the speach and language therapist came up with that exact age but she was really experienced and came highly recommended, we thought that his understanding level was round about that age , it did give us some peace of mind to know this especially when dealing with certain people who don't understand autism…
Back to not eating.. My son now eats most foods now but it took about 6 or 7 years of hard stressful and sometimes tearful mealtimes, and that was just to get him to eat the 2 or3 things he liked… One day at a Christmas dinner in my sons school my wife and I were eating our very delicious steak pie and mash with veg and Peter asked if he could have some, we just looked at each other.
"you know the way you look at each other when our kids do something that really surprises us"
Now 5 years on he is eating mostly anything we give him … I know its hard work and we have so many other problems to deal with but keep the autism faith "as I call it" that some things will get better because now and again ours and their hard work pays off.
Dude my 4 yr old dose not each much either it worries me cause so much smaller than the other kids.
Check out Body by Vi Shakes…(Protien drinks).Safe for kids & packed full of healthy veggies & fruits…google it! My autistic grandson loves them and there has been testimonials about how much they have helped children in the spectrum.
I work in a chinese food restaurant. If he will eat chicken nuggets, fried shrimp get him sweet and sour chicken or shrimp with no sauce or sauce on the side, no veggies. What you end up with is chicken nuggets or fried shrimp. I have a regular customer who has a son who has autism and we can get him to eat this. and he will eat fried rice no veggies or eggs.
All the foods you listed are linked to increasing glutamate/glutamine in the human brain, so all I can say is please be careful. Higher levels of glutamate in brain are linked to more seizure activity in autism.
This time my son kristian 11years old, very hard to feed him, specially when having sickness,eat a little, drink a little, good if have everything,not all the time i provide him pizza, pasta/macaroni, bunwich too, eat so much as if i will get that for him…pity for him, weight loss have to be patience in evrything.
Thank you! I see all the time people complaining about how 'picky' their kids are because they don't like say..broccoli…but this is so far beyond picky. Every mealtime is a struggle….and food/cooking/eating is HUGE for our whole family. I mean hubby is a cook for crying out loud and if I could have afforded it I'd have gone to culinary school. So to have a child that won't eat. Not even 'normal kid food' can be so frustrating! And the weight issue! DS has gained a whopping 4 pounds in the 3 years since his 18 month check-up. (it was up to 5 pounds 2 months ago, but apparently he's dropped again). Thank God he was a huge 18 month old. To anon, that posted about the OT eating program. We started that with my son, but he refused to eat anything on his plate or even be able to sit at the table if we leave food he doesn't like on his plate. So after about a week of him not eating, we had to give up on that. He's spotty with the mac'n'cheese as well…I about threw a party last week when he ate 4 bites before a sudden meltdown where we had to get it off his plate ASAP. *sigh* anyway, it's just nice to know I'm not alone, although I hope your son starts eating better soon.
Chinese food? I think you have a shot at the others, but I'm sorry to say, I don't things are looking good in the Chinese food department for you:)
My son is 12 somewhe in the middle of the spectrum and slowly making food gains. When he was little we could count on one hand what he would eat and like so many other people carried food wherever we went. When he was about 7 we started an OT feeding program with him. First he was encouraged to tolerate a new food next to his plate, then on, the touch it, then kiss it, touch it to the tongue and eventfully take a bite. It was a very, very long process, but he finally started trying new foods. Now he eats salad (lettuce only), grapes, apples, bananas, carrots (he doesn't really like them), pasta (Alfredo, Mac & cheese, lo mien), burritos (!), and rice and beans (!!!). That's in addition to what he ate before. It's a vast improvement. We still push new foods all the time, including only allowing hot lunch at school instead of sending it. We were fortunate that his teachers were on board with that and helped a lot. Of course he's always had an appetite and has always been big for his age (5'9" and 170lbs). However,I would encourage anyone who can to try a feeding program. It can't hurt and very well might help.
Oh gawd, the food issue…(screams and runs away) XXX
My son is 7 and has many sensory issues orally. He is quite limited in foods and this also becomes a problem in terms of trying to give any meds. We have tried it ALL!!!!! Can't hide it in anything either. We have to do IV or supositories for any meds. Anyone else experience this problem? When I have explained sensory integration disorder to several Docs in the past they look at me like I'm nuts, getting really tired of that. Any thoughts 🙂
They dont get the sensory integration, and it amazes me how each dr has a different diagnosis. After us and teachers filling out forms and then them spending two hours with him they act like they know all a out him, not a clue what like is like for him or us, thanks giving coming again, 5 years now and getting ready to pack his supplements,nuggets,chips or popcorn cause he would NEVER tryany new food and is quick to tell me and same problems with meds.
Dylan was also very limited in what he would eat. We switched him off of Milk and switched him to Silk and he now eats bananas, apples, grapes, and is more willing to at least try new foods! We haven't cut out dairy completely and give him a little milk here and there but I have really seen a big difference.
