A photo from the Uncle Bill's Coffee Stop Facebook page shows a few of its offerings.

George Augstell, Man With Down Syndrome, Opens Uncle Bill’s Coffee Stop

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George Augstell mans the counter at Uncle Bill's Coffee Stop. When William B. Gee Sr., died of cancer in 2013 at age 47, his nephew wanted to honor his memory.

George Augstell, 28, who has Down syndrome, decided to combine the legacy of his uncle with his own lifelong dream of opening a coffee shop, stemming from volunteer work in food service and a love for meeting new people.

And so Uncle Bill’s Coffee Stop was born. Located in the lobby of the Golisano Center for Community Health in Niagara Falls, New York, the coffee stop opened recently with Augstell as owner and operator.

A partnership between Niagara Falls Memorial Medical Center and Rivershore Inc., the coffee stop got its start when Augstell, a longtime Memorial volunteer, told the hospital’s CEO, Joseph Ruffalo, about his idea.

Ruffalo was all in, telling Buffalo News George’s business plan “made all the sense in the world” for the Golisano facility, which offers services for adults with special needs.

And now, Augstell and a family friend who was hired as his employee serve snacks, pastries, soup, and, of course, coffee to Golisano employees and visitors, clad in polo shirts bearing the Uncle Bill’s logo.

Augstell, who’s gotten attention from several media outlets, makes a point of calling Uncle Bill’s a coffee stop, not a coffee shop. He wants people to stop in for a visit — and that they have.

Uncle Bill’s was also recently recognized by a local senator.

Susan Goodman, Governmental Affairs Director at the National Down Syndrome Congress, said Augstell is showing others the possibilities for those with Down syndrome.

“Augstell is an example of what we want for all people with Down syndrome — the opportunity to live a life he chooses with the appropriate support — including real employment on a meaningful job with a chance to achieve the American dream,” Goodman told The Mighty.

And as a now successful business owner, Augstell had a few words of wisdom for others with Down syndrome.

“Be yourself and to not be afraid of failure or anything else,” Augstell told The Mighty. “Also do not be afraid to pursue your dreams and never give up. I think it’s important in life to have a good job that you love.”

At that, Augstell has succeeded.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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When a Woman Said ‘At Least You Can’t Tell’ My Son Has Down Syndrome

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We’ve all experienced the awkward silence that occurs when somebody injects something ridiculously inappropriate into the conversation. But when you have a child with Down syndrome, “word vomit” takes on a whole new meaning. It puts people on the spot. Nobody has ever rehearsed their response to finding out a baby or child has Down syndrome. Some people don’t even know what Down syndrome is! They might think they do. They might be able to pick someone with Down syndrome out of a crowd. But more often than not, they know just enough to have the confidence to blurt out something totally inappropriate — and leave feeling proud of it. Words of comfort coming from well-intended individuals can leave you speechless, among several other things, but comforted usually doesn’t make the list.

I feel as though I’ve heard it all, but I would be naive to believe that. After all, my son Gavin is only 18 months; we have a lifetime of foot-in-the-mouth incidents to experience. “I’m so sorry.” “That must suck!” “At least he will always be ‘young.’” … That’s just to name a few.

There was a comment made months back that has always stayed with me for a reason I can’t explain. “Oh, I never would have guessed. At least you can’t tell.” At least you can’t tell… I was left repeating that to myself several times. Now, let me start off by saying that, no, I cannot tell. When I look at Gavin, all I see is Gavin. I see my son, and that’s it. Does that mean I think he doesn’t possess any physical traits of Down syndrome? No. In fact, I know he does. It’s why the doctor became suspicious of it in the hospital, and why strangers are able to know his diagnosis without me saying a word.

