Off Gfcf Diet And Other Stuff About My Aspie Son!!!!

Lounge By jonahsmom Updated 4 Jun 2010 , 4:22am by chelleb1974

jonahsmom Posted 30 May 2010 , 2:56pm
post #1 of 16

Okay, so I know I'm totally not the talk of this place, but I just had to share.

Our son Jonah is high functioning autistic and has been on a gluten-casein free diet for about 2ish years (maybe a little longer). Anyway, we only have one place in town to buy some of the staples in his diet, like GFCF Vans Waffles. Well, now they have stopped carrying them! They do that all the time! We get used to buying something, Jonah really likes it, and they stop carrying it! Boo. thumbsdown.gif

So, after your child has been on the diet for a while, from what I've discussed with other parents after a year or two, you can slowly go off the diet to see if it causes a regression in behaviors, etc.

So - on Sunday we were officially off the diet!!!!! It has been a week since he started eating all "regular" food and we haven't seen any problems yet. I know that you can start noticing problems within a day, or it can take 1-2 months for it to cause problems, but I'm hopeful that we'll be able to stay off the diet.

He is soooo happy to be eating school lunch! It's funny - he begged on his first day of school after going off the diet to eat it. I never would've done that as a child!!!! He never complained about his special diet, would tell people he couldn't eat certain things, etc., so I was surprised at how happy he is to be eating regular food! In fact, when we first suggested it to him he said "No way! I wanna stay on my special diet!"

Wish us luck over the next couple of months - and hope for us that he doesn't have to go back on it!!!!

Oh, btw, he is finishing up his first grade year and is reading at a 3rd grade level!!! He's awesome at math and all the kids (and teachers!) are amazed at how smart he is about natural disasters and space (two of his very obvious obsessions!). His only academic problem is writing - he's been tested and has dysgraphia. So writing is a HUGE problem and will cripple his education if we don't work really hard with it over the summer. One of his therapists is getting us a ton of activities to work with him on and we're going to work REALLY hard this summer. I just wish we could get him to understand how smart he is. I don't know where he hears this (maybe tv), but he keeps saying how stupid he is. It drives me nuts because he will NOT listen when we all say how smart he is. I know his aspergers commonly causes self-esteem issues, but I want him to grow up knowing how awesome he is, so we tell him all the time. I just hope one of these days he believes us!!!!

Geesh! I can't believe how long that was! icon_redface.gif Imagine living with me!!! icon_biggrin.gif

15 replies
prterrell Posted 30 May 2010 , 11:09pm
post #2 of 16

Could you teach him to type? If so, you would then be able to get a modification for him where he is able to type all of his work and have a laptop computer instead of a notebook and pencil. Just a thought.

Anyway, I'm so glad to hear your son is doing so well!

Occther Posted 30 May 2010 , 11:11pm
post #3 of 16

Too cool that he is now eating "regular" food with no adverse side effects. I am an occupational therapist and used to provide some school-based services. Has your therapist recommended "Handwriting without Tears?" If not, it is an excellent program and would worth checking into.

jonahsmom Posted 30 May 2010 , 11:37pm
post #4 of 16

Yep! We're going to teach him to type (or have someone else do it! I'm a terrible teacher, I take too many things forgranted that I just DO without thinking about it - kwim?!) I actually type way faster than I can write and prefer to type out anything that I have to respond to. I get frustrated myself because I can't write very quickly without REALLY thinking about it, so I know where his frustration comes from. I've just had YEARS to work on my response to that frustration! He hasn't had that time, so he gets upset really quickly.

And the OT at school gave me the website for handwriting without tears so I'm definitely going to be checking that out. Haven't yet, but will. She said it is something that could be beneficial for him.

We've also talked about having him dictate his answers, which he has already done on occasion to his associate, so that was an intervention that was already in place.

Thanks for the suggestions! icon_smile.gif

Doug Posted 30 May 2010 , 11:44pm
post #5 of 16

handwriting is OVER rated.

really now -- just how much do you REALLY have to handwrite?

PRINTING via hand or printer is much more the norm.

Fill out forms by printing or typing

even notes can be hand printed or typed.

his notes are his notes -- who cares what they look like so long as HE can read them and understand them.

AND -- very few teachers will complain about a nicely typed assignment --- SOOOOOOO much easier to read and grade.

the only places it really counts -- math and tests that are T/F, matching, fill-in/label

and with EC modifications -- can get a scribe for both of them or at least for math and allow laptop for everything else.


My 8th grade English teacher called my parents and INSISTED they get me a typewriter. Been typing ever since (and my handwriting makes a doctor's look beautiful)

prterrell Posted 31 May 2010 , 6:06pm
post #6 of 16

There are a lot of great typing programs that you can either download off the internet or purchase the disks for use at home that are geared towards teaching kids. The typing/computer instructor at the school most likely could reccommend some to you.

cakesbycathy Posted 31 May 2010 , 11:33pm
post #7 of 16

The Handwriting without Tears program is really great.

