Ekalaka, Montana: The First Town Over the Border

Ekalaka, Montana: The First Town Over the Border

Ekalaka is the first town west of Camp Crook, the town upon which See Jane Run! and the rest of the Tipperary County Mystery series is based. I snickered when I first heard the town’s name because, I mean really, who names their town something that sounds like a cheerleading chant.

Ekalaka, Ekalaka, shish boom bah!

Someone mentioned that Ekalaka was named after an Indian princess. An interesting factoid to toss around, but that was all to a young college graduate who was pretty sure she knew everything. Before life broadened her lens and took her down a peg or two.

In June of 2007 a fellow writer, who had once lived in Ekalaka, and I visited the tiny western towns where we had once lived. We toured Ekalaka’s museum, which was amazing for a county seat which boasts a population of 369. The museum even has a complete stegosaurus skeleton. More on that in another post.

The exhibit about Ijkalaka Eagle Man, the town’s namesake, took the older and wiser me down a few more pegs. Like twenty. Or a hundred. Or a thousand. When I read the plaque under Ekalaka’s portrait, I thought of the changes she experienced–moving from a Native American upbringing to life on a ranch to her marriage.

How did she navigate those changes? What was it like to see her way of life obliterated? How did it feel to learn you were worth eight horses and a hundred pounds of sugar?  

Those are questions I’d love to explore and answer in a novel. Maybe once the Tipperary County mysteries have run their course. The wonderful thing about fiction is that once the research about a time period and place is done, imagination and life experience can fill in the gaps. They can answer the question that’s niggled at me since I read the plaque in the museum: What it was about Ekalaka that led white settlers to name a town after her? In my book, that’s a question worth answering and a story worth writing.

Eklalaka. It’s a wonderful name for a town.

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The Emotions of an EA/TEF Parenting Life

The Emotions of an EA/TEF Parenting Life

The Emotions of an EA/TEF Parenting Life

The emotions of an EA/TEF parenting life run a gambit of emotions. Emily Duckworth, today’s EA/TEF Awareness Month guest blogger describes how she hangs onto hope when despair creeps in.

Here we go again. Yet another no call, no show with a scheduled interview for a home health nurse for Colt. I am angry and I can’t explain it, but I am also hurt. He deserves to have such an amazing nurse. I look at our son and feel such a mixture of guilt, fear, pride, and joy. These are the emotions of an EA/TEF parenting life.

There is guilt daily.

Wondering what else can I be doing as his Mother? As his advocate? Guilt for the time taken away from his sister when he is in sensory overload and just needs more. Guilt for momentarily losing sight of how far we have come and regressing into the longing for what might have been. The guilt of screaming, “Why him? Why us? Why me?”

I feel fear intensely.

I think about the what ifs. When I think of what he felt birth, what he feels now. Coming early, struggling to breathe, struggling to survive. Continuous appointments, poking, prodding. Fear of where this condition may take us. The fear of losing a child. There are moments of fear so pulling, grating, consuming that I can’t help but release it in a silent scream. Pleading, gripping my chest, losing breath, and feeling a grief I never knew existed.

Then comes joy.

It floods into the darkness. The moments my son truly engages with me and I know he understands. He shows me he is happy regardless of his anomalies, struggles, and pain. The complete joy of seeing him with his sister and their mutual adoration. Joy in every smile, every laugh. Joy in all of his firsts, his own excitement, and his daring enthusiasm in doing the things he has been told not to do. We find joy in his past, present, and future. We know we are lucky. We know we are blessed. We are thankful.

We feel pride.

We are proud of everything he has overcome in such a small amount of time. Pride for how hard he works to try and reach milestones. His struggles to breathe, eat, and talk. He takes his struggles in stride, and though we have terrible lows, we have incredible highs.

We will continue to feel so much more than we knew we could.

But when we lose sight due to guilt, fear, and negativity, we revert back to our need for joy, for hope. The emotions of an EA/TEF parenting life are hard. This life is hard. So hard. But we get to witness a miracle daily and we are so proud of who our son is, who our daughter is, and who we have become as a family of our special needs warrior. 

