J and Ryan welcome a family member

One of the sad discussions we’ve had with Jillian and Ryan has been the one about kids. They wanted a child. Obviously, that wasn’t going to happen. All of us have dreams denied. This was theirs.

We compromised with a dog.

Say hello to Gracie.

She’s a 2-year-old spaniel, part cocker, part Australian. Or so we’re told. Pleasant, active but not nuts, a dog that was adopted by a foster mom. And now she belongs to our daughter and her husband.

Lots of great things about having a dog. The responsibility, the love, the connection, the licks. Dogs aren’t complicated, either. They don’t clutter their existences with agendas and guile. They are who they are.

Jillian and Ryan are permitted a dog in their apartment complex, as long as it’s no larger than about 35 pounds. Gracie is 30. Our kids already are very responsible — they wouldn’t be married and living entirely independently if they weren’t — but this adds a new level. Previously responsible only for themselves, now they’re in charge of another living thing.

They grew up with dogs. Jillian cried when Walker, our black Lab, died at age 10. Our golden, Lucy, is now the same age. Every once in awhile now, Jillian will offer, “I love Lucy, but I still miss my Walky-dog.”

Giving Jillian and Ryan the responsibility of dog ownership is another step along the independence road. Kerry and I, and Ellen and Dimitri, hope Gracie is good to them and for them. Dogs are God’s creatures. We like to think Jillian and Ryan are, too.

Expect. Don’t accept.

And thanks for reading.

Paul018b0e0b2a0e6c1dc72900ee0c3f434969c21453a8

 

This is what’s possible.

Three years ago today, Jillian and her boyfriend Ryan walked the graduation line at Northern Kentucky University. They were the first students born with Down syndrome to do so, as part of a pilot program that since has received national attention. Jillian didn’t graduate in the traditional sense, of course. She passed 30 credit hours in four years. What she did do, though, was learