On Pink-Eye and Nutrition: One of those Moments having an Au-some child is, well… AWESOME!

On Pink-Eye and Nutrition:

One of those Moments having an Au-some child is, well… Awesome!

This is a judgement free zone, right? I mean, after telling you guys about the time my child landed me on the FBI’s “No-Fly” list (true story!) I think it’s fair to say we should be well past that, but in case we aren’t, consider this your warning:

I’m not the best parent in the world*.

β€œThe best laid schemes o’ mice an’ men gang aft agley.” — Robert Burns, The Works of Robert Burns

Most parents would agree that planning, albeit a necessary evil, is oft a waste of valuable time when kids are involved. Kids on the spectrum can really up your odds of having a “best-laid-plans-adventure.” Often these are played out in unexpected, and sometimes humorous, manners.

For parents who are not lucky enough to experience parenting a kiddo on the spectrum, it can resemble traveling through a mouse-maze of diverse-looking (think 1900’s freak show at the circus) individuals, with a 145 pound, very opinionated and verbose toddler*. To keep it realistic, lets imagine this dogmatic little know-it-all [because, guess what? he’s also a tween!] has been given a megaphone, and just in case we manage to lose someone’s attention, we are also going to give him an air-horn*.

BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP!

See, a toddler saying something brutally harsh and honest can be laughed off, even considered cute in a kids-say-the-darndest-things-kinda-way, circumstances depending. Sure it’s embarrassing, but it’s expected. At some point your toddler is going to embarrass you with a brutally honest observation of a stranger. You’ll laugh about it for years, and be sure to write it down in your baby book — future ammo for his-or-her first serious boyfriend/girlfriend. It can be embarrassingly cute, some sort of parenting-right-of-passage.*

But a tween doing it — not so cute. No, not so cute, at all.

It’s a common misconception that children with autism don’t care about other peoples’ feelings, and that’s why these little mishaps occur: however, that is not the case. Quite often, the opposite is true: people with autism are very emotional and intense people. The difference is that children on the spectrum often lack the social motivation behind the “I shouldn’t say that,” filter: thus, it’s not uncommon for children on the spectrum to say or do things that — lets be honest here — the rest of us only dream of doing*.

Example: the time my son used air quotes to describe the ‘di-eeeeeeet’ I was starting Monday.

Example: the time I was pulled over by a motorcycle cop (yup, you know the one*), and I was just about to wiggle my way out of a ticket, when a little voice spoke up from the back seat and promptly informed “Mr. Black Police Officer, Sir” [fan-freakin-tastic*!] that “Mommy’s not right. I feel just fine. We aren’t going to the doctor, but we are going to the movies to see Shrek the Third. The movie stars in 27 minutes and 32 seconds, so we need to hurry up, Mr. Black Police Officer, Sir.” We skipped past the warning and went straight to the ticket, and we were late for the movie, as well.

And Tuesday, well, Tuesday was about to become a record-setter.

When I woke up Tuesday morning, it didn’t feel like it was going to be a “Guiness-Book-of-Awkardist-Moments-Ever-Record” kind of day*. I had plans. We were going to go to the Cummer Museum of Art and Gardens. We were going to stare cock-eyed, like puzzled golden retrievers, at artsy blobs and try to pretend we knew a thing or two about art*. We were going to walk through outdoor gardens and look at plants that are — supposedly — exotic, and pretend to be interested in a caboodle of lobed, serrated, and sinuate leaves (thank you, Botany 101)*.

Oh yes, I had plans: best laid plans, I suppose.

I neglected to plan for two quandaries that would, eventually, take my day in a completely different direction than the beautiful gardens and debatable finger painting critiques.

My plans did not include the following dilemmas: the nutrition consult I had completely forgotten I scheduled weeks ago; and Cassius’s crusty, oozy, painfully red and irritated left eye. Oh yeah, and the fever, too, although this came later.

Yup. He woke up with Pink-Eye.

So, we were not going to the Cummer: instead, we were going to the doctor. When I called the military hospital to schedule an acute appointment — that’s when I learned about the nutritional consult. Oops, my bad: dang google calendar must’ve messed up my schedule again*. But we still had plenty of time to make that appointment, and I scheduled an appointment with the pediatrician directly after, bringing a cranky, tired Cassius along with me. This was going to be so much more fun than pretending to know the difference between dioecious and monoecious plants*.

I didn’t know just how fun it was about to get.

It was quiet in the car: too quiet*. I’ve heard so many parents say they could tell their child is feeling unwell when they are well-behaved*. If I was smart, I would have realized I was in over my head, and just rescheduled the nutritional consult, but since we are really being honest here, it doesn’t take a degree in medicine* to see that Cassius could benefit from consulting with a nutritionist. He is a big boy.

Just not this nutritionist.

