On my mind.

Simon's diet. Sigh. No dairy is going pretty good - except for the occasional day when they will give him something at school. Looking forward to having him in a new school (even though we LOVE the teachers where he is now) with other kids on special diets. I pulled out Special Diets for Special Kids again last night to get myself back into the gluten free mindset. Right now Simon's diet consists of soy milk, OJ, popcorn, gluten-free cereal, crackers, oranges, apples, applesauce, french fries (natural ones :)), sugar free fruit pops, gluten free waffles, nitrate free hot dogs, bananas, peanut butter, refried beans (sometimes), corn tortilla chips...and probably a couple other things I am forgetting right now.


Are most two-three year olds like this?


I was reading in another autism book last night that as long as they are continuing to grow on the growth chart things should be fine. Even if they eat the same thing day after day. That made me feel a bit better, but still. Maybe I just need to get over it.


We have a woman that is coming to our house once a month (or more often if we need her) now that is an Autism specialist. She was here last week for a meeting with Chris and I to talk about what struggles we face with Simon in our home: things like eating, discipline, self-care (dressing, toothbrushing, bathing), schedules, etc. It was cool to meet with her - her goal is to give us practical ideas for ways to work with him, teach him, and help him become a successful little guy. It is like having a parenting teacher right here in our own house. She should be coming back this week to meet with us when Simon is here and help us make some positive changes for him. So very thankful for her.


I am feeling the need to get back into the autism books again. Figure out which ones I have not read and which ones I need to re-read. Sometimes things feel so normal around here that I forget that there are things I could be doing to make life better for Simon. I get distracted with my own stuff. Need to bring that whole balance thing back around again.

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35 thoughts

  1. cathy says…
    05/18/2005

    I forget, sometimes, that you are facing some major life changes...you know?
    As far as his variety of diet goes, Cole eats close to nothing. Peanut butter and jelly, cheese quesadillas, and salami, and pears, and cinnamon toast. That's pretty much it. Oh, and chocolate milk. Not much juice. And of course, candy and donuts when he can get it. He's small too. Still hasn't cracked the 40 pound mark, and he'll be six in a few months.
    So i think, even with autism aside, his diet is normal for kids his age, know what i mean?
    Thinking about you, babe. :)

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  2. judi says…
    05/18/2005

    Thanks for the diet book recommendation-seeing that Eddie is going through testing currently, with no concrete diagnosis yet-we chose to eliminate milk and switch to soy. We noticed an immediate improvement, but haven't gone full-force into a complete dairy/gluten free diet revamp. That book sounds extremely helpful and I'll be looking to pick that up.
    I'm currently reading "Facing Autism" by Lynn M. Hamilton and "Unraveling the Mystery of Autism and Pervasive Developmental Disorder" by Karyn Seroussi and am finding them both well written and informative.

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  3. Susan says…
    05/18/2005

    Ali, his diet sounds completely normal to me. I read somewhere that kids this age will often eat only 5-10 different foods.
    Speaking of autism books, I picked up a new book called "A Real Boy: A True Story of Autism, Early Intervention, and Recovery" by Christina Adams off the freebie table at work the other day. It was interesting to read. I'd be happy to forward it to you if you would like.

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  4. carie says…
    05/18/2005

    ali~when my little girl was learning those activities of daily living I made a little worksheet for her. She had fun doing it everyday. Here's what we did.
    1.) I photographed her doing each activity in a fun way....ie: holding her toothbrush & toothpaste, standing in front of her made bed, all dressed....
    2.) then I went into photoshop and created a very simple page... on the left side I put the photograph of her eating breakfast...then in a large cute font I wrote next to it...EAT BREAKFAST, then below that I did the next activity the photo of her brushing her teeth then the text....get it...
    She had so much fun each morning looking at the picture of herself to see what was next and then we would cheerfully run off to do each activity!
    Hope that helps...

