This morning The Boy asked for milk – demanded, is probably the better word. We ran out of milk last night and I was too tired to run out and get more. I don’t drink milk, and The Husband only drinks it with cookies. But The Boy – he can drink it all day long. Guzzling it straight from the carton (I know, kind of gross – we’re working on that). There are mornings when I wake up and find the refrigerator door open – the gallon of milk on the floor with the top off. And I know at some point during the middle of the night, The Boy woke up, walked to the kitchen, gulped down some milk and went back to bed.
Whenever I see him chugging his milk like a frat boy chugs beer, I can’t help but wonder if I should’ve have stuck to the GF/CF diet. Is milk doing his little body good? Or is it holding him back from further development? [According to one theory, some people with autism spectrum disorders cannot properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the person's behavior, perceptions, and responses to his environment. Some scientists now believe that peptides trigger an unusual immune system response in certain people.]
A few weeks after his original diagnosis (May 2008), I decided to try the diet. I went through my kitchen cabinets, cleaned out my refrigerator and went on a food shopping spree. Do you know what food products contain Casein or Gluten? EVERYTHING!
I read the nutrition labels of packages and opted for organic and all natural ingredients. So I replaced regular milk with Almond, Soy, Rice & Hemp – unsure of which The Boy would prefer. I purchased Tofutti (dairy free) ice cream and Gluten Free cereals. And eliminated a staple from his diet: The Peanut Butter and Jelly Sandwich.
Starting the diet was expensive – do you know how much a tiny carton of almond or rice milk costs? And living in the Bronx , GF/CF products were not only harder to find but more expensive. (Though, now as my neighborhood is becoming gentrified - there are more GF/CF options.) So I found myself food shopping in the city during my lunch hour and lugging bags home on my way home from work.
I wish I could say that starting the diet was the hardest part. But have you ever tried convincing an old school Puerto Rican grandmother that milk/milk products and bread needs to be eliminated from a child’s diet?
My mother and I disagree on a lot of things – almost everything. But this decision made Carmen crazy. (I often refer to my mother as Carmen, though not to her face – I’ll get slapped.)
“What do you mean no milk and bread? He needs his milk. You are taking away all the things he loves!” She yelled.
“He’s two Mother. He doesn’t know what he loves.”
“Hmpf…we’ll see.” And I knew this meant that when he was with Abuela, she would give him whatever he wanted – gluten free/casein free or not.
At the time, no one was supportive of my decision of going GF/CF. Not our pediatrician, not the ABA therapist, not my mother, some friends.
So after a few months of doing it (kind of half-ass), I gave up. He was making strides with the Early Intervention therapists and was about to start a center based program. And I didn’t know if his improvement was due to the therapy or the diet. So we went back to milk, ice cream and gluten filled cake. And secretly, since quitting I’ve carried this guilt around, feeling like a mother failure.
Like all else Autism – there is so much debate and nothing truly conclusive. Ask five different moms/doctors/therapists and you’ll get five different answers. So what is a mom to do? Give it another go? I know that if I decide to try it again, I need to give a full six months and document the results. And now that he's older and knows exactly what he likes and doesn't like - it will be so much harder. Am I ready for that? Am I selfish for not willing to commit and try again?
Would love to hear your thoughts/stories on living GF/CF!
You have to do what is best for your family. That isn't selfish. It's a huge commitment. It's not easy. It's expensive. But I have no choice, since we have actual allergies with wheat and dairy.ReplyDelete
Thank you! I've heard so many moms say it works and I feel like I should be doing it too. maybe it will help him focus more - don't even get started on poop issues. I've never had him tested - so what if he is allergic? I have to make an appointment. It's on the to-do list.ReplyDelete
Though I would like to start introducing things slowly just in case - I'm going to buy almond milk - see if he'll drink it.
My son in PDD/GDD and is on the GF/CF diet and I saw dramatic changes. I think my husband is PDD too because to this day he has a problem with eye contact. My son too had a problem with eye contact but when we started the diet from one day to the next he was making direct eye contact. He used to hum that all stopped as well with the change of diet. I am a big advocate for this diet but like you my mother was going to give "Mijito anything he wants." I walked in to my parents home one day and they are all outside eating ice cream sandwiched a double whammy. I pick my battles but this is one I will not waver from.ReplyDelete
Good for you! Autism is such a difficult thing to explain in Latino culture - the older generations do not get it. Even within my own generation there is denial, ignorance - it's sad. But I commend you for standing your ground. I know it's not easy to stand up to the elders. If I were to try it again, I think my mother would be a little more supportive. Let's hope :)ReplyDelete
Thanks and I keep telling my mom it is not about me or her it is about Logan (my son's name) his development is my main concern not her feelings or my comfort. They (my parents) are understanding and support me as much as they can. I did not think at the beginning that he would like the soy milk but that was the easy part it is the cookies, crackers, pretzels, and noodles that had me fighting a losing battle. But thank God for corn and potatoes Cheetoes and doritos are my best friends. Plus, sugar free drinks it is MSG and aspertane that have me vexed now. I find myself reading every body for their ingredience.
Like you, the idea of a complete lifestyle change is daunting. GF/CF diet is a difficult endeavor, and I admire you for even attempting it. I know my limitations and it's just not for me. Whichever way you opt to go, know that even in the eyes of THIS total stranger and mother of a 4 1/2 yr old with ASD, You are a formidable ally in this battle. You dont need to burden yourself with guilt if you don't see the diet through.ReplyDelete
I know that gluten and casein are in everything cuz I am allergic to them and must avoid them. It is hard! But the fact remains that many people are allergic to these substances because the human body just wasn't meant to digest a cow's food for baby cows or a product that until a few thousand years ago our bodies didn't have to contend with that is suddenly now a staple.ReplyDelete
This society does NOT make it easy but I for one feel healthier when I opt out and I have many converted (lol) friends who do too.
...and taste buds are easily trained.
You shouldn't feel like a failure at all, you tried to do something some don't even attempt and you can try to do it again by slowly introduce one item per month or something like that. I think the latino community overall has a hard time dealing with a lot of issues and I'm a latina saying that you do what's best for your child and it's yours and his father's decision not anyone elses grandma doesn't get a vote. A lot of times people of the older generation feel they know better, they don't always do. I've dealt with this and continue to and I stand my ground at the end of the day he's with you not them.ReplyDelete
The GFCF diet was very difficult when we started it with our son. My wife was so frustrated. Our son was such a picky eater; if he doesn't eat regular food, how will we find anything GFCF that he will eat? But, over time, it got easier. These days, it hardly seems like a burden with so many more choices available (though expensive, like you say). We saw significant positive changes after we started the diet, but who is to say that it wasn't a coincidence? If you do try it again, do keep data to see if you think it works for your son. And, hopefully, your mother will be supportive.ReplyDelete
Thank you all so much for your generous comments and suggestions!!ReplyDelete
I really need to think about this before starting again. It will be a complete life style change for us is we decide to go ahead.