SpecialMoms Magazine Winter 2014

Page 1

Celebrating the contributions of women who are making an impact in the special needs community Be sure to follow us



Volume 1, Issue 1 Winter 2014

Parenting magazine

The Day My Life

Changed Four Steps To A

Healthier 2014

How We Became the Tips for Launching a Business

Be sure to follow us

Epi-Family Our Food

Allergy Journey

www.SpecialMompreneurs.com Winter 2014 ~ The SpecialMoms magazine   1

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the SpecialMoms Parenting magazine

Hello & Welcome to SpecialMoms!

Publisher & Editor Marla Murasko marlamurasko.com

Design & Layout Design Magic

Featured Moms Drew Long Barbara Worthington

I am so excited to share with you The SpecialMoms Parenting

Lori Holbrook

Magazine. I can’t wait for you to meet these wonderful, inspirational

Sherry Frith

women who are making an impact in the special needs community.

Honey Rowland Cara Koscinski, MOT, OTR/L Katie Driscoll Lauren Kossack Tammy Bowers Lori DeMonia

As a mother of child with special challenges we often feel alone and misunderstood. Upon first hearing that your child will have special needs, your heart sinks, you feel clueless and you begin starting to ask yourself “how did this happen?” For most it may be the start of a long, life changing road that may include financial hardships; decisions about employment; changes that impact

Contributing Writers Cindy Cohen, R.N. C2 Your Health Gina Vercesi

your family and ultimately your own self-worth. But I’m here to tell you that all things are possible when you believe. I love this quote:

In The Mouse House

“You don’t have to be afraid of change. You don’t have to worry

Lauren Kossack

about what’s being taken away. Just look to see what’s been added.”

Our Life As An Epi Family

~ Jackie Greer, First Female Office Of A Major U.S. Bank

Marla Murasko Marla Murasko Enterprises

Cover Photo

Look at what’s being added to your “specific recipe of life” and make the best darn chocolate cake from it that others envy what


you made.

If you would like to be featured

The same holds true in business. Let’s look at the definition of a Mom

or interested in advertising,

Entrepreneur, or “Mompreneur,” as we like to call it. This is a woman

please contact us at:

who has the entrepreneurial drive to manage a family and start


2  The SpecialMoms magazine ~ Winter 2014

and operate a profitable venture that benefits their family.

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Now you add the word “Special” in front and you have added an additional ingredient to the recipe now called a Special Mompreneur! You still have a working mother, who still has an entrepreneurial dream, but has been given additional responsibilities unlike those of other mothers. We have opinions, ideas, and thoughts about life, products, services and resources. We are “thought-leaders … we are change-makers.”

You don’t have to be afraid of change.

We are passionate and driven. We are fearless, we don’t surrender. We ask questions and we normally don’t take “no” as an answer. The special needs community is a tight knit group of women, who look to each other for support, advice, friendships and as mentors.

You don’t have to worry

We respect and value each other’s choices and opinions. Over the years, I have had the wonderful privilege of meeting such very passionate and talented women and felt that they needed a platform to celebrate their strength and successes ~ hence the

about what’s being

birth of The SpecialMoms Parenting Magazine. It was designed to Support…Inspire…and Share our lives as mothers, advocates,

taken away.

wives, teachers and caretakers, as well as smart, beautiful business women. I hope that sharing their lives and contributions, it will empower you

Just look to see

to take control of your life and destiny and make the best darn chocolate cake you know how to make!

what’s been

Be certain to join us on Facebook, Twitter and Pinterest, and join our revolution of SpecialMoms, because your story might just inspire another! Here’s to reaching for your dreams,


added. Jackie Greer, First Female Office Of A Major U.S. Bank

Winter 2014 ~ The SpecialMoms magazine   3

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What is a

Special Mom? by: Marla Murasko


definition of a Mompreneur (Mom Entrepreneur) by Wikipedia is “a female business owner who is actively balancing the role of mom and the role of entrepreneur.” Now add the word Special in front and you have added an additional ingredient to the recipe now called a Special Mompreneur ~ SpecialMom for short.

So Who Are We? Some people still may not know exactly what that means, so let me take the time to explain it. We are a community of like-minded moms who all have one thing in common…we care for a child with a disability. We are still mothers, wives, daughters, business women, friends and peers. We have similar interests, dreams and ambitions. We may own our own business or may be researching how to start one, while juggling the demands of being an advocate, caregiver and mother.

We have opinions, ideas, and thoughts about life, products, services and resources. We are thought-leaders … we are change-makers. We are passionate and driven. We are fearless, we don’t surrender. We ask questions and we normally don’t take “no” as an answer. We may all have the same questions, concerns or experiences when it comes to the daily struggles of caring for a child with special needs, running a business, taking care of ourselves in the process, and how not to loose sight of the other members in our family. Some people say that it takes a special person to care for a child with special needs, we call it a privilege. A wonderful responsibility that only we know, that we have been hand-picked by God to care for Heaven’s Special Child! We are a supportive group of moms who look to each other to network, inspire, support and dream together. We are a family! u

About the Author: Marla Murasko is a proud mom, wife, special needs mom and lifestyle blogger, health activist, parenting mentor, author & mompreneur. She is the Founder of the following blogs: SpecialMoms, Special & Determined and President of Marla Murasko Enterprises, Inc. She is a published Author of “Jacob’s Journal – My Journey Home”. Connect with Marla … http://marlamurasko.com , Facebook, Twitter, Pinterest

4  The SpecialMoms magazine ~ Winter 2014

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In This Issue ... Feature Article



Regular Section

Caroline’s Cart The first ever patented shopping cart for children and adults with special needs. Winner of the International 2013 Davinci Awards.

4 10 13 17

What is a Special Mom?


Book Reviews

ChatBag LLC


Caregiver Cards

The Day My Life Changed


Apps We Love!


Sure You Can Have That!

Help Us Find a Cure For Juvenile Dermatomyositis

Allergy-Free Dining at Disney World


How We Became The EpiFamily: Our Food Allergy Journey


Our Life as an Epi-Family

23 25 26

Sticky Icky Booger Bugs


5 boys + 1 girl = 6 Photography

Book Suggestions


Author of Leah’s Voice


LionHeart Innovations

28 33

4 Steps To Help You Help Your Family To Eat Healthier in 2014 The Pocket Occupational Therapist Honey’s Life

The Pocket Physician


Top 10 Questions To Ask Before Launching Your Own Business Winter 2014 ~ The SpecialMoms magazine   5

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Caroline’s Cart The first ever patented shopping cart for children and adults with special needs.

Drew Ann Long Alabaster, Alabama www.carolines-cart.com

6  The SpecialMoms magazine ~ Winter 2014


@carolinescart caroline-s-cart

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Feature Interview

She keeps me humble. She has

opened my eyes as to what is truly important

in this world.

How old is your business/ organization: January 1, 2014 starts our 6th year

Tell us a little about yourself: I am a stay at home wife and mother to 3 children. I have a BS degree in business from LSU.

Tell us about your family (other children, ages, hobbies): I have 3 children, 16, 13, and 9. My middle child has special needs, she was born with Rett Syndrome. My children are my main hobby, but I also enjoy scrapbooking.

Share with us the diagnosis of your child with special needs, how did you find out? Caroline has Rett Syndrome. I knew something

was wrong when she was about 12 months old. She was officially diagnosed at 3.

What is the most rewarding thing about being the mother of a special needs child? To know what it means to receive and give unconditional love. She keeps me humble. She has opened my eyes as to what is truly important in this world.

Briefly explain to us about your business/charity and why you decided to it? Caroline’s Cart is the first ever patented shopping cart for children and adults with special needs. Retailers have never provided a special needs shopping cart for their customers. Every community in the US and abroad has children and adults that need Caroline’s

Winter 2014 ~ The SpecialMoms magazine   7

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Feature Interview

Caroline’s Cart was awarded the 2013 International Davinci

Award. This was a huge extremely thankful.

Cart. The need is unmet. I wanted to change this. I believe all children, regardless of ability, deserve the same equal opportunity shopping experience.

What was the biggest struggle you encountered when starting your business/charity? A special needs shopping cart has never been on the market.

What advice can you offer to other mothers who are looking to start a business or charity? Learn the industry inside and out. prepared for major hurdles.


Assemble a

team of professionals to guide you along the way.

Set goals, but be flexible in all

aspects of meeting/changing/and adapting them.

honor and we are

Failure is OK!

let it motivate you.

Don’t let it stop you, Learn to “filter” advice.

Not all advice you will get is good. and courageous. mighty adventure.

Be bold

Your about to set sail on a This is your dream!

and only you can make it happen. 8  The SpecialMoms magazine ~ Winter 2014


When you attempt something

that has never been done before you are paving the way ... you are writing the book.

I found

that many retailers liked the idea of Caroline’s Cart, but said they had no one in their stores that would need it.

I had to educate many

retailers that in fact they did have families in their community that needed Caroline’s Cart ... they just were non visible because their store was not accessible.

Tell us what a typical day looks like in your household? With three children, our daily life is extremely busy. My husband often travels which only adds to the craziness. My oldest daughter is

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Feature Interview What motivates you? Caroline, of course, is my motivation...but also I have received thousands of letters over the years from families thanking me for tackling this issue. Millions of families want and need Caroline’s Cart in their store. I am thankful for every letter I have ever received! I wanted to quit this journey many, many times, but I feel an obligation to every family who has a child that needs Caroline’s Cart. I am one of them.

Is there a charity or organization you volunteer for and/or support and why? Caroline’s Cause and Easter Seals. We have established Caroline’s Cause as an initiative to help qualifying organizations join us in raising an extremely busy teenager as she is active

awareness and funding through sponsorships and

in dance and Miss America Organization

co-branding opportunities via sales of Caroline’s

pageants, Caroline stays busy with school and

Cart. For every Caroline’s Cart sold, a portion

therapy, and my son is beginning an active life

of those proceeds will be allocated to support

involving social aspects and athletics. We are

the mission and vision of Easter Seals and other

also very active in our church which adds to

organizations focused on improving the quality

the mix.

of life for special needs children.

How do you balance work and family life?

Caroline’s Cause is funded by generous retailers who purchase Caroline’s Cart, in turn providing

I try to do all of my work while the kids are at


school. Once they get home, I try to focus on

children, the option of including their child in

them, homework, and activities. It’s not always

the shopping experience.

easy, but something that I make work.

Do you have any awards or recognitions you want to share? Caroline’s










What do you see in the future for your business or charity? Our goal is to enable special needs children to


more easily be included in their family’s every-

International Davinci Award. This was a huge

day life by making Caroline’s Cart available at

honor and we are extremely thankful.

retailers across the country.


Winter 2014 ~ The SpecialMoms magazine   9

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CHAT Bag LLC. We design and create bags, mainly for the Apple iPad and Apple iPad Mini, that allow the user to carry their device functionally by having the screen exposed all the time, and offer adjustable straps! How old is your business/ organization: CHAT Bag started selling online in 2012. However, we began behind the scenes in 2010 by trying out and designing CHAT Bags, placing a patent on the CHAT Bag, trademarking, and many other fun adventures that go along with starting a business!

Tell us a little about yourself: I am married to my best friend and husband, David! He is such a blessing to our family and such a support to me in getting CHAT Bag off the ground, while working his Full Time job. David also helps out when we speak as parents about the benefits of the iPad with Special Needs!

Lori Holbrook

facebook.com/CHAT BAG

St. Peters, MO

@ chat_bag



10  The SpecialMoms magazine ~ Winter 2014

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Interview Tell us about your family (other children, ages, hobbies): David and I have 2 beautiful children. Holbrook III, is 15 years old.


What is the most rewarding thing about being the mother of a special needs child?

David is a very

The most rewarding thing about being a mother

motivated young man who was a Black Belt by

of a child with special needs is to see life through

age 11, and an Eagle Scout by age 13. In his free

their eyes. We live in a world that is so fast paced

time David loves to mess around on the computer,

and rushed. Hannah reminds me to slow down,

hang out with friends, and rollerblade. Hannah

look around, and have a few giggles at the things

Holbrook is age 10. Hannah is our special needs

I might not see in the day to day grind. Hannah

child and such a gift from God!