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  5. Michelle says…
    05/18/2005

    Ali,
    Years ago, my pediatrician recommended a book "Child of Mine, Feeding with Love and Good Sense" - said it was the best book she'd ever read on children/diet/food and I completely agree. My daughter is 18 now and it helped me so much - I had to buy a new copy for my almost 4 year old son.
    Michelle

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  6. juliekins says…
    05/18/2005

    mine are all on special diets due to allergies, they can't have more than they can have, and it's frustrating. they handle it very well though. but it breaks my heart when they say "Is this safe for me?" and when I say no, they just nonchalantly walk away, no harm no foul.
    so i can commiserate with the feelings you must be going through, to a certain degree. Best of luck to you on this journey. You guys sound like the world's greatest parents, giving Simon the very best start in life, so that he can grow up happy and healthy.

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  7. Shelley R. says…
    05/18/2005

    Wow I love Carie's suggestion and may try that for Keagan who is turning six soon but needs a little re-direction doing his daily routine. Love the idea of the pictures.
    As for Simon's diet, when I was reading your list of foods I was thinking he sounds like he has quite a well rounded diet. You are doing well... don't doubt that! Yet, it is good to review those books we read on health and improvement since it is so easy to slip back to the old ways. Good luck!

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  8. donna says…
    05/18/2005

    when you figure out the potential secret to balance...would ya please clue me in. i give you credit for all that you are doing you stay strong my friend your doing all you can!! love ya

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  9. Leslie says…
    05/18/2005

    I love your comment about things feeling normal, and forgetting to make improvements. I feel that way constantly. Routine is so nice and comforting in so many ways . . . but I need to remind myself that things can always be improved upon!

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  10. Crystal Crossler says…
    05/18/2005

    Simon's diet sounds right on track. Peanut butter sandwiches are a daily staple food around here for David, as are apples, bananas, strawberries, oranges, dried cranberries, string cheese (haven't had to eliminate dairy), yogurt (only Vanilla, Key Lime or Orange Creamsicle though--can't have any fruit chunks in it), chicken, and we are just starting to eat 1-2 pieces of lettuce with dinner--a MAJOR victory!
    I've had to modify David's diet due to certain ingredients in food have impacted his behavior in a negative way. Imagine trying to reason or manage 3-year-old who was behaving a bit like a beligerent drunk. I've had to start buying Beeler's Hot Dogs (am going to start buying their bacon too), due to the nitrates and other preservatives. He can't have any red
    dye, and I try to stick as much as I can to natural food products. Rob calls me a closet hippie :), but he does recognize the difference in David's behavior when he eats a taboo food to when he eats foods that are better for him.
    I'm planning to go to the gourmet farmer's market at 5th Street Market in Eugene this Friday to see what yummy produce we can find.
    Happy Wednesday!
    ~cc

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  11. Denise says…
    05/18/2005

    Ali, I think Simon's diet sounds totally normal. My nephews eat the same things everyday. I think it's just the toddler mentality, you know?
    I totally understand the need for balance in his daily routine. Something that we call need to feel comfortable in our own home & daily activities.

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  12. maureen says…
    05/18/2005

    Are most two-three year olds like this?
    Mine is! He is awful! no meat, almost no veggies, only cheese once in a while and at that, it is only when the grocery store lady gives him a slice or grilled cheese. fruit but I can't let him have too much. He eats about the same thing every day.
    oj/diluted with water in the am
    about 1/2 a waffle and some sort of fruit for breakfast
    lunch is pb/j or pb/fluff (thanks to dad) or grilled cheese, and fruit
    dinner.....UGH! it's my worst mealwith him. he likes pasta, noodles, ummmmmm?????? not much! He also snacks a bit during the day and has apple juice once or twice a day highly diluted. That is about it....with some variation and he will occasionally eat a scrambled egg or toast. If we are lucky...he will eat maybe...and I mean MAYBE a bite of a burger but that is our extent of meat. It is such a struggle....my girls were not like this when they were little.
    I feel that as long as he is healthy and growing, he is fine, but it's still a struggle.
    Good luck with the food! Sorry for the book!

