Sunday, August 20, 2017

Retarded

I remember the exact day I became physically, consciously aware of the word “retarded”.

In high school, my algebra teacher patiently explained to the class that she would not tolerate the use of retard or retarded in her room, saying that it was hurtful. I didn’t understand at the time. Old people are so sensitive, amirite? They just don’t get it. I don’t mean anything by it. I’m not a hateful person, don’t look down on those that are differently abled. My intentions bought my absolution.

Several years later--June 23, 2011 to be exact--we were driving home from Dr. Driskell’s office in our worn-out Jeep with holes in the seat. My phone at the time was a Motorola Razr 2 in bubblegum pink that made that satisfying -clack!- when you slammed it shut, but cost a fortune per megabyte to look anything up on the painfully slow internet. We were going to have to wait until we got home to get on Michael’s computer and research this new-but-familiar word, Autism.

Back then, we knew nothing. Misconceptions at best. Google, unfortunately, would not be much more helpful as no one can agree on anything regarding the issue (at least it feels that way).

We could see Gabriel in the rear view mirror behind us, placid and content staring out the window at the houses passing by. One hand was in his straw-colored hair, the other holding on to the pacifier he was chewing on noisily.

Our baby.

Michael hesitantly asked, “Does this mean….is he retarded?”

It was a fair question. This was actually at the cusp of a big change to the Diagnostic and Statistical Manual of Mental Disorders, the fifth edition that would not only combine the subtypes of autism under the umbrella term of Autism Spectrum Disorder, but would replace the diagnosis “Mental Retardation” with “Intellectual Disability”.

(Note: the World Health Organization’s International Statistical Classifications of Diseases and Related Health Problems--ICD--still utilizes the term mental retardation. This is expected to change with the release of the 11th edition of the ICD, which is projected to take effect in the United States by 2023.)

Gabriel was first diagnosed in the summer of 2011 with classic autism: moderate to severe under the diagnostic criteria of the DSM-4.

Autism has a high rate of comorbidity--meaning two chronic conditions that are simultaneous in an individual--with epilepsy, ADHD, depression, anxiety, and intellectual disability, among many others. Intellectual Disability (ID) means limitations in adaptive behaviors (practical and conceptual skills such as social interactions, language, and activities of daily living) as well as a below average IQ. You can see how autism would often go hand-in-hand with that, as one key characterization of autism is impairment to adaptive behaviors.

So, when Gabe was diagnosed, the manual they used still held the phrase “mental retardation”, which he had a better than likely chance of being diagnosed with in the future.

In that moment, the word made a new kind of sense to me.

I can't say anyone’s intention behind saying phrases like “that's so retarded” or “don't be a retard”. Frankly, I'm sure there is little malice intended. A wise woman once told me, “you are an expert on your intent; I am an expert on your impact”. That's what this post is about, then. I can tell you the impact these words have on me, and likely on many more people affected by learning or intellectual disabilities and disorders.

After that day, the way those words are used, colloquially, casually to insult situations, behaviors, words, or people was no longer this innocuous, innocent ribbing. It was labeling something as inferior, worth less than our value.

We like to take words and repurpose them, meanings changing and adapting over time. When I say something is “cool”, listeners do not think I am referring to the temperature of the item; if I say “that sucks”, one does not assume the situation is creating a vacuum. Words are somewhat cheapened this way, being used to assign value or denote worthlessness instead of as descriptors. “Blonde” has much more usefulness to describe the shade of one’s hair, after all, than to imply unintelligence. There are so many other words--ignorant, senseless, foolish--that could have been used, but we insist on derisively saying, “ha! What a blonde!” Why?

When we categorize someone like that, we are unconsciously dividing it into an “us” and a “them”. If “they” are stupid/worthless/bad/wrong, then by virtue of not being them, the “us” are intelligent/valuable/good/right. It is much more pervasive than we realize once we become aware of it.

Our thoughts and our words matter. Proverbs 18:21 says “death and life are in the power of the tongue.” In Matthew 15:18, “But what comes out of the mouth proceeds from the heart.”

When someone says “retarded”, “retard”, or “-tard” words (ie, libatard), I feel it on my skin, a stab at a perpetually exposed nerve. Sometimes, I call people on it, if I think it will help. Most of the time I just flinch hard and exchange a look with Michael. He felt it, too. One thing we definitely never do is not notice.

It feels like every hateful thing people have thought about Gabriel because of his condition.

Like every struggle, every setback he has ever faced is being tossed back at him.

Like no matter how far he comes or how much progress he makes, he'll always be seen as inferior, broken.

Worthless.

Because when that word is being bandied about, it is not describing a chemical process. I hear that a lot, and my general rule of thumb: unless it is in a chemistry lab being used to actively describe a chemical process, then it's probably best not to use it. It has been co-opted from its original use like “cool” and “suck”...”faggot”.

My mother used to say, “Jesus knows what you want to say”. She was specifically referring to our teenage use of the word “freaking” as stand-in for a more colorful and exciting f-adjective. That has stuck with me because means that I need to be aware of the subtext and intention behind my words before I say them.