Hannah was

has blessed so many and has taught us so much.

born with Down Syndrome and later diagnosed

Her disabilities have shown us her abilities to

with Autism and Apraxia.

Hannah LOVES to

overcome the challenges! Yes, some days are

swim, roller skate, and participates in special

difficult, but that precious smile at the end of the

needs Cheerleading. Hannah began using the

day makes it so worthwhile!

Apple iPad as an Augmentative and Alternative Communication device (AAC) in 2010 which motivated me to design the CHAT Bag.

Share with us the diagnosis of your child with special needs, how did you find out?

Briefly explain to us about your business/charity and why you decided to it? We design and create bags, mainly for the Apple iPad and Apple iPad Mini, that allow the user to carry their device functionally by having the

Hannah was born in 2003 with Down Syndrome!

screen exposed all the time, and offer adjustable

We had no idea that she had Down Syndrome

straps! There are lots of fun cool fabrics to choose

until she was born and additional testing was

from! Special Orders can be done for other

done. No matter what Hannah was such a joy


and special addition to our family! She touched everyone the minute they met her.

At age 4

she was diagnosed with Autism. Concerns were brought up in Preschool and later addressed by a Neurologist. At age 7 she was diagnosed with

What advice can you offer to other mothers who are looking to start a business or charity?

Apraxia of Speech. This diagnosis took longer to

The biggest advice I can offer is to take your time!

take, but once she received it we began trying

Yes, I can say some days were easier than others

out the Apple iPad, through our local school

for me to do this myself. I wanted to jump right in

district. They have been wonderful in opening

and make it happen. However, I quickly learned

the doors for children like Hannah, to begin using

there is so much to do and research and I found

the iPad as a Augmentative and Alternative

this overwhelming at times. I had to learn to be

Communication device, and much more!

patient! Thankfully, over time, I was able to attend Winter 2014 ~ The SpecialMoms magazine   11

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Interview some classes about starting a business, as well as

appointments, extracurricular, some CHAT Bag

talk to various professionals about various aspects

work when I can, and much more. I try to slow

of opening and running a business! Also, social

it down on the weekends, especially Sundays for

media has been such a help in getting CHAT Bag

church and precious down time with family.

out there! We have been online for 2 years and have sold in 40 states and 6 countries!

Do you have any awards or recognitions you want to share?

What was the biggest struggle you encountered when starting your business/charity?

The thank you’s from parents, therapists, teachers are my awards. I am so grateful that CHAT Bag

I would say the biggest struggle for me was patience. Sometimes I wanted to hurry up and move on! I tend to be an over achiever and set

helps these individuals carry their voice and motivates them to use it! I cherish each one of their statements!

high time restraints on myself. I have learned that my timeline might not be someone else’s. I love to check my list off and make it happen but being

What motivates you? Helping others! I have seen now that Hannah’s

patient for a brief time is OK too!

disabilities are allowing me to not only see her abilities but mine too. I created CHAT Bag initially

Tell us what a typical day looks like in your household? A typical day in my household is hectic.

to solve her problem, now it is helping many. She is my inspiration to keep moving forward! My

husband is on a unique schedule for his job so I basically get the kids where they need to go daily. Between school running, therapy appointments, extracurricular activities, CHAT Bag work, church,

Is there a charity or organization you volunteer for and/or support and why?

family get togethers, somehow we make it

My dad is a member of the Lion’s Club. For about


These times are precious though, as

20 years they have done a car show to raise

they go by so quickly so I am trying to enjoy them

money for the blind and other special needs. Our

while I have them!

family has participated in this from the beginning!

How do you balance work and family life?

What do you see in the future for your business or charity?

Very carefully. God and family come first before

I would love to see CHAT Bag continue to be

work. Normally when I get the kids off to school

used by many!

I spend that time to work on CHAT Bag. When

parents, are all using them now and for that I am

they are off school this time is used for therapy

grateful. u

12  The SpecialMoms magazine ~ Winter 2014

Teachers, therapists, students,

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Feature Article

The Day My Life Changed By: Marla Murasko On March 22, 2006, my life changed forever. I became a mother of a beautiful baby boy born

there was more, I just didn’t know it at the time!

with special needs. After a Level 1 ultrasound

I could not get my head wrapped around

and blood work since I was considered “high

what that meant and what my responsibilities

risk” because of my age. I was given the news

as a mother of a special needs child would be.

my son had a congenital heart defect, that

However, it became very clear from the moment

would require very close monitoring during

my son was born, that his needs were now going to

my pregnancy and him having open-heart

be my top priority, and that my life would change

surgery at approximately six months old. But

as I know it. Winter 2014 ~ The SpecialMoms magazine   13

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Feature Article Finding my place When I married my husband, I knew that he was on the fast track in his career and that the possibility of me moving to a new state every 3-5 years was imminent. However, looking for a new job with

wherever my husband’s job landed us, with the added benefit of owning my own business.

My Life Took a Dramatic Change

every move was not appealing to me. So I did

As I started to “set up shop” as a small business

some research on the internet of how I could work

owner, I also dreamed of being a mother. That

virtually and being that I was an Administrative

did not come so easy for my husband and I, and

Professional with over 15 years of experience I

we soon found ourselves going down the road of

focused there.

infertility intervention. After several procedures, I needed to take a break. It was starting to take

Subsequently, I began to research “work from

a toll on me physically, mentally, and emotionally.

home” administrative positions and was fortunate

Miraculously as soon as we stopped all the shots

to find a job for a company that was based in

and procedures, I became pregnant. We were so

California, but allowed me the opportunity to

excited; my life was now starting to come together

work from my home in Illinois. I enjoyed it. It gave

the way that I envisioned it. Happily married, living a

me the knowledge and

good life, owning my own



business and a mommy

to find my place in the

to be! What more can a

virtual business world.

girl ask for.






However, at about 4

stumbled upon a position











Virtual Assistant, where I


could continue to work


in the administrative field

had a congenital heart

and support clients all

defect and the possibility

over the country virtually


from my home office,



this defect was extremely



news. that









have been at the time.


This was it; this was the

dissuade us from having

position I needed.


him; we just needed to

was how I would be able

make alternate plans. So


now, the task of finding



14  The SpecialMoms magazine ~ Winter 2014

But that didn’t

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Feature Article specialists to care for me and my son during my

reliable, loving nanny began again. I was once

pregnancy and after his birth began. Therefore,

again extremely fortunate because I found an

my business went on hiatus.

older woman who had an older child with special needs herself. I felt this was the perfect fit. She

After his birth was a whirlwind of a month and

became like a surrogate grandmother to my son,

a half hospital stay for both my husband,

since my family was on the east coast and

my son and I as he required

a surrogate mom for me when I

heart surgery at sixteen days and




Long story

short my journey as a mother with a special needs child began.



was a whirlwind of a

caring for him, teaching

month and a half hospital

him, loving him like he was her grandchild and just

stay for both my husband,

As I stated, I learned very

She did a wonderful job


needs were going to be

created a lot of special

my son and I as he

memories with him. She

required heart surgery at

helped me with small

sixteen days old ...

my top priority and all the rest would fall into place. So began the visits with therapists, specialists and frequent hospital stays. There was just no time for me to pursue my business. He was my priority.


needed someone to talk to.

After his birth

chores around the house which was so helpful like the laundry, cleaning dishes,

vacuuming. This really helped me

to concentrate on my business and it began to grow.

Motherhood to Mompreneur

Nevertheless, I started to get into a routine with

My son has taught me a lot over the past seven

him. As I started to understand his needs and felt

years, and one important lesson was determination.

comfortable staying home with him, I then started

It hasn’t always been easy that is for sure. On the

needing more for myself. I wanted to go back

days that my Nanny couldn’t come because of

to work, and began running my business again. I

illness or other commitments, I would find myself

knew that was not going to be easy by myself, so I

running him to therapy appointments and bringing

searched for a nanny. I was fortunate; I was able to

my laptop with me. Or after taking him to school,

find a reliable high school girl that I trusted. Because

I would work on my business. There were a lot of

I worked from home, I was able to help her if she felt

late nights after he went to bed getting my clients

uncomfortable or just needed some help with him.

work done, but I did it.

It all worked out, we became a little family. It definitely is a juggling act. I cannot say that I Well she soon graduated from high school

have found “balance”; however, I can say that “I

and was leaving for college, so my search for a

believe I have learned how to be comfortable in Winter 2014 ~ The SpecialMoms magazine   15

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Feature Article the chaos.” I work hard to make it all work. Some

am a professional and a business owner and that

days I succeed and there are other days I feel that

flexibility and good communication was very much

I failed.

needed to make it a good working relationship for

What I learned was to be very transparent with

both of us.

my clients and let them know that I was foremost

So in the end, with a good plan, determination,

a mom and that my child had special needs and

communication and belief in yourself, you too can

would require more of my attention at times. But I

create your dreams!


About the Author: Marla Murasko is a proud mom, wife, special needs mom and lifestyle blogger, health activist, parenting mentor, author & mompreneur. She is the Founder of the following blogs: SpecialMoms, Special & Determined and President of Marla Murasko Enterprises, Inc. She is a published Author of “Jacob’s Journal – My Journey Home”. Connect with Marla … http://marlamurasko.com , Facebook, Twitter, Pinterest

Are you a Mom with a Dream of Becoming an Entrepreneur? Empowering SpecialMoms With a Dream of Becoming an Entrepreneur A blueprint for all mothers with a dream of owning a business. Whether you are a caretaker to your child with special needs, have a large family or are a single mother. If you have a dream pursue it! In this ebook I share with you my dream. My dream of owning my own business, becoming a mentor all while caring for my child with special challenges. I give tips on how to become an entrepreneur. Click here to download your Kindle version of the ebook.

Click here to download your Kindle version of the ebook. 16  The SpecialMoms magazine ~ Winter 2014

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Advocates Corner

Help Us Find a Cure For

Juvenile Dermatomyositis (JDM) in 2014 by: Haley Ibrahim


e are very fortunate. Lucky even. We often

to win a big prize. Terrible odds, right? Might as

say that we have so much to be thankful

well head to the concessions and forget the

for because we have a very healthy sick child.

whole thing. Totally agree. Except, we did “win.”

Elia appears to be like every other 2-year-old. She

Our name was called and we didn’t want the

loves to sing, dance, run, blow bubbles, and her

prize. Want to hear what we won?

favorite color changes with the time of day. When people meet her they often comment on her outgoing and funny personality. In her mind, every

Since there’s no cure YET, we won a lifetime supply of:

song deserves a boogie (or two), every flower

• A super immune system that doesn’t know

deserves a ‘niff, and every outfit needs proper

when to stop fighting and turns on itself

accessories. Her, and her little brother Zavier, add

attacking her skin, muscles, and potentially

so much happiness to our days.

every other system in her body.

And somehow, at just 2-years-old, she manages

• Dangerous sun sensitivity, which requires

to be all these things while fighting a battle

constant use of sunscreen, hats, and protective

that we can’t relate to or understand. Elia was


diagnosed on May 22, 2013 at 22 months with Juvenile Dermatomyositis (JDM). It’s an extremely rare autoimmune disease that affects about three in every one million children per year. How rare is that? Imagine if 15 professional football stadiums were filled to capacity and three lucky fans were picked at random out of everyone in attendance

• Medications that are harsh, unpredictable, and cause other side effects that go beyond the disease itself. •

IVs, infusions, blood work, MRIs, strength

tests, swallow tests, school and work absences, hospital stays, and fear and isolation during cold and flu season.

Winter 2014 ~ The SpecialMoms magazine   17

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Advocates Corner Some prize, huh? Fortunately,


• is

Apply sunscreen through-

out the day (every day)–even


when we’re inside.

great. She’s responding well to the medication and her

doctors believe that she is

and monitor the UV Index on a

well on her way to remission.

daily and even hourly basis.




her dosages and her infusions

Avoid the peak sun times

Wear hats and protective

clothing if we have to be out

have decreased from once

during high-risk times.

a week to once a month. If all continues in a positive

• Do our best to avoid germs by

manner we’re hoping that her

washing our hands, sanitizing

treatment will be a total of two


years from diagnosis. In the

contact with those who may

grand scheme of things that’s

be contagious.

pretty fantastic. We know how lucky we would be if that really was the outcome. Most JDM patients are in treatment for a minimum of 4-6 years. And sadly some will always be undergoing treatment. The thought of eliminating the medications and treatments, mood swings, changes in appetite, and energy fluctuations is the light at the end of a very long and winding tunnel. We’re hoping she enters remission and all of these things will become a distant memory for her, and that because of her age, she’ll only “sorta” remember.



