Our Canadian doctor of Chinese medicine recommended we get some supplements (which for this law or that, she can’t ship) from a local doctor whom she recommended. So we went to the local doctor, and she said she would handle Riley’s situation differently, with different supplements, and she explained why. So we were put in this awful position of having to choose whose ideas to go with. And since Riley’s anxiety has been out of control, and it would make sense to have someone local to go to, we went with the local doctor. Which felt like betraying our Canadian doctor whom I love so much.
I was so confused and torn.
The local doctor wants us to go wheat free/dairy free again. I explained we’d already done this for a year and a half, with no gains, but she said given Riley’s propensity for constipation if she misses even two doses of magnesium, she does not believe her gut is healed. She thinks with the right combinations of healing supplements, and a GF/CF diet, we might have better results, and also reduce Riley’s anxiety.
Since Seth has issues as well, we will be doing the diet as a family.
So I have been tearing up the kitchen again and feeling utterly overwhelmed. Due to our kids’ health issues we already eat really, really well. No high fructose corn syrup. No chemicals. No preservatives or food dyes. Almost 100% organic.
The GF/CF diet is much easier now than it was even five years ago. So much more is avaiable in the stores and on-line in terms of ideas and recipies and support.
My kids really didn’t bat an eye when we told them. They don’t balk at the special diets at all. Granted it’s because I bust my tail to provide yummy alternatives to anything they could possibly want.
But I’ve been sooo very overwhelmed.
Part of it is the extent of Riley’s anxiety lately. I am worn out. I seriously feel PTSD from clay and cello classes and Girls On the Run and the now abandoned martial arts this season. She screams like Jamie Lee Curtis in Halloween, over the most trivial seeming things. Todd and I are limping along, coming up enough to gulp a breath of air before going under again. We watched the movie Horse Boy the other night (I’ll blog more about that beautiful film later) and the term “emotional incontinence” came up. It fits her. It really does. There is no filter.
So it’s been stressful, but really? If it was just us I wouldn’t be so overwhelmed about the diet. Why am I freaking out?
I’ve spent some time with this question, and basically it’s the perceived judgements from others. As if we’re doing this to be difficult. Or grasping at futile interventions. Or making a big deal out of nothing.
I’ve seen the eye rolls.
I smell the disapproval.
And you know what?
I don’t get it. How you could judge parents for trying to help their children, by whatever means. Especially through something as innocuous as dietary changes and healthy eating?
That is screwed up.
So another opportunity presents itself for me to heal, and put more emotional distance between me and those who do not support us as we do our very best to parent these beautiful kiddos.
Parents of kids on the spectrum need support. Period.
Let freedom ring.
I’m curious: why does the local doctor think GFCF will help heal the gut? Know that I ask this in a non-judgmental way – I currently have Charlotte on a GFCFSF and a few other Frees diet and I too think her gut is damaged. I just want to know why this doctor thinks that GFCF is part of the healing process of the gut.
I agree with everything you wrote in your post. Every time I see a news headline or blog post about how GFCF does nothing for ASD kids, I cringe. It has done a lot for my daughter (nothing along the lines of recovery – more just general feeling better, I think). I feel the judgment and eye-rolling too.
Would love to talk to you more about this.
What are people thinking? As if you would NOT try something if you thought it might help! Even something that requires label reading and conscientiousness…..Oh, my. I hope that Riley’s emotions settle as summer unfolds. The stirrings of hormonal changes are being felt in our home; poor hombre thinks it’s bad now, but he has no idea what he’s in for when all 3 of us sync up!
I think you’re right about the PTSD. I joke about it, but it’s SO real. STM and I were just talking about it again the other day.
Let freedom ring.
YAMH.
What you’re doing is hard enough without the added burden of judgment. I’m so sorry. Here’s to freedom of all kinds. Love.
I did the strict diet for three years with my son. It worked well for us. He’s eased back onto gluten this year. My in-laws would say “wow, he’s so lucky you did all of this for him” and five minutes later say “do you think this is all necessary.” I found this hard but there is lots of support out there for what you’re trying. And tons of good food. At the end of the day, at the very least, you’re feeding your kids well. BTW, we also used lots of supplements to help heal the gut including glutenagenics from metagenics.
Good Fountain,
Here is a website that might help answer your questions:
http://www.gfcfdiet.com/TheBigFAQ's.htm
Also, I would recommend reading Elaine Gotschall’s Breaking the Vicious Cycle.
Behind you all the way.
Can you hear that? In the distance? Yes, it’s Julie Andrews singing, “Climb Every Mountain.”
I know you’re tired. I know you’re stressed and worried and frazzled. Of course you are.
Among all the things to be concerned about, the smell of others’ disapproval is simply not on the list.
That disapproval stinks.
You do what you do. You do whatever you can to help your children. Anyone who doesn’t understand can go pound salt. Give me some addresses–I’ll FedEx the Morton’s, wherever it needs to go.