The author's son and daughter at the park

But why do I not want people to be able to tell? Why is that my saving grace? It is like she said to me, “Oh, never mind all the things he has overcome. Never mind all the things he has accomplished. Never mind all the hearts he has touched. That would be a horrible thing to be identified by, so thank God you can’t tell.” Or did she mean, “Oh, people with Down syndrome do not meet mine, nor the world’s, beauty standards. Their value is therefore decreased. These are things that make someone socially acceptable. I do not want him to be robbed of those things, therefore, thank God you can’t tell.” Do I think this is how she intended her remark to be taken? Of course it isn’t! But it’s how I heard it nonetheless.

Gavin will grow into a man. He will grow into a man with Down syndrome — a man who looks like he has Down syndrome. And when that day comes, will I jump out of bed and exclaim, “Oh no! Now you can tell!”? Definitely not. I don’t exactly know why she said this or what her point was. I love my child with Down syndrome. I do not love him despite his Down syndrome. If your child was born with blonde hair, but you were really expecting a child with brown hair, would you walk around hoping nobody could tell? Would you think, “Maybe if I don’t discuss it, nobody will know.” No, you wouldn’t. Because that is silly. You thought your child would have brown hair, but they don’t. They have blonde hair, and that is perfectly, beautifully, blissfully OK. I thought my child would have 46 chromosomes, but he doesn’t. He has 47, and that is OK.

The author's son wearing a blue shirt

My child is so much more than his extra chromosome, whether you can “tell” or not. He is a fighter, a survivor of cancer, a hard worker. He has more determination than many adults I have met. He has a beautiful smile, an infectious giggle, and his hugs alone can mend a broken heart. And I hope you can tell.

Follow this journey on Mothering When Life Happens.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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'It's Time to Go': The Bittersweet Summer Before My Son With Down Syndrome Starts School

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Sixty minutes. One hour. A solid hour. How can something so solid be made of sand?

There was focus and intent. There were teeth grinding and spoons and buckets scooping and pouring. For 60 minutes. I nearly keeled over.

I knew he loved the sand. I mean, I’d seen a bit of it – we had bought one of those tables but it kept getting drowned by the weather event they call “U.K. Summer” (which looks more to me like bucketing down rain, but beggars can’t be choosers). That sand was played in, but not like this. Nothing remotely like this.

young boy with down syndrome plays in a sandbox
Rukai playing in his sandbox.

Sixty minutes. I may as well have been invisible. He’s never sat and paid solo attention to anything off-screen for so long, always wanting to hang out with me, clinging, looking for direction, for suggestion, for a march or a dance or a different episode of Mister Tumble on TV. And as much as I treasure my time with him, my heart has been desperately seeking evidence of his imagination brewing. Great savory chunks of that magical “pretend play” have eluded us for so long.

I imprinted that scene slap-bang onto my retinas so I could pack away that memory beside the rest.But as the time ticked away and I sat there watching him shine beneath a golden ball high above us doing the same, here in this thing they call “summer” – as sure as caterpillars eventually grow wings – he sprouted a pair of his own. They were electric, glittering and too bright to watch, but I stared anyway. Gods be damned, I stared and stared.

Those memories which say, “Yes I can…you watch me.” Yes I can. Yes I am. Yes I will.

You watch me.

Sixty precious minutes in another one of these fleeting days. These days which are shockingly short. These days which are dwindling here within that final countdown to “Big School.”

No one is ready for that around here.

My heart is in my throat and at the same time below my feet. I trample it daily. I am so afraid for him, for us – that he is not totally ready, that he may be treated badly, that he may be squashed into a corral when he should instead be set free across a wild, grassy range. That he may be marginalized and underestimated and limited. My son is going to start school next month. And here I am, elated he’s sat for an hour to play in the sand. I’m elated that I’ve seen his pretend play hit stellar heights all in the space of a few days. After a stint on a local “beach” earlier this week and this morning’s amazing bit of longer play in a makeshift sand pit, my brain said, “Holy cow, go get a better sandbox, stat – this is important. Just watch him think…”

So we went.

And we bought it.

And we set it up.

And he played for an hour.

Why have I only just figured this out?

What else have I missed?