• Learn to manage stress in a healthy way. Yes, even at two years old. And yes, this is a work in progress. Believe me; we understand how wonderful it would be for her to be in remission. And, trust me when I say we won’t take it for granted, not even for a second. But, we’ll admit we’re still sad for her. When we think back to our childhood we remember long days at the park, swimming, and playing sports like softball, tennis and soccer. While these things are not impossible they will have to be

Even though our best-case scenario will be a

much more calculated and will lack the innocent

much different life than we have right now we’ll

spontaneity that should accompany childhood

still be fighting the fight to keep her from having

memories. Even the well planned family vacations

a flare and returning to an active stage of the

will now be scheduled according to risk rather

disease. For her to remain in remission we’ll need

than typical school and work schedules.

to avoid her triggers which are thought to be sun exposure, viruses, and stress. In theory, if we can minimize the triggers we minimize her risk. Easy enough, right? I mean, what are the chances of her being exposed to the sun, germs, or stress? So, even in remission, we will: 18  The SpecialMoms magazine ~ Winter 2014

There are so many things that we now have to consider that never crossed our minds just months ago. It’s amazing how life changes in the blink of an eye. For instance, our next home will be selected based on the available shade in the yard, the placement of the windows in her

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Advocates Corner bedroom and throughout the house, and will be

So, even though she “looks” healthy and she’s

one level in the event she experiences muscle

heading in the right direction we’re not stopping

weakness or deterioration. When she starts school

until there’s a CURE.

we’ll need to make sure her desk isn’t too close to the windows in her classroom, that she and her teacher understand the importance of proper sunscreen application, and that we’re made aware of any viruses affecting the students. As for now, we’re sad for the day when the neighborhood children ask if she wants to come out and play and we have to calculate the risk, take precaution, monitor the clock and bring her back in before she’s ready. We know this day is coming because we spend at least a day or two a week consoling her as she peeks out the window watching the other kids play. It breaks our hearts and we don’t even know how to begin to explain it to her.

In fact… Until there’s a CURE, we’ll be raising awareness by sharing our story.

Here’s how you can help: CureJM is in a contest with 700 charities to raise the most money by January 9th. We’re currently in 1st place, but quickly losing our large margin. If we win we’ll get another $100,000 to add to what we’ve already collected. Winning this money would allow CureJM to fund critical research and get closer to a CURE! Can you help by making a donation? Every dollar helps, can you spare a few?


About the Author: Haley Ibrahim a Mom, Blogger who blogs at www.teamibrahim.com and a member of Team Ibrahim. Our team includes a DIY-ing, Crafting, Top-Chef Wanna-Be Mommy, a Daddy who lives for BBQ season and competes on a team at the “World Series of BBQ”, who is an expert-traveler, and speaks several languages, none of which include the one our one-year old daughter speaks. Elia is always on the go and loves her big brother, Jackson, who is a Husky-Beagle mix who adopted us over 6 years ago. We love learning new things and one way that we do is to try Pinterest projects and share the results with YOU! Follow along to see the good, the bad, and the “OMG-UG-LEE!”

= FunBites ... Fun Shapes. Fun Food. Fast. Free Shipping with code: FreeShipNow

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Feature Article

How We Became The Epi-Family: Our Food Allergy Journey by: Lauren Kossack Food allergies.

What do you know about food

are the same. He wrote us a script for EpiPens® and

allergies? I didn’t know much of anything until 3 years

sent us on our way. Little did I know that this was just the

ago. My oldest was 1 ½ and it was the first time that

beginning of our journey.

we’d given him eggs. They were scrambled and we were allowing him to dip them into ketchup. He was

I also had an 8-week old at home that I was nursing. A

only a couple bites in when I thought his face was

couple months after receiving my oldest’s food allergy

swelling and had hives but for a split second I tried to

diagnosis, we were advised to supplement my youngest

convince myself it was just the ketchup that he had all

with formula at night, as he was now 4 months old and

over his face. It wasn’t until I wiped off his face that I

still demanding to nurse every 2-3 hours. He was only 2

realized that he really did have large, raised hives. They

ounces into his bottle when I noticed that everything

covered everything that the eggs touched: his lips, his

that the formula (dairy based) came in contact with

hands, his cheeks. Not knowing anything about food

was swelling. We immediately stopped giving him the

allergies at this point, I frantically called our pediatrician

bottle and called the doctor. We were advised to

who directed me to administer a dose of Benadryl and

watch him. The reaction eventually subsided but the

watch him for 2 hours to make sure the reaction went

next day he was covered in hives from head to toe.

down and didn’t return. We were fortunate that his

This is when my research into the world of food allergies

reaction didn’t progress. Soon after his reaction we

actually began. I knew that I wanted to continue to

quickly made an appointment with a pediatric allergist

nurse so I eliminated dairy from my diet. It was exactly

to have formal testing done. Sure enough, he tested

1-month later when we tried a soy-based formula that

positive for an egg allergy. The doctor shared with us

we had another reaction. This time it involved projectile

the dangers of food allergies, anaphylaxis, and the

vomiting for 2 straight hours followed by head to toe

signs and symptoms to watch for as no two reactions

hives. With each reaction that my youngest had, I

20  The SpecialMoms magazine ~ Winter 2014

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Feature Article eliminated more and more foods from my diet. By the

I did what any mom would do...research, research,

time he was 8 months old, I had eliminated dairy, soy, fish,

start a blog, and research some more. Okay so maybe

shellfish, wheat, gluten and eggs. We were chugging

not everyone would start a blog. I did it so that I could

along and although I knew that life-threatening allergic

write about our daily challenges and victories as a

reactions (anaphylaxis) were always possible, I never

therapeutic outlet for myself and a way to educate

really thought that one would happen to my little men.

close family and friends on the reality and dangers of a food allergy diagnosis. I knew that the only thing that

When my youngest was 8-months old, I had eaten a

could save my little men was educating others about

peanut butter sandwich for lunch and all we can figure

the disease or putting them in a bubble, but the bubble

is that I didn’t wash my hands with soap and water. (If

store was fresh out of life-size bubbles!

you don’t use soap to wash your hands, the

food proteins that trigger reactions are

In my research, I began to seek

still present.) Not long after, it was After he finished I noticed that his face was swelling. He was acting normal so I called my mom, a nurse,

families were just like ours.

are on the rise. If you

I wanted to hear from other food allergy moms

don’t know someone who

and filled her in. She told me to watch him and if he started to exhibit any strange symptoms to call 911.

wanted to know that other

Sadly, food allergies

In the meantime I

couldn’t help but notice that

who had gone before me because it was easy

has food allergies now, chances are in the next few years you will.

he was looking more and more

“cannots” and “what-ifs.” I found a local support group and soon took over as the coordinator. We meet

monthly and discuss many topics

puffy in the face. I ripped his clothes off of him and noticed that his body was

to get stuck in the daily

time for him to nurse again.

out other food allergy parents. I

pertaining to food allergies. Honestly,

it’s just nice to be around other parents who

covered in hives. I panicked and called the pharmacist

worry about the same things that I worry about on a

to find out how much Benadryl I could give him. As I drew

daily basis.

up the proper dose he began to turn blue and gasp for air. I called 911 as I tried to administer the Benadryl. By

My little men are now 4 ½ and 3 and the list of

the time the paramedics arrived, his swelling was starting

allergies between them include: dairy, soy, egg, peanut,

to go down and he was no longer a pale shade of blue.

tree nuts (including coconut), fish, shellfish and sesame.

He was breathing on his own but they still insisted that we

I’m finding that with every age and phase of life the

go to the hospital. It was while we were sitting in the ER

challenges change. Now that both of my boys can

as the doctors monitored my little man that the reality of

communicate what they are feeling I don’t feel as

what had just happened began to sink in. My 8-month

though I have to watch them as closely as I did when

old son, who couldn’t communicate with me as to what

they were still toddlers. I’ve also learned how to read

was going on, just had an anaphylactic reaction. As I sat

labels well and am confident in my understanding of

there reliving the experience, fear began to set in. How

their allergies to know that the food that I’m giving

can I keep him safe? What if it happens again? What if I

them is safe to eat. Of course that doesn’t mean that I

don’t recognize the signs and symptoms? HE COULD DIE.

haven’t messed up here or there. Since that fateful day Winter 2014 ~ The SpecialMoms magazine   21

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Feature Article when I had the peanut butter sandwich for lunch, both

initially subsiding and experts recommend an

of my boys have had a severe anaphylactic reaction.

observation period of about 4 hours to monitor

We actually almost lost my youngest as he went into

that the reaction has been resolved.

anaphylactic shock. It’s a memory that often haunts my dreams and still brings tears to my eyes. You can read all about his last anaphylactic reaction here. Sadly, food allergies are on the rise. If you don’t know someone who has food allergies now, chances are in the next few years you will. Here are some food allergy statistics taken from FARE: Food Allergy Research and Education...

• Eight foods account for 90% of all reactions: milk, eggs, peanuts, tree nuts, soy, wheat, fish and shellfish. Even trace amounts of a food allergen can cause a reaction. As with any child with special needs, the parents are the greatest advocates. If we don’t advocate for our children and their needs, who will?

• Food allergies affects 1 in every 13 children

In our

case, if we don’t educate those who care for our

(under 18 years of age) in the U.S. That’s roughly

little men about their allergies and they give them

two in every classroom.

one of their allergens then they truly only have a few

• Every 3 minutes, a food allergy reaction sends someone to the emergency room – that is more than 200,000 emergency room visits per year. • Symptoms of anaphylaxis may recur after

short minutes to respond with epinephrine before we could lose them forever. Are you advocating for your child? By doing so you’re not only helping your child but all of the other children who struggle with the same need. u

About the Author: Lauren Kossack is the founder and author of the blog, “Our Life as an Epi-Family.” On “The Epi-Family,” Lauren writes with a mix of vivid stories, food allergy news, recipes, parenting tips, and questions of faith. Lauren bares her heart as she shares her family’s struggles, victories and daily adventures. She is a proud wife and mom to two young boys who have lifethreatening food allergies who appear often on her blog. She graduated from Anderson University in Anderson, Indiana, where she studied voice performance and management. Along with writing, blogging, creating new allergy-free recipes and being a wife and mom, Lauren also teaches private voice and piano lessons out of her home. Lauren and her family currently live in Indianapolis, Indiana. For more information about Lauren and her family, visit www.epifamily.com

22  The SpecialMoms magazine ~ Winter 2014

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Sticky Icky Booger Bugs A day in the life of a young boy living with Cystic Fibrosis Tell us about your family (other children, ages, hobbies): I have 3 boys-Kyle (20), Kevin (15), Kory (11), and a grandbaby named Lacey Ann. All three boys have their fair share of medical conditions. All three were diagnosed with Arrhythmogenic Right Ventricular Dysplasia (ARVD) in 2010.

The older

two have pacemakers and Kory will soon be having surgery for his pacemaker. Kevin and Kory were both diagnosed with Cystic Fibrosis when they were younger.

Our day usually revolves

around treatments and there sporting events.

Share with us the diagnosis of your child with special needs, how did you find out? Kory first complication was when he was two, his blood sugar dropped dangerously low. His pancreatic ducts were clogged. After two years of testing, multiple of doctors, and a genetic test confirmed cystic fibrosis.

Sherry Firth Bakersfield, CA



Winter 2014 ~ The SpecialMoms magazine   23

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Interview What is the most rewarding thing about being the mother of a special needs child? Just blessed that they are here and are capable of a somewhat normal life.

treatments, and dinner in the evening. Around 10 pm, I return e-mails and go to sleep.

How do you balance work and family life? Honestly, some days I cannot balance both. If

Briefly explain to us about your business/charity and why you decided to it? “Beat Snot” is the team name for Kory and Kevin at The Great Strides Walk for Cystic Fibrosis

the boys are sick they are my number one priority, then work.

