Saturday, January 14, 2017

Accidental Ambassador

If ever I get myself in trouble, it is for action, rather than inaction. Most major regrets follow the times I have shot off my mouth, rather than the rare moments I have remained silent. 'Doing' is my default. Yet I have mellowed in recent years. Life has gifted me with a bit more silver on my head and circumspection in it. I hold my tongue. I look before I jump. And every now and again, I think things through before acting.

Even as a young woman, with my naive hotheadness, I recognized there were some things I didn't know a dang thing about and should, therefore, shut up about. These issues usually were massive social problems that needed to be transformed. Sometimes it was a misunderstood body of knowledge. Injustice and ignorance were mountains too tall for me to scale. Yet now the years find me discussing them.

I have overcome my reticence because these things are important. I know I possess a lone, unqualified voice; but I can not wait quietly for the experts to be invited into my circle of influence. Silence is not okay. My hope is that I can get people thinking or feeling uneasy. If those who listen feel a bit abashed perhaps they will do some research. That research will lead them to voices that know. Those voices speak better than I can of the injustice or ignorance they live with. Those voices need to be more than heard, they need to be heeded.

The following is a brief overview of those things which need knowing.

Chinese American Culture

I am married to an ABC (American Born Chinese.) I have absorbed so much wisdom from his family that we often times joke that I am more Chinese than he is. But the deep truth is that I am a white girl who was raised in the middle of the United States of America in a comfortable suburb. I didn't know that China has one written language, but many spoken ones. The thrill of dim sum carts rattling up to our table, loaded with extraordinary cuisine was a paradise unexplored before I met my man.

Did you know that the Chinese invented almost everything worth having? Today's Americans think that because we landed on the moon and formed gadgets with fruit on them that we are the inventors of the world. That is not so; we share the glory of genius with many others. Some know that China has given us gunpowder and silk, but that is not all, my friend. To learn more about the many treasures the Chinese have created, read this book.  I'm particularly grateful for toilet paper.

Then there's the gravity of being an ABC: too Chinese for America, too American for China. And why/when did we start lumping all Asians together? For one man's perspective, read this book. Did you know that the Border Patrol was originally created to keep the Chinese out of America? The abuses of Chinese immigrants should make your heart slow to a heavy, dreadful thud. To learn more about the complex history of Chinese Americans, read this book.

Disability Language

I have been a staunch advocate for people first language for as long as I can remember. As a nurse, I phrased any necessary mention of a person's disorder as "she has diabetes" or "he has schizophrenia." I avoided identity first language, which refers to patients as an extension of their disease with terms like "diabetic" or "schizophrenic." I deliberately referenced patients as a person with the disease, rather than the disease itself.  I intentionally use people first language still.

But my deeply held preference for people first language was taken too far. Once upon a time I argued with a family member who has a disability about how he identifies himself. This beloved man prefers identity first language. Hearing him attach an "ic" to the end of a disorder and proclaim it as his identity unnerved me. I had a visceral reaction. I told him he was not the disease, he merely had it. He patiently, but strongly informed me, "No, I am it."

My grandmother had polio as a girl. The virus swept through her body when she was three years old, leaving permanent damage to her right foot and leg. She has told me about spending months in hospital wards, seeing other children subjected to iron lungs. She told me about the multiple surgeries summer after summer, trying to limit the impact of disability. She walked once, without her brace, to show me how her knee collapses and slides in with each step, causing a pronounced limp. She also told me she prefers to refer to herself as being crippled. Because of the damage to her leg, and how it was acquired, she thinks the term "crippled" best describes her condition.

I choke on the word "crippled" and can not bring myself to say it about my grandmother. But it would be a grievous arrogance for me to tell her how she should identify herself. When I look at my treasured family member I don't see disability, I see him. The pompous gall it takes to tell him he must use my eyes when looking in the mirror is unacceptable, though.

As the mom of a child with disabilities I want the world to see him and identify him as a person first. And until he tells me otherwise, I get to do that. But should he tell me he prefers to use identity first language, I will honor his right to chose that. To read other people's thoughts on language choice, click here.