What else will they miss?

How in the world am I going to keep all our means of communication open enough to enable identification of the passion points? To know where he wants to go…

…if he still cannot speak?

It is on this point which my heart is skewered. Every. Single. Day. But like everything else, it may be more difficult than the “norm,” but we will still find a way. Like everything else, we will once again glow with pride as he takes another magical step towards independence.

We came in from the sun to eat dinner. He ate with fervor, then there was his favorite show before him. To entertain him while I got some head space. Screen time is a necessity in this house. My life requires that offer of head space – no shame in this house! Think otherwise? You try living here.

Then the table is pushed away, and now cleared up, he takes my hand. No words – he just pulls me to the giant drawing pad he’s set on the floor. Looking in earnest at the box of pens, I pull it out and he roots around. We work the cap off together and here I draw a circle. This is maybe replay number three of the circle-drawing thing, but it hasn’t dulled the shine because we are so very much just getting started. He takes the marker off me, touches it to the paper and then he’s off.

Round and round and round. That is the circle of life. That is everything.

circles drawn by young boy with down syndrome
Rukai’s circles.

He’s done it before, but I’m blown away by the fact that I’m seeing him remember it’s something we’ve done before. I’m seeing depth of understanding and the attribution of purpose to what he is doing. And I haven’t said a damn thing. I just drew a circle.

But there is meaning. This is not scribble.

There is intellect. This is not clueless.

There is ability. This is not hopeless.

There is Rukai. This is not Down syndrome. This is Rukai. Drawing me some circles. So many suggested he wouldn’t. I want to bring him to face them with a pen, to circle them as if with shame.

Look at me! Look what I know! Look what I can do! Look who I am!

Look.

Shut up and look.

My mind, too, is racing in those circles today. Round and round.

School coming. Late milestones. So much to plan. So little time left to be “just us.” My heart is breaking, yet my heart is soaring. I don’t want time to take my little boy from me, but then again, it’s not really time taking him away – it’s him taking himself away. Ahead. Forward. Upward. Onward. I am just a conduit.

And these feelings – like all those other deep, emotional experiences I’ve had in these short four and a half years – these, too, are just like everyone else’s.

A child is born to a mother. A child grows and develops and learns and thrives. A child becomes. A child exists. A child is. There is love.

There are so many wishes I have for my son as these days dwindle and our last summer as “just us” moves further behind before it eventually drops away.

“It’s time to go.” They said it at the end of the show “In the Night Garden,” and I burst into tears.

“It’s time to go.”

So, my son, go. But please always make sure I know where you are, and remember I am always here. Even one day when I am not. I am always here.

Rukai, I hope your life is kinder than the world is.

I hope the goodness in you draws goodness to you.

I hope you know you are my world.

I hope the world knows you are.

And you are Rukai. In sand and in circles and in my heart. My son. My every wish. My pride and my morning and my night and the flame that lights up my soul. Fly, little man. You go on and soar. Dream big.

I could not – in any plane of existence – be more proud of you.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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Mom Becomes Special Needs Photographer After Her Daughter Is Born With Down Syndrome

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Three years ago, Stephanie Mullowney had zero photography experience. It wasn’t until her daughter Hannah Grace was born that her passion for photography blossomed.

Within moments of being born Hannah Grace, now 2 years old, was diagnosed with Down syndrome and several holes in her heart. Mullowney knew from sonograms there was a chance her daughter would be born with the condition, so her and her husband moved from their home in Maui, Hawaii, to be closer to Mullowney’s family, and a better equipped hospital, in Tennessee.

Five days after Hannah Grace’s birth, Mullowney’s husband left, leaving Mullowney to raise her daughter on her own. Months of hardship followed, but the one thing that got Mullowney through was taking photos of her daughter.

Hannah Grace and Stephanie Mullowney
Mullowney and Hannah Grace

“I would take picture after picture of her with just my iPhone and a nice camera I got as a gift at my baby shower,” Mullowney told The Mighty. “I took literally hundreds to show the world how beautiful she really was.”