Love.
We’re gluten, dairy, and corn free. Doing this makes it possible for my son to function. I makes no difference what anyone else thinks about what we do because no one has to live my life, no one else has to bear the weight of the emotional incontinence, if you will. At the end of the day, we all want the same thing, for our children to have the best overall quality of life possible. If my family was eating the Standard American Diet dinner would be easier (and cheaper) but we would be horribly miserable. Corn is a huge problem for my guy (HUGE) and we also linked some of his stuff to phenol sulfotransferase deficiency (in short, why epsom salts baths work for some of our kids). Feel free to e-mail me any time if you need more support, recipes, a bit of kvetching, etc.
I’m gluten free. I wish I could be CF too, because I know it’s bad for my stomach if nothing else, but it’s just too hard right now. I can see a big difference in being GF, and for now, I’ll stick with that.
The judgment thing is difficult. Because we don’t have any answers and we want to help our kids. One of the wisest woman I’ve known had a great line for people who keep offering fixes: “Right now, I really need support, not advice. I hope you can understand.”
((hugs))
It’s funny – I find the judgement goes both ways. I got a rash of sh-t not long ago from a woman whose son went to school with my daughter. She was AGHAST that we had not pursued chelation and that she was NOT on a GFCF diet. Our kids are so different – their needs, their strengths, their challenges. This ain’t one size fits all. (it’s usually one size fits one!)
Good luck with the diet!
Oh, I like Brenda’s line for givers of unsolicited advice.
After those luscious organic-food-coop pics you posted a few months back, I’d eat at your house any day, GFCF or whatever you’re putting on the table!
Hang in there.
with you, girl. full of support, freedom, GFCF recipes, and admiration for how well you love your beautiful kiddos.
You both are good parents. No matter what you do, someone will find fault with it. I know; I get those looks also.
It’s so lousy for people to judge about the GF/CF diet. It really helps many children. I hope things go well for you this time around with it!
Well, I have to say I had our two on the gf/cf diet when they were little but as they got bigger they were able to manage the proteins and now we’re just on a whole food diet (easier to say that than what I don’t feed them!)
Just recently I have had to go wheat free as I noticed it really wasn’t doing me any favours at all. The sense of having a blockage was so horrible I can’t tell you. I could feel it going through me to the point I could point to it. For a sensitive person like Riley I could see this would be horrendous and no wonder she’s “cranky” and getting so distressed. Having comfortable innerds will make so much difference.
As for the ignorance of others (for that is what it is, they just don’t know), well, you’re only following a healthy diet the way we all should be and if they don’t believe it they should try it and feel the difference.
Sure does sound like you could use a break tho’! Sending love hugs and happy thoughts to you and yours
X
Oh and wasn’t the Horse Boy film AMAZING? I read the book and some of it I thought “Yeah right!” but there it was on the big screen. amazing. I still think they were off their heads brave-mental going on a trip like that….and still going on trips around the world with him….good on ’em!! 😀
Oh, the judgment. It comes from every corner, doesn’t it?
I’m sorry you feel judged.
Love you just the way you are.
xo
Hi Michelle – My name is Nathan and I am a producer creating a documentary for The History Channel on the history of cursing / swearing. I loved your 2006 article about your children and swearing, it’s perfectly relevant to our documentary. I have tried other means of getting in touch with you, to no avail, and it seems this is my best chance. Please call me at 212.763.3602 or 347.263.6111 to speak about your involvement.
Thanks and hoping to hear from you.
Nathan
I don’t understand parents who don’t pursue diets and biomed. Bottom line they are lazy if you ask me since it helps many kids and is just a healthy way to live. Those who keep shoving their kids full of Oreos, ice cream and Skittles are puzzling. One really has to wonder why parents do this and why they can’t see that it’s bound to affect their child’s behavior.
Julie,
We’re all trying to do what we feel is best for our kids.
Attacking and judging other parents is never helpful.
That’s kind of the whole point of this post.
Julie,
If i’ve learned anything in this journey its that i have no bloody right to judge anyone else’s parenting. period. And they have no right to judge mine.
every kid on the spectrum is unique, and frankly some things don’t work for all kids. I cannot imagine that there is a parent out there that isn’t trying their best.
Michelle,
I hope this round of GFCF brings wonders to your sweet girl. I started reading about ya’ll right about the time you brought Jingle home and now I check back in almost daily.
Best,
Joy
You are such a good mom. You and HT work through all the pros and cons and make the best decisions possible with the information you have. That should be enough for all of us. All I can say is, good luck with the new regimen. May it be far easier this go-round, and may you get the results you so desperately need. I pray for angels ever at your side, giving you just the right response to get through this moment and the next, helping Riley as well, and creating opportunities for plenty of rest, respite and full-belly laughter. (Thinking Laughing Buddha.)