When you, dear reader, speak to or about someone with any disorder, please refer to him or her as a person first. If the person prefers identity first language, then you may adapt your language to honor his or her wishes. But always error on the side of respect for the individual.

Disability Resources

Oh boy. This post is already so long, and I want to save some steam for the last topic. I will be succinct: ask someone who needs assistance with any manner of disability about the availability of help, the process to acquire it, and the attitudes of those who are tasked with providing it. Es no bueno.

African American Infant Mortality

Did you know that twice as many African American babies die in their first year of life as do Caucasian babies? I am hoping that information just jolted you. I had no idea America was burying so many of her African American babies until I became friends with Ms. Payne. If you aren't horrified, then we need to have another conversation about how you've been trained to devalue some lives.

This isn't just a statistic. This is a mother holding a limp body, sobbing from her soul, wanting to jump into the grave with her child because one so small and beloved isn't supposed to be all alone. But it's more than one mother; it's thousands.

If you are thinking that the babies die because their mothers don't take care of them, then you need to keep scrolling down the page of the first link and see that most die from causes linked to poor  maternal healthcare. Also, we need to consider why health disparities don't bother you. And even, perhaps, visit the thought that different styles of parenting are just that: different.  African American mothers ought not have their competence evaluated by how much they behave like Caucasian mothers.

If you are supposing now that the connection to poor maternal healthcare is proof that African American women are lazy and just skip their doctor's appointments, scroll some more and see that mothers want excellent healthcare, but it is not available to them.  You also need to spend a minute pondering what it is that causes you to blame the victim for suffering loss. They are losing their babies, and they are losing their own lives. Our nation is losing its mothers to death.

I don't know how to weed out racism, stop death in its well worn tracks, or improve disability care. But I know that staying silent isn't working. Injustice and Ignorance are still unscale-able mountains. But I know One Who can move them. A Bible verse that has been prominent in my life the last number of weeks is Micah 6:8 "He has told you, O man, what is good; and what does the LORD require of you but to do justice, and to love kindness, and to walk humbly with your God?" Perhaps as I walk humbly and love kindness, God will teach me how to do justice.

Wanna come with me?



Friday, November 4, 2016

T Man 2016

Last month we celebrated our darling T Man turning 5. Five Years Old!

The last couple of years I sent an email to the people in his life who loved and nurtured him for a season (read: teachers and therapists). But now that the list is growing I have decided to post my annual update on my blog. My poor, neglected blog. At least this way it will have new words splash across it once a year.

T remains the most delicious ball of joy that I have ever known. He is full of love, mischief, compassion and silliness. It's an absolutely magical combination. I am very happy to report that his beauty is not merely visible to his mama. He won the Shine Award at his preschool last month, because his teacher sees him, too. He came home with allergy friendly sweets, stickers, and a coloring book. The Shine Award is an honor that exists throughout the school district to recognize students at each building who consistently demonstrate outstanding character. Later his teacher told me why he was chosen, "I nominated T because of his ability to brighten everyone’s day.  When he walks through that door, smiles light up.  Also, he doesn’t see differences in others.  He accepts people for who they are and loves them no matter what.  He exhibits great character every day." Her words made one of his parents cry, and it's not the one you would expect.


T and his phenomenal teachers celebrating the Shine Award.

T-Man is flourishing in pretty much every area of life. He is beginning to construct complete sentences. He is starting to engage with his peers in more meaningful play. He hops, skips and jumps. He sometimes stays in line without having his hand held (woot!) He still loves cuddles. He is continuing in his pursuit to memorize every book we own. He has started using a fork to eat his applesauce at bedtime. T loves school and school loves him right back. He has fine tuned his maniacal laugh. Most of his doctors see him just once a year now. His haircut screams have reduced by a solid 25%. T goes to OT once a week, PT once a month and Speech once a week. He has developed the balance and strength to stand in the front window sill and lick the window. He only calls Mommy by Daddy's name half the time. T loves, loves, loves Dusty Crophopper. He looks amazing in footie pajamas. In short, he is a dream boat.

He's also a good brother. To talk about T's life without mentioning his siblings is to speak of the ocean whilst ignoring the beach. They are all intertwined.  