When Hannah Grace was 8 months old, Mullowney finally found a job. Her boss, a professional videographer saw Mullowney’s photos and urged her to buy a professional camera. “The more he encouraged me the more I believed I could do it,” Mullowney said. “So I bought a camera. [It] took me 20 minutes to get the strap attached to it.”

Professional looking photo of Hannah Grace

Now, a little over a year later, Mullowney is a professional – starting her own company, Paper Dolls Photography, in March. Since then, she’s done interviews with local news, radio, and several publications.

Young boy wearing patriotic sunglasses

Through her photos, Mullowney hopes to remove the labels society has placed on individuals with special needs. “Photography to me is like having a voice with no words, and a lot of times my subjects are nonverbal so it’s my job to be able tell their story for them and their families.”

Three adults with special needs

Mullowney focuses on photographing people with special needs and their families. She also takes photographs for The Down Syndrome Association of Middle Tenn. and the Best Buddies Organization, in addition to her private clients.

Photo of young girl smiling

Her advice to parents looking to capture their children with special needs on film? “Capture every moment without missing a single one because every little thing they do is a huge deal,” Mullowney told The Mighty. “You’ll find that taking that perfect shot will come with ease because every single one of them will in fact be perfect and cherished whether is taken with an iPhone or a fancy high end camera.”

Photo of happy little girl walking

For more of Mullowney’s photography, visit the Paper Dolls website and Facebook page.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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What School Reports Don't Show About My Daughter With Down Syndrome

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It’s school report time for my daughter Evie, who has Down syndrome. As lovely as the comments about her are, it still hurts to read certain things.

Her attendance stands at 79.34 percent, including one unauthorized absence. The school average is 97.1 percent. An attendance of below 89 percent deems a referral to the Educational Welfare Officer for monitoring or intervention.

I know there will be no EWO referral. I know Evie will be exempt from that.

I also know that the one unauthorized absence refers to one late mark — a mark given because I struggled at the start of the term to get her into school, when her thyroid function was beginning to fall and her anxiety levels were through the roof. Ever seen an anxious 7-year-old with learning difficulties and sensory processing issues? Ever tried to make them do something they don’t want to do? The fact that I managed to get her into school at all that day deserves some type of award, not a negative mark.

Evie has a low immune system and sleep difficulties, plus her underactive thyroid causes her a number of issues –- lethargy, anxiety, skin conditions. Three of those authorized absences were caused by medical appointments, and many more were due to illness.

Evie’s classmates this year have taken their SAT tests. Evie hasn’t, and rightly so. Her school has still sent us the information about the SATs and results.

I know we have to have this, all of this information. But the phraseology on these documents is such that it truly hurts.

“BLW” – is awarded if the pupil is below the standard of the tests.

Cheers, thanks for that.

While Evie isn’t at that level, why is all the phraseology so negative? Why on earth hasn’t our government or whoever designed these codes thought about this a little more? Why not put “not tested?” All children are worth more than a code or a mark. They are all amazing, each and every one of them.

I know that I should pretend that none of this bothers us. But it does.

I know that there are valid reasons behind each and every absence.

But it still hurts.

Just like every time I have to complete a form that I feel demands a character assassination of my own child. I have to list her weaknesses to get her the support that she needs.

Evie gives so much to this world. I don’t blame her school in any way for sending me the information. But surely there is a better way. All of this preoccupation with best at this, needs to work on that, test this and fail that… it’s no way to live.

I say all of this as a geek who loved tests and exams, who still loves to read and research. I know that not everyone is like me. I also see that the monitoring by the government, however misguided, is a way of trying to encourage and assist with learning. But if you don’t love to read or research, how will telling you at age 7 that you need to try harder help? It only makes them feel worth less than their contemporaries.