Do you have any awards or recognitions you want to share?

fundraiser in our local town. I had several people

I do not have any awards.

who turned into customers wanting the shirt. A

is people passing along Kory’s story to bring

percentage of the proceeds are donated to the

more awareness to cystic fibrosis with blogs and

CF Foundation on my son’s behalves.


What advice can you offer to other mothers who are looking to start a business or charity? Must have patience, be persistent, and follow up on all paperwork.

My recognition

What motivates you? Kyle, Kevin, and Kory continue to motivate me. Children have a wonderful innocence; their questions and answers can bring tears of laughter or sorrow to a conversation.

What was the biggest struggle you encountered when starting your business/charity?

Is there a charity or organization you volunteer for and/or support and why?

Not having enough hours in the day to complete

I support and volunteer at the Sudden Cardiac

what I want.

Arrest and Cystic Fibrosis Foundation. With the boys having heart and pulmonary

Tell us what a typical day looks like in your household? My day starts at 5:30 am with shower and the start of laundry. Kory and Kevin wake up 20 minutes apart to begin the treatment process. My day is occupied with work and cleaning the house. With

conditions, I feel the need to give back. Both these foundations have helped with co-payments and costly prescriptions.

What do you see in the future for your business or charity?

this disease germs need to be eliminated to help

I hope to bring awareness to childhood

reduce infections and hospital stays. Homework,


24  The SpecialMoms magazine ~ Winter 2014


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Book Suggestions

The Dream Giver Everyone should read this book. It provided me great strength along my journey. ~ Drew Long

Chicken Soup for the Soul I love to read Chicken Soup for the Soul series. They are short, meaningful, and I can finish stories in a siting.

Out of My Mind

~ Sherry Firth

For Business: The E-Myth Revisited: Why Most Small Businesses Don’t Work and What To Do About It by Michael E Gerber For Alzheimer’s: Coach Broyles’ Playbook for

Alzheimer’s Caregivers by Frank Broyle For Autism: Overcoming Autism by Lynn Kern Koegel. The Book Thief by Markus Zusak

~ Barbara Worthington

Hannah’s special education

teacher recently suggested the book, Out of My during it too. What a wonderful book to read and

The Out of Sync Child and The Out of Sync Child has Fun. They’re awesome and great for ANY child.

see through the eyes of a child with special needs.

~ Honey Rowland

Mind by Sharon Draper, I had a few good cries

~ Lori Holbrook I truly feel that my book, The Pocket Occupational

Lara Casey’s Power Sheets I don’t have a

Therapist is a wonderful way to have your OT in

favorite book but as I mentioned above, I strongly

your pocket-right there when you need him/her.

recommend purchasing Lara Casey’s Power Sheets.

My new book, The Pocket Occupational Therapist

These are designed for helping you organize your

Everything SCHOOL book is even more in depth

thoughts and goals and can be applied to both a

about school treatment techniques, IEP ideas,

business or personal life. Buy them – you won’t be

modifications in the school setting for multiple types


of special needs. Writing in terms that the reader

~ Lauren Kossack

I am loving Nail It then Scale It: The Entrepreneur’s

Guide to Creating and Managing Breakthrough Innovation, but I have to admit, business again was never in my plans, so I do not have many book under my belt yet.

~ Tammy Bowers

doesn’t need a degree to read is important to me. The information is accessible to everyone who needs it!

~ Cara Koscinski

My book Leah’s Voice

~ Lori DeMonia

Winter 2014 ~ The SpecialMoms magazine   25

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Feature Article

4 Steps To Help You Help Your Family To

Eat Healthier In 2014 by: Cindy Cohen RN The New Year is always filled with new inspiration, new promises and a new start to do better this year. Parents spend time and money giving their kids the best of everything. The best schools, the best sports and the best education they can afford. The one thing that is overlooked is how parents can give their kids the best health. Just like giving your child the best education increases their success in life, giving your kids the best health gives them the best chance at a happy life filled with vitality. Eating a healthy diet is the best health insurance to achieve the best health. Kids are now beginning to develop adult diseases as a result of their poor eating habits signaling to us this has to change; healthy eating habits are no longer an option, they are a priority. Now is a great time to get your priorities back on the “road to better health”. I’ll admit this road is

Step 1. Make health your family’s goal Kids begin to learn by watching you, and then decide accordingly. So you must choose health first. Kids of every age can begin to learn what a healthy diet is right from the first bite of food. As babies and toddlers they learn by you giving them only healthy foods to eat. As they grow older you teach then foods to eat more of and foods to eat less of. As they grow older into school age you teach them about how to make good food choices, such as portion sizes and label reading. As pre-teens they start to learn about menu planning, healthy food shopping and preparation. At every stage of development food is an important part of learning to take care of ourselves in a healthy way. Set a goal now to move your family towards health.

Step 2. Enroll everyone as participants

confusing, filled with detours and setbacks however

It’s important for everyone to be on board. This

with the right guidance, taking one step at a time, it

begins with learning why choosing a healthy lifestyle

is easier than you think.

is important for each person in your family and our

26  The SpecialMoms magazine ~ Winter 2014

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Feature Article knowing eating healthy will improve their performance

Step 4. Set a goal and stick with it until you’ve mastered it

is important. Poor eating habits maybe contributing to

Our family’s first goal was to start the day with eating

missed days of school due to colds and flu. If focus and

a healthy breakfast. For example, we had to decide

learning are a challenge making better food choices

what a healthy breakfast is, then strategies to make

gives you the nutrition to make learning easier.

it happen. As a family we decided the easiest and

community where we live. If your kids are in sports, then

Scientists know diets high in fruits, vegetables, beans and nuts improve learning, athletic performance, reduce weight, lower blood pressure and cholesterol. The Juice Plus Children’s Health Study* has research on over 150,000 children around the world, demonstrating children who eat a whole food supplement, eat Juice Plus+ whole food supplement, eat more fruits, vegetables, drink less sugar drinks miss less school, less doctor visits and experience improved health.

Step 3. Everyone learns the importance of healthy eating Now your family has to learn this too. How you teach your kid and how they learn is age and developmentally specific, however the grocery store is a good place to start, learning about fruits and vegetables, what they are, why they are good for you. When you understand why eating healthy is important, how good it can be for you, and if you do not eat healthy how bad it

most nutritious option was to make smoothies each morning. The kids decided on the smoothie recipes they liked trying different ones until they settled on 2 – 3 variations. If they were late for school the smoothie went into the car with us to save time. After about three weeks we were all consistently drinking smoothies and very happy with our decision. Our next goal was to stay away from the fast food restaurants. To do this we traveled with food in our car for snacks, and had food ready at home for dinner to expedite the time from our arrival home to food in front of the kids. Helping your family eat healthy is not always easy, certainly not without obstacles but it’s well worth it. Once our children started down the road to better health they missed less school due to illness, improved their focus, and grades. They slept better and were happier kids. u Your partner in health,

can be; it’s easier to make the healthy decision. For example, I remember my granny telling me to eat carrots because they help you to see at night. I did not want to be blind so of course I ate those carrots! Didn’t you?

*The Juice Plus+ Children’s Health Study is enrolling now for ages 4 – 18. If you would like to know more about it, contact the local representative Cindy Cohen RN, 800.245.8917 CindyCohenRN@yahoo.com

About the Author: Cindy Cohen is a registered nurse with 35 years of experience from the bedside to CEO of a hospital. Cohen is recognized as an accomplished author, wellness expert, and corporate wellness leader. As a health coach and wellness consultant, Cohen is the guiding force behind the C2 Your Health team in helping others find their way to improved personal and business wellness. C2 Your Health LLC, through the corporate wellness division Health-E 4 Life Worksite Wellness, assisted industry leaders with certification and was awarded the 2009 - 11 Indiana Small Business Wellness Tax Credit. C2 Your Health LLC also promotes the annual Expo for Women bring wellness to the community. Cohen has written a number of books, the latest 2012 Prevention Benefits Healthy Employee Costs Less (Amazon.com), and 2013 What’s on Your Plate a Simple Guide to Healthy Cooking (Amazon.com) Cohen speaks on a local and national level about personal health, corporate wellness, and business leadership. Her expertise helped build an award winning franchise as a Qualified National Marketing Director for the Juice Plus+ Corporation winning the Top 10 in the category for developing new business. Other awards include the 2000 Temple Beth El Woman of the Year, the 2009 nomination for WSBT & Enrichment Strategies “Success Story of the Year”, the 2010 -11 Annual Social Media Summit nomination for the Up and Coming Business Award, and the 2012 Wellness Council of America Faculty Status. You can find Cindy www.fb.com/CindyCohenRN, www.Linkedin.com/in/ CindyCohen, www.CindyCohenRN.com CindyCohenRN@yahoo.com 800-245-8917 vm

Winter 2014 ~ The SpecialMoms magazine   27

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The Pocket Occupational Therapist and Route2Greatness, LLC

You truly get to know every client on a personal level and it’s a very rewarding profession. Knowing that you make such an impact on someone’s everyday functioning is something special.

Cara Koscinski



Charleston, SC

@ pocketot



28  The SpecialMoms magazine ~ Winter 2014

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Interview How old is your business/ organization:

a junior in high school and never looked back. I

I founded Route2Greatness in 2005. There was a

know every client on a personal level and it’s

need for CDs like our Sound-Eaze and School-Eaze for my own children. I couldn’t find exactly what I was looking for, so I created my own. I went to a recording studio and bought my own high quality

have never considered any other career. There’s something unique about OT. a very rewarding profession.

You truly get to Knowing that you

make such an impact on someone’s everyday functioning is something special.

sounds and hired a wonderful music therapist

I am now writing articles about OT and training

to sing. The CDs truly helped my children and I


decided to sell them to help other children who

education companies and partnerships. I LOVE

were also afraid of loud noises such as: fire alarms,

what I do!

thunder, school sounds, and fireworks. Now, they





for children with special needs. Around the same

Tell us about your family (other children, ages, hobbies):

time, I co-founded Aspire Pediatric Therapy. The

I am the homeschooling mother to two sweet

are sold across the US and in several catalogues

company started in a basement office and quickly grew to three offices, school-based therapy and in-home therapy to babies. It was a huge blessing to see it grow so quickly. We concentrated on making parents partners in their child’s treatment and they really appreciated that. It is still a thriving company. My husband had transferred from Pittsburgh to South Carolina for his career and at that point, I sold my share of the company and began work here!

and intelligent boys that definitely keep me on my toes! They are eleven and thirteen. We have two dogs, Peaches and Molly. As a family, we enjoy traveling, fishing, and going to the beach.

Share with us the diagnosis of your child with special needs, how did you find out? When my first son was born, he was generally a

The Pocket Occupational Therapist was founded

fussy baby. He ate an extremely limited diet and

in 2009.

didn’t “coo” and interact much with us.

It’s the name under which I provide

I was

individual OT services, advocacy, consult, and

familiar with the early signs of autism and refused

training. It’s also the name of my book series! My

to accept it for a few months. As milestones with

son actually helped create my logo.

socialization passed, he did not reach them. I knew he needed the addition of ABA, speech,

Tell us a little about yourself:

and occupational therapy.

When he was

I looked at many career options and spent time

program using the LEAP (Learning Experiences

observing various health professionals while I

and Alternate Program for Preschoolers and their

was in high school. After ONE DAY of observing

Parents) model.

an occupational therapist, I know that’s what I

peers to children with autism. His classroom had

wanted to do. In fact, I applied to OT school as

four children with autism spectrum disorders and

three, I was blessed to get him into a pre-school

LEAP has a 2:1 ratio of typical

Winter 2014 ~ The SpecialMoms magazine   29

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Interview (goes into his stomach and jejunum) and is able to eat only two foods-apples and rice. It’s been exhausting trying to travel to all of his specialists, but if I could choose, I would still pick my sweet guy! He’s loving, smart, and enjoys life.

What is the most rewarding thing about being the mother of a special needs child? I love working so hard with the boys and watching them learn skills that most parents take for granted. It’s SO much sweeter when you’ve attended multiple therapy sessions in order to watch them learn to button. One day, they randomly button their shirt and it’s a real miracle! It’s the same way with speech skills. Every new word they learn is priceless. The first time each of them told us “I love you” was such music to our ears. Parents of children with special needs sometimes work 200% to help their child meet developmental milestones that should come naturally! It’s not an eight typically developing children. He was there for two years and thrived! It’s a mis-perception that children with autism are not capable of love and caring.

