Highly Involved Autism Parenting, Jenny/Ozzy Style
One non-intended side effect of Jenny McCarthy’s transformation (repackaging?) into autism mother is the variety of topics now seemingly up for grabs to discuss along with autism. For instance, Ozzy Osbourne, into whom one can become by (a McCarthy has said that she has done) taking one’s child (not one’s own) seizure medication.
As my son is on the gluten-free casein-free diet (and has been since he was 2 years old, with occasional “dietary infractions), I have made it a policy to try many non-wheat and non-dairy foods to see what I wish for him to eat tastes like. (And I have concluded, there’s nothing like actual mozzarella on actual pizza—tofu is for stir-fry with a good black bean sauce, forget the soy cheese product). However, trying Charlie’s medications to see the effects seems a somewhat risky endeavor: My neurology is certainly not the same as his, and he’s a child (I guess that should be so obvious); different medications have different effects on different people. With all due respects to Osbourne, and to McCarthy herself, being an autism parent I have to think twice about putting myself into any altered states of mind.
But I guess if you are “going the distance” (like a mythological hero, Disney style), you’ve got to do what you’ve got to do to be involved.
And perhaps it’s not so odd to mention Osbourne and autism, if you’re talking heavy metal, or metals…………..
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POSTED IN: Food and Diet, Medicine, Movies
23 opinions for Highly Involved Autism Parenting, Jenny/Ozzy Style
Cliff
Sep 29, 2007 at 1:55 pm
I never really knew about the gluten-casein free diet. I respect that it might do something for some, but personally I don’t feel any worse when I eat bread or mozzarella (usually better), and I’m self-aware enough that I’m sure I would pick up on that. On the other hand, it’s not dangerous, so if you feel it works for you absolutely go for it.
I did get a SSRI when I was 14 or so, but to me that seemed to be as typical in a sense as for other kids my age who get a SSRI. I wouldn’t give it to someone who couldn’t talk, though, and probably not to a kid in general.
And if you’re going to medicate, autistics are hard to medicate, as they are resistant to some medications at certain times and very sensitive to others (I don’t take that much of the SSRI and it still works, but various aspirins are pretty useless (in fact, I think I would overdose on Tylenol before anything happened)).
Cliff
VAB
Sep 29, 2007 at 1:57 pm
Actually, that doesn’t sound so dumb. I think if more parents tried Ritalin, for example, they’d be less eager to hop their kids up on speed. There is a tradition, in psychiatry, of giving patients drugs that make them feel either high or awful or both, simply because shuts them up. Most people have no idea how nasty these things are. True, you will not have exactly the same effect if you don’t have the condition it’s being prescribed for, but it will give you a general idea.
Kristina Chew, PhD
Sep 29, 2007 at 2:05 pm
My husband has been on Ritalin, and another relative on Prozac, Paxil, Seroquel, and those reactions have been helpful. But I still am wary of altering my neurological functioning (it has been suggested to me that I try Charlie’s medications myself).
Charlie seems—seems—to get immediately more hyper after eating bread, but then again, just eating in general seems to have the same reaction. I’m willing to alter my mindset on this……….
KimJ
Sep 29, 2007 at 2:16 pm
Along that line of thinking, I wouldn’t give my son anything that I wouldn’t take myself. He’s as bad as me with pills. I wouldn’t eat the GF/CF diet.
When I was a teen, my mom took me to an “herbologist” who determined my dosage with the “muscle test” and looking at my irises. This resulted in 30+ large pills at a time every day. They were hard to swallow and nearly as bad in the burp. I was scolded for balking at this regimen because they were so expensive. But they didn’t have to take take them.
Cliff
Sep 29, 2007 at 2:20 pm
It never seemed to bother me personally, but I’ve only been introduced through Charlie through a blog, so I’d hardly be sure about his case. I’ve read others thought it did something, so it may well be that there is something involved there. It’s just never had a negative effect on me.
As far as food is concerned, I would say that paying attention to rougher or certain “rubbery” (this is hard to explain; it’s not present in scallops, but it’s present in a McDonald’s hamburger) is probably the most important factor. Now, here’s the catch; Charlie, if he is anything like me, may be sensitive enough that anything is going to trigger that feeling of a “bad” sensory food. I didn’t get to enjoy food as much as I do now because it all felt weird and kinda painful in my mouth. The flavor was the decision maker then, but when I turned 8-9 or so I suddenly didn’t have that feeling with certain foods, so I started to eat those foods a whole lot more and started disliking foods I had liked before.