T, Big N and Dusty

Big N is in third grade now. We're still homeschooling because I'm harebrained and he's thriving. He is currently planning his adulthood and has settled on being a professional baseball player, paleontologist and stay-at-home dad. Big N has conveyed his approval of our parenting by stating his intention to send his future-child-with-special-needs to the same schools, therapists, and healthcare providers that we use. He is a patient teacher as he conveys all manner of lessons to his siblings and teaches M and I how to parent an eight year old. 

T and AB

AB is my splash of sparkle amidst the pile of boys. She is a delightful bundle of paradoxes: rough-and-tumble and gentle, unflappable and dramatic, innocent and mischievous, Mama's girl and Daddy's girl. She collects rocks and purses. Buzz Lightyear never had his diaper changed until she came around. She loves being barefoot, but if she must wear shoes she strongly prefers sparkly ones. If I had all the girls in the world to pick from, I would chose her as my daughter. 

T and Baby N

Baby N is a delightful, squishy baby. He laughs heartily when we blow raspberries on his tummy. His countenance lights at the sight of his siblings. He hates tummy time. He insists on sucking his left thumb, rather than the five different types of pacifiers we have offered him. He has slept through the night a handful of times. Baby N is a Mama's boy and I have no intentions of changing that. 

If this little update makes you smile to read it, as it made me smile to write it, then join me in thanking God for such a lovely life.

Friday, July 22, 2016

Hoosier Happenings

Horrible cell reception. All is well.
Creek bed is friendly, rising up in twirling greeting with each step
Clink clank thud as horseshoes hit various destinations
Frog the size of my thumbnail lures and fascinates us
Late night cheese and breaded mushrooms
Flinging bubble solution
Water bugs sliding across the top of the water. My first exposure outside an arcade
Watching two humming birds negotiate turns at the feeder
PBS kids
Minnows darting, but not fast enough for my hunter boy
Husband toting a happy, dripping preschooler to clean clothes
Thrill of lady bug slippers, discovered in a tucked away corner
Soothing low roar of fans and window air conditioners keeping the summer heat outside
"Wait over there at that end and I'll see if I can scare the fish to you."
Dishes manually washed by my man
Bubbles hovering then floating on a sudden breeze
Little brown fingers scooping minnows out of the net and gently dropping into the adapted bottle
Butterflies more densely packed and as widely varied as any house
Mushrooms: fat, scalloped, emerging
Husband letting a toddler crawl on his head, shoulders, knees and toes and play with his hair
Rock ledge seat, dry, perfect height, cushioned by moss
Waterfalls choreographed by God
Swinging on the porch with the newborn, listening to birds sing, wood peckers peck, whine of wasps, dull roar of humming birds, occasional yells of delight drift on a breeze from the creek
Water sloshing, splashing out of plastic dinosaur boots on dry land romps
Brown eyes and limbs and heads lighting up, swinging and exploring a wide front yard
Crash of the screen door. Pitter of feet on the porch. Patter of feet upstairs.
Traipsing in wet, too big, pilfered shoes with walking stick in one hand, net in the other
Smells like a rugged, rustic uncle. The wood scent follows us.
Heavily cushioned chairs and recliners
The sound of sucking, then waves crashing against the inside of boots
Chips and cookies and pumpkin seed bread
1948's book of trains; 500 pages of preschooler paradise
Husband curled up with baby
A borrowed bed that's actually cozy
Boots emptied of their creek water onto flowers at the house
Husband playing catch with the big guy
Water cold at one end of the trail staves off sweat until we summit at the other end
Living out of a suit case and not caring
Geology girl
Bum!punk,punk,punk,punk. Baseball drills off the wooden stairs
Museum ramps, water play, gorgeous heritage on display
Tired bodies housing happy hearts
Hearing my phone chime and staying seated
Grateful





Monday, January 25, 2016

Color on Your Clothes

One year ago today I sent my beloved T-Man off to school for the first time.




 Actually, it wasn't just me. The whole family went. I carried AB and the camera and eyeballs full of tears. It was a mildly exciting, though largely terrifying day for me. The "what ifs" paraded through my mind at double time.