We watched him blossom into a

verbal and bright child who was able to attend kindergarten in a regular education classroom! He is now a chess expert and has many friends. My younger son was very limited on his feeding, social, fine and gross motor skills. He was also a very “sick” little guy. When he was two, we had to pull all solid foods in order to put him on a diet of medically prescribed formula for a rare disease called Eosinophilic Esophagitis. He was then diagnosed with a brain herniation- Chiari malformation;




Danlos syndrome; autism; and mitochondrial disease. He is now primarily fed via a GJ tube 30  The SpecialMoms magazine ~ Winter 2014

easy job, but it’s a very rewarding one.

Briefly explain to us about your business/charity and why you decided to it? My grandfather was an entrepreneur. It’s in my blood!

I love seeing what parents need and

creating it. I cannot “shut off my brain!” It moves so quickly and I am constantly writing down new ideas for products and articles to write. I really enjoyed writing my first book, The Pocket Occupational Therapist. It took about four years to put it all together. I had always kept a list of questions that caregivers asked me and found that most had similar concerns. I knew that the information had to be put into one place for them to read and be able to review when they

Be sure to follow us

Interview needed to. The “Pocket” concept was important to me because families could always have their therapist handy if they bought the book! I sincerely wish that I had the book when I was starting the journey of raising children with special needs.

Tell us what a typical day looks like in your household? It’s crazy! We begin our day with a prayer and then quickly move to our home school classroom area. There’s got to be structure in order for my

Also, having the information written in terms

children (and me) to stay on task. We complete

that aren’t technical was important to me. Not

all of our lessons and then it’s break time for the

everyone has a degree in therapy and the

boys. This is when I begin my work day. There is

information should be accessible to EVERYBODY.

much to do for me and I must be efficient with my time. In between all of this, I’ve got to find time

What advice can you offer to other mothers who are looking to start a business or charity?

to cook, clean, and run my boys to their activities!

I actually wrote an article about this last year!

There’s music, dancing, fun family activities tossed

It’s extremely important to be a “master of your

in too.

trade” and have a special interest that you feel will fill a gap. If you’re not passionate about what you are doing, it will reflect poorly in your business. Do something you love because owing your own business takes up a great deal of time. There have been many 60 plus hour work weeks and you’re never really “off.” Make it a labor of love and you can’t go wrong!

What was the biggest struggle you encountered when starting your business/charity? I feel that the most difficult part of beginning any business is the funding for equipment and space. Also, if you’re not a “business-oriented person” than you need to hire someone who is. My problem has always been that I give away my time, products, and ideas because I think with my heart. While that’s a wonderful thing, it certainly does not pay the rent. It’s also critical to hire an accountant and have a realistic business plan.

There isn’t much time for sleep right now. We do have fun at whatever we do. My husband and I like to keep the atmosphere uplifting and fun.

How do you balance work and family life? I truly believe that living with children who have special needs gives me a unique empathy for what my clients go through. When I give my clients a home activity, I have personally tried it and know it works. It’s not at all easy raising two kids with special needs, but I feel very blessed to have the chance to use my professional expertise to help my own boys. I homeschooled both boys for years and now I have my sons in my “classroom.” I absolutely love seeing them grasp a concept that’s difficult. Being their mom and teacher is very neat. My husband is a blessing to us as he’s always willing to help out after work with school and tries to give me some free time!

Do you have any awards or recognitions you want to share? I was the recipient of the Duquesne University’s

Winter 2014 ~ The SpecialMoms magazine   31

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Interview Innovative Practice Entrepreneur Award and

watch the children progress and then succeed.

have served as an adjunct clinical instructor for

The parents enjoy it, I enjoy it, and most of all, the

the Duquesne University Occupational Therapy

children feel so proud of all they’ve done. There’s

program. I love extra training and have extensive

absolutely nothing like watching a child smile

training in sensory processing disorder, pediatric

and gain self-esteem and feel accomplished!

feeding techniques, core muscle considerations,

caregiver stressors and support, visual perception,

Is there a charity or organization you volunteer for and/or support and why?

and business/private practice topics. In 2012, my

I support and will donate for many organizations

autism, gastro-intestinal disorders, upper extremity treatment, handwriting, Therapeutic Listening,

family was featured on the ANDERSON Cooper

for children with autism and sensory processing

show discussing eosinophilic disorders.

disorder. important.

I enjoy writing articles for many publications and

Donating both money and time is I have always held free classes

for parents whose children have been newly

speaking at conferences. This year, I’m going to

diagnosed with a special need or want to learn

be traveling across the US to talk about OT!

more about OT and home activities to help their child.

I’m so happy to be on the advisory board for

What do you see in the future for your business or charity?

Autism Asperger’s Digest Magazine. Also, I will be a regular columnist for them in 2015. Also, I love my newest appointment as one of the Asperkids

I hope that we continue to provide quality training

Advisors of Awesomeness!

for newly graduated OTs, parents, and teachers.

What motivates you?

Many more books and publications are in the

It’s the best feeling to see one of my clients come

am almost finished creating more webinars and

in with several areas of “weakness” and I know

downloads for our website and have plans to

just what to do to help them. It’s awesome as you

open another outpatient center.

works for The Pocket Occupational Therapist! I


Helping children to have a positive experience with sounds ​CDs created by Cara Koscinski, Master of Occupational Therapy and Kimberly Josephs, Music Therapist School-Eaze CD contains school sounds along with rhythms to help children who are afraid of common sounds heard while in school. Some of the sounds included are: school bell, fire drill, gym class, school bus sounds. Also included are field trip sounds to various locations! Click here to buy tracks separately OR purchase the entire CD!

Sound-Eaze is a CD that contains sounds that children may be afraid of such as, fire alarms, sirens, thunder, and fireworks. The sounds are professionally recorded along with vocals and rhythms to give your child a positive experience when listening to sounds! Click here to buy tracks separately OR purchase the entire CD!

A Pocket Guide to Raising a Child with Special Needs

www.pocketot.com 32  The SpecialMoms magazine ~ Winter 2014

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Natural livin’ Mama, Homesteader, Blogger

How old is your business/ organization:

ever goes down. I’ve worked as a birth worker

I originally blogged as Mondorfment which stood

that and dabbled in homeopathy too. I’m a DIYer

for Montessori, Waldorf and Attachment Parenting but I realized I needed to share more than that and rebranded as Honey’s Life. Now I share more about our natural life, our organic mini farm as well as homeschooling using pedagogues that support natural, special needs parenting.

(doula/midwife) for 20+/- years. I’ve been using herbs and oils and tinctures for a bit longer than from our home, farm & garden, our animals and kids. I’m what my husband calls brutally honest so don’t ask if you don’t want to know and I’ve never been good at keeping quiet when I see injustice or sheer stupidity.

Tell us a little about yourself:

Tell us about your family (other children, ages, hobbies):

I’m a momma to 3 kids, married to my lover, Ben,

Tyler, 14, irritant supreme to Sunshine, creator,

for 15 years, I’m as crunchy as they come meaning

strong yet so easy to be hurt, and born to feel the

I make my own cleaning products for our bodies,

earth beneath his nails.

hair, and our home. I hate plastic. I don’t test the

Rhea (g), 13, little mama, artist, kissed by angels

waters and simply jump in the deep end. I’m a

and born with a soul bigger than her frame.

bit anal and organize everything by rainbow. I

Sunshine (g), 6, aggravater supreme to Tyler, fairy

also have a spare label maker just in case mine

dancer, old soul and light bringer.

Honey Rowland



@ HoneysLife



Winter 2014 ~ The SpecialMoms magazine   33

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Interview Share with us the diagnosis of your child with special needs, how did you find out?

What is the most rewarding thing about being the mother of a special needs child?


Honestly, I don’t see anything more rewarding






Processing or Sensory Integration Disorder) after years (he was 9 years old) of seeking the answers. I started to think I was a bad mom, so I went to see a therapist. SHE, not all the doctors we’d been to, recognized what was going on and referred

from my middle daughter. They each have amazing talents and skills and an ability to see beyond the everyday. I think just being a mother to some cool kids is pretty awesome.

me onto an OT. It was a wonderful moment... finally having a name or validation of what we were dealing with. Proof that he wasn’t a bad kid and I wasn’t a bad mom. I suspect he has Aspergers too, but another title isn’t needed and

Briefly explain to us about your business/charity and why you decided to it?

we homeschool so we don’t deal with IEP’s or

I blog about homeschooling, family life and green

anything like that.

living with a passion for crunchy mama life and natural, special needs parenting. I also handle

Sunshine was 6 months when Bub was diagnosed.

social media, ads, sponsorships and a wee bit

We never had her diagnosed as we recognized

of marketing for a few other bloggers. I blog

in her the same things Tyler had done so we just

because it’s a platform to share and when you’re

started thinking outside of the box with her too.

the only one, you seek out others..plus it was a

She has an easier go at everything than Tyler as

dare by another blogger.

he was our guinea pig as we tried to figure it all out. She doesn’t struggle with her writing the way he does and is more excited to learn academic works than he is. I also know that using some of the Montessori works, especially Practical Life works have helped her tremendously.

What advice can you offer to other mothers who are looking to start a business or charity? Just do it.

What is the most rewarding thing about being the

You have nothing to loose and

everything to gain.

mother of a special needs child? Honestly, I don’t see anything more rewarding from my middle daughter. They each have amazing talents and skills and an ability to see beyond the everyday. I think just being a mother to some cool kids is pretty awesome. 34  The SpecialMoms magazine ~ Winter 2014

What was the biggest struggle you encountered when starting your business/charity? Creating a balance. I still struggle with that.

Be sure to follow us

Interview Tell us what a typical day looks like in your household? First off...typical is a foreign word here. ;) During the winter we wake up, put some more wood on the woodstove, add pellets to the pellet stove, milk and feed the goats, the dogs and the

them in bed I’ll read a book about birth and homesteading to blogs and clients while having a wee chuckle over the hypocrisy. ;)

How do you balance work and family life? HAHAHAHAHAHAHAHAHA!

chickens and let them out of the coop (we’ve coyotes so they free range during the day only.) We check for eggs, add some straw to their deep litter, check and make sure everyone’s eating and acting fine. By 9:30 everyone starts learning. We’re child led

Do you have any awards or recognitions you want to share? I’ve only thought about running off to Mexico a half dozen times this week! Go me! ;)

learners here so that means they’re all doing their own projects we’ve discussed, so they’re meeting their personal educational goals and needs. I’ll

What motivates you?

head to my desk and get to work myself.

Caffeinated tea, especially chai.

We have lunch and then they do some chores

Is there a charity or organization you volunteer for and/or support and why?

around the house. Then they will go back to finish their projects and once they’re all done they’ll start playing around. I’ll keep working as I run back and forth with Sunshine a lot. If I’ve a call to

I do a lot of work with women.

make I load up Netflix to a

rape counselor, a victim/witness advocate, a

documentary that’s in line with their history or

birth worker, an activist for all things kid and

science based projects. Around 3ish I’ll toss dinner

woman related and the reason I do it is because

in the pressure cooker, grab a kid to scrub root

every woman is a chance to improve the next

veggies, chunk ‘em up and chuck ‘em in the pot.

generation. We teach and support a woman

Soon the smell of dinner will be waftin’ through the air and Ben should be home soon. The bread will be baking in the oven, my tea kettle will be moved off the fire and the rich smell of chai will be replaced with the smell of fresh bread. As dinner’s finishing up it’ll be time to feed the animals again.

I’ve been a

and she’ll teach and support her children, family and community.

What do you see in the future for your business or charity? Who knows?