We were precisely 7 minutes and 39 seconds late (per my very punctual and routine son), and we walked into the freezing-and-WAY-over-air-conditioned nutrition office in the belly of, arguably, the worst hospital in the Navy. We walked through the empty waiting room (which had exactly three empty chairs) and we saw only two people: the corpsman at the front desk, and the nutritionist in her adjacent office. She had stringy blond hair and a manicure that she was actively eating off one bite at a time. Her corpsman was battling an afternoon nap; and by the bobbing of his head, losing the fight.

Irritated with our tardiness, she talked over, and about, us, to her excruciatingly-bored-and-barely-awake-corpsman about how busy she was, as she walked us into her tiny, cramped, messy office. A shelf behind her desk looked like a little girl’s play kitchen with insane amounts of plastic “fake” foods, arranged according to recommended portion sizes. The shelf was unfortunate, as there was barely room for two chairs in front of her desk, and we had to sit down before she could close the door behind us. Once closed, the room shrank even further. A tiny clock ticked obnoxiously on the wall above her desk, as if even the clock was counting down until it was time to leave. Tick. Tock. Tick. Tock. Tick. Tock. Ti……

“I’m too busy, I have way too many patients to have people showing up late,” she was still talking over us, even though the door was closed. I promptly apologized for being a few moments late. I explained to her that Cassius had pink-eye this morning, we had a pediatrics appointment next, and that it had been a tough day autism-wise.

“I don’t understand what that means.” She said, blankly. She turned her eyes towards her computer screen, and began typing distractedly with that half-eaten manicure.

“He has autism. Some days are harder than others. This is one of them.”

“I… don’t know what that means…” She’s tapping furiously on her keyboard.

“He is on the autism spectrum,” it was more of a question than a statement. Did she understand?

“Oh, like Rainman?” Tap, tap, tap, tap, tap go the keys. She stopped typing and glanced up at me. The pause in the typing allowed the clock to begin to scream in agony: TICK!…TOCK!…TICK!…TOCK!…TICK!…TOCK!…

At this point Cassius makes eye contact with me and I can already sense his anxiety levels raising. His eyes say one thing: “Is she for real? I want to leave. Now.” Reassuringly, I place my hand on his shoulder and rub his back, silent mom-code for ‘hang on baby, let me talk to her and I’ll get us out of here as quickly as I can.’ I feel him take in a deep breath. ‘Good job, baby, use those coping skills.’

Sensing my discomfort, she launches right in. “So lets talk about portion sizes, Cassius,” she said, with her eyes bouncing between the computer screen and me (not him). “Do you see that poster there? See the pictures of the portion sizes? Those are all the correct portion sizes.” Suddenly she switches gears, and starts talking to Cassius, “Look at the wall,” she’s talking slowly, over-enunciating every word. Does she think he’s deaf?

Well, it’s one thing to talk down to him, but it’s a whole different thing to come between Cassius and his chicken-tenders, apparently. “I can tell you right now, my family is not going to do that.”

She audibly gasped, surprised at his reaction. “You can talk?” she asks, truly astonished.

Cassius looked at me with absolute horror.

My hand is on his shoulder again. I can feel his anxiety levels rising, like a mercury thermometer in a house fire. It’s not too long until this ends. Badly.

I spoke first, and tried to lighten the mood. “He can speak! Sometimes, the hard part is getting him to stop…” (Insert glare from Cassius here).

I change the subject. “The reason I wanted to see you is I wanted to ask you about the whole gluten-free thing. It’s very popular in the autism community right now, and I’m wondering if you could teach me about it.”

Again, blank stare accompanying an awkward silence. Except for the tick…tock…tick….tock….tick….

“Does he have an allergy to gluten?” She is very confused.

“Not that I am aware of.”

“Then why would you need to remove gluten?” Still confused.

“That’s what I was going to ask you. Many parents in the autistic community report that removing gluten helps their children’s impulsive behaviors and their tendencies to become overstimulated.”

Blank stare.

“The only thing I know,” she said, trying to regain authority in the room, “is you must avoid red dyes. All children with mental…” she pauses, and lowers her head and half-whispers, as if he couldn’t hear her, “…retardation” (dirty word already said, she now raises her head and voice again) “should never have red dyes.”

At this point, Cassius spoke up. “Which red dyes? There are a bunch of them. I could read the labels on the box and try to avoid them. I know there is like Red Dye #40, #10, #20… there is a bunch of them. Which ones are bad?”

Now she is really stunned. “You can read?”

Now Cassius is getting upset. Not only is his anxiety climbing the walls, but now his feelings are being hurt. Being locked in this tiny coffin-like-office, being talked down to like he was — frankly — a moron, with the tap-tap-tapping of her keys and the tick-tock-ticking of the miserable clock.