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I am Emily Duckworth, wife of Cameron Duckworth and the proud Mama of Ayla, 10 and Colt, 2. Our son Colt was born 8 weeks prematurely. Although I had always felt something was off with my pregnancy, we had never expected the diagnosis of esophageal atresia with a tracheoesophageal fistula (EA/TEF). Colt endured 5 surgeries, including the insertion of a tracheostomy tube to breathe due to the lasting effects of tracheomalacia

Author Jolene Philo

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See Jane Run into 2021

See Jane Run into 2021

See Jane run into 2021. Or to be more accurate, see me dance for joy because the revisions to See Jane Run! requested by the publisher are done. That means the manuscript is off my plate for a few months as it's now with book coach Anne Fleck for a consistency edit....

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The Amazing Shrine School for Children with Special Needs

The Amazing Shrine School for Children with Special Needs

The Amazing Shrine School for Children with Special Needs

The Shrine School in Memphis, Tennessee is one of a kind. I visited it in late September of 2017 and was blown away by the building, the teachers, the staff, the parents, and most of all, by the 150 students served there.

I knew this school was something special after spying this multiple child carrier in the preschool hallway.

The school, part of Shelby County Schools, has a unique history and collaboration with the Shriner Organization. The Shrine Board of Control provides funding for special services that benefit the students who attend the school. To be eligible to attend, students (who range from age 3 to 21) must have an IEP, and the need for nursing services must be written into their IEPs. The services offered are amazing. Here are pictures of a few.

Breakfast and lunch for all students. The little girl in the chair is eating breakfast. The cafeteria provides special meals for students who require pureed food, thickened liquids, gluten-free and the like.

Full time, on site physical, occupational, and speech therapists who do some work in the therapy room above or in the classroom.

Special changing tables in the locker rooms for students whose IEPs include water therapy in the pool shown at the top of the page.

Adaptive PE equipment for tots,

tweens,

teens, and young adults.

A fully stocked library run by Ms. Posey, which I think is the best possible name for a children’s librarian.

A life skills area where students learn cooking and housekeeping skills.

The Shrine School also has a full time RN who works with students and oversees numerous LPNs that serve each wing of the school (preschool, elementary, middle school, and high school). Class sizes range from 8–13 students. Each classroom has a full time teacher and at least 2 teaching assistants. The principal has been there 18 years and is passionate about the students. The full time guidance counselor, who first contacted me about speaking at their fall parent resource fair, knows every student by name and is constantly searching for resources for children and families.

Here are a few of the Shelby County resources at  the Resource Fair.

Meet Brittany, a Shrine School Alum, who now works for The Arc in the Memphis area and represented the organization at their booth.

Speaking of families, the Shrine School parents are dedicated and involved. Here are a few of the over 100 who attended the Fall Resource Fair.

The work being done by and with the students dropped my jaw more than once. In 1 classroom, a little boy operated the smart screen with his foot.

He knew exactly how to get to the channel he wanted.

At the end of the day, I visited a middle school classroom. The speech therapist wheeled one of the students into the room and announced that the young girl had “found her voice” that day. “Say hello to everyone,” she instructed a girl with dancing eyes and a radiant smile who was unable to use her limbs or speak because of cerebral palsy.

Then, for the first time in her life, the young girl used her gaze-activated communication board to say, “Hi, how are you?”

Gaze-activated communication board in use!

I watched the teachers and associates lovingly gather around her chair to chat with the student and listen to what she had to say. They kept their cool, but I was in tears.

“This school is amazing,” I told the guidance counselor later as I recounted the story.

“Miracles like that happen here all the time,” she said. “Children take their first steps, start talking, and learn to use the bathroom.”

At the end of the day, I went back to my hotel room grateful to the Shriners for their commitment to children with special needs. But my gratitude pales in comparison to that of the parents.

One after another said, “My child loves it here, and so do we. This is the best school ever.”

And do you know what I think?

They’re right.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

Author Jolene Philo

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See Jane Run into 2021

See Jane Run into 2021

See Jane run into 2021. Or to be more accurate, see me dance for joy because the revisions to See Jane Run! requested by the publisher are done. That means the manuscript is off my plate for a few months as it's now with book coach Anne Fleck for a consistency edit....

read more

7 Inclusive Halloween Posts for Kids with Special Needs and Disabilities

7 Inclusive Halloween Posts for Kids with Special Needs and Disabilities

7 Inclusive Halloween Posts for Kids with Special Needs and Disabilities

Are you planning an inclusive Halloween for your child or students with special needs and disabilities? These 7 posts are full of ideas to ensure that every child can participate in the holiday fun and create lasting memories.