My DS8 has Asperger's, ADHD, and is seriously underweight (at 54" he weighs almost 50#). He used to be extremely picky. A nutritionist told us that 90% of kids like DS8 had an undiagnosed dairy allergy. We'd done a scratch test already, which was fine, and I wasn't about to change his diet when he barely ate anything. But I did ask his allergist to do the blood test. Turns out he has a moderate allergy to milk. After cutting milk, his appetite picked up enormously. He was able to cut the second dose of Prilosec. He tries new foods now. He even told me "there's a pain in my stomach that feels better when I eat. I think that's hunger!"
The bad news is, he's eating like a cow and still not gaining weight. At all. It's so frustrating. He has Ulcerative Colitis, maybe that has something to do with it. It's amazing to see him put away 8 pop tarts, 2 PB/honey sandwiches, broccoli, 4 hot dogs (no bun), blueberries, and lots of water, in one day (more than he used to eat in 3 days!) and not gaIn.
it's always something.
Oh, and my kiddo hates pizza. Jelly donuts. Loves pasta if it's mixed with seafood and non-dairy "butter".
This sounds like my son when he was young. We found that his gut was inflamed and needed to be healed to absorb nutrients. He also needed probiotics to help his gut. It was making him want to eat to many carbs. Which was creating too much yeast and thrush.
Hello, have you tried a reduced gluten diet on the same bais? 🙂 glad to hear the milk helped
Our 8 year old son has problem keeping weight on when he is on the focus medicines. We give him periactin. It is a prescription antihistimine. It has worked well for Alex.
I do hope you read my comment here yesterday.Appetite has been a serious issue with me all of my life.I know all too well what it's like not to want to eat.The great thing about being an adult,is you can go days without eating if you want.Even a week or two,and not feel hungry,or crave food.Sorry dad,but you don't always outgrow this.I have been anexoric my whole life.Not a good thing,when you have celiac,get lots of severe infections,and have problems with homocysteine.
I know there are the usual reasons people talk about,like sensory problems with some foods.That is definitely a part of it,but not the main part.The main part for me,is just that you never have have a desire to eat.It may have something to do with the fact that a lot of people with autism,have a smaller hypothalamus than normal.This is the part of your brain that controls appetite.I always wonder about all those fat people you see with Asperger's,or mild autism.There is definitely a wasting syndrome in autism,even when there are no medical problems,it's just that doctors don't recognize it.It's definitely brain related.
I have never tried marijuana.In the past,when my doctors have talked about how dangerously underweight I am,I have begged them to give me Marinol,or some other prescription appetite stimulant used in AIDS or cancer,they said they could not do it,because I don't have AIDS or cancer.It sucks royally.I wish there was something you could buy,legally,without a prescription.
Wish mine would eat too! Sadly she won't touch pedisure do she has chocolate milk a few times a day instead of meals,
Lol my 3 to has a similar issue. He survived for about 3 months on pediasure and nothing else. Skinny as can be bc he won't eat hardly anything. Our 5 yo is a self made vegetarian. Only eats fruits, veggies, and bread. Very picky eaters. Lol we'll keep our fingers crossed for you though!!!!
Its nice to know that we're not the only ones w/ food issues or a desire for our children to eat more normal or typical foods. My son will only eat 2 of your 4 food desires. I would give just about anything for mine to eat ANY kind of fruit or vegetable!! Not a single one…not even french fries…not that I would really call those vegetables, but you get what I mean. My purse always has supplemental foods in it and we get the looks from the wait staff when we don't order anything for him to eat. Needless to say we actually don't eat out much. My son doesn't sit still or quiet enough to enjoy to many meals out. Good luck w/ your new foods endeavor!! We've just started a new feeding program w/ our ABA and I'm hoping to get some items checked off of my food wish list 🙂
Have you tried just the noodles? Just plain cooked pasta? Our daughter will only eat plain noodles with a sprinkle of salt on them. No sauce, no butter, no oil. And she likes to slurp them, so I get linquini because it is a more sturdy noodle for slurping.
Sounds like a day at our house! I completely understand. My little girl only eats yogurt and snack crackers.
The only Chinese food my son will eat is beef teriyaki. If he likes chicken nuggets you might try sweet and sour chicken but hold the sweet and sour. My daughter enjoys the plain chicken. Good luck! Nancy
Awwww, I hope he adds those things too. we're very fortunate, that eating isn't an issue for my little guy..it's hard enough as it is!
Oh, and I LOVE all those foods, so set an extra place at the table for me!!! Hahaha
I am right there with you. Riley won't eat anything. He used to eat mac-n-cheese and pizza but no more. Now it's pretty much oatmeal, cheerios, baby food in a pouch, and pediasure. I would be thrilled if this kid would eat a pb&j or really anything. It is a constant battle to keep weight on him.
Food has always been an issue for my son, however, he will eat all of the 4 foods listed above. Pizza (just the bread and possibly a smearing of the red stuff) pasta (did you know that there is a difference between pasta, noodles and macaroni?) Will eat Monkey bread (caramel drizzled pull bread) he also love the inner parts of Italian bread. Chinese food (orange chicken!!!!) What he will not eat is a vegetable other than french fries and onion rings. He is in the 98% for weight and BMI although his tegretol likely has something to do with that. Good luck on this one!!