Cliff
Kristina Chew, PhD
Sep 29, 2007 at 2:38 pm
The gluten-free casein-free diet also was not that hard to implement as our usual diet is “vaguely Asian”—-it’s a bit rice-centric. But the notion of staying away from “rubbery” food intrigues……. The truth about the special diet for Charlie is that it’s not about cure or recovery, and we stray away from it.
Chuck
Sep 29, 2007 at 4:53 pm
If a diet isn’t important and has no positive physical or physiological effects, then why be on it?
Style » Highly Involved Autism Parenting, Jenny/Ozzy Style
Sep 29, 2007 at 5:18 pm
[…] Anthony St. Clair wrote an interesting post today onHere’s a quick excerptBut I guess if you are “going the distance” (like a mythological hero, Disney style), you’ve got to do what you’ve got to do to be involved. And perhaps it’s not so odd to mention Osbourne and autism, if you’re talking heavy metal, … […]
Kristina Chew, PhD
Sep 29, 2007 at 10:14 pm
Cultural preference for rice—-sticky rice stuffing planned for Thanksgiving.
AJ
Sep 29, 2007 at 11:40 pm
My understanding is that any child–NT or not–is going to be “hopped up” after eating….whether it’s from the natural sugars in fruit or vegetables, carbs, or protein. They get that surge of energy right after dinner (even without dessert), and have to have a little time to run it off before bed.
We certainly experience that around here….NT or ASD! (Yikes.)
Kristina Chew, PhD
Sep 30, 2007 at 12:08 am
We had some soy ice cream in the freezer and I was sure Charlie was going to want some after showering but he did not even ask—just wanted his blankets on his bed and is sound asleep. And Jim and I have agreed, sometimes it just seems as if food causes him to be over-excited (and happy). (While my college students are always completely lacking in energy after lunch…….)
Melanie, Bobby's mom
Oct 1, 2007 at 8:56 am
My boy has always loved to eat but is very restricted in preferences, so to me the thought of starting the GFCF diet is quite intimidating with all the extra shopping and home-made foods (Martha Stewart I am NOT). Pizza is his number one preferred food, which in our house is pizza sauce on toast with cheese with baby food carrots hidden in the sauce, and yogurt with cottage cheese is the number two food.
But, he’s plateaued recently in several areas while the stimming (i.e. slamming doors until the walls rattle) has just jumped up (dunno why), so I’m thinking it’s time to add something else in the regime. Hubby has asked about the diet, too, so we’re researching it. It does seem like the diet would be beneficial to a pre-diabetic parent, though.
Kristina, I like your description of a “vaguely-Asian” diet. Have you had to make a lot of changes? Everything he eats or experiences makes Bobby hyper as far as I can tell - he’s the Energizer Bunny - so pulling one item versus the other from his diet and tracking changes will be very interesting, to say the least.
Leanne
Oct 1, 2007 at 9:45 am
Patrick doesn’t change at all with his diet, except for chemical additives (Aspartame especially) and nitrates. So basically we stay away from most pre-packaged or processed foods. I tend to figure that’s probably good for the whole family and don’t find it too inconvenient.
My thought has always been this. I’m sure some people have serious reactions to certain foods. But I doubt it’s really connected to autism. You can have an NT who’s Celiac and you can have an Autistic who does better on GFCF. I think it’s important to personalize any approach.
julie
Oct 1, 2007 at 9:59 am
Rebekah does not have any dairy in her diet when she was a baby it would make her physically ill then we were told that she outgrew the allergy that she had. I am not sure if it is related to the autism or just that it does not make her feel well when she eats it and has a hard time communicating that to us other than through her behavior, but we did track it and after dairy she does not attemt to communicate as she does when not on the dairy.
Regan
Oct 1, 2007 at 10:16 am
Looking at J. McCarthy’s account, I am glad that she added the note, “not something that I would recommend”.
(If she had concerns about the medication the question that leapt to mind was why not do as is usually recommended, call the prescribing doctor and pharmacist?)
