Our Story of Regression and Down Syndrome

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First we want to thank our family and friends who have been there for us the last two weeks. ME had an episode that we still don't have the words for, and we are still processing.

Our family and friends walked it out with us day by day, and we cannot thank them enough.

Two weeks ago, our sweet ME was brought to the ER. That was the beginning of our new normal.

But the story does not start there.

Our story starts three years ago.

ME was in school and she was thriving. She was in her third year in a school that is absolutely wonderful. The staff, the families, the experience was so wonderful.

Her last year I saw a change. My friends and family all shared their concerns as well.

ME was regressing. She was losing speech. She gained a sleep disorder.

She was a joyful child who became so much less joyful.

This is ME before she began to regress.

She became tearful. Quiet. And many skills were lost.

In that moment, I raced through my mind all of the scenarios that could make her regress.

Hormones? Something medical? Depression? Did someone hurt her?

We went to our doctor and many tests were run.

Her school turned to a behavior therapist, as did we.

Our cardiologist was consulted. ME was due for a heart check in June. Our ped recommended we move that appointment up. Our pediatrician was as concerned as we were.

Our cardiology appointment was un-remarkable. The echo looked great.

Until we heard this...

"ME's repair continues to look great. However, her heart rate is extremely low. We need to rule out many of the things that would lower her heart rate. If she drops to 30 while she is sleeping, it could be fatal."

My husband, my daughter, and I stood there, in shock.

Was this related to the new regression we were seeing?

After many tests, two weeks later, he said to us, "In rare cases, stress can cause a low heart rate. What ever it is that you think is stressing her out, I recommend you change that."

We took her out of school and decided to home school her.

This was the only place we had seen any stress. I cringed as I did this, because we love her school. So when I say this was the only stress we saw, I cannot say that I saw this as stressful.

It is truly one of the most beautiful places, and her teachers were amazing.

In spite of that, we took her out of school. Desperate to understand why this was happening.

Within two weeks, her heart rate was back to normal.

We saw much of the regression resolve, but truth be told we continued to see regression in other areas.

This regression continued over the last three years.

This regression was why I decided to open the Dream Big Cafe. I wanted to give ME an opportunity to socialize and give her a safe place to grow. Stretch her wings. Have opportunities to communicate.

Her speech was slowly going away, and I wondered if we opened a cafe, if maybe this would help her.

The cafe did not let me down. Bob would welcome her, and she grew to welcome him back. We asked her to bring a sandwich to a customer, and she did.

We worked on saying thank you. Words that once rolled off of her lips.

We expected her to get out of the car, and walk through the kitchen door. It was perfect. Our parking spot was right next to the back door.

So while we grew an awesome lunch experience, we used this as an opportunity to help ME gain her skills she was losing. It was therapy.

She grew so much from this experience. In more ways than I can count. It had been an amazing experience for her.

However, it did not stop her regression.

And more recently her regression hit rock bottom.

ME hit rock bottom on November 11. She was taken to the emergency room, and the last two weeks doctors have worked hard to help her.

Yesterday she was sent home from the hospital. One day I will be able to write about it. For now, we are taking time to process what just happened.

We are working with doctors to understand it.

We have the most amazing neurologist and psychiatrist who believe that they can help her.

We will do our best to share with you as we learn why this is happening.

Right now, we are so incredibly grateful for the exceptional care of LeBonheur Children's Hospital.

We trust our team of doctors, and we would like to ask all of you to continue to keep them in your thoughts and prayers as they continue to help ME.

We have been so grateful for our friends and family, who, literally, walked us through this every single day.

We are taking this new normal one day at a time. We hope that one day our experience can help others. For now, we are working hard to help ME regain lost skills, while our family takes time to process what we just experienced.






Dreamers Gives Back Foundation UPDATE

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The last five plus years have been an incredible journey. 

We started with Dreamers Merchants- Coffee Company, which is still at the heart of what we are doing.

This company is a company in which others can sell our incredible coffee, and our team will ship out their orders.

It’s an opportunity for families to learn the entrepreneurial life, on a very small scale.
A way to empower families. 

We then opened Dream Big Cafe four years later.

This cafe was opened in honor of our daughter, MaryEllen.

For our daughter MaryEllen.

Her brother, Nick, and I, hope to continue to grow this little sandwich shop, and give ME an opportunity to learn as we grow it.

The hope is that by the time she is 18-21 years old, she has a vocation here.

A place to hang out with friends.

 More importantly, a safe place to work and hang out. 

Finally, my husband John Grover, and I saw a need while creating this future for MaryEllen.

We saw a gap.

Together, along with all of our children, we made a decision to create a foundation that would help serve the Memphis Community and beyond, and give the soft support that is needed to organizations, families, and businesses.

Dreamers Gives Back Foundation is our response to so so many people asking us for help, as we were growing a future for our daughter! 

We hope you will join us as we Dream Big and Give Back!


Dreamers Gives Back Foundation

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Dreamers is three plus years old.