What if someone picks on him?
What if he needs something and the teacher can't understand him?
What if eats an allergen?
What if his teachers don't recognize what a treasure he is?
What if they see his eczema and think we're neglecting him so they call Family Services on us?
What if he hates school and this derails his whole education?

My normally optimistic personality was completely overrun by fear and doubt. Fun times.

I spent the night before running through the stomach-churning list of possible disasters and coloring on T's shoes. T has deliciously squishy feet that require extra wide shoes. By the time you add orthotics to his feet, the only shoes that work for him are orthopedic ones. Pediatric orthopedic shoes are ugly.


They're huge and white and clunky. As if the braces don't draw enough attention to the child, the shoes scream for attention. 

M and I set about making his shoes a wee bit better. Fortunately, my man is an artist, so he drew characters from Toy Story to match T's "Buzz Boots." These became his inside shoes.





I am not an artist, but I have learned how to color inside the lines. I made the outside shoes. (tip: we used sharpies for our coloring, then sprayed clear coat. A year later, they still look great.)


The moral of this story is: if something in your life is heinous, feel free to beautify it. The first born, type A person that still exists inside of me felt a bit rebellious coloring on shoes. It was fun. And it was for my beloved son. Plus, it helped distract me from the "what-ifs" just a bit.

And, it turns out I was needlessly torturing myself. Because:

No one picked on T.
His teachers worked hard to understand him, and they succeeded.
He didn't eat an allergen. Everyone was vigilant in protecting him.
His teachers did (and do) see his beauty and genuinely love him.
No one has ever reported us to Protective Services.
T-Man loves, loves, loves school!



Monday, August 17, 2015

Books for Siblings




As we realized our family was being shaped by disability we recognized we were ill equipped to help all our children flourish. Neither M nor I had been raised with a sibling with special needs. We had zero emotional tools to share with our kids.

I began reading a lot of children's literature. Inter-library loan became my best friend. I zoomed down numerous bunny trails as my choices garnered more suggested reading lists. I read reviews, I read descriptions, I read and read. I read trash and I read gold. From all of this reading I made a list of books to recommend to others. Though the hunt for good literature can be thrilling, it is also time consuming. Most families impacted by disability don't have the luxury of extra time.

On the off-chance a parent reading this does have a few moments of solitude, I recommend that you read the books, too. The books geared toward later childhood and adolescence provided an interesting insight into parenting. By reading between the lines I was able to see what behaviors and attitudes from the parents further antagonized their children. There is wisdom in learning from others' mistakes, even if the others are fictional.

I'm posting my list below of recommended reading for siblings. They provide children with validation and the vocabulary to express their hearts. I have read most of the books. There are a few that, because of the diagnoses depicted, I did not read. Those that I did not read myself came with strong, positive reviews. So I'm hoping those people weren't ding-dongs. It could ruin my reputation for being a connoisseur of children's literature.

Addendum: I recommend every child read books that feature other children with special needs. Siblings are not the only ones changed by disability. Each one of us can be, and should be, if we allow ourselves the opportunity. Certainly if your child has a cousin or classmate or neighbor with a disability, they need context and vocabulary and information. But even if they can not identify a single person with special needs in their lives, they need to be prepared for when they do. 

*****************

Anything but Typical by Nora Raleigh Baskin. For ages 10-14. A story about a twelve year old boy with autism. Provides perspective on living with autism.

Barry's Sister by Lois Metzger. For ages 9-12. A story about a girl who has a brother with cerebral palsy.

Ben, King of the River by David Gifaldi, Layne Johnson (Illustrator). For ages 6-10. A story about a boy with a younger brother who is developmentally disabled.

Joey and Sam by Illana Katz and Edward Ritvo (Authors), Franz Borowitz (Illustrator). For ages 6-10. A story about a boy with a younger brother who has autism.

My Brother Charlie by Holly Robinson Peete (Author), Ryan Elizabeth Peete(Author), Shane Evans (Illustrator). For ages 7-10. A story in which Callie talks about how much she loves her twin brother, Charlie, who has autism.