“I read on a 12th grade reading level.” Her jaw drops. “Also, I don’t think our family is going to do the portion-control sizes, like you were saying.”

At this point she does this loud, cackling, fake laugh. “He is so honest,” she gushes, than keeps laughing. She rises from her desk and walks out of the air-pocket she calls her office. We hear her laughing in the other room.

I look in Cassius’s face, and there are tears brimming in his eyes. Both eyes. As in, these are real tears, not pink-eye-goo. My hand is on his shoulder, and my heart is breaking for him. “Mom can I please leave? I do not like her.” I promised him to get the pamphlets she was grabbing and get us out of there as quickly as possible. She returns to her footprint of an office, still snickering.

With my hand on his shoulder, I could feel him taking deep breaths. He couldn’t handle being there any more, so he pulled his shirt up over his head, like a turtle, and began rocking back and forth, because now his deep breathing was not adequate to help him to cope.

Behavior IS communication.

It seemed obvious to me — the tears in his eyes, the head inside his shirt, the rocking and the obvious deep breathing — that this kiddo was upset. All she had to do was look at him and she could have seen that he was upset, but even still, she didn’t stop trying to engage him — despite that I kept motioning for her to speak with me, and asked her to please leave him alone.

“Cassius, lets draw a picture of a healthy meal.” Cassius rocks back and forth, turtled inside his shirt, ignoring her.

“Cassius. Lets play a game. Which of these foods are healthy?” “NO!” says the turtle.

“Cassius…. Cassius…. Cassius…. Cassius!”

I interject. “I do all the grocery shopping and cooking, just tell me. Please. He’s having a tough day.” Grudgingly, she continued her spiel, teaching me something about whole grains versus 100% whole grains… and a certain sticker to look for on whole grain purchases…and a bunch of other things I couldn’t even hear. I honestly have no idea, I was so focused on just trying to get us out of that tiny little room, filled with such a big person (not big physically, but big personality-wise. It was like she sucked the air out of the tiny cubby).

This is where it gets awesome.

Inside his shirt, Cassius is in his own bubble, and his shirt is sound-proof. Rocking back and forth, he began to speak his mind, inside his perfect little bubble, which was his safe-zone, far, far, away from that horrible little office and that loud, cackling, obnoxious lady.

Through his cotton tee-shirt, we hear the following dialogue:

“She is so stupid! She knows NOTHING! Why did we even come here? I HATE her. I hate her. I hate her. I hate her. I hate her.

“I bet SHE can’t read on a twelfth grade reading level. And while she can talk, she never thinks before she talks, so she should talk a lot less. Maybe I would not hate her if she thought before she spoke — but no, she laughs at people and is rude to people and unkind. And I hate her. I hate her. I hate her. I hate her. I hate her.”

The grain-lecture stopped mid-sentence, and we both listened to his opinionated monologue. There was no apologizing at this point, although I did kind of wince at the word “hate” and mouthed the words, “Sorry.”

Lets just say, our one-hour appointment that we were so late for lasted about 14 minutes, tops. She even went so far as to say “I usually would schedule a follow-up appointment… but…. I don’t think it’s necessary…”

I was good with that.

Now, I know I should have been mad or upset. Leaving the office, I did feel like my ankles weighed a ton, and I felt the heaviness in my chest that usually follows a major meltdown — which this was not (although it could have escalated into one, quickly). Sure, I felt bad. I know that she was trying to do her job, and I know that nobody deserves to be told they are hated by — basically — a complete stranger. And a kid.

But… As much as I was embarrassed and mad, I kind of understood.

In the hallway as we walked away, Cassius could tell that I was upset. “Mom are you mad at me? Did I fail?”

I tousled his curls on top of his head, man, do I love his hair.

“You know what, kiddo? While I think the word, ‘hate,’ was a bit over-the-top, and while I want you to understand that she was honestly trying to help us; I do agree that she was very uneducated about Autism. She was trying to do her job, its just that, unfortunately, nobody has taught her. But to be honest with you, kiddo, I didn’t like her much, either. Now lets go see your pediatrician and get you something for your eye.”

“Thanks Mom. Yeah, my eye is killing me. And I think I have a fever, too.” I touched his forehead, “I think you are right, kiddo.”

My hope is that, when we left her office, she took the opportunity to educate herself a little on autism, so that the next autistic kiddo that she interacts with she doesn’t throw him or her into an all-out-meltdown. One can only hope.

Eventually, we will get to the art museum. I promise. Until then, we are treating his pink-eye, and avoiding certain nutritionists.

Sidenote: “*” Always denotes the use of sarcasm everywhere in this website. And occasionally, there is a lot of it.

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20 responses to “On Pink-Eye and Nutrition: One of those Moments having an Au-some child is, well… AWESOME!