Although there is some debate on the meds themselves and whether it is the right one, etc., I think that it is really dumb to take someone else’s prescription drug, even good intentions granted, just to try it out–without a medical knowledge of dosage, interactions with physiology and other medications. If it is one of the controlled substances, such as ritalin or adderall is, it is also illegal.
athina
Oct 1, 2007 at 10:37 am
I had thougths of implementing CFGF diet to my son, but that’s what they remained, thoughts! All he eats is cookies (not home-made, he wouldn’t even touch them!). How can you implement any kind of diet to a child who is the world’s most stubborn picky-eater? He also eats yoghurt, so this makes two out of two. Any suggestion on that?
Kristina Chew, PhD
Oct 1, 2007 at 3:27 pm
There is soy yogurt but it’s different taste and texture —-knowing about the diet has simply made me more aware of what my son eats and how it effects him. Have you ever done a “new foods” program?
celeste
Oct 6, 2007 at 10:09 am
I dont have an opinion , but I have a question!!!!
Mnay of them my son is ten he is diagnosed with PDD I have been reaching the CFGF diet and pondering whether or not to try it. I called his doc. to order an allergy test to see if he’s allergic to casein or gluten - its like they’ve never heard of such a thing . They mentioned the celiac test is that what Im looking for?
celeste
Oct 6, 2007 at 10:13 am
Also, my son is extremly picky, he eats only, fries,chicken,pasta,bread and freeze pops or and cookies! I wonder how he will react to not having theese foods becuz its all he has . he has no social set ups he goes to school and he here at home thast the exstent of his life . His treats are his life!!! Wow thats not good huh?
KimJ
Oct 6, 2007 at 11:14 am
Yes, it’s the celiac test (coeliac).
Kristina Chew, PhD
Oct 6, 2007 at 11:24 am
Hi Celeste—Some autistic kids have been shown to be intolerant to gluten: Here’s some information on testing from the gluten intolerance group of North America; a blood test is involved. There are gluten-free equivalents for all those foods that your son likes, though the bread is not the same—-but fries are generally all right, and there are gluten-free breadcrumbs to make things like chicken nuggets. You can buy those, and some crackers that my son is very fond of at Conrad Mills:
http://tinyurl.com/2g6tko
This website also has a lot of gluten-free and casein-free products.
http://missroben.com/
It might be a lot easier (on him, on you!) to remove dairy products. These definitely have a negative effect on my son’s stomach; this website has a lot of information about the diet:
http://www.gfcfdiet.com
We did a “new foods” program with my son to help him try new things. My son loves to eat, too, and we try to get him to exercise—-walking, swimming. I know what you mean about not wanting to take away treats; we taught Charlie to try other things (fruits, vegetables) by having him take one bite of the new food, one of the old. It was a very gradual process!
Cliff
Oct 6, 2007 at 3:12 pm
In so far as the pickiness, I was like that as well (in degree, though I don’t remember exactly all I ate; that was a long time ago!). If his experience resembles mine, things will change, and he may grow to dislike many of the foods he only ate! It’s not that different from a neurotypical, except it is contignent on texture development and in a desensitization of taste (which was much more prominent for me than my NT sister or brother).
Cliff
Elly Tucker
Nov 5, 2007 at 4:07 pm
I just wanted to let you know about Cathy Bollinger. She is a singer/songwriter and has been commisioned to write a CD for kids with autism. MY TURN YOUR TURN: Songs for Building Social Skills was her first….
About MY TURN YOUR TURN…do you know any kids that would be in need of social skills. How about learning some simple tools with tunes? That is MY TURN YOUR TURN: Songs for Building Social Skills. From the first, great note to the last bouncing beat, Cathy Bollinger the singer songwriter takes children and their parents on the path toward giving concrete examples of things they might do to help ask if they can play, learning steps in taking turns, asking for help, and realizing their own strengths…. all specific skills they can learn with examples. There is varied instrumentation and rhythms and the parents will like this as much as the kids will.
and
Ready to Learn! Songs for School Success was her next one. Cathy has written these tunes for use in today’s everyday world. These multisensory songs, ranging from snazzy to jazzy, will help your child and/or student have success in school, through repetition of basic living skills: those of listening, following directions, using friendly manners towards others, focusing on their work, transitioning from one activity to another, and lining up. Plus, TWO bonus tracks are included for a quick reminder or cue to line up or to change activities. These songs are great for schools and for homeschools too!
Thanks for letting me share this with you.
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