No judgment here. The Roc definitely has food issues, no doubt about it, so I totally get it. It’s health we’re after. He is SUPER regular now with good gut flora–and it shows.
It’s overwhelming, but doable and the results can sometimes be surprising.
Good luck! Looking forward to hearing about the journey!
Especially loved this sentence: So another opportunity presents itself for me to heal, and put more emotional distance between me and those who do not support us as we do our very best to parent these beautiful kiddos. Only thing I’d add to that is “and take care of ourselves.” Keep listening to your GUT!
I love that you take the time to analyze why you’re feeling the way you are. And I love that, this time around, things have gotten easier. I know that, for us, finding gluten-free products has gotten so much easier, and the ones that are out there are so much better than some of the ones we first encountered.
Good luck, my friend.
Hey Michelle, I’m sorry you are feeling so stressed over this decision. If you were in LA, no one would even bat an eyelash about going GFCF as it is commonplace here for both kids and adults. You are right that there are so many good GF products now. Even Trader Joe’s carries options, as do many of the local grocery stores, (at least out here they do), in addition to the usual suspects such as Whole Fds and health fd stores.
I went GFCFSF + caffeine/alcohol free for over 6 mos a few years ago, and have been back on it (off it) for the past 2 mos after my back went out again. I can’t tell you how great I feel and how the clean diet supports the body’s healing tremendously. As my doc explains, if your body is already inflamed, it doesn’t make sense to consume foods that inflame an already inflamed situation.
After a while you just start to rethink how you eat…whole grains like millet, quinoa, br rice, fresh fish and poultry, simmering your own dried legumes, ample fresh veggies, fruit, soups, frittatas, lettuce wraps, rice or quinoa pasta, everything over a bed of greens, or wrapped in soft corn tacos or rice paper rolls. I personally stuck with rice milk, but there’s also almond milk and dairy-free soy products. I was also able to buy fresh young (white) coconuts at our local farmer’s mkt. (You can also try an asian mkt.) The liquid is said to be very healing. Once you suck out all the juice with a straw, you can scoop out the inner flesh with a spoon, which is soft, not at all like a dried brown coconut. There is an awesome frozen GFCF ice cream line made with coconut milk by Coconut Bliss. Oh and Lara Bars are good to pack in a backpack or purse, as are baggies of raw almonds and dried apricots to snack on. My body tolerated dark chocolate (in small amts) if it was over 70% pure cocoa. A little bit of that with some dried cherries is heaven.
Anyway, I am here to tell you it is so doable. After a while you lose your cravings, and even your taste for sweet lessens significantly as your body cleanses it out. You work around baked goods or find alternatives. You add flavors with fresh herbs and spices. You eat close to the land and what is in season. No matter what Riley is going through, this “cleanse” of the diet will support her health.
If you need menu ideas, or support, you can email me. I also have a background as a chef. 🙂 gomama@mac.com
I hope this isn’t tmi. Just wanted to support you in your process. Anyway, as to other ppl’s eye-rolling, it’s for your family’s health. Who the F cares what they think. More importantly, if it can support Riley and Seth, that’s what matters.
Carry on Michelle!
After re-reading your initial post more carefully, I realized my previous long-winded suggestions are probably unnecessary as I see you’ve already done the gf/cf diet for a year and a half, so you obviously don’t need help doing it.
The only thing I want to add is that if you are maxed out right now, and who wouldn’t be in your situation, perhaps even the decision to follow the local doctor’s advice might seem conflicted, let alone futile. Maybe it’s time for another appt with the medical intuitive to find out the best approach for Riley right now. I also have someone who might be able to shed light…
Hi Michelle, feel free to call on me anytime for a few good GF/CF recipes. I have a few up my sleeve!
I’m gonna let it rip, because I’m tired and frustrated and because its time for some good old fashioned truth. Screw anyone who rolls their eyes at you. Screw them. You are an amazing family trying to get through a very tough condition. (Can I use that word?) Anyway, I am amazed at what you do for Riley, Seth, and your marriage, and what you do for you. Every day is a challenge, and I know the life. I live it. And if you find someone who can give you a reasonable thing to try to make it better, make the river less turbulent, then GO FOR IT! Full soul ahead. The western medical community does nearly nothing for our kids but throw stupid medications at them that mess with all their systems and have to be tweaked and adjusted and don’t work and yadda yadda. You go Michelle. I’m in your corner, and if someone rolls their sorry eyes at you, because they more than likely spoil their children because they are guilty about putting them in day care and they will be the destruction of our civilization as we used to know it, you hand them my number and I’ll give them a piece of my mind.
Was that too truthful?
You go girl!
“You roll your eyes at my Michele, I will roll those eyes back in your head permanently!” haha Let me at ’em.
This is how I explain the “extra work” of a special diet – compared to how it was dealing with my boys pre-diet, cooking everything from scratch is a picnic. (Okay it not really a picnic, but you get my drift.)