The DSM changed in May of 2013. The term MR was quietly laid to rest with the last edition. As of this post, Gabriel has not been diagnosed with Intellectual Disability. His developmental pediatrician has not even broached the subject, so he has no medical diagnosis of
it. At his 3-year complete Full Individual Evaluation (FIE) for his academic diagnosis, they suggested adding ID to his coding, but Michael and I politely and firmly declined. They tried to pretty it up and insist that it was something that could help Gabe, but I maintained that autism covered and explained the deficit in adaptive behaviors, but as he is unable to comply with an IQ test, it would be premature to affix an unproven label to him. AU gets him into Special Education and ensures his academic needs are being met; ID is not going to change that.

I can now definitively reply to Michael of 2011 that no, this does not mean Gabriel is retarded.

Doesn't stop me from flinching every time I had to write that hateful word for this post.

Because that is what it is, whether it is meant that way or not. It is a hateful word, one that has been hijacked from its original meaning and used as an insult, belittling. Regardless of intention, the impact is still being felt, keenly and unavoidably.

So please. Let this word die a dignified slang death.

Monday, August 14, 2017

Lunch Box Dilemma

I try my best, I really do.

I wish I could be the type of mom that packs the gorgeous bento box lunches full of pseudo-sushi rolls and homemade fruit jerky, a handmade crossword puzzle that spells out “you are a superstar!”.

The beginning of the school year, I usually start out relatively strong. All the kids are bathed semi-frequently, all their clothes are matching, and I have prepared for them nutritious yum yums for their lunchtime tum tums. They leave the door with shining faces and a cheerful, “hustle up, buttercup!”.

By the close of first semester, we are flagging a bit.

By May, things have taken a decidedly dreary turn. The kids receive a cursory wet wipe to the face; their outfit is whatever clean but wrinkled clothes I dig out of the laundry basket. Lunch is a fistful of fast food ketchup packets and a tube-sock full of yogurt.

Obviously I tease. Honestly, it is easier and cheaper to get school lunches. I can appreciate school lunches for what they are. As we have already discussed in this blog, it is hard to offer great, nutritious food at a low cost point, and what they manage is not that bad.

They can’t really cater to a specialized diet like Emerald’s though. Gabriel is difficult because of the lactose thing, but Emerald can get pretty tricky based on the offerings.

Between Emerald and her (very dear) school nurse, they are able to craft a meal out of the choices available that falls inside her requisite 45-60 carbs.

The cafeteria tends to have a lot of repetition. We do at home, too, but we are able to adjust according to seasonal availability easier than they are, and can incorporate more fresh fruits and veggies, whole grains, and carb-friendly options. You’ll see pizza a couple times a week, a few breaded options such as nuggets and steak fingers, plus burgers and hot dogs, mac and cheese. The perennial kids favorites.

Those tend to be carb-prohibitive for Emerald, though, making already small lunches even smaller. Our nurse is excellent at crafting maximum impact with minimal glycemic index, but as these foods are heavy on the simple sugars (fruits) and refined flours (breading, pasta) for bulk, they are still not the best option.

Sending lunches can get costly, and it is hard to throw something together first thing in the morning, and whatever I send I have to add a note about how many carbs are in each item and what the total is so that she can calculate her insulin and administer her shot based on what she actually eats. I know I sound whiney, but it becomes quite burdensome.

I am trying a new system this year to see how it works. I got index cards and put meal plans on one side. Each meal has protein, grain, dairy, fruit, and vegetable. I also have a little filing box for the cards.

My intention is that before going grocery shopping, I can reach in and grab a card. She and I will bulk make the meal at the beginning of the week, and she can take her lunch two to three times that week, buying her lunch the other days. That way she is getting some variety in her diet, good nutritious food, and I don’t have to make new cards every day.

On the back of the cards, I included a bible verse. If you are reading this and have insight, I would love to get your feedback because I am undecided on this:

I was toying with the idea of making the deal with Emerald that if she memorizes the bible verse by Friday, she can buy an ice cream in the cafeteria.

My concern is that I don’t want to use food as a motivator for her, because that can be a dangerous habit to start and sends the wrong message about eating healthy. On the other hand, I tend to be too strict when it comes to sweets and ice cream is actually a fairly viable option as not super carby. It would give her a fun treat to look forward to.

Regardless, there will be motivational scripture on the back of the cards so that she can read and meditate on them.

I have quite a few cards already written, either from my own thoughts or from ideas gleaned from the many, many articles I have now read on the subject. Many of the articles recommended skipping the veggies as her kids would just toss them in the trash; Emerald is an exceptionally agreeable eater so I do not have such qualms. I am listing them here as future reference for myself, and in the hopes that it may be of use to the reader. I use whole wheat tortillas and bread and pasta, unless otherwise stated. There are a few so feel free to skip ahead if uninterested.