Right now...I’m enjoying the

moment, my kids and my family. I’m focused We spend family time together watching a movie

on doing right and good now...cause later may

and then they get ready for bed. Once I hear

never come if I don’t start now. u

Winter 2014 ~ The SpecialMoms magazine   35

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Book Reviews Sticky Icky Booger Bugs – written by Sherry Frith A tale of a boy’s battle with cystic fibrosis as he attempts to avoid the hospital. Kory is just like any other kids. He loves playing soccer, and exploring the neighborhood with his best friends. With every puff, cough and sneeze Kory keeps the sticky icky booger bugs away, so he can have fun every day! This thick mucus can cause Kory lung infections and obstructs the pancreas. Sherry decided to write this book after her sons, Kory and Kevin, were diagnosed with cystic fibrosis. She wanted to help bring awareness and educate parents and children about the condition through words and illustrations and help build compassion for those diagnosed with it. This story lets children know that they are loved, no matter what their medical condition. This is a wonderful book that really helps explain especially through the illustration all that Kory has to go through everyday just to stay healthy. And despite all the treatments and “pep pills” he has to take throughout the day, he is just like every other boy his own age - curious and energetic and loves to play. It also shows a glimpse at how the school works with these families, by showing how the nurse helps to administer Kory’s medicine and how his teachers and peers don’t treat him any differently because he has to have juice throughout the day. Sherry is also the founder of KCHH, a non-profit organization and resides in Bakersfield, CA with her family. You can purchase this book on Amazon here.

Nutley the Nut-Free Squirrel written by Stephanie Sorkin Nutley the Nut-Free Squirrel is about a cute little squirrel who finds out he is allergic nuts. He goes to see his allergist, who is a bear, and the allergist tells him he needs to avoid to peanuts and tree nuts, which he thought was funny since he is a squirrel and lives in a tree. So Nutley calls a meeting to tell all of his animal friends about his nut allergy. He was worried that they wouldn’t understand and they would treat him differently. But then his friends start telling him about their allergies too – “a dog allergic to bones, a pelican allergic to fish”. This is a wonderful story written by Stephanie, whose 3 daughters Kyra (10), Lea (8) and Mallory (6) all have some sort of a food allergy, her 6 year old has multiple ones. She realized something was wrong after Mallory had a piece of her 1st birthday cake and broke out into hives. After being tested they discovered she has a moderate to severe egg allergy, as well as canola oil. Stephanie found that out after her daughter got very sick after she was playing with homemade play dough in her preschool. Stephanie says that “advocacy is so important to help spread awareness about this life threatening condition”. Food allergies are no laughing matter and not to be taken lightly, but this book is a great lighthearted story, that is cute and silly, but still explains food allergies to children very well! The story also talks about how everyone might be different in their own way, and that it’s okay because your friends will like you just the way you are. The proceeds from this book which won “Mom’s Choice Awards Honoring Excellence” in September 2013 will go to FARE for allergy research and education. You can find this book at Amazon here. 36  The SpecialMoms magazine ~ Winter 2014

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Caregiver Cards Caregiver Cards provide essential visual picture cues that improve communication, promote independence and reduce anxiety for adults with memory, cognitive, or speech challenges due to dementia, Alzheimer’s disease, autism, deaf or hard of hearing, and other disabilities. An essential aid for helping adults understand and engage in activities at home or in residential care or memory care settings.

How old is your business/ organization:

Growing up, it was easy to see how family was

One Year

maternal grandparents, who we affectionately

Tell us about your family (other children, ages, hobbies): I have been blessed to be part of a family that understands the importance of family and how special it is (the responsibilities and rewards involved). I’ve been married to my husband, Mark,

important in our lives. I probably took it for granted. Family traditions revolved around my called Granga and Papaw. Every Sunday, after church, my family would spend the whole day at Granga and Papaw’s house, and almost every Friday the grandkids would have a sleepover with popcorn and Dukes of Hazard. Holidays were spent together as well. We took care of each other.

for 14 years. He is also a co-partner in our business.

As I became an adult, I was able to return the

I was blessed to be a Mom in 2005 and 2010, to

favor and care for my grandparents who had

my wonderful daughters, Katelyn and Gabrielle. I

Alzheimer’s disease and dementia, and, now,

am also an aunt to the best nephews, Isaac and

help care for my Father, who has brain cancer,


and my oldest daughter who has autism.

Barbara Worthington Winston, Oregon www.caregivercards.biz

facebook.com/caregivercards @ CaregiverCards caregivercards

Winter 2014 ~ The SpecialMoms magazine   37

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Interview Share with us the diagnosis of your child with special needs, how did you find out? Coming to the realization that Katey had autism was a journey! During the time that she was a toddler, we were also full-time, live-in caregivers

I owe so much of my personal growth to my daughter. I love both of my daughter’s dearly!

Briefly explain to us about your business/charity and why you decided to it?

to my grandmother, Granga, who had dementia.

The idea of creating illustrative picture cue

Caring for my Granga took up so much of my

cards for the use of persons with Alzheimer’s and

time and focus, that I missed clues that I probably

dementia came about from my experiences while

should have seen. Katey was our first born, so

caring for my grandparents and understanding

we had no “guideline”, if you would, to measure

how Picture Exchange Communication System


(PECS) worked for my daughter.


against, anyways.

After Granga passed away and I had more time with Katey, I did notice that her “Kateyisms”, and

I don’t know if many of you have been around

delays in speech needed to be addressed. We

or had loved one’s with dementia, but I can tell

brought it up to the pediatrician at her 2 year

you, the similarities with verbal processing, anxiety,

old appointment, but the pediatrician dismissed

frustrations, behaviors, and the strength in visual

it. At three years, the pediatrician listened, and

and non-verbal communication are amazing.

noted that she had autism. Katey attended early intervention at the age of 3 and attends special education and transitions into mainstream classes. She’s now in the 3rd Grade and has blossomed so well, and works so hard with her speech and social cues. We know there is still a journey to be had, but are so proud of her accomplishments.

What is the most rewarding thing about being the mother of a special needs child? I don’t know if Katey will ever truly understand how important she is, and what her life has done, already to impact the world! I don’t say this, as if she can’t understand, because I know she does, I say this because mere words on paper, or spoken,

When verbal communication failed or became difficult I saw the strength in visual communication. Why? Because visual is easier for the brain to process; it’s less confusing. In other words, it’s important to “reduce the thinking to get the message across”. This is particularly important for communicating with people with dementia as their brain is damaged and grossly impaired as the disease progresses. I want the world to understand that we need to NOT focus on what is changed or lost, let’s work with what we have; let’s work in their world.

What advice can you offer to other mothers who are looking to start a business or charity?

cannot convey the true admiration, love, respect

There are two points of advice that I value as a

and awe that I owe my daughter. She has taught


me so much patience, kindness, trust, faith, and

1. Ask for help! Seriously! I cannot stress this

love, that I didn’t know one person could possess.

enough. You’d be surprised at how many people

38  The SpecialMoms magazine ~ Winter 2014

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want to see you succeed and will help. Seek out

was, know what horse raise you are in and be

advice from volunteer or support organizations

comfortable with that. For now, I am comfortable

such as S.C.O.R.E. or your local Small Business

in my horse race; it allows me to work my business

Development Centers. Don’t be afraid. There are

and still spend time with my sweet baby girl, while

no dumb questions. No one will steal your idea.

she is still at home.

You will learn and grow a lot. I know, as Mom’s,

What was the biggest struggle you encountered when starting your business/charity?

we tend to think we have to and can do it all (Remember, I’m a mad hatter…I know this!), but we really do need to be comfortable with asking and receiving help. 2. Know what horse race you are in! A fellow entrepreneur shared this with me, and I love it. It grounds me and puts me back in touch with reality. I have a tendency to be over anxious, an over achiever, and impatient. Not a good trio. LOL. This friend, after listening to some of my business questions, flat out asked me, “Barb, hat horse race are you in?” I replied, “Huh?!” She went on to ask if I was running in the county fair, state race, or the Kentucky Derby, and if I was using county, state or Kentucky race money or time? She asked “Can you really run in the Kentucky Derby if you’ve only trained for the county fair, with a county fair budget and time?” She said win a few races; get some experience and over time you can compete in the Kentucky Derby. The point

I literally started creating the illustrations for Caregiver Cards, at night, after the girls went to bed. How many of you have and still do that?! So, from the beginning to now, my biggest struggle has been time, the management of it, and the acceptance of what gets done during the time I have. I am a person that if I have 20 items to do in a day and I accomplish 17, I will dwell on the 3 I couldn’t do. My husband, can have an agenda of 3, accomplish 2 and call it a great day. God Bless him! I need to be more comfortable and proud of the goals (whether personal, family or business) I accomplish with the time I have.

Tell us what a typical day looks like in your household? I know the answer to this one. It’s a TRICK QUESTION! Winter 2014 ~ The SpecialMoms magazine   39

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Interview There is no “typical day”. It doesn’t exist. I try, my

launch stage event in November 2013, and the

best, to accommodate a schedule, but life has a

Roseburg Start Up Entrepreneur Weekend event.

way of derailing that. It really is wonderful, when you step back and look at that point. It’s letting go, not trying to squeeze and control the “life out of life”. It reminds me of the movie Parenthood, when the Grandma, with dementia, says she likes the roller coaster.

[Gil has been complaining

about his complicated life; Grandma wanders into the room] Grandma: You know, when I was nineteen, Grandpa took me on a roller coaster. Gil: Oh? Grandma: Up, down, up, down. Oh, what a ride! Gil: What a great story. Grandma: I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn’t like it. They went on the merry-goround. That just goes around. Nothing. I like the roller coaster. You get more out of it.

How do you balance work and family life? I always give the weekends to my family, and

What motivates you? Following God’s plan. Like I said, previously, I struggle with perfectionism, patience and control. I could not understand why “bad things happen to good people” (Like in the case of my grandparents living with Alzheimer’s and my daughter with autism.) This is not to say that having these conditions makes anyone’s life bad; it’s simply stating that life is more difficult, a challenge, a roller coaster. And out of my roller coaster of a life, I have been fortunate to have the opportunity to not only make a product that can help others, but to be an advocate as well. I would never be the person I am today without these struggles. God has used a less than easy life to show me that good things come when you let go and trust Him. For that reason, the Lord motivates me in many ways.

Is there a charity or organization you volunteer for and/or support and why?

especially Sundays. I learned, from my Granga

I volunteer for 3 charities/organizations at the

and Papaw, the importance of slowing down and


spending the weekend with family. There is always

1. The Alzheimer’s Association

work to be done. Sure enough, as I write this, there

2. Conference on Extraordinary Living, Roseburg

will be more work for me ready and waiting the

Oregon (chairperson)

following day. But, my family…I want my girls, my

3. Emeritus at Manor House (I get to go on field

husband, to still be wanting me to be around, to

trips with the residents of a local memory

be excited and happy when I am in the room

care community. A joy!)

with them.

Do you have any awards or recognitions you want to share?

What do you see in the future for your business or charity? I would love to see the business expand and

The concept of Caregiver Cards has won two

grow to meet the ever demanding roles placed

awards: the Roseburg Angel Investor Network’s

on the Alzheimer’s community. My vision for the

40  The SpecialMoms magazine ~ Winter 2014

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Interview business is to help caregivers, family members,

speaking and education about Alzheimer’s,

health care professionals and persons living with

caregiving, and communication. I also envision

dementia to overcome communication barriers

Caregiver Cards becoming the trusted source

allowing for the highest quality of life possible for

to go, when, as a caregiver, you need a tool,

all involved. Caregiver Cards can grow beyond

an aide, a device, advice or just a kind word to



help on your caregiving journey. We want to be

(including mobile apps and foreign language)

there, to help, to support, to show that you are

of communication aides. I see growth in public

not alone. u


tool, into


Apps We Love! Write My Name Endorsed by parents & teachers, a fun way for children to practice writing letters, words, names and phrases. - $3.99 on iTunes

Endless Alphabet Set the stage for reading success with this interactive educational app. Kids will be able to learn their ABC’s and build words by putting them in the correct spot, with the help of little monsters. - FREE

Creative Media Design www.designmagic.ca ingrid@designmagic.ca

Winter 2014 ~ The SpecialMoms magazine   41

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Feature Article

Sure You Can Have That!