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  13. Dawn says…
    05/18/2005

    well i have to say that being a child development major & having done 4 years working in a daycare setting with the 6 weeks-3 years set (mostly with the 12-24 month-ers though), the vast majority get into kicks like that where they have limited diets...and don't seem to care!! i would get deathly sick of eating the same 5 things over & over but...LOL
    i don't actually do work in a child development related field (unless you count working for a company that is 97% men to be "working with children" lol) but i receive emails & keep up with things because it interests me. i read this article the other day--and being as up on this stuff as you are, you may have already been aware of this--or maybe it's less of interest to you since Simon is a little older now but here's the link anyway. =)
    http://parentcenter.babycenter.com/news/archive.jhtml?id=524907&i=8

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  14. Lou says…
    05/18/2005

    would you mind sharing with me where you buy nitrate free hotdogs??? Jonas loves those but I am very hesitant to feed them to him.

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  15. Julie says…
    05/18/2005

    Ali - Simon's diet sounds very normal, actually very healthy compared to my boys. They eat waffles or french toast, school lunch and dinner is either chicken fingers or grilled cheese. Hardly any fruits or veggies.
    My oldest (6) was just diagnosed with childhood depression and his therapist recommended I get him off of all processed foods. Thanks for putting the link to the diet book in your blog - I am going to order that today and see if eliminating gluten helps his depression. At the very least I need some good kid recipies to get them to eat fruit and veggies!
    You sound like an awesome Mom to Simon :) Things like this are so hard to deal with. My son's therapist always tells me to take care of him AND to remember to take care of YOU.
    I say the same to you :)

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  16. Lisa Sigler says…
    05/18/2005

    I have grown kids and now grandkids and it sounds pretty normal. My 3 year old grandson is just now starting to "try" some new things but I think he ate enough peanut butter to last a lifetime over the last year or so.
    I didn't realize that Simon had autism. I'm very sorry to hear this. I know it will present some real challenges for you but you'll do fine. There is a lot of support out there so don't be shy! Good luck with your improvements and changes. I think you will do great! Your a great MOM! Just looking at your pages tells me that!
    L.

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  17. KimP says…
    05/18/2005

    Ali - don't sweat Simon's diet. His diet looks good to me - pretty varied - a mix of textures - pretty much what all pre-schoolers eat. If he's growing, he's getting what he needs.
    No veggies is ok if he eats fruits. Protein is tough - those chicken nuggets in Lisa's book are good. Gotta love the Van's gluten free frozen waffles and Gorilla Munch cereal (yeah - my kiddos' love sugar cereal) You might want to try the Vance's Dari-Free instead of/as well as soymilk (it's potato based and you mix it up yourself - it's also great for cooking). Stay strong and take care of yourself.
    PS - What's going on with your house? Is it still for sale?

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  18. heather says…
    05/18/2005

    Ali, my first child was very much like Simon, food-wise. Even at close to 9, it's very hard to get him to try anything new. I keep telling him he can't only eat nuggets and quesadillas when he's 25! My other 2, I was much more insistant what they ate when they were little, and they've been better about eating adult foods. My youngest is 3 1/2 and I've always had her eat off my plate and that seems to have helped the toddler mentality (although she still loves kid food too).
    The 9 yr old . . .when he hit 4.5, he started trying new things, very slowly. His newest things are shrimp and spinach, which have made his favorites list.