In the last 3 years, we have learned so much...

And now we want to make sure we teach all we can with that learning.

My husband and I are excited to announce that we are creating a training program that we believe will expand jobs in the Memphis area and beyond.

We are doing this by creating a new non profit called Dreamers Gives Back Foundation.

Dreamers Gives Back Foundation will focus on training in every area we can think of related to Dreamers Coffee Company.

Our hope is that any skills taught through our training program will enable those who go through it to go back to their community with a skill set that will be helpful to  them in their future job.

For now, we will be working with the University of Memphis TigerLIFE program as we continue to create this program.

Dreamers Gives Back Foundation will be a 501c3 non profit.

We are planning our first fundraising event, and we hope you will come out and join us!

Together we will help make Dreams come true!


Early Morning Pondering About My Hearing Loss

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As a person who was born severely deaf, I am almost always at a loss for words when people talk to me about my deafness.

People ask so many things.

I try to share my journey the best I can.

People say everything from, "I could not tell you were deaf."

All the way to, "You sounded different before you got hearing aids."

--To those who say they could not tell...

nor could many teachers, friends, family members, and many around me who now realize that it was right in front of them.

Trust me, I wish they could. Though, there was one person who knew. He just did not know what he did not know. My dad knew something was not right.

--To those who say I sound different than I did before I got hearing aids...

Yes, of course I do.

When a person can actually hear their voice, they can control it too.

I could not hear my voice.

I did not know what loud and soft meant.

I was always so confused when people would say, "Diane, you are being too loud."

Or when I would get in trouble for being "too quiet."

It all sounded the same to me.

My entire 50 years I could never grasp the too loud or too soft.

I wondered why I could not understand that concept.

So I would put my hand on my throat.

I knew if I was being too loud or being too soft by the vibrations on my throat.

I mastered feeling my throat and matching what the vibration felt like with those who responded to my voice.

"Diane, you are too loud...."

felt different on my throat than

"Diane.... you are being too quiet."

Both got me in trouble.

So I counted on my hand feeling my throat my entire 50 years.

In time, I knew how loud or soft to be.

Truth be told, I still made mistakes because I would talk and not hold my throat. Those times were few and far between because I was corrected rather quickly. My entire life.

As for articulation, I can thank my dad.

I was told over and over again....

Diane, articulate.

Diane enunciate.

Diane stop stuttering.

None of that made sense to me.

So I watched my mom.

I saw the way she made her words.

And practiced in bed, at night, making a t.

Even though I could not hear it.

I could see it. I saw my mom make a t.

I saw the way she put her teeth together. I watched her closely to see how to form words.

I trusted her.

And I knew if I held that t long enough, I would not get in trouble.

Same for s's, the th's, the f's, and so many other sounds.

They did not exist. But I saw them. I saw my mom make them with her mouth.

I mimicked my mom's movements of her teeth, her tongue and her jaw.

I practiced her movements in bed at night.

In time, everyone praised me for being articulate.

What ever that was.

I did not hear the difference between what I was told I was doing wrong, and what I now mimicked.

In time, I just did what I saw naturally.

That did not change that I could not hear.

I would lean in, and watch people talk.

People would mention how they loved how much I cared about what they were sharing.

I was, and am still, dependent on watching every thing you say.

I was lip reading every word.

I still do.

If someone is on the other side of the room from me, I will "hear" every word they say.

My friends have tested me.

We have laughed about my ability to do this.

I am getting lazy with these hearing aids, and I am counting on them more and more.

But even with them, I need to watch your mouth for me to "hear" you.

The bonus in all of this....

It turns out, I do not have a deep and gravely voice like I thought I had my whole life.

It is rather pretty. And very sweet. Nothing like I heard it my whole life.

And nothing like I hear it without my hearing aids.

I do not like to hear the voice I heard my whole life. I love my real voice.

In the morning, I would rather not say good morning to my family until I get my hearing aids in.

All of the world of sounds have opened up to me,

and my own voice is no different. It is truly my favorite thing to hear.

My hearing friends tell me how much they hate their own voice.

Not me.

It is like nothing I have ever heard.

And every day I am grateful for my voice....

And then there is music!

Not one single song I hear on the radio sounds even close to what I heard growing up.

My three residual sounds in my right ear did all the work.

(For those science geeks, they are in the low tones. I'm a science geek so I am comfortable calling you out. So yes, I heard three sounds in the low tone pretty normal, in my right ear. Which was where all of the work was getting done. Any sound I heard that was close to normal was a low sound.)

All the rest are somewhere on that crazy chart of hearing loss. On the audiogram.

It is not lost on me that a person who was born so severely deaf never heard of an audiogram until I was 50 years old.

And that audiogram changed my life for ever.

For the better.

Though it was so much hard work.

This "hearing" world was a lot to take in for a 50 year old, who has never heard SO many sounds.

Every single day, still today, I learn how to hear, and appreciate the hearing world.