Allergy-Free Dining at Disney World by: Gina Vercesi As any parent of a child with food allergies can

Not good enough. Definitely not good enough

tell you, dining out can be fraught with anxieties—

for her son who, if he even touches dairy, breaks

Will there be anything she can eat? How can I

out into red, itchy hives.

trust that the knife didn’t come into contact with dairy before slicing his sandwich? I know they said there are no nuts in this, but how can I be sure without seeing an ingredient list? Dining while traveling is especially challenging since the majority of eating that happens on

This conversation would have been entirely different in Disney World where the server, upon learning about her child’s allergy, would have said, “The chef will come out to your table to talk with you in just a moment.” Kind of unheard of, right? Not at Disney World.

vacation is at restaurants. Fortunately, there is one family-friendly destination that without fail safely,

The same holds true at the many Quick Service

and professionally, makes accommodations for

restaurants on Disney property, where there is a

food allergies of all kinds—the Walt Disney World

book beneath the counter that lists the ingredients


for every item on the menu and will be produced for you to look through upon request.

What’s in that Chicken? I don’t have children with food allergies, but I have plenty of friends and family members who do.

I have seen firsthand the difficulties they

face in restaurants and the frequent off-hand manner in which the staff treats their inquiries into ingredients or special requests. “Do you know if the chicken was cooked in any butter?” my friend asked a server when we were out for dinner with the kids recently. “Uh, I’m not sure. Probably not,” was the reply. 42  The SpecialMoms magazine ~ Winter 2014

At Disney World, the question about whether or not the chicken was sautéed in butter will be answered to your satisfaction, with courtesy and professionalism.

Mom, Can we Get a Snack? Disney is taking their support one step further with the introduction of a new food kiosk featuring allergy-free snack items. In Animal Kingdom Park, The Gardens offers vegan, gluten-free, organic snacks, attending to the 8 most common food

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Feature Article allergens and the Cast Members on hand are available to answer any questions you might have.

The Disney Difference

Additionally, the Cast Members working at all

I talk about it time and time again. Disney

of the snack kiosks throughout Disney World will

does things right. Whether it’s the cleanliness

allow parents to take a look at items in order to

of their resorts or the support offered at

check labels before purchasing. And with the

their Run Disney events or the warmth and

new Mickey Check program, parents are able

friendliness of their Cast Members, travel to a

to find many more healthy items in resort hotels’

Disney destination always promises top-notch

grab and go areas, like fruit or hummus and

service. And the company lives up to the high

veggies. Kids’ Quick Service meals are served

standards it sets for itself when meeting the

with milk or water and grapes and carrots instead

needs of people with food allergies as well.

of soda and fries, another welcome introduction.

Leave it to the Mouse.


About the Author: Gina Vercesi is a New York based travel writer and Disney Travel Planner with an adventurous spirit and an unyielding sense of wanderlust. She writes about everything Disney at In the Mouse House and on about unplugged family travel at Kids Unplugged.

Jacob’s Journal – My Journey Home When I first learned of my son’s diagnosis when I was four months pregnant, I knew that I wanted to document everything. Being a first-time mom and knowing that there was going to be a lot of medical information told to us, I decided I wanted to keep a journal. So I kept a journal, documenting all the different procedures, medicines and day-by-day events that lead up to my son’s first surgery at 16 days old. After we got home and a whole new routine of therapies and doctor visits took place I still kept my journal, well as best I could. So I decided I wanted to write a book to share our story with other parents who were given the news that their child will have a disability. This story is unique in the way I wrote it, since I chose to write it as if my son was telling the story. This story will take you on an incredible faith-filled journey as a family enters the world of having a child with special needs.


95 on Amazon for $16.

The book is available on Amazon for $16.95 You may purchase this book through Amazon by clicking My Book

Winter 2014 ~ The SpecialMoms magazine   43

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Our Life as an Epi-Family

I started the blog as an outlet for myself. Writing about our daily struggles and the challenges that we face as parents of food allergic children was a good way for me to unwind and “get it all out.”

Lauren Kossack


Indianapolis, Indiana

@ epifamily



44  The SpecialMoms magazine ~ Winter 2014

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Interview Tell us about your family (other children, ages, hobbies): My family consists of my incredible husband and

Briefly explain to us about your business/charity and why you decided to it?

two adorable boys, aka “my little men.” You can

I started the blog {http://www.epifamily.com}

read about each of them, here.

as an outlet for myself. Writing about our daily

Share with us the diagnosis of your child with special needs, how did you find out? My oldest son, Christian, was diagnosed with an egg allergy following his first reaction that occurred when he was 18 months old.


youngest son, Atticus, has a dairy, egg, peanut, all tree nuts (including coconut) and sesame allergy. He’s anaphylactic to all and his original diagnosis came at one year of age. However, his list of allergies has changed a bit over the years as we’ve had new reactions, thus adding to our list of allergens and he recently outgrew his soy allergy. You can read about my little men’s food allergy stories, here.

What is the most rewarding thing about being the mother of a special needs child?

struggles and the challenges that we face as parents of food allergic children was a good way for me to unwind and “get it all out.” It was my own form of self-therapy {or perhaps we should call it selfapy}!

It was also a way to keep our

family up-to-date with all of our happenings and updates on the boys. Secondly, following the anaphylactic reactions and food allergy diagnosis for both of my boys I felt helpless, scared, and alone. There wasn’t anyone to hold my hand and teach me how to read labels and grocery shop.

When you

are watching your child turn blue and gasp for air all because of something that they ate, you become fearful to feed them anything.


learning everything on my own I knew that God was calling me to help other food allergy families. I didn’t want anyone to ever go through what I went through. So if I could help just one person by sharing all of the knowledge that I came to

Being a special needs mom has many rewards

through months of research and trials and errors

but the greatest reward has been the change

then I would be grateful. No one should have to

in my own life. I see everything differently now.

walk this path alone. I’m here to virtually hold the

Before my boys were born I wouldn’t have seen

hands of other moms and dads as they begin this

or considered whether or not others had special

challenging walk to keep their kids safe and alive.

needs that could possibly prevent them from

Hopefully we can have some fun along the way!

participating in things most of us take for granted:

What advice can you offer to other mothers who are looking to start a business or charity?

birthday parties, holiday parties, etc. Now, it’s the first thing that I think about. I do whatever I can to make sure other children with special needs and challenges have opportunities to live life to

If you want to start a business, charity or blog, I’d

the fullest.

say – Go For It! I love the quote by Karen Lamb, “A year from now you may wish you had started Winter 2014 ~ The SpecialMoms magazine   45

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Interview today.” It’s so true and one that I can relate to

get my oldest to preschool. I wait around until the

many aspects of my life. So what’s holding you

snack has arrived so I can read the labels to inform

back? Come up with a game plan and get the

the teacher and my son about whether or not he

ball rolling. If you need help coming up with and

can have the snack. He has back-up snacks at

organizing your goals, I’d recommend purchasing

school for days when an item isn’t safe for him to

Lara Casey’s Power Sheets. They are incredible

eat. I generally return home with my youngest

and I wouldn’t be able to do what I do without

and we spend the morning playing games and


doing other fun activities. He loves the one-onone time with me while his brother is at school and I know that in a flash these precious moments will be gone as he heads off to preschool next year. We pick up my oldest and return home for “family lunch” as my little men call it. Then both boys take afternoon naps, allowing me to get things done around the house or catch up on my writing. Once they are up we have a little time to play before I begin making dinner. My little men love helping me in the kitchen so making dinner is usually a fun time as they help me measure out ingredients, set the table and anxiously await their father’s return home from work. We have a “family dinner” followed by our usual bedtime routine. Then I snuggle down on the couch for

What was the biggest struggle you encountered when starting your business/charity? For me it was thinking outside the box. Once my blog began gaining momentum and recognition from other food allergy families and companies I was still so new to the blogging world that I didn’t know what I should do next or where to turn to learn more. It’s been a process and one that I’m still learning about each and every day.

some one-on-one time with my husband.

How do you balance work and family life? This is one of the biggest challenges of being a stay-at-home-working-mom. My little men often think that simply because I’m home, I’m 100% at their disposal. I’m constantly reminding them that’s not always the case. Organization is the key to finding a good balance. I work best when I keep myself on a tight schedule. I work on my new blog posts and other writing engagements

Tell us what a typical day looks like in your household?

during naptime and after my little men go to

Most mornings begin early as I work to get

this isn’t perfect as things come up all hours of

everyone dressed, fed and out the door so I can

the day, making some days difficult to stay on

46  The SpecialMoms magazine ~ Winter 2014

bed at night. I take an hour each morning to respond to comments and emails.

Of course

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Interview my preferred schedule. As long as I continue to remember that my family and my little men are my top priority and what matters most, it’s easy for me to put other things aside during the day.

Do you have any awards or recognitions you want to share? Not at this time.

What motivates you? I am the most motivated by my little men. Despite their food allergies I want them to be able to eat foods that I ate as a child and participate in birthdays, holiday parties and other social gatherings that are food focused without feeling left out or that their lives are in danger. I am constantly trying out new recipes and reworking them to meet the needs of my little men. They continue to motivate me and inspire me to be a better mom with each surpassing day. But it’s

Is there a charity or organization you volunteer for and/or support and why? We have a food allergy support group in Indianapolis that meets monthly.

I am the

coordinator for the group and I love meeting new food allergy families and helping them to accept their diagnosis with grace and courage. I also support FARE (Food Allergy Research & Education) and our local FARE Walk. The FARE Walk takes place in August and it’s a time to raise money and awareness for food allergies in our community. There are new studies being done each and every year. We have high hopes that a cure will be found and that one day food allergies will be a thing of the past.

What do you see in the future for your business or charity?

not just my little men that motivate me. I am also

Honestly, I’m not really sure. I want to continue to

motivated by the thousands of other food allergy

be a source of encouragement and comfort for

families who are on this journey, too. I receive

families struggling with food allergies. I continue

emails daily from families who are struggling and I

to pray for God’s guidance and direction as I

feel blessed that God has put me in a place where

sit down and plan out my posts and where I’m

I can help them. I don’t ever want someone to

headed. I have some big ideas but we’ll see if

walk through a new life-threatening food allergy

it’s what God wants for my family, the blog and

diagnosis alone. It can be frightening.

myself. Only time will tell. Stay tuned...


YEA! Melanie Potock’s teaching a feeding seminar near you! See MyMunchBug.com for details!

Winter 2014 ~ The SpecialMoms magazine   47

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5 boys + 1 girl = 6 Photography I love spending time with families and getting to know them.

Katie Driscoll


Palos Park, IL

@ 5boysand1girl6



48  The SpecialMoms magazine ~ Winter 2014

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Interview Tell us the names of your children: Liam, Patrick, Ryan, Sean, Colin, Grace

and my husband more then anything. When I was given the gift of my daughter Grace, I chose to educate myself on the best possible life I could

Share with us the diagnosis of your child with special needs, how did you find out?

give her. She ended up educating me on not

Grace has Down Syndrome, and Ryan and Colin

problem for her. Because of Grace, I was able to

have Auditory and Sensory issues.

change the diet in our home to fresh and organic

only herself but her brothers. I was not aware of the issues that her brothers had until I became more aware of issues that might have been a

products, as well as remove the processed food. I

What is the most rewarding thing about being the mother of a special needs child? The ability to see the world through their eyes

Why did you decide to start a business? I love families and children.

What is the inspiration for your business? The inspiration comes from my children. I love networking with others and spending time getting to know them on a personal level. Photography gives me that and so much more.

What advice can you offer to other mothers of a child with a disability that is looking to start a business?

became aware of the effects of Dairy and Gluten on children with Down Syndrome and realized that they are not the only ones with these sensitivity problem. Since discovering this, 3 of my children practice a Gluten free/ Dairy free diet. I realized how important it was to pay attention to symptoms, instead of treating them, and dig deep to find out what was causing them. I am forever grateful to my daughter for saving our family from a lot bigger problems I fear would have come without the interventions we made at the time of her diagnosis. I like all Mothers, struggle to do the best for all my children and through them I have made amazing friends and our world is so much brighter. Every day is not perfect and I still worry, but life marches on and I feel blessed to march right next to other amazing Moms and Dads.

What motivates you?

Is there a charity or organization you volunteer for and/or support and why?

I motivate myself every day to do something for

Changing the Face of Beauty, is a campaign

someone else. I don’t always achieve it every

that was founded by me and a dear friend Steve

day but I sure try.

English. Our mission is “to integrate individuals

Go for it. Don’t let fear hold you back!