  • Salmon and Quinoa Salad
    • Canned Salmon, multicolor quinoa, arugula, strawberries, feta. Milk, cookie.
  • Roast Beef Roll-Ups
    • Roast beef, cheddar in a tortilla. Carrot sticks, apple, popcorn, water.
  • Pesto Pasta
    • Pasta, pesto, cubed mozzarella, cherry tomatoes. Milk.
  • Diced chicken, peas and carrots, butter crackers, milk, small orange.
  • Goldfish crackers, raisins, cheese stick, ham slices, small apple, water.
  • Pastrami, havarti cheese, rye bread toast crackers, pear, bread and butter pickles.
  • Pizza Dippers
    • Breadsticks, pepperoni, mozzarella cubes. Side salad, milk, berries.
  • Lunchmeat Sliders
    • Lunchmeat, swiss cheese, tomatoes on hawaiian rolls. Cantaloupe balls, milk.
  • Pasta in olive oil, baked chicken drumstick, snap peas, grapes, water
  • Taco Roll Ups
    • Tortilla with cream cheese, taco seasoning, black beans. Jicama, banana.
  • Hawaiian English muffin pizzas with canadian bacon, pineapple, bbq sauce. Radishes.
  • Pumpkin Pie Smear
    • Pumpkin pie dip made with cream cheese, honey, canned pumpkin, cinnamon, and nutmeg. Mini cranberry bagels, celery sticks, boiled egg, water
  • Ham Pita Pocket with cream cheese and ham. Raisins, cucumber and tomato salad.
  • Stackers
    • Turkey pepperoni, swiss cheese, butter crackers, grapes, celery, water
  • Ham or Turkey Roll Ups
    • Lunch meat, cheese, tortilla. Pretzel sticks, apple, baby carrots, water.
  • Boiled egg, small banana, cheese stick, milk, bell pepper slices, english muffin.
  • Chicken quesadilla
    • Tortilla with monterey jack cheese and shredded rotisserie chicken. Bell pepper strips, ranch, small banana.
  • Pizza Roll-Ups
    • Tortilla, mozzarella cheese, turkey pepperoni. Marinara to dip, bell pepper, milk, small orange
  • Breakfast Pocket
    • Cheese, egg, spinach, and tomato scramble in pita pocket. Sliced peaches, milk.
  • Sausage Wrap
    • Sausage, pickle relish, mustard rolled up in tortilla. Veggie straws. Pear. Water.
  • Ramen with boiled egg, peas and carrots. Milk, fruit cup.
  • BLT Salad--bacon, lettuce, tomato, ranch, croutons. Juice box, oreos.
  • Baked Potato with shredded pork, cheddar cheese. Side salad, sliced watermelon.
  • Cowboy caviar
    • Black beans, black eyed peas, corn, bell pepper, onion, cilantro, tomato, lime.
  • Trail mix: chex cereal, dried fruit, sunflower seeds, stevia chips, popcorn.
  • White bean tuna salad on crackers, sliced cucumbers, grapes, milk
  • Ants on a Log
    • Celery with cream cheese and currants. Turkey breast sandwich with sweet potato mustard
  • Boiled egg, pretzel sticks, apple, cheese cubes, carrots, bleu cheese, water
  • Waffle Sandwich
    • Ham, sweet potato mustard, cheese on frozen waffles. Cantaloupe, tomato slices, milk.
  • Spinach Fritatta with mushrooms, english muffin, small orange, pudding cup, milk
  • Refried beans and cheese burrito, jicama slices, bell pepper strips, jello.
  • Spaghetti
    • Pasta, sauce, steamed broccoli, parmesan shreds, side salad
  • Meatballs, buttered egg noodles, corn on the cob, water.
  • Tortellini Salad
    • Tortellini with peas and butter. Side salad.
  • Hot dog mac and cheese, honeydew melon balls, cauliflower
  • Penne pasta with artichoke hearts and spinach, lemon vinaigrette
  • Chicken salad made with Greek yogurt, sliced grapes, carrot matchsticks in pita pocket. Pretzel sticks. Jello
  • Baked sweet potato with chorizo. Raisins, side salad, ranch.
  • BLT Roll-Up
    • 2 Tortillas, turkey bacon, shredded lettuce, halved cherry tomatoes. Milk, jello.
  • Sweet Potato Mac
    • Pasta in sweet potato cheese sauce with diced ham. Dried cranberries.
  • Hot Dog on bun with mustard and relish. Corn on the cob. Berries.
  • Spinach and mushroom quesadillas, black bean dip.
  • Salmon patty on kale salad, watermelon slice, milk, pickled okra.
  • Chili with cornbread muffins, mandarin oranges
  • Tomato soup, grilled cheese triangles

If you have any additional ideas, I am still compiling. I need something with rice, but I haven’t fully formulated anything on that yet. For now, I am just taking it a week at a time and hoping we end up with something sort of resembling health. Obviously I have grown distracted and lost steam with this post, but I promise to be more engaging next time around. Or at least as engaging as I am generally.

Blessings and love to all of you!