Evie may not understand any of this right now, but on her behalf and those of all her peers, I am incensed. They are just children. We learn better when we are happy, when learning is fun and natural. But instead let’s add more pressure to the teachers upon whom the results will also reflect. Let’s just add to their workload. Instead of allowing them to guide our children gently and with encouragement, let’s make their job even harder. What a waste of time, energy, emotion and money.

Evie is a valued member of her class. She is described as “bubbly and energetic.” She has progressed so well of late, particularly with reading, her favorite thing to do. Receiving negative content, no matter how well intended, obviously has a negative impact. Yes, we’ll brush it aside and carry on regardless, but it’s still there and next report, we’ll brace ourselves to read it once again.

Our children have so much to give. Maybe Evie isn’t going to be a rocket scientist, but then how many of us are?

Evie can sense when I’m sad; she knows when and how to make us laugh. According to one of her school friends, “Evie is the only one who checks on them when they fall.” A teacher told me that Evie runs around after another child and mothers her, fetches and carries for her…too much sometimes. Her giggle is magnificent and contagious.

These are the skills I want her to have.

Love.

Laughter.

Caring.

Sensitivity.

They are true gifts. You can’t teach them or buy them. They are inherent within her. She is a true gem. A rare find in this topsy-turvy world of ours.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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6 Questions People Ask About My Kids With Down Syndrome

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When people find out that I have kids with Down syndrome, there are certain turns the conversation always seems to take. Whether it’s questions, assumptions, or myths that need busted, Down syndrome is a conversation starter.  Here are some of the most common questions and comments I get, and my answers.

1. “I love how they’re always happy!”

While I love the positivity in this statement, it’s categorically false. Down syndrome does not alter the range of emotions a person is capable of experiencing. My boys express an enormous range of emotions.  I am not sure there’s any emotion they are lacking. They have the same feelings as any other child.

2. “There are levels of Down syndrome, right?”

I’m never quite sure what this one means, but I hear it a lot, but no, there are not levels of Down syndrome. Down syndrome affects different bodily systems like cognitive function (IQ), digestion, heart, muscles, and even facial structure and more. How each individual is impacted in each area varies widely.  Some people have majorly affected hearts and some have no heart problems at all. Some people have lower IQ’s and some have average IQs. To take my two boys as an example, Alex’s IQ is in the mid 60’s, so he’s mild to moderately impaired in cognition. He was born with a small hole in his heart which repaired on its own, with no intervention, and health-wise, he only has ear, nose and throat problems.

Ben’s IQ is in the 40’s, and he was born with Hirschsprung’s disease and hearing impairment. Ben has no heart problems, but he had leukemia, which is more common in Down syndrome. He also has autism, which is more common in Down syndrome, and a few other medical concerns. As you can see, just between these two individuals, there is enormous variation, and that is the case with all people with Down syndrome.

3. “Are they ‘high functioning?’”

What exactly does this mean? My guess is that saying “high functioning” makes people feel better about Down syndrome, but it’s not really a useful term. When I first had a child with Down syndrome, I bought into the myth that “high functioning” is better. While I can see that higher intelligence might make it easier for a person to become as independent as possible, I no longer consider “higher functioning” as better. Each individual has much to offer, and there’s no reason to assume any one factor is better than others.

There are also certain questions that I get specifically as a parent of two children with Down syndrome.

4. “Are they both yours?”

Um, yeah.  I didn’t kidnap anyone.

I believe this question is asking if one is adopted. I get the curiosity, but I never quite know what to say. I generally try to give this one a positive spin by saying we enjoyed parenting Alex so much that we wanted another child with Down syndrome. In our case, yes, one is adopted. There are usually dozens of adoption spin-off questions as well. But Ben’s story is Ben’s, and involves a whole other family, so I try not to overshare a story that involves so many other people.

5. “How do they get along?”

How do your kids get along?  Hugging one minute and Ultimate Fighting the next?  Yep, mine too.

6. “Are you going to have more?”

I don’t believe so, but children tend to kind of fall into my lap, so I remain open.

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