Post # 1: Creating a Successful and Purposeful Halloween

This Halloween series was written by Different Dream guest blogger Amy Stout way back in October of 2011. In Part 1, Amy shares oodles of strategies for creating a successful Halloween. In Part 2, she explains how to use the holiday purposefully, so children learn social skills while celebrating.

Post #2: Creating an Inclusive Halloween

The Connecting for Kids website, Creating an Inclusive Halloween, offers a gold mind of ideas. Tips are categorized in the following categories:

  • Sensory-Friendly Tips
  • Allergy/Food Issue-Friendly Tips
  • Anxiety-Friendly Tips
  • Other Disability-Friendly Tips

As an added bonus, the post offers links to 13 special needs-related resources to investigate.

Post #3: 4 Ways to Hunker Down for a Special Needs Holiday

Different Dream blogger, Barb Dittrich, penned this series. While the tips are not exclusive to Halloween, they provide a framework parents of kids with special needs can apply to all holiday celebrations. In Part 1, Barb encourages parents to determine the main purpose for celebrating each holiday. In Part 2, she offers 3 more tips that can be used to customize every holiday celebration to your family’s values and your children’s needs.

Post #4: 41 Best Halloween Costumes for Kids with Disabilities

Halloween’s not complete with out a costume. But finding a costume appropriate to a child’s specific needs isn’t always easy. This Pinterest board provides a creative jump start for stymied parents. Prepare to smile!

Post #5: 10 Halloween Safety Tips

Keeping our kids safe and secure is paramount at all times. This Special Needs Magazine article is packed with safety tips tailored for kids with special needs and disabilities for every Halloween.

Post #6: Costumes for Kids with Disabilities

Easter Seals has a great post about how to choose a costume that reflects your child’s personalities and interests and incorporates their disability with creativity and style. You’ll want to read it after you’ve checked the above Pinterest article and are completely overwhelmed.

Post #7: Halloween for Kids with Special Needs

Nancy Flanders, who has guest blogged at Different Dream in the past, has an excellent Halloween post at families.com. In it, she offers Halloween tips for kids with autism, auto-immune conditions, asthma, allergies, and speech and language delays. her posts are always practical and doable, so be sure to stop by families.com and give it a read.

Your Favorite Inclusive Halloween Tips?

What’s your favorite inclusive Halloween tip or post? Share them in the comment box if you like.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

 

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

Author Jolene Philo

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See Jane Run into 2021

See Jane Run into 2021

See Jane run into 2021. Or to be more accurate, see me dance for joy because the revisions to See Jane Run! requested by the publisher are done. That means the manuscript is off my plate for a few months as it's now with book coach Anne Fleck for a consistency edit....

read more

Gtube Baby Basics, Part 1

Gtube Baby Basics, Part 1

Gtube Baby Basics, Part 1

Guest blogger Maheen Tarvers, mom to a baby born with EA/TEF, is here to kick off her series about gtube baby basics. In part 1, she reviews accessories that make life easier for both parents and their babies with gtubes.

Gtube Baby Basics, Part 1

Before my son was born, I didn’t know gtubes existed! After he was born, I couldn’t find one article or internet site with the knowledge I needed. I spent hours (I still do) learning and relearning things I wish someone told me beforehand. This series is my attempt to simplify things for new parents. This part of gtube baby basics will cover gtube accessories.

Necessity is the mother of all inventions, especially for parents of a tubie child. I want to personally thank that person who came up with the brilliant idea of making gtube covers, feeding bag holders, connector covers, syringe holders, and adaptive clothing. There maybe more accessories, but I found these to be the most helpful.

#1: Gtube Cover Pads

These are cute, artsy and handy. They keep the site super dry. They are also pain free because there’s no need for pesky split gauze and tapes to shut them, and there is no risk of skin irritation. Cover pads come in cartoon shapes, sizes and cute prints–from Super Mario to Cinderella. They are made to order, and some sellers allow you to choose the fabric, the size and sometimes shapes as well. You might be sad that your baby has gtube, but look at the bright side–you get to shop for something unique!

gtube-collage

#2: Feeding Bag Holder

Parents of children with overnight feeds, I know your pain. Having a baby on a feeding feeding-bag-collagetube is hard and can be exhausting. Even harder is when you are trying get up every other hour to juggle everything for overnight feedings. Feeding bag holders are a perfect solution. When our son had continuous overnight feeds, we used to make a full batch of formula for the night feeds, put it in, and added ice packs. I had peace of mind and sleep at the same time–Ah!!

