Gracie with her schnauzers.

How My Daughter With Down Syndrome Became a Successful Entrepreneur

My daughter’s birthday is March 21. That’s World Down Syndrome Day. Grace has Down syndrome and as the world marks the day with thousands of people pledging to “Spread the word to end the word,” the only R-word she knows is “retail.” Gracie is one of the youngest business owners in Wisconsin. Her all-natural pet treat company, Gracie’s Doggie Delights, was formed a year ago and has since blossomed into a successful family business. With thousands of online customers and two dozen retail locations, Gracie is succeeding in her goal — to make dogs happy.

Her success and her enthusiasm for this company has been been amazing for her mom and me to watch. Gracie decided at 19 that she was finished with high school. We had difficulty finding her a job in the community. There were some opportunities, but we knew they weren’t anything she would be thrilled about doing. We wanted to focus on something she was passionate about. The answer was right in front of us, barking for attention.

Gracie loves our three rescue schnauzers. She loves making them happy and giving them treats (who doesn’t?) The initial plan was to have Gracie work at our local butcher, who makes his own freeze-dried treats that our dogs love. But after talking with him, we decided to shoot for something bigger. Gracie could be her own boss, work at her own pace and work her own hours. The butcher agreed to set Gracie up with a good price on the treats, containers and a scale. The business was launched.

In the day-to-day running of the business, she is in charge of weighing, packaging and labeling the products and assembling the orders. She works hard, makes personal home deliveries and delivers to several of the stores that carry her treats. Her confidence has grown by leaps and bounds.

What drives this young entrepreneur? Seeing the dogs she makes happy. Thousands of customers have posted photos of Gracie’s “G-Dogs,” as she calls them, on her Facebook page. She looks at the dogs nightly.

Our dream would be for this company to grow enough where Gracie could hire some people with disabilities, but for now, we are able to keep up. We are thrilled at her success and seeing her grow more and more into the role of business person every day. In addition, we  get the pleasure of hearing from other parents of children with Down syndrome whom she is inspiring.

We couldn’t have imagined this for Grace when she was born 20 years ago. We can’t wait to see what the future will bring.

Buy some treats for your pup at Gracie’s Doggie Delights.

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Little girl with Down syndrome standing in front of a white door wearing an Easter dress

If I'd Known Then What I Know Now About My Daughter With Down Syndrome

If only I’d known then what I know now.

That you would be born in just four minutes with two gentle pushes.

That seconds after you were born you would look right into my eyes making me feel all would be good in our world.

That having an extra chromosome would not define you, you would be you, no matter what.

That at 5 months you would show more courage than I have seen in my 40 years as you underwent open heart surgery.

That your precious heart would be OK.

That you would communicate in your own ways, but loud and clear.

Little girl with Down syndrome standing in front of a white door wearing an Easter dress

That in your time you would laugh, talk, sit, stand, hug, kiss, wave and so much more.

That you would draw a crowd in with your sweet smile.

That you would bring endless sunshine into our lives.

That our world would be a million times more amazing than we could have ever imagined.

That you would change our lives for the better the moment we found out you were on your way.

That there was nothing to fear and everything to be thankful for.

That you would show us love, the kind of love that’s unexpected, unimaginable and unending.

That you would be the dream we never had, but truly our dream come true!

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When a School Excluded My Daughter With Down Syndrome

We had one of those hard parenting moments recently.

KC will start preschool this year. The thought alone terrifies me a bit, but I’ve worked hard to face the reality this day is fast approaching and my best response is to be prepared. We’ve researched many schools and talked to every educator in KC’s life about what they feel her best option for school is. We’ve received a unanimous response, “inclusive preschool.” We’ve worried about how KC’s petite stature will work out in a large group setting, but we’ve also watched her interact and keep up beautifully with her peers on Sunday mornings at church. So, we made a list of our best options with top of the list being KC attending the same private school her big sisters attended for Preschool. We talked with the big girls’ former teacher who was on board and very excited. She loved and taught our big girls so well it really seemed like an obvious choice. We aren’t aware of any other kids with disabilities going to this school, therefore, we came up with a plan to ensure her whole team was on board and we didn’t require any extra accommodations from the private school. We developed a grand plan and felt sure when we met with the school and introduced KC and our plan, they’d be glad to give it a go.