I just saw an article on the internet where they said that diet didn't seem to make a difference with special needs kids.

jonahsmom Posted 31 May 2010 , 11:37pm
post #8 of 16

As far as diet NOT helping special needs kids...

It slays me when people make those decisions without personal knowledge and experience on the subject.

Not wanting to get into a big argument...that's all I'm going to say! icon_biggrin.gif

prterrell Posted 31 May 2010 , 11:38pm
post #9 of 16
Originally Posted by cakesbycathy

I just saw an article on the internet where they said that diet didn't seem to make a difference with special needs kids.

You can read an argument for or against anything on the internet.

ksmith1012 Posted 1 Jun 2010 , 12:56am
post #10 of 16

Hi Jonahsmom!

My younger brother has asperger's, so I know exactly where you are coming from! He wasn't diagnosed until he was around 10 or 11, so I am very happy for you that they were able to diagnose your son earlier! I don't really have any advice about the diet, etc, but I thought I would just let you know someone else is out there who knows what you're going through! Blessings to you and your family! icon_smile.gif

ladyellam Posted 1 Jun 2010 , 2:14am
post #11 of 16

My son (PDD-NOS) who is 5 HATES to write or draw. Give him a laptop and he's a hell of a speller and painter. He would make me click on the mouse to do his favourite games and finally I looked at him and told him "If Andrew wants game, Andrew types or uses the mouse" and I walked off. I turned the corner and watched him. It took a little bit but now he's a pro. He can spell at a 7th grade level (will just rattle off the letters) and reads at a 3rd grade.

We never had him on a special diet--we tried it and it just didn't work for us. I'm so glad you are able to give him school lunches! I can just imagine the smile that put on his face!

I hope it continues to go well for you. It brought a smile to my face reading your post. icon_biggrin.gif

redpanda Posted 1 Jun 2010 , 9:11am
post #12 of 16

My 17 year old ds also has a diagnosis of AS. His elementary school used Handwriting Without Tears, which probably did make things easier, but to be honest, I think he hasn't used cursive since leaving elementary school. The only time he has problems is when he has to read notes written in cursive, for example on school papers or notes from me on his whiteboard.

Typing games definitely do help, as does online chat, if you can find a safe environment for your son to do that. DS had a very close friend move away, and he found he could keep in touch really well using IM/chat.

There is son is just finishing up 11th grade, and I saw him taking notes while having a discussion with someone who was brainstorming ideas with him for choir fundraisers. As soon as they left, he typed the notes, while they were fresh in his memory.

I sometimes look at ds and am amazed at how far he has come. Now if I could just get him to clean his room...

jonahsmom Posted 1 Jun 2010 , 1:08pm
post #13 of 16

Thank you so much for the encouragement everyone!!!! It really does help to hear from others in similar situations.

I am in such awe over how smart Jonah is. Really the only hurdle (non-behaviorally anyway) is his writing. Once we can figure out a work around or figure out how to help him with it he will amaze me even more than he already does!!!

Thanks CC buddies!

KHalstead Posted 2 Jun 2010 , 9:27pm
post #14 of 16

Just wanted to add that I was a teacher at a private school 2 yrs. in a row and was in the "senior high" room (which is 9-12 grades) and there was a particular student in there who I was VERY fond of...he was super funny and just plain cracked me up all day long. Anyhow.......about 4 months into the school year his mom asked me how things were going and if her DS was causing me any problems? I said, of course not...he's a PLEASURE to be around, he's hilarious and very respectful and so on........she said "oh good, glad to hear it.....with his condition, we never know if it's going to be a problematic year when there is someone new with him"...I said......"condition?"

Mom says yeah he has AS......I tell ya.......I had NO CLUE! I knew he took medication once during the school day, but didn't know what it was for and honestly didn't notice he was any different than any other teenage boy!!!

BakingGirl Posted 3 Jun 2010 , 3:38am
post #15 of 16

My son has dyspraxia (motor skill learning difficulty) and he is using the Handwriting without Tears program. He still really struggles with writing but the program has helped a lot. I am just looking forward to him being able to learn to type, I am sure he will never look back.

chelleb1974 Posted 4 Jun 2010 , 4:22am
post #16 of 16

I have a friend who's youngest (now 9) was diagnosed as PDD-NOS at the age of 2, and by accident my friend ran across the GFCF diet online. She read and researched everything she could and immediately put him on it, despite his pediatrician's doubt as to whether it would work.

She saw a change in him within a month, and today you'd never know he was the same kid! You can tell when he get's even a few crumbs of something (if someone isn't watching where they put food), the change only takes hours to be noticed. He is also allergic to soy, so that has limited what she can buy for him also.

For some it works, for some it doesn't. My friend (and me too) are glad it worked for her son. Neither one of us can imagine how things would be if she hadn't found it and followed it religiously these last 7 yrs.


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