My Barriers to Ella’s Independence

One of the first concerns I had when given Ella’s diagnosis of Down syndrome was Ella’s independence growing up and ultimately as an adult. While taking independence for granted with my other children, I wondered about Ella’s ability to complete common, daily tasks.  Would she dress herself? Do laundry? Prepare meals? Count money?

As soon as Ella could crawl, I began preparing her to become self-sufficient by creating opportunities for her to help around the house. In a lower kitchen drawer, I placed her healthy snacks and bowls.  She learned to pull the drawer open, select the snack she wanted, and pick the bowl I asked her to find (Ella; get the big yellow bowl.  Ella; find the small green bowl). As her age and fine-motor skills advanced, she would also open the snack container that I selected specifically for building small hand muscles. She helped me sort the  laundry and recycling, clean the house, and accompanied me to the grocery store where I explained each item purchased. No daily task was too small (replacing the toilet paper roll) or too big (vacuuming out the car); I considered every task required to be a self-sufficient adult and broke those items down into steps that I taught Ella. My mom thought I was crazy.  “Just let Ella be a kid”‘ she said often. But I felt that independence was one of the greatest gifts I could give my daughter.

As such a strong advocate of independence, I was shocked this week – on two occasions – to realize that I, of all people, have placed some barriers to Ella’s independence.  It’s funny, really, that my tendency towards perfectionism ( I can’t help it that I’m happier when my towels are folded a certain way.) or phobia of germs (I blame it on the years of biology classes) would interfere with Ella becoming more grown-up.  And blame my Dad for my insistence that one not waste water.

At the mall this week, Ella insisted on using the restroom alone. I was mortified. She has perfect potty etiquette, of course, instilled in her by my years of training on how we contract germs. But what if the back of her legs touched the toilet while sitting on the paper she surely placed on the seat? What if she didn’t wipe properly? What if she flushed not with her foot but with her hand? It creeped me out.  But as she stood there with hands on hips, glaring at me, I realized she was perfectly capable of going into the restroom alone.  I gave in, though I stood outside the door listening in case she needed help.  She had a lovely time on her own, saying hello to the other ladies, asking their names, and basking in the warmth of the hand-dryer.

Tonight, Ella asked to shower on her own.  She has been practicing this skill for over a year, but I still hesitated. What if she used too much shampoo? What if she didn’t completely rinse the conditioner, leaving her hair dull and heavy? My dad’s voice echoed in my head “what if she wastes water?”  Realizing I was limiting Ella, I forced myself to the other side of the house to avoid the temptation to peek in upon her.

I have to laugh at myself.  I recognize and accept my idiosyncrasies and habits and obsessions (you really shouldn’t place plastic dishes in the dishwasher). I never thought, however, that I might be the one to place limits on my child.

I believe that no limits should be placed on our children with Down syndrome.  Often, the only limits they have are the ones placed upon them by others. Consider that when it seems a limit is reached, perhaps your child can go beyond that barrier if you are creative in finding a new teaching method or solution to the problem.

Ella is very independent. She pushes me every day to let her do more. Sometimes I hesitate, thinking “she isn’t old enough” to do something. But as long as she is safe, I remind myself to let her keep growing and learning and experiencing. Even if she does get a germ or waste a bit of water.  Sorry Dad.

 



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We are igniting change when it comes to society's perceptions of Down syndrome.

I once called a stranger and begged her to adopt my newborn. That may have been rock bottom; it’s hard to think you can fall any lower when it comes to handling your child’s needs. I didn’t know how to accept the news that my daughter had Down syndrome. So I didn’t.

In 2004, I was wheeled out of the hospital with a tiny baby in my arms and the weight of an extra chromosome on my shoulders. And not so much as a pamphlet in my hand to help me sort through the crushing avalanche of questions and doubt.

I spent weeks mourning the child I’d dreamed of during my pregnancy (and thought I didn’t get). My original expectations were replaced with a long list of questions, doubts and fears.It took awhile for the logical part of my brain to overcome the emotional part, to make the decision to do whatever I needed to do.

None of the resources I turned to – my medical textbooks, parent resource books, websites, Down syndrome organizations’ information material – really answered the questions that I, as a parent, cared most about.

What type of future would my daughter have?
Would she potty train?
Would she ever have a friend?
Would she learn to drive?
Would she get married?