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  19. tt says…
    05/18/2005

    yes, most three year olds are like that.
    and i am the same way with mckenna and her autism. the good thing is, we carry on normally, the bad thing is, we dont always do everything we could to help her through the day. instead picking the way WE want to do it, even if it is harder for her.
    her teachers would tell me-good. thats what we want you to do. she has to be as normal as possible, and if you cater to her every quirky whim, that will never happen. and i totally agree with that. but at the same time, i feel like she is the way she is. nothing is going to change that. will it make it better or harder for her in the long run if we cater to certain quirks? i dont know. constant question, struggle in my head. i dont know.
    half the time i dont even feel like the mother of an autistic kid. just mckenna, you know?
    the burn is defining her for me more then the autism ever did. its interesting actually.

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  20. Janine says…
    05/18/2005

    My 2 year old eats macaroni cheese, raisins and cheese, apples and cheese, just cheese, toast and cheese....you get the picture! I'm pretty sure though that he isn't going to fade away. Simon sounds like he's a pretty balanced eater - don't fret!

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  21. kellicrowe says…
    05/18/2005

    My son, about to turn 8, started out on that same diet too.
    It gets way easier.
    He went from Autism to Sensory disorder to Asperger's in diagnosis.
    Now he remembers what he can have way better than I do.
    AND - we have been able to lighten up too. Incidental glutons in food don't bug him any more.
    AND - our whole famity eats heathier.
    Westec Vanilla Soy Shake - in a box - yum.
    Isn't haveing the specailist the best??
    We have a Developmental Peditrician who is so supportive of David...but of my husband and me too.
    I wish every parent had a medical professional (or some one in authority that we as parents look to) to pat them on the back and tell them they are doing a good job!
    The eating Chicken while reading Go Dog Go in the CK LO - adorable:)
    kellicrowe

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  22. Sue says…
    05/18/2005

    Hi Ali,
    Here is a link to a good "gluten free" web resource http://www.celiac.com/
    My sister has celiac disease and it is critical for her to remain gluten free... there is hidden gluten in lots of products including things as seemingly benign as soy sauce (it is brewed from wheat).
    Simon's situation is less dire than my sister's, but Celiac.com have a really good guide to gluten free foods, foods that contain hidden gluten and a dining out guide that lists restaurants that are conscious of special diets and can actually tell you what food products are used in preparation of their meals. The Celiac foundation has similar resources too.
    It sounds simple, but you'd be surprised!
    Best wishes as you proceed!
    Sue

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  23. Pam says…
    05/18/2005

    Hey Ali!! We have Sean on this card system now.. I will have to email it to you!!
    Pam

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  24. StephG says…
    05/18/2005

    Another great book is Catherine Maurice's book, "Let Me Hear Your Voice." It is not about a diet, but autism.

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  25. Courtney says…
    05/18/2005

    Hi Ali!
    First let me say that you are an amazing spirit! I love all that you create, your layouts are amazing and I think you may have turned me on to art journaling as well! I discovered your blog thru 2 peas the other day and have been hooked!
    I wanted to share my experiences first as a sister to a little boy with autism (now a strapping 17 yr old with autism) and as a pre-K teacher to 2-4 yr olds with developmental delays and other issues. First as a sister, my brother, Bernie is a very picky eater who is a vegetarian that has only eaten a few choice things over the course of his life. Now, he is the size of a small forward or running back and still only eats veggie chicken patties and potatoes...do not worry! Bernie was small at first, he was born at 16oz.(he was a preemie, born at 30 weeks) and was always a little below the averages in height and weight but he was always consistent on the growth charts.
    Then when he turned 15 he grew six inches and gained about 30lbs. in a year. Now, he is now right in the middle of the average size and weight. All that, and he still only eats about five different things...
    As a pre-K teacher, I have several students with autism and I have seen a major change in their language, behavior, etc... after certain dietary changes have been made. It is very hard for the parents and (occasionally) very hard for us at school but with the changes in development and the ensuing progress, it is well worth it!
    I hope that I have provided you with some insight...I also have some great web resources if you are ever interested...I teach at a center school for students with developmental delays and disabilities in Tallahassee, Florida.
    Have a wonderful evening, and keep creating, I can't wait to see what you do next!
    Courtney Benedix

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