I am a realist.

I know that my hearing is manufactured.

I know that those who actually hear are living in a completely different world than I am.

But I am grateful for every new sound I hear.

I am going on 3 years this summer living in the "hearing" world.

I realize many things.

For one,

I can snap.

I wrote about that right after I got these "machines" er, um I mean, hearing aids.

I grew up wishing I could actually make noise with my fingers.

I remember also wishing I could whistle.

I heard my own version of whistling and snapping.

When I got these sweet girls, who I call Faith and Hope, (thanks to one of my Facebook friends helping me name them), I realized what snapping really was, and what whistling really was...

and it turns out....

I can do both.

Very easily in fact.

I wrote about both of these tricks I could do really close to the first days of my hearing journey.

As I shared in the beginning of this post

 I still get asked a lot of questions.

I do my best to answer them as I take in what they are asking.

It can take a lot at times...

Some people will  ask me this...

"Do you think you lost your hearing? Any chance that you lost it, and you just now realize it?"

I smile when they ask this.

Those who have known me my whole life do not ask this.

My life finally makes sense to them.

And it finally makes sense to me too.




Meet the Spice Girls and their mom-Jill Spicer

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I am writing a series of posts introducing our many Dreamers and sharing their “why”!

Meet The Spice Girls!
Emma, Ella, and Finn- Jill's "Why"
Jill Spicer, their mom,  has been a dear friend to me for years.

I’ve watched her share her stories about her beautiful family over the years.

I was captured by her ease of acceptance and love for all of her children, and especially for  her three girls with Down syndrome. It reflected much of how I feel about MaryEllen, and was so relatable to me.

Tragically, Jill and her family lost sweet Finn/Vera suddenly last year.

In that journey Jill has gone on to be the teacher of love once more. Her “This is what grief looks like today...” posts have helped so many who follow her understand and walk through her journey of grief along with her.

Finn "Self Portrait art work. 

Finn's night to shine
In honor of all of her girls, Jill has remained a Dreamer.

She is incredibly supportive of me and of the Dreamers mission.

Here is what Jill wants you to know about her reasons for becoming a Dreamer:

“I was intrigued by the Dreamers mission from day one because I know the lack of opportunities afforded the disabled community. At the time I contacted Diane about starting our own dream company, I had three daughters with Down syndrome who were approaching adulthood and I wasn’t sure what they would be able to do for meaningful work. Our state isn’t known for being helpful in facilitating jobs for the disabled population, so I knew it would fall on me to look for opportunities for my daughters.

I believed in Dreamers as a concept because it provides the disabled population not only an opportunity to work, but an opportunity to be business owners and entrepreneurs; it gives an underrepresented group of people the ability to grow and not remain in a stagnant job situation.

I believe in Dreamers Coffee as a product because of the fact that it’s fair trade, organic, and most of all--delicious! Dreamers Coffee made me a coffee lover again.”

Thank you Jill for joining the Dream Team! And even more importantly your friendship!










To follow Jill and her daughters on Facebook follow The Shine Lab here:
www.facebook.com/shinelabproject/

To purchase from Jill and the Spice Girls go to:
https://squareup.com/store/dreamer-jill-spicer

World Down Syndrome Day #LifeisbetterwithYOU/ME T Shirts are available!

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You can order these by going to http://www.dreamersmerchantscoffeecompany.com/

Or by contacting your favorite Dreamer





Meet the Kowalski Family

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This week, I am interviewing Dreamers who sell Dreamers products!

I’m asking them to share with you their “why”!

Meet the Kowalski Family!

Mom, Laurie Kowalski, became a Dreamer and hit the ground running!

Here is what Laurie wants you to know!

“My reasons for wanting to be a Dreamer are my kids.
I’m so proud of all of them!


My daughter Kristen is the oldest.

She is an OT in Chicago and knows the importance of meaningful employment for people of all abilities.

She’s always been encouraging of her brothers and helping them to achieve their fullest potential.

Alex is 22 years old.

Charlie is 21.
They both have jobs and we are grateful for them but they are considered underemployed since they only work a couple of days per week. We hope to grow our business to where they can be more fully employed.”
To follow the Kowalski family go to:
https://www.facebook.com/kowalabeans2017/

To purchase from the Kowalski family go to :
http://www.dreamers-kowalskifamily.com/


Meet Jacob and Melissa Hoff

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I love sharing the “why” behind each of our Dreamers who sell Dreamers’ products! 

Meet Jacob and Melissa Hoff! 

Jacob is Melissa’s “why”! 

Here is what Melissa wants you to know about her efforts to grow her Dreamers business! 

Melissa said, “These (photos) all show Jacob at school included with his peers! That’s our why - if we want to change perceptions, we need inclusion everywhere, not just at school!” 




Melissa went on to say, 
“He is the most social, goofy, lovable little man and he deserves to be included and have opportunities like everyone else!” 

To follow Jacob and Melissa go to: 


To purchase products from Melissa go to