KC currently has a home teacher who was on board with going to visit KC in the classroom weekly to work on anything her new teacher thought KC could use extra help with. Her therapists were on board with us coming after her school day to keep in step with her peers. Her private PT was on board to come visit the school at playtime and even before the school year actually starts to make sure KC could safely navigate the playground. Her soon to be new teacher was thrilled to have the opportunity to have taught all three of our girls. A lot of thought and planning went into making sure this would be a successful first year of school and a lot of people were on board to make sure it would not require extra on the part of the private school. We excitedly sent an email to the private school Kindergarten director letting them know we are interested in sending our daughter to their school this year and we would love to sit down and talk it through to see how we all thought it would work out. We mentioned she has Down syndrome and she’s small, but that was pretty much all of the description we sent.

Sadly, we never had the opportunity to sit down and have that conversation. The director called my husband soon after he sent the email to explain they aren’t equipped to take kids with IEP’s or kids who require anything above speech therapy. No, they didn’t ask if KC even needed anything above speech therapy or if she even needed speech therapy. They also let us know their class size is too big for our child. We’ve sent two kids there already, we are well aware of class sizes and confused at how they knew classes are too big for someone they’d never met.  They offered some other school recommendations for “Down syndrome kids.”

Maybe not surprising at this point, but their suggestions were all schools specifically for special education.

I cried a lot of ugly tears that day and then I cried some more the next. How can a kid they never asked a single question about be discouraged from attending their school? How can recommendations be made about what would be best for someone they’ve never laid eyes on?

My heart hurt. Part of me wanted to enroll her anyhow just to prove a point, but the majority of me wanted to keep her as far away as possible from the situation. I think about the educators I know, educators who are  so passionate about their jobs and the kids they teach and the opportunity to work alongside involved parents to grow their kids. I wonder how often they are denied the opportunity to have an amazing kid like KC in their classroom because the moment someone hears a diagnosis they turn their minds and their hearts from the possibility that a child with a diagnosis could benefit from a typical classroom environment. Or better yet, provide benefit to a typical classroom. How can this be right? How can my child be excluded from a school without so much as an interview? How can having Down syndrome alone be a red flag? My heart is broken. It’s broken for KC, it’s broken for us, it’s broken for the teacher that couldn’t wait to teach KC, it’s broken for the kids and staff who will miss out on a great kid. It’s also broken for the many other families out there whose child has been rejected or excluded without a fair opportunity. I’m sorry this happens. I’m sorry you guys have felt this hurt. It’s not right and it shouldn’t happen. We try so hard to make the right choices for our children and it’s disappointing when our kids are unfairly judged.

My biggest questions though, how can we use this experience? How can this be turned into good? How can our experience grow and educate others? I think sharing our experience is the best response. I think people have no idea situations like this occur. I hope people realize having a diagnosis doesn’t make you identical to everyone else with that diagnosis. Down syndrome is a similarity, not a uniformity. I want KC as well as other prospective students to be viewed as individuals by learning institutions and not by their diagnosis so they can find the best fit for education.

We feel strongly this year KC will thrive in an inclusive environment and that’s a choice we will constantly need to evaluate. I hate that so much thought and planning went into making all of this possible only to be shot down immediately by administration. As I’m reminded by close friends and family, we believe the God who created our sweet girl has a plan for her and while it may be different from our plans, it’s surely a better plan that anything I’m capable of concocting. I talked with another private school the next day who said all of the things you’d hope a school would say. “We’ve had the opportunity to have many different types of friends at our school and we are thrilled to meet you guys to see if this is the right place.” I talked with another preschool director who said she’s not had a kid with Down syndrome in her classes before but she’s more than willing to meet and she feels like she has a lot to offer KC in a classroom. Maybe one will be a great fit, maybe neither will but I’m at least thankful for those that are open to the conversation. I’m also thankful our journey with KC constantly grows me and reminds me of God’s love for us. The “noes” are painful but I can rest assured the “yeses” will be worth the wait and even the struggle. I know I’ll soon be sharing about the school she ends up going to and about both the challenges and the benefits of an inclusive setting. I know this journey will continue to have low moments as well as high ones.

KC is is smart, silly, capable girl and I know she will excel in the right environment.

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girl smiling in the woods

The Moments When I See How Far My Daughter With Down Syndrome Has Come

The day this little girl was born, I cried. I cried because my 31-week preemie was here safely. Then I cried because my husband walked in and told me her diagnosis. We didn’t expect a little bundle with Down syndrome, but we received one of the cutest.

I have other children too, and so many times I get frustrated when a stranger points out my “special” daughter (I do believe, however, that both of my daughters are special), and starts asking questions about her. There was one stranger at Costco, years ago, who stopped me and asked about all of my other children before they asked about Tullie and what her needs were. I so appreciated that, and I think my other children did too, but today, I’m going to talk about Tullie because she did something today that caught my eye, and it wasn’t anything unusual.

We were cleaning up breakfast this morning, and I told Tullie to grab her math book and blocks and start her school work. I turned around from the sink and saw Tullie grab her math book and then reach up on her tiptoes for the box of blocks for her counting. She then sat down at the table, opened up her book and did the next two pages. Drew the lines between her numbers to separate her columns because we are doing carrying in addition, added each column, did each problem, then turned the page, read the word problems and solved them.

It’s not an amazing feat. It’s not life-changing or earth-shattering. She didn’t solve any world problems or settle an argument between her siblings; she simply did her math work on her own.

These last few weeks, I have noticed how much she has grown, how mature she has gotten. She still loves “Frozen” and Shopkins and will happily play dress-up with anyone, but she has also grown so much more independent, sweet, kind, loving and is developing into a very beautiful young lady.

When babies are born, we are aware that they will grow, but it’s amazing that they do grow. When those babies who are “special” are born, we may assume we will be “stuck” in “baby” forever. Everything will be slow. There are too many unknowns, and those first hours, days and years can be intimidating because everything may actually be slower and overwhelming and hard and you’re dealing with the unexpected, but then we look up from the kitchen sink one day and notice a young lady, who served herself breakfast, dressed herself, put on her glasses, brushed her teeth, is reading everything in sight, cleaned her room, dusted, looks both ways to cross the street, can gather eggs from the chicken coop and will happily empty the dishwasher and put everything away in its place.

When we receive the unexpected we may expect the worst; we don’t often expect the best. When Tullie showed up the first thing that popped in my head was, “She’s gonna live with us forever.” Now, I don’t think I’d mind that too much. She is the sweetest and most giving.

Tullie has taught me patience. She has taught me how to be gracious. She has taught me how to be kind. She has taught me how to love. She has taught me how to accept life as it comes. She has taught me how to respect others. She has taught me the Gospel. I wish that everyone got a Tullie. I think the world would be kinder and more gentle.

Many times in those early years, people told me, “Jesus knows what He’s doing putting Tullie with you,” and when I heard that I would sneer in my heart. I’d get mad because it seemed cliche to say. But, I believe He did. He knew what He was doing. He knew what our family needed. He knew I would need hugs from a sweet girl when I had tears in my eyes from grief. He knew I would need to see her gleeful smile when she was sitting up independently at 10 months old while I sat and watched and played with her while I grieved her brother. He knew I would need her belly laughs and giggles while we rode in the car. He knew I needed her quick wit and snuggles while I wept more tears of loss. Jesus knew. He knew what our family would need.

So, today, I looked up and my eyes saw a very beautiful, sweet young lady, and she happens to be ours. For that, I feel very fortunate.

Follow this journey on Seeing Glory.

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This Mom Has Created Over 490 Napkin Drawings for Her Daughter With Down Syndrome

This mom drew over 490 napkin drawings for her daughter with down syndrome, and now they’re on display.

Heidi Crowter, a woman with Down syndrome, sitting ona chair, smiling, and talking on the phone

Speaking Up About Prenatal Testing as Someone With Down Syndrome

Hiya, I am Heidi Crowter. I am 21 years old and I was born with an extra chromosome!

In England, we’ve had a good stable government over the years, but now something seems terribly wrong to me. Our government has decided to roll out non-invasive prenatal testing (NIPT) on the National Health Service beginning in 2018. So as someone with Down syndrome, I didn’t want to sit at home and think about it on my own. No, I decided to go public and speak out.

In April of 2016 I did my first speech outside parliament which went viral. Then in June, on Brexit day, I went to London to do a video for the BBC to talk about the stereotypes of people with Down syndrome — which again went viral. This got picked up by Vic Minett who talked to me on BBC Radio CWR about the testing. Then in October last year I went back to London to do more protesting.

Sally Phillips (2nd best actress ever in my opinion) did a very light-hearted, upsetting , heart-wrenching documentary called, “A World Without Down’s Syndrome?” It was very sad for me. But despite the sadness, I had the confidence to get back up again and I was once again invited to speak about it on Radio CWR with Vic Minett.

In February of this year I went to Oxford to speak more about my life with Down syndrome, which is when I starting mingling with the stars! One of them is Sally Phillips and she is one of the most amazing people I have ever met. In March of this year I went back to London to do more advocacy. It was challenging as I got to speak with the people who are doing the testing. I asked them a question, “What is so offensive about Down syndrome, and have you considered how this makes me feel?”

As I was asking this question, I felt I had no strength to carry on. I broke down in tears as the need to justify my existence got to me. Tears were trickling down my face until I read these words in the Bible, “I praise you because I am fearfully and wonderfully made.”

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