Your story: I am first and foremost a mom. I love my children

with disabilities into general advertising. It is our goal that all people will be represented all the time. It is just right.” u Winter 2014 ~ The SpecialMoms magazine   49

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Author of Leah’s Voice

Honors and Awards

How old is your business/ organization: Published Oct 6, 2012

Tell us about yourself:

and marrying my husband Matthew, I worked in marketing and lived in Cuyahoga Falls, Ohio. While in college, I worked in a supportive living home for special needs adults as a habilitation assistant.

It was such a rewarding job and in

I grew up in a western suburb of Cleveland, OH.

some ways prepared me for parenting my own

After graduating from Cleveland State University

child with special needs.

Lori DeMonia Philadelphia, PA www.leahsvoicethebook.com

50  The SpecialMoms magazine ~ Winter 2014



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Interview Tell us about your family (other children, ages, hobbies):

Tell us what a typical day looks like in your household?

I have 2 daughters, Leah 12, and Sarah 9. They

A typical day is when our daughters get on the

just finished their first gymnastics class together,

bus together and go to school, and my husband

and last year participated in Girls On the Run, an

and I go to work. However, when you have a child

after school track program.

with autism, sometimes there is no such thing as a “typical” day. A meltdown here or there just

Share with us the diagnosis of your child with special needs, how did you find out?

comes with the territory!

In 2003 my daughter Leah was diagnosed with

I just try to get through a day at a time. My

autism spectrum disorder. The first changes we

husband is very supportive and that helps me

noticed were the lack of response to her name


being said, and making eye contact.

Do you have any awards or recognitions you want to share?

What is the most rewarding thing about being the mother of a special needs child?

How do you balance work and family life?

My children’s book has won a mom’s choice award for the developing social skills category, and a New York and London book festival award.

The most rewarding thing is celebrating our child’s accomplishments, no matter how small they

What motivates you?

may seem to others. I remember when Leah first

Speaking out for the rights of others motivates me.

started answering our “yes” or “no” questions, I was so proud. Every small step forward is rewarding.

Briefly explain to us about your business/charity and why you decided to it? I decided to write the book because I saw a need for more children’s literature that included a female character with autism.

What was the biggest struggle you encountered when starting your business/charity?

Is there a charity or organization you volunteer for and/or support and why? I support The Pennsylvania Education for All Coalition





placement of special needs children.

What do you see in the future for your business or charity? I have written a second children’s book which I hope to publish.

I also would like to do

speaking engagements at schools to help bring

Finding the time and energy to do most of the

awareness to autism, and more importantly

marketing and promotion myself.

teach children to accept and include their peers with special needs.


Winter 2014 ~ The SpecialMoms magazine   51

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LionHeart Innovations The Pocket Physician

Strength ❤❤ Hope

❤ Courage

Share with us the diagnosis of your child with special needs, how did you find out? Three years ago our son Landen was born with a severe heart condition. We were shocked and devastated when doctors told us that he was not expected to live to his first birthday. Our little baby boy had a hard fight ahead of him; to symbolize the courage he would need we put a stuffed lion in his bed and we gave him the middle name Lion. To us, the lion stood for strength, courage and hope, all of which we knew our son had, and

How old is your business/ organization: 9 months (research and development), official company now for 3 months

would need in his fight to survive. Doctors discovered that Landen’s heart condition was caused by a rare disorder called LEOPARD syndrome. By this time, our little Lion was in endstage heart failure. We faced a difficult choice: Make him comfortable at home to enjoy the little

Tell us about your family (other children, ages, hobbies): Brayden (10), Madisen (8), Koelle (6) and Landen

time left, or keep him in the hospital and try for a long shot heart transplant. We immediately listed him for a heart transplant.

(3). We love doing things as a family, whether it is

On Mother’s Day, at 3 months old, Landen was

hiking, biking, or watching a movie.

given a new heart. Another little girl, fighting for

Tammy Bowers Salt Lake City, UT www.lionheartinnovations.com

52  The SpecialMoms magazine ~ Winter 2014


@ lionheartinno

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Interview her life, had lost her battle. And along with this gift

with medical needs have few alternatives then

from heaven, her brave family sent us the stuffed

keeping track of every heartbeat, sugar level, and

animal that she had held on to all of those months,

appointment by hand. There had to be a better way.

it was a little lamb. We now say “Our strong lion has the heart of a little lamb.”

What is the most rewarding thing about being the mother of a special needs child? The perspective on life he has given me. His time with us is “borrowed time”, so I am going to enjoy every minute of it. I remember one time when my son was 2 ½ years old, I had ran upstairs in our house and when I came back down he had toilet papered the house. Normally, I would have been

The vision for the Pocket Physician was not to replace doctors and medical providers, but rather to work with them to give them accurate and complete information.

Caregivers are already

required to be specialists, and with this complete app they will be empowered to that end. The





application is meant to help overwhelmed individuals, parents, and



effective care by eliminating mistakes and saving valuable time.

mad at the mess I had to clean, but I thought

Knowing first-hand the financial struggles those

about just a few months ago when my son

who have or take care of someone who has

couldn’t walk. I thought about other kids whose

a medical needs can have, with co-pays,

funeral I had attended and also our wonderful

reoccurring medical bills, the cost of medication

donor family. I “get” to clean up his mess and I

and medical equipment, I wanted to make this

am grateful for this.

app available for free. That way anyone can

Briefly explain to us about your business/charity and why you decided to it?

have access to an easy, convenient way to track,

The Pocket Physician is the industry’s first all-in-

development of this app. To find out more about

one mobile, medical application, the Pocket

this project visit it at the Prefundia page: http://

Physician. Meant for caregivers, parents, and


individual use, the Pocket Physician will allow

What advice can you offer to other mothers who are looking to start a business or charity?

users to track vital signs, take notes, store medical records, reference important literature, schedule appointments, calculate expenses, and more. I

organize and advocate for their health or the health of their loved ones. For this reason we are using crowdfunding on Indiegogo to finance the

first conceptualized the Pocket Physician while

I would just advise to follow your dream. I never

caring for her son who was diagnosed at a birth

thought I could do something like this and at times

with heart failure and a rare genetic condition.

I feel scared and inadequate, but then I think

Between a heart transplant, feeding tubes, eight

about the people I can help and I know I can do

different specialists and multiple hospital stays, I,

it. It is not what I ever planned, but I didn’t plan to

like others who face these family challenges, was

have such a special little boy and I will forever be

overwhelmed. I and others who care for those

grateful for the change he has made in my life. Winter 2014 ~ The SpecialMoms magazine   53

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Interview What was the biggest struggle you encountered when starting your business/charity?

What motivates you? My will to keep my son here with me as long as

For me it was confidence. I was scared. I still am scared. I never start anything I don’t know if I can finish or not, so the idea of starting a business scared me. But then my 10 year old son said, “Mom, it is better to try and fail, than to not try at all.” I am grateful for his advice and his belief that I can do this. When I started this journey, I had no idea I could handle the things I do, so we never know what we can really do unless we try.

Tell us what a typical day looks like in your household?

I can. That is why I started this app. I needed a way to best take care of my son. I needed a way to be organized and give his doctors the information they need. My son Lion will always be my inspiration. He changed my life and I am grateful each day for that.

Is there a charity or organization you volunteer for and/or support and why? I run a non-profit LionHeart Medical which provides medical binders for those in need

My days are busy getting 4 kids ready for school,

through donations. I also present to parents in our



Children’s Hospital NICU every month for the last

feedings, monitoring his heart rate, homework

3 years. I volunteer for HopeKids, an organization

and just tending to everyday mom things, I then

for kids with life-threatening illnesses, where the

begin my work when everyone is in bed. Add

last 2 years I have been able to organize a Track

multiple therapies and medical and business

and Field Day with the Brigham Young University

appointments each week also.

Track and Field Teams. That is one of my favorite



How do you balance work and family life? It has been a bit of a struggle. I have always been a stay-at-home mom, so adjusting to working has been a little difficult. My house isn’t as clean, laundry is a little slow, and dinner (well, not quite as home-made as it used to). I also find it hard to stop working because I hate not being finished with something, but when you are starting your own business, you are never done with work.

Do you have any awards or recognitions you want to share? No awards, but for me the most important “job” in my life is being a mom. 54  The SpecialMoms magazine ~ Winter 2014

days of the year. This amazing little boy, who has a condition where he needs continuous oxygen with an oxygen monitor, has been at both events and this year he came up and told me how he had been practicing running the mile. He puts his monitor and oxygen tanks in a backpack and practices the mile. I look up to his determination to not let anything stop him.

What do you see in the future for your business or charity? I have a lot of plans for this business. I hope to continue to receive guidance on how to help the lives of those who have been given the privilege and responsibility to care for these amazing kids. u

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Winter 2014 ~ The SpecialMoms magazine   55

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Business Briefcase

Top 10 Questions To Ask

Before Launching Your Own Business If you have decided to launch a business, you

simply not be enough. You need to know who your

have made a very courageous choice. There are

target audience is, who is your ideal customer?

many things you need to know before launching

Where do they hang out (ex: online, playgrounds,

a new business. There is inventory to take into

bookstores, etc). If they are online, when are they

consideration, initial start-up cost and upkeep,

online, and what social media platforms are they

hiring employees, sales, marketing...and the list

on (ex: Facebook, Instagram, Twitter, Pinterest,

goes on extensively.

mom groups) Honing in on a target audience is something that you can delve into even deeper

Here are the top 10 questions you need to ask yourself before launching your own business.

by creating a specific niche and then going on to create a sub-niche. In this manner, you will be certain that you have focused on a specific need

Are you launching this business for the right reasons? Sometimes an


for an even more specific customer.

individual or a group of individuals will launch a business because they think it is expected of them or because it is a family

tradition to do so. Other reasons are simply for the


Have you thoroughly researched your action plan? Setting goals and measuring them is essential when

monetary benefits. With high hopes of making

launching a new business. Put a plan

tons of money, sometimes a new entrepreneur

into motion, but allow yourself flexibility to expand

may lose sight of his or her customer.

on that original plan. Ask yourself if your business plan is too narrow minded or if it will achieve the


Who is your target audience? Know-

desired outcome you seek and go beyond even

ing that you want to create a business

that. Get some input from other small business

and knowing what that business is will

owners to see if your goals are attainable.

56  The SpecialMoms magazine ~ Winter 2014

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Business Briefcase Ask yourself are people looking for this product or service? Make


your business becomes steady enough to stand on its own two feet?

sure you research if there is enough demand for the product or service you

are offering or if you will be just another company offering the same old thing. Ask yourself if you can


Do you have a marketing plan in place? How will you “get the word out” about your new business, and will it be the best return on your investment?

put a new innovative twist onto something tried and true.

Know your competition? You have


identified your target audience great, but do you know who your competition is? What are they doing? How are they

reaching your audience? Start following some experts in that field on Twitter or LinkedIn to see what they are doing.

Ask yourself how much time are you willing to dedicate to this business?


What if this business is something that you will find success with right away?

Are you willing and able to put the time and trouble in if it does become successful right away? Make sure that your family is on board with your decision, and what your time constraints will be. Know when your work hours will be (ex: first thing before the kids get up, while they are in school). Do you have a backup plan for help (ie: nanny, babysitter) if you child has to stay home from school because of sickness or there is no school. Your business can’t just stop because you have a sick child. You have orders to fill, clients work to complete.



Do you have all the skills needed to start this business? Meaning do you need an accountant, or a virtual assistant. When you first start a business

you may just have to do everything since you will have limited funds to pay someone else to do the work. But see if you can get some help from the local college from the students who are looking for intern work. Maybe you are good at graphic design and you met someone in your networking group that needs help with a brochure but they are an accountant. Swap services, I’m sure they are needing your help as much as you are needing theirs. Don’t be afraid to ask for help.


Do You Have An Office To Work From? Working from home is just like any other job in the fact that you have to have a dedicated place to

work from. You may only be able to work at your kitchen table or from a big desk in your home office. It doesn’t matter where your “work space” is, as long as your family knows this is “your” space ~ YOUR OFFICE, and respects when you are working.

Also, think about whether or not this is a part-time business or a fulltime endeavor. Do you have enough funds to last for six months to a year until

Once you are able to answer these important questions, you can be well on your way to having a successful business endeavor.


Winter 2014 ~ The SpecialMoms magazine   57

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