#3: Connector Holders

I have yet to meet a gtube baby parent who has successfully avoided crib feedings. Luckily, someone came up with a solution, and voila, the problem was solved. With connector holders  placed on the connector, the fear of having a little one kick the connector out during crib feedings and lathering their skin with formula while sleeping is gone. If you use the AMT MiniONE gtube instead of MIC-KEY gtube, your medical supply company can supply night time connectors. They can be used with Mic-key as well, though they are a little snug for the Mic-key button.connector_collage

#4 Syringe Holders

Yes, syringe holders exist and are amazingly useful when traveling. They can be used to store travel syringes–and even an extra extension cord–in your emergency medical supply (EMS) backpack. They in handy when you are in a hurry and forget to grab different-sized syringes on your way out.

syringe_collage

#5: Adaptive Clothing

Adaptive clothing is cute, fashionable and yet very much accessible for gtube babies. The downside is that it can be a bit expensive. If you don’t want to spend a fortune, use snap button onesies, overalls, and wearable swaddle blankets. Or you can cut a hole in the onesie. It won’t last long unless you sew in the ridges of the hole. Also, when you buy a wearable swaddle blanket or onesie with a zipper, be sure to buy ones that close from neck to toe rather than  hip to neck.

Or, you can dress your child like this:

onesie-collage

I call it Superhero in Training, which always starts with wearing underwear on the outside!

Gtube baby basics, especially adaptive clothing, are a niche business. You can find them at Etsy and Facebook. To find other gtube baby basics accessories–from trach covers, adaptive clothing and even beds and inclines–go to the Feeding Tube Awareness Foundation.

There you have it! In coming posts, we will talk more about caring for your tubie, granulation tissue, to emergency medical supply bags, and traveling with your tubie. Until next time, enjoy those cute gtube baby basics accessories for your little one.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Maheen Tarver is a Bengali Muslim born and raised in Bangladesh.  Before she was a full time, messy bun, no makeup, super-busy mom, she was a project coordinator in Bangladesh educating underprivileged, young garment workers about health, safety and environment. She lives with her husband William and son Waqeed Dean (WD) in Massachusetts. Maheen now spends her researching EA/TEF and encouraging other EA/TEF moms to become advocates for their children.

Author Jolene Philo

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See Jane Run into 2021

See Jane Run into 2021

See Jane run into 2021. Or to be more accurate, see me dance for joy because the revisions to See Jane Run! requested by the publisher are done. That means the manuscript is off my plate for a few months as it's now with book coach Anne Fleck for a consistency edit....

read more

Top 10 Signs Your Family Is Full of Tolkien Fans

Top 10 Signs Your Family Is Full of Tolkien Fans

How do you know your family contains generations of Tolkien fans? Here's how I figured it out.The Man of Steel and I are proud of our kids for many reasons. One of our faves is that we turned them into J.R.R. Tolkien fans before the movies came out and remain so to this day.

10. Our family food fave analogies always follow the same formula: I like _______________ as much as hobbits like mushrooms.

9.  Entirely too many family dinner discussions cite Silmarillion references. In great detail.

8.  Family members look for ways to sneak words like “clad” and “strode” and “smite” or “smote” into every day conversation.

7.  We each can describe the cover art on the first Lord of the Ring trilogy we ever read.

6.  Some of our kids’ favorite childhood memories are of reading Tolkien (not only The Hobbit, but also the trilogy and The Tolkien Reader) out loud as a family.

5.  When a family member swallows loudly at any meal, everyone else at the table calls him or her “Gollum.”

4.  We have a family tradition of watching the entire trilogy at some point during Christmas break to commemorate the original releases and our first viewings of the movies in December of 2001, 2002, and 2003.

3.  The under-the-stairs closet with it’s 3 foot high door was immediately dubbed “the hobbit closet” when we moved here in 1991.

2. We agree that Spock and all other Vulcans are Middle Earth elves in disguise.

1. In this family, the word “precious” is uttered in a reedy voice with long, drawn out hisses.

Is your family comprised of Middle Earth fans? Leave a comment to describe how you know.