advocacy · special needs parenting

How powerful should a certain word be?

 

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A cluster of my most used words on Facebook.  I wonder why Meg and Ben aren’t there…

Words.  Words are the reason I’m here blogging.  Words matter, words have power.

Coming up on March 1 is a day dedicated to ending the use of one word.  It’s called “Spread the Word to End The Word”.

2017-spread-the-word-with-date

The word in question is the “r-word”, retard(ed).

re·tard·ed
rəˈtärdəd/
adjective
  1. datedoffensive
    less advanced in mental, physical, or social development than is usual for one’s age.
    • informal offensive
      very foolish or stupid.
      “in retrospect, it was a totally retarded idea”

But I’m not certain about any of this.  I’ve written about this before, but I think it’s worth repeated discussion.

First, it’s important to say, that unless you are in private, you don’t know who hears you.  As for me, I have decided to guard my own heart and avoid allowing the word to hurt me, but I don’t get to decide how my kids do or will feel about it if it’s used in front of them, or worse yet, as a bullying tactic.  I also remember all to clearly those early days when I had yet to reconcile the word “retarded” to my child with Down syndrome.  That precious face, those almond eyes, his little poof of hair.  I had nothing but pure admiration for him, and many years later I still remember the sting of hearing girls in a dress shop refer to something or other as “retarded”.

It was soul crushing.

That was one of several incidents which led to my choice to step away from giving more power to a word than it deserves.  I simply cannot be caught in the crossfire of teenage conversations and allow their word choice to ruin my day.

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Alex, between 9 and 12 months old. A better mom would remember…hur

BUT, and it’s a big but; if there are other words which would suffice, must we use a word that offends; a word that hurts?

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If you do a Google search on the word “retarded”, and click “images”, this is what comes up.

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Is this a stereotype you really want to perpetuate?

The face of Down syndrome is largely synonymous with retarded, and if you go by these graphics, it’s not a benevolent association.

However, words like “idiot” and “moron” are commonly used with absolute zero pushback.  Indeed, even “101 Dalmations”, a Disney movie, has a villain who freely uses the word “imbecile”.Below is a quote from the show “Murdoch Mysteries”, set in the late 1800’s.  (full transcript here)

I find it very hard to believe such a precise model was built by an imbecile.

Oooh. Sir, uh, I believe people such as Lydia are no longer referred to as “imbecile”.

It’s felt to be demeaning. The correct term nowadays is “moron”.

So how much power do want to give the word “retard”?  How much power to you want to give it?

If you use the word in public, would it matter to you if the mother/father/brother/sister, etc. of a person with cognitive impairment heard you and was crushed?  What if it was a person with cognitive impairment who heard you, and was crushed?  Would you be proud of your child who said it?  What if they were caught saying it in school?  Or using it as an insult or to bully someone?  Where is the line?  Where is your line?

I post this as a conversation starter.  I’m not jumping onto the “end the word” bandwagon, because I think there’s much more nuance and minutia to it than just ending a word that’s been in the English language for centuries.  What do you think?

 

 

 

 

 

cancer · parenting · special needs parenting

How The Gift Of Perspective Can Make You Grateful For The Crud

I’ve subsisted on NyQuil, DayQuil, Pepto and tiny bowls of Cheerios for a few days now. Every time I finish a bowl of said Cheerios I’m blessed with a quick little race…to the bathroom. I’ve never been a sprinter, but necessity can bring out the best in anyone. 

2 of my 3 kids have been on 2 different antibiotics in the past 2 weeks, and my husband is barely hanging on. 

The cold and flu season has been brutal to us this year. 

This is when I appreciate the gift of perspective. I tried to share it in a blog post here, and then on HuffPost, but the HuffPost commenters thought the piece misguided. 

I’m back from a different angle to give it another shot. It’s about perspective. 

From my current point of view, this sucks. I don’t like being sick, and it’s even worse when the whole family is suffering. We’re missing work and school and racking up doctor bills. 

However 

I realize just how normal this is, and I remember the terror of the cold and flu season when Benwas in leukemia treatment. That night we gave ibuprofen and Tylenol alternating to ride out a fever, he would have been unable to take either and would have gone to the emergency room as soon as his temp hit 101.5 axillary, possibly buying a few nights inpatient. I remember being sick while lying on a cold, hard cot in his room with alarms and night vitals and crummy coffee. 

And I know that with his insufficient immune system, and other medical issues it could happen again at any time, even without the rules for a cancer patient sending us there as soon as a fever hits a certain number. 

So here I sit. Flopped out in my chair, feeling like I was drug through a knothole backward, and being thankful to be home. Being thankful the antibiotics work. Being thankful we aren’t where we used to be, and thinking of the many, many people who are still on that path. 

Nope, we don’t have it so bad. We’ll make it through this, just like we’ve made it through many worse days. 

Perspective is a hard earned gift, and one I almost wish I didn’t have. But I do have it, and it makes me thankful for a fairly normal cold and flu season. 

marriage · writing

10 Powerful Quotes About Love and Marriage for Valentine’s Day


One heart is not connected to another through harmony alone. They are, instead, linked deeply through their wounds. Pain linked to pain, fragility to fragility. There is no silence without a cry of grief, no forgiveness without bloodshed, no acceptance without a passage through acute loss. That is what lies at the heart of true harmony. 

~Haruki Murakami
You were born together, and together you shall be forevermore.

You shall be together when the white wings of death scatter your days.

Ay, you shall be together even in the silent memory of God.

But let there be spaces in your togetherness,

And let the winds of the heavens dance between you. 

Love one another, but make not a bond of love:

Let it rather be a moving sea between the shores of your souls.

Fill each other’s cup but drink not from one cup.

Give one another of your bread but eat not from the same loaf

Sing and dance together and be joyous, but let each one of you be alone,

Even as the strings of a lute are alone though they quiver with the same music. 

Give your hearts, but not into each other’s keeping.

For only the hand of Life can contain your hearts.

And stand together yet not too near together:

For the pillars of the temple stand apart,

And the oak tree and the cypress grow not in each other’s shadow.

~Kahlil Gibron 
To be fully seen by somebody, and then loved anyhow – that is a human offering that can border on miraculous.

~Elizabeth Gilbert
To say that one waits a lifetime for his soulmate to come around is a paradox. People eventually get sick of waiting, take a chance on someone, and by the art of commitment become soulmates, which takes a lifetime to perfect.

~Chris Jami
It is not a lack of love, but a lack of friendship that makes unhappy marriages. 

~Friedrich Nietzsche 
Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. 

~Lao Tzu
Love doesn’t make the world go ’round; love is what makes the ride worthwhile. 

~Franklin P. Jones
We are all a little weird and life’s a little weird, and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual weirdness and call it love. 

~Dr Seuss
The ultimate lesson all of us have to learn is unconditional love, which includes not only others but ourselves as well. 

~Elizabeth Kubler-Ross
Love is not affectionate feeling, but a steady wish for the loved person’s ultimate good, as far as it can be obtained. 

~C.S. Lewis 

Uncategorized

6 Ways To Be A Minimalist in a Ranch House With Children

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minimalist

When you call a person a minimalist, you’re describing their interest in keeping things very simple. A minimalist prefers the minimal amount or degree of something.

Vocabulary.com

I have a minimalist heart.  I’m pretty sure I would be content to be off the grid in a tiny cabin with just the necessities, and preferably most of those necessities would come from hunting and gardening.  But here I am, in a ranch house in a neighborhood with high-speed internet and every amenity I could ask for.  How can I claim to embrace simplicity  With Hannah’s burgeoning interest in minimalism, I have reexamined my own longing for less.  By reexamine, I mean I really just looked around, evaluating how my home and life are set up, and what I see is that, to the extent that a suburban housewife can, I really have embraced minimalism.  Here’s how:

  1. We garden, can and hunt for our food and cook from scratch almost every day.  For those who don’t hunt and/or garden, shopping at farmer’s markets and buying local meat is a good option.
  2. Our furniture is almost all second-hand.  Looking around, the only items we actually bought for ourselves are our 20+ year-old kitchen table set and our 20+ year old bed, the price tags for both were under $500.  The rest of our furniture is second-hand, whether handed down to us or purchased second hand.  We let our dogs on furniture, and our kids give it plenty of wear and tear, so why not buy furniture that’s already gently used, so our not-so-gentle use is no big deal.
  3. Our clothing is mostly second-hand.  I feel like a big cheater here.  My clothing is universally complimented.  I wear brands like Ann Taylor, Banana Republic, Clarks shoes and more, clothing which is much too expensive for me to buy retail, but I pay between $2 and $10 an item, and I look and feel fabulous.  I even picked up a coach bag for just $10!
  4. We drive the wheels off our cars.  Or the transmission out, as the case would be.
  5. We take good care of what we have, so we don’t need to replace the often.  Yes, our kids and dogs give our furniture a workout, but by and large, we are careful with things.  Our last washer and dryer lasted us over 20 years.
  6. We repair instead of replace.  The “we” here is mostly Mike.  He’s a handyman, adept at repairing things, and when they do need replaced, like our flooring, he did the work to save boatloads of money, but I do fix and mend things when I can.

When I look around, I realize that we have achieved a minimalist lifestyle, one which accommodates our family, even with the special needs.  Sometimes I still wax poetic about the notion of a tiny cabin in the woods with just the bare essentials, but upon closer inspection, we really aren’t so far from that.

advocacy · Uncategorized

Why Would I Be Excited About This Would-Be King?

The first time I remember seeing him was at the freshman awards night.  He hauled in numerous awards for academic achievement, FFA (Future Farmers of America), and art.  His demeanor showed that he was less than comfortable with the attention, I surmised that he did what she loved with a drive and passion that can only come from internal motivation, and that the awards were an unpleasant side-effect of his achievements. He also dressed and acted the part of a female at that time.

The following year, my daughter went to his house with a group of friends to get ready for Winter Follies.  They were new friends, but we had known both of his parents for years as stellar community members, so we had no qualms about dropping our child off at their house.

As the friendship developed, it seemed that Xander and my daughter, Hannah, had much in common; artistic ability, a quick wit, and a free spirit that likely needed a venue more stimulating than the rural county in which we lived.  I liked Xan immediately when he came to our house.  He was poised, confident, and kind with a keen sense of humor and outgoing personality.  He offered help freely, the kind of friend that Hannah could call if she was in a pinch, knowing Xan would come through.  Period. Xan is the kind of friend you want your child to have.  Solid and kind, a person of integrity.

Hannah and I are close, and we talk freely, so it wasn’t too surprising to me when Hannah brought up Xan’s sexual identity.  It seemed like a slow progression, but in hindsight, it went fairly quickly, and after several months, he changed his Facebook profile to Xander, and came out as transgender.  By that time, it was no big deal.  I had been referring to the person whose parents named Alex and called a girl, for months, and the switch to Xander was easy.

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A self-portrait by Xander

Nothing changed for us.  Hannah still goes to Xander’s house and spends the night, and Xander is still entirely welcome at our house.  Xander is the same person of integrity that he always has been, in fact probably more so, because he’s being true to himself. Though in our rural, conservative community, acceptance is slow, frankly, I see Xander as a whole person, and one who I admire, respect, value and embrace.

I’m not a person you would expect to see as an LGBT advocate.  I have plenty of other things to do, that’s for sure, but once you know someone like Xander, once you see past a big, scary word like transgender to a person that you like and trust, well, it’s pretty much unbearable to think of them as not being welcome or having full rights in any area of society.  It goes from being an issue in an election platform to being a real person who matters to you.  As such, I see advocating for Xander’s rights as every bit as natural as advocating for the rights of my own boys.

Xander was up for Winter Follies King this year, and though he didn’t win, he walked with dignity and aplomb across the gymnasium floor when presented as candidate. I’m a sap for any story of determination and resilience, and this is one of my favorites.  The community that Xander has been a member of all of his life, has affirmed him as he is.  I am sure that he has faced and still faces discrimination, but last night a step was taken in a small, rural community, a step of acceptance. 

parenting · special needs parenting

Those Flipping Conversation Hearts…

It was an impulse buy.

A “mama’s been sick for 10 days and craves comfort food” buy.

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It was a 2 lb bag of Brach’s Conversation Hearts.  Yup, 2 pounds.  32 ounces.  When I grabbed the bag from the shelf I imagined the lumpy candy on my butt, and bought it anyway.  Take that crummy sickness.

Of course when impulse buying comfort food you dive in before the key is in the ignition on the way home, and dive I did.

They sucked.

Like completely crappy, not worth bothering sucked.

I bought the Brach’s so they’d be good.  Didn’t they used to be good?

Yes, they did.  I’m sure of it.

Then it occurred to me that the last time I had conversation hearts was in 2008 when I was filing tax paperwork for my mother-in-law.  I couldn’t keep my hands off of them, they were scrumptious.

I kept trying different color combinations, sure that I would discover my initial disappointment to be misguided, but I’ll be dinged if they didn’t all suck.  Every last one of those buggers.

But I kept eating them.  Still picturing 32 ounces of lumpy sugar on my butt, I kept stuffing my face, completely convinced that the next handful would be a perfect utopia of sugary bliss.

But I didn’t need candy.  I didn’t need food.  I felt empty, but nothing in that bag would fill me.  (Believe me, if it would have I would have gotten there, I tackled that baby with fierce persistence).  I needed something I couldn’t get, and I settled for a pathetic substitute.

I needed sleep.  I needed quiet time alone at home.  I needed a break from running everyone to the doctor and making phone calls when I was running on triple E. More than anything else, I needed my youngest to sleep through the freaking night.  Man did I need that.

It’s 3 days later.  Ben slept through 2 nights, it’s sunny today, and I’m home alone.  I didn’t have a single appointment or phone call to make today.  I spent time with my husband, I ran, I walked, I put my feet up, and I took advantage of a Pokemon Go update.

And those dang conversation hearts no longer have a hold over me.

 

 

 

parenting · special needs parenting

My Child Can’t Tell Me What is Wrong and it Breaks My Heart

This weekend Ben obviously didn’t feel well. He would hold his stomach, hold his head, was cranky and all out miserable. 


As evening approached he flirted with an elevated temperature. Only 99ish, but with shivers; moaning and groaning with achiness. 

He vomited a couple of times, but it didn’t seem like the Norovirus going around, nor like a Cyclical Vomiting episode. 

So we watched and waited and wondered. 

After a restless night he awoke appearing somewhat better. My husband and I shrugged and exchanged confused looks. At least he was no longer miserable. 

Late in the morning showered him off and cleaned his ears, revealing our answer. Ben’s ear was freshly draining; it was infected, and the pressure and pain had been alleviated when the blockage opened up. 

Mystery solved. 

If only it was always that easy. 

This one has a happy ending, but all too often, our child cannot tell us what he feels; even with something as straightforward as an ear infection. One would think he could just point to his ear and say “owie”, but he never does. Instead we put on our detective caps and do our best to uncover the origin.  We ponder, brainstorm, scratch our heads and shake them too, but all too often we land right back on angst, do not pass go, do not collect $200, and do not guess the real problem. 

And my heart aches and breaks when I try to help and fumble my way through. And my heart breaks that it’s so hard to help. 

We have this child with health problems and an inability to convey his bodily messages, or possibly even interpret them himself. When I think of how impotent I feel in my attempts to help, I wonder what he thinks. He clearly feels rotten and we’re supposed to be helping, solving his problems for him; yet we fail time and again. 

It’s a constant guessing game, remembering past episodes and sorting through symptoms. With this one we had covered our bases with Ibuprofen and Zofran (a nausea drug), but we aren’t always that accurate. 

And Ben suffers without a plea.