I kept getting the same information, but nothing to answer my most desperate question: How do I get through this? There was no one to turn to, no one to give me hope. I was angry, but resolved too. I refused to believe what I was reading and hearing about Ella’s future. I needed a friend: to talk to, cry with, and to help me find answers. Even with my medical background, with family support and so many other resources at hand, I was alone in this, feeling my way carefully – sometimes painfully and sometimes blindly – through so much misinformation and stereotypes.

I realized other parents of children with Down syndrome must experience the same helplessness. Having a new baby is overwhelming and exhausting enough. Then add a diagnosis, hours of therapy a week, and endless time arming yourself with the best possible information. I spent so much of my time as a new mom trying to piece everything together, that I missed out, really, on just being a new mom. I barely remember Ella those first few months. I only remember what I was going through. I don’t recall one happy thought about having a new baby.
No parent should feel like the birth of their child means the death of their dreams for a happy, healthy and bright future. If I’d known then what I know now, I wouldn’t have wasted those precious months barely surviving, instead of thriving.

That’s my goal – to share my knowledge with other families affected by Down syndrome, to create a place for them to interact, to have a voice, to learn from each other – to go beyond just surviving with Down syndrome, to thriving. That’s where the Thrival tribe comes in.
At www.juliakinder.com/dsThrival, you can do all of that, and more. Become a Thrivalist today and join our movement to show the world the UPside of Down syndrome. Today’s web launch is only the starting point. Our Thrival tribe will grow with new online resources – like a virtual pin-board to showcase our tribe members’ location, and a place to celebrate the birth of babies born with Down syndrome – additional educational products, and more ways to interact with other parents and extended family and friends.

Here’s what you can do Right Now to help us change how society views Down syndrome:

JOIN THE THRIVAL TRIBE
You’ll get updates and helpful tips on thriving with Down syndrome.

Upside of Down FREE flier

SHARE THE UPSIDE OF DOWN
Help educate others by sharing www.juliakinder.com/dsthrival with friends and family, linking to the site, and posting on Facebook and Twitter. You can also download a free Upside of Down flier to print out and distribute or send by email to friends, family, your local schools or churches.

CHANGE THE CONVERSATION
The Thrival Tribe is all about shifting how people talk about, think about and view Down syndrome. Support the cause with an Upside of Down t-shirt or wrist band, available at the www.juliakinder.com.

Thrival T-Shirt



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On the first day of Christmas,
my doctor sent to me
A urinal cause I don’t have time to pee.

On the second day of Christmas,
I made 100 home-made bows:
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the third day of Christmas,
I realized excess caffeine will dry you out:
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the fourth day of Christmas,
too much caroling made me cough:
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the fifth day of Christmas, I think I caught the flu:
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the sixth day of Christmas,
my fever reached 104:
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the seventh day of Christmas,
I did my grocery shopping at Wal-Mart:
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the eighth day of Christmas,
my doctor recommended to me
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the ninth day of Christmas,
I strained my back when I dropped the frozen turkey:
N0 ladies dancing- instead gotta go for Physical Therapy,
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the tenth day of Christmas,
I have stopped sleeping:
Ten PM dose of Lunesta,
N0 ladies dancing- instead gotta go for Physical Therapy,
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the eleventh day of Christmas,
my doctor had to refer me:
Eleven sessions of therapy,
Ten PM dose of Lunesta,
N0 ladies dancing- instead gotta go for Physical Therapy,
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

On the twelfth day of Christmas,
my doctor sent to me a
Twelve-hundred dollar bill,
Eleven sessions of therapy,
Ten PM dose of Lunesta,
N0 ladies dancing- instead gotta go for Physical Therapy,
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.

 



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  1. All children getting sick at the same time. In theory, everyone should then be well at the same time.
  2. Baby wipes in bulk.
  3. Clear, non-staining beverages.
  4. Velcro.
  5. Bleach pens.
  6. Ziploc bags.
  7. Cats with the good sense not to walk through the vomit that had to be left on the floor while showering a sick kid.
  8. Daddies who grocery shop.
  9. Hot, sunny days when the kids can play outside.
  10. Cold, fruity chardonnay (for mommy) when the kids are stuck inside.
  11. Babysitters who come over at the last minute.
    Babysitters that teach your kids.
    Babysitters that your kids like.
    Babysitters, period.
  12. Babysitters who clean and do laundry.
    Hand-me-downs.
    Sales that don’t require remembering to bring a coupon.
    Kid’s pants with those adjustable elastic things on the waist band. If only mommy’s pants were made that way, too.
    Kid’s skirts with built-in bloomers underneath. If only mommy’s skirts were made that way, too.
    Spray and Wash.
    Lysol wipes.
    Restaurants with healthy kid’s menus (whole wheat pasta, steamed broccoli and grilled chicken versus cheese pizza, fried chicken strips, and French fries.) Thank you Olive Garden.
    Restaurants with diversions; crayons and paper tablecloths, peanuts to toss on the floor, crackers, breadsticks, and silly waiters.
    Healthy, mess-free, snacks to toss in a purse or diaper bag.  Thanks Brothers All Natural.
  13. Baby-changing stations in public restrooms.
    Travel potties for avoiding public restrooms. Thank you Kalencom Potette<>.
    DVD players in cars.
    Lightweight strollers.
    Grandparents who take the kids for the whole weekend.
    Alone time. Not really sure what it is, but I’ve heard people talk about it.
    Girl’s-night out. Daddies who keep the kids on girl’s-night out.
    Daddies who understand that to brush out tangled hair, start below the tangle and work up. Don’t insert brush above tangle and try to yank out.
    Margaritas.
    Silence. And not because the kids have killed each other.
    Caffeine.
    Daddies who change batteries, light bulbs, and replenish the toilet paper.
    Long, hot baths-uninterrupted.
    Under-eye concealer.
    Spill-proof water bottles for kids, spill-proof coffee mugs for mom. Thanks Contigo.
  14. Birthday parties where you are asked not to bring a gift.
    Birthday parties that don’t send your kid home hyped up on sugar and with a bag of unneeded goodies.
    Macaroni and Cheese (for everyone).
    Breyer’s Ice Cream and chocolate syrup (for mommy, not the kids).
    Cute and stylish clothes that are comfortable, functional (can stoop over to wipe snot from kids nose without showing the color of your panties), and machine-washable.
    Pizza delivery.
    Friends that like margaritas.
    Friends that are still your friends when you don’t have time to see them or even call.
    Naps.  Not saying we get them, just saying we are thankful for them.
    Nail polish in far-out colors and the time to apply it.
    The ability to see humor in being pee’d, puked, and pooped on, often at the same time.


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Julia Kinder

Launch of new website and store!

September 14, 2011
posted by
 

Welcome to my new website and store! It is exciting to have more avenues for sharing tips on Getting Healthy Right Now! Together, we will find fun and easy ways to get fit, have more energy, reduce stress, give our kids every opportunity possible, and make time each day for the things we love. I can’t wait to get started!

But first, a big thank you to:

My Family

The twins saw cows for the first time last night at the fair and got to show off their “mooing” abilities. I missed it because I was working.  I promise not to miss any more Right Nows. Thanks for your patience and understanding while I start my new business.

BOLD Marketing

Dana, Erica, Katie, Callie, and all those new people around the ping-pong table: you have brought to life Enk the Duck and the Right Now concept. My designs are fabulous and everything I imagined. Let’s get that party scheduled to celebrate!

Photography by Carrie

My house, and now my website, are filled with amazing photos of my kids. Your creativity inspires me. Thanks for putting my 1 week old twins in an old suitcase! And thanks for showing the world the beauty of children with Down syndrome.

My Patients

You want to be healthy, loose weight, stop smoking and taking medicine; you want to feel great again.  Thanks for sharing your personal struggles so that I can find ways to help you achieve your goals.

My Friends

You know who you are: we’ve shared dreams, triumphs, set-backs, hopes, fears, and wine.  I’m sure the wine was your favorite part.

Mary, Teacher and Maker of Bibs

We’ll have children everywhere filling their brains with knowledge at mealtime!

Brothers All Natural

We share a vision of  helping people get healthy. Here’s to Healthy Snacking and fighting the obesity epidemic together!

Contigo

I count on Hydration and Caffeination to keep me going each day! Thanks for making a product I can take along each day to provide both!

Website Followers

Thanks for following! Now go do 20 sit-ups…Right Now!



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