  1. What a truly vile way for her to behave. I am at a loss for words. I think both you and Christian coped very well considering. And I would struggle to listen to nutritional advice from someone who is clearly that ignorant.

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  2. I think your post is pretty hilarious, although I understand the frustration at the time. People’s misunderstandings of autism and their obvious lack of respect for others almost always makes me laugh. I sometimes think, here I’m the one with autism and these people could benefit more from social skills classes than I could.
    As far as the gluten free diet goes, it is something that is beneficial on a case by case basis. People with autism are more likely to have some sort of gastrointestinal problem and nutritional problems. The way I see it is that when people go gluten free, they also tend to eat healthier- making it easier for their body to digest food especially if they have some sort of digestive problem.
    I have heard a few stories that getting rid of dyes can make a big difference, but I haven’t read enough about it to confirm that definitively. I don’t personally eat any dyes just because I don’t like “fake” food so I couldn’t really say from experience if it makes a difference.

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  3. Oh. My. Gosh.
    Reading this my anxiety level was rising right along with Christian’s.
    I KNOW there is no way I would have handled it as well as you and he did.
    I get so frustrated when I know more about a topic than the professional I’m asking for help, or the professional who is supposed to be in charge of a situation I’m in.
    I hope you can find an appropriately-educated person to discuss your concerns with. You will hear from a lot of people that the GF/CF diet has not been proven to be effective. However, that kind of study is extremely difficult (ALL studies related to food and eating are notoriously hard to control). As much as I’m a fan of science, autism is one area where I am more interested in case studies. Actually, I have a master scheme to one day create a database of information, but that’s off-topic. I’ll wrap up by saying that the theory behind diet changes is solid, and that *for some individuals* it appears to be extremely beneficial, once you find the right foods to avoid. It’s just not a blanket “cure” for autism like some want it to be (or argue it isn’t, instead of seeing that for some kids it really helps). I think it’s worth trying so much that I did a GF experiment myself. The results were inconclusive, but I might try again.

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  4. Wow, what a nightmare. I used to be a dietitian actually but I gave it up because people always wanted a ‘quick fix’ and later, when I was diagnosed with autism, I realised I had really poor people skills (I never laughed at anyone though and I never got angry at people for being late or anything). Dietetics ends up being mostly about common sense in the end and I think people end up very uninspired by that. I hate the idea of excluding food groups (with no scientific evidence supporting it) but if people tell me it works for them, I’m not about to argue with them. I have a huge appetite and had an eating disorder in the past and so now I’m super into encouraging people not to hate foods and/or restrict foods just because it’s popular to do so. Just cooked an awesome chicken casserole: recipe here http://www.bbcgoodfood.com/recipes/748650/onepot-chicken-and-bacon-stew

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      • Awww! I will miss reading your posts, Rachel, but I may reblog some of your posts here, if you do not mind!

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      • Hey sweetie. So I think what I would like to do, is I would like to feature your posts as guest posts. Would you be interested in doing that? I would, of course, link them back to your original post, but that way, even if you decided to close your blog, your valuable words wouldn’t dissapear. What I would like to do, is every day for the next couple weeks, feature one of your articles at a time. Your writing is such a huge reference for me, and I love your perspectives as an autistic adult, I just can’t bear the thought of losing access to your thoughts forever!

        If you could, please send me an email at mypuzzlingpiece.com. We can talk specifics there (it’s hard to do it this way). Either way, send me an email so I can get in touch with you! πŸ™‚ I’ll wait til I hear from you before I start reblogging.

        (the problem with reblogging is that if you ever cancel your blog, or close it down, they will disapear forever, so, being that so much of your post are — amazing — I’d love to feature them as a guest blogger here — all intellectual properties remain yours — so when you finish that book and it gets published, you can stick them back in there!). Of course, I can also just reblog them if you’d prefer, it’s just that your stuff is *so good*. Really, really amazing.

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      • Wow, thanks for the positive feedback. I’d love to be a guest blogger on your blog. I have sent you an email, if it doesn’t reach you please let me know because I was a little confused about the address. Thankyou Rachel

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      • Hi Rachel, The email I sent to you came back as a message failure. To save further errors on my behalf, which can become tiresome haha, I’ll write my email address for you here but please delete the comment rather than leaving it on your blog site because I don’t want it to be in the public domain any longer than it needs to be.
        Thankyou

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  5. Hi! I’ve missed “chatting” with you! Life has been hectic. Big surprise, huh? Just wanted you to know I am impressed with how you kept your cool with that ignorant doctor. Oh, and your son is now a personal hero of mine. Go get ’em Christian! πŸ™‚

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  6. Its such as you learn my thoughts! You seem to understand so much approximately this,
    such as you wrote the book in it or something.
    I believe that you simply can do with some % to pressure the message house a bit,
    but instead of that, that is fantastic blog.
    A great read. I will certainly be back.

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