My Brother is Very Special by Amie May (Author) and Laurie A. Faust (Illustrator). For ages 4-8. A story about a girl with a younger brother who has a speech delay.

My Brother, Matthew by Mary Thompson. For ages 4-8. A story about a boy born with a brain injury.

My Brother's Keeper by Michelle Beachy. For ages 5-10. A young boy describes living with his younger brother who has multiple disabilities.

A Real Christmas This Year by Karen Williams. For ages 9-12. A story of a girl’s brother, who suffers from multiple physical and emotional disabilities, and his impact on their family.

Rules by Cynthia Lord. For ages 8-12. A story of a 12 year old girl who has a brother with autism.

Sara’s Secret by Suzanne Wanous. For ages 4-8. Sara's secret is her brother Justin, who was born with cerebral palsy and is intellectually disabled.

The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs by Don Meyer (Editor), David Gallagher (Foreword). For ages 12 and up. A collection of 50+ questions answered by teen siblings of people with special needs.

Tru Confessions by Janet Tashjian. For ages 9-12. A story about a 12-year-old girl who grapples with her two ambitions to cure her developmentally delayed twin brother and to host her own TV show. She tells her story through a journal.

Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs by Donald J. Meyer (Editor), Cary Pillo (Illustrator). For ages 6-12. A collection of essays from siblings of children with special needs.

Way to Go, Alex! by Robin Pulver. For ages 4-10. A story about a girl with an intellectually disabled older brother who participates in Special Olympics.

We'll Paint the Octopus Red by Stephanie Stuve-Bodeen, Pam Devito (Illustrator). For ages 4-8. A book about a girl who has a little brother with Down syndrome.

Tuesday, August 4, 2015

Sweet Ride


Last week T-Man's therapist greeted us with a super happy face and great news. The AmTryke that a local group had sponsored had arrived. Plus, our phenomenal PT, Dave, assembled it. Woo Hoo! This thing is such a blessing. Exercise, fun, and a normal-ish childhood are all included. Plus a matching helmet.

AMBUCS is the group that sponsored T-Man. They serve people with disabilities, including children and veterans. They have chapters all over the country. If you are feeling inspired to help people near you gain independence in mobility, you can find a group close to you by clicking here.

video

As you can see from the video, T-Man is rocking his new trike. We are all so excited! The happy voices are me and Dave. T's been working with his both his PTs on one of the facility trikes for months. He didn't just hop on and take off. This is lots of hard work coming to fruition. I'm thrilled we can continue making forward progress at home now, too.

Thursday, July 30, 2015

More of Me

I'm thinking of writing more frequently. I don't want to make any promises, but I feel myself drawn to the keyboard more often these days.


A sudden influx of blog topics fill my brain last week. So I grabbed a pen and started jotting them down before they flitted away. N saw the list later and said, "Who wrote on my masterpiece?"


Doh! That Mom-fail actually made me wince. Clearly, I will not be writing about "How to Nurture Your Budding Artist" or "Top Tips for Preserving Children's Art."

Truth be told, I will not begin writing about the sunshine and roses in any aspect of my life. I won't detail my great moments in an effort to serve as "inspiration." I'm choosing the path of reality not because of my vast integrity, but because if I didn't, my posts would be one sentence long. For example, today's positive message would be: Dear Internet, I brushed my teeth this morning.

I'll stick with my standard honest accounts of being a ding dong who cares about a few important things. As filler, I will likely tell on myself. Which is why I'm not fully committing to this writing-thing quite yet.

This evening I dashed to the library to check out stupid diet books. I reasoned that my wise diet hasn't been working, so I need to try something different. I found a new stupid diet so quickly that I needed to kill more time before returning to the screaming tribe of children. So I went for ice cream. 

True story.

I turned the top book over so the guy at the window wouldn't see the subject matter as he handed me a giant cup of frozen sugar/fat. As I ate the sundae my stupid diet declared, "You've got to stop eating unhealthy crap."

I'm already thinking this stupid diet may be one of my dumber ideas. Right behind deciding to publish my antics on this blog.