As any parent knows, whenever something is wrong with your child, you want to help them; you want to “fix” the problem. If they are sick, you rush to a computer and Google the symptoms, or call a friend for advice, or take them to the doctor.
You work the problem and attempt to solve it ASAP.
Imagine this feeling multiplied by 1000 when you find out your child has Autism.
You want to help him; you want to “fix” him, but you don’t know how. You haven’t yet comprehended that there is no quick “fix” to Autism because you don’t know enough about it. In fact, you don’t know anything about Autism, and that just makes it worse.
Through my Special Education studies, four commonalities of special-needs’ parents reactions to their children’s diagnoses are as follows:
1. Special needs parents usually have an overwhelming desire to “fix” their children.
2. Special needs parents usually have an overwhelming desire to “fix” their children NOW.
3. Special needs parents very often dive into popular “fad” treatments for their children, which offer a “quick fix,” vs. opting for more valid and reliable, evidence-based interventions.
4. These “quick fixes” can be harmful if not approached with caution…..
I am 100% guilty of every single one of these, and here’s how.
In 2007, Gabriel was three years old and we had just learned he had Autism. At that time, I was an Elementary teacher but with zero special education training. We were also living in Abu Dhabi, and had NOwhere official to turn for help with him. Our school (a national Emirati school) had no special education resources or knowledge, and we had a local “speech therapist” tell us that Gabriel wasn’t speaking because he was watching too much TV. (SMH)
So, frantic and obviously on my own, I did what I believe most parents would do when they learn that their child has a disability – I googled it. I desperately wanted to help him, and I wanted something that would help him not now, but yesterday.
But rather than being patient, thorough, and conducting solid research on evidence-based practices surrounding Autism, I googled “Autism,” and one of the first things that came up in the search was Jenny McCarthy’s new book about her son with Autism.
(Yeah, Jenny McCarthy, the former Playboy Bunny and host of the MTV show: Singled Out).
The summary of her book promised a quick fix to how she essentially “cured” her son with Autism. Sweet! She’s a famous actress. She MUST know exactly what she’s talking about. I’ll follow her lead and have Gabriel CURED in a month or less!
(PS – There is no cure for Autism.)
I immediately bought her audio book and listened to it in one afternoon.
Turned out, her miracle cure was placing her son on a gluten-free/casein-free (GFCF) diet.
She said that when she eliminated these things from her son’s diet, his speech drastically improved, his shaking (aka – stimming) greatly decreased, and he became more coherent and generally more “normal.”
In her defense, she did make the valid point that not all children might react the same as Evan (her son) did, and provided a full disclaimer that she wasn’t a doctor and was speaking from purely personal experience as a mom.
But I didn’t hear any of that.
All I heard was the word, “normal,” and a seemingly simple way to achieve it.
I finished the book, then promptly announced to Daniel that we were starting Gabriel on a GFCF diet today.
Now. Most children with Autism are extremely picky eaters – and Gabriel was NO exception.
Much of this has to do with their senses. Autism can greatly enhance a person’s sensory perception; which is why a semi-loud sound to a neurotypical person can sound like an atomic bomb to someone with Autism.
Feeling the crunch of a chip between an Autistic person’s teeth may, to them, be the equivalent of someone scratching their fingernails down a chalkboard.
So things like food smells, temperatures, and textures are HUGE factors in determining whether or not a food is appealing to a person with Autism – and because of this, their food aversions may not necessarily exist merely by personal choice or preference.
And the opposite holds true for the foods they like: when they find foods that mesh well with their sensory needs, they can seem addicted to them.
So with this in mind, the following were pretty much the only foods that Gabriel would eat at that time:
- Cereal with milk
- Mac & Cheese
- Chocolate milk
- CHOCOLATE ICE CREAM (addiction alert!)
- He would’ve eaten nothing else if we’d allowed it….
Yep, so EVERY SINGLE ONE of the above food items either had gluten and/or casein in them. So in order to follow this diet, we were going to have to eliminate ALL of his favorite foods; pretty much everything he was willing to eat.
I foolishly figured that if he got hungry enough, he would eat what we gave him, and it would be an adjustment for him, but it would be worth it because he might be “cured” of his Autism.
Another problem was, we didn’t have a lot of organic food options where we could try and substitute normal pancakes for, say, gluten-free pancakes. Whole Foods, Trader Joe’s and iherb.com did not exist in the Middle East back then.
So there was NO planning, other than my looking up foods with gluten and casein, writing them all down on a list, placing the list on the refrigerator, and proudly proclaiming all of those foods off limits.
We started offering him foods such as rice, beans, potatoes, eggs, spinach, broccoli, and all the fruits we could find.
Super healthy! He’ll love it! We’re awesome parents! 🙂 🙂 🙂
He completely refused to eat ANYTHING we made for him – boiled, sauteed, blended, hot, cold, frozen, salty, crunchy, spicy….. he WOULD NOT EAT, and any tiny bites that we managed to persuade him to swallow, he almost always gagged. He very begrudgingly ate some fruit, but essentially, he went on a hunger strike.
The harder we tried, the more he refused, and for a few days, our happy little home became a war zone.
About 5 days into it, we realized it wasn’t going to work. Not only were we making him (and ourselves) miserable by trying to force non-preferred foods, he was losing weight fast.
I still desperately wanted to “cure” him (or to at least see if Jenny’s miracle diet would work), but this was having the opposite effect – his attitude and behavior were getting worse.
It became crystal clear what the priority was here – first and foremost – to ensure that he remained physically healthy, and preferably happy.
So, we decided to stop, regroup, and reintroduce foods we knew he would eat.
Daniel made him a pancake, and he inhaled it. Then he fixed him another one and he inhaled IT. Etc, Etc, Etc. It hurt me to watch it. He was starving… 😦
Stupid, stupid, STUPID!
I was so incredibly angry with myself!
WHAT was I thinking?!
I had just officially “starved” the thing most precious to me on this planet; the one thing I wanted more than anything to nurture, and care for, and help: my little boy.
So, after I finished screaming at myself (figuratively, not literally), I calmed down, and Daniel and I tried to logically assess what had just happened…
While the diet idea itself wasn’t necessarily foolish, the way we implemented it WAS.
It was foolish because neither did I properly research, nor plan it. I should have done both, and then slowly and methodically attempted to introduce / substitute new foods into his diet – but I was SO desperate to find a cure, a “fix,” (and preferably a QUICK fix) that I just jumped in feet first and took both Gabriel and Daniel with me.
I have to say though, as openly willing as I am to berate myself and call myself a fool (and yes, this was foolish, to be sure) – if I remove my Mommy hat and put on my Special Educator hat, things like this are common and understandable – and that is exactly what I would say to any special-needs parent who may have tried the same thing.
Special needs parents may tend to “freak out” a little (or a lot) – especially after an initial diagnosis – and I wholeheartedly believe this is normal. It’s traumatic – it rocks you to your core – and no one fully understands it unless they go through it.
And, what gives me perspective is how afraid others seem to be of it happening to them. I’ve had people who are pregnant with their first child say to me, “I just hope my child doesn’t have any disabilities. I don’t know how I’d handle it.”
“Well, let me tell you……”
I’m always shocked when people think it’s OK to say that kind of thing to me. HOW am I supposed to respond to that?
However, I understand why they feel that way, and I can’t blame them. There is absolutely nothing wrong with feeling that way, but I do admit that it cuts to the core a little bit. I have not one, but three of those types of children that you’re hoping you won’t have.
I suppose I would say, “When you love your child(ren), trust me, you learn how to handle it.”
So anyways, did I make an impulsive move with the “quick fix” diet?
But I’ll say this – I’ll never apologize for trying to help my child – and I am grateful for this experience, as it provided me with more wisdom, and now I know to thoroughly research and plan interventions before attempting them.
So, a quick final disclaimer so no one feels compelled to call Child Protection Services on us. 🙂
NO permanent damage appears to have been done to Gabriel. He is now taller than I am, has a shoe size bigger than his father’s, and is STILL a picky eater – but when he likes something, he eats like a horse. He is incredibly healthy.
His little brothers are picky eaters as well, but we fix them foods they like (yes, with Gluten/Casein), and supplement whatever nutrients they lack by feeding them spinach smoothies, filled with fruits, yogurt, chia seeds, flax seed, quinoa, wheatgrass, and plant-based protein powder.
(They look disgusting, but don’t knock’em till you try ’em – they’re actually really delicious if made properly).
And no, the boys don’t necessarily like them, but we started the boys on them young, so they’re used to them.
Not a “quick fix” to be sure, and that’s OK. I no longer need or seek out quick fixes. I need evidence-based interventions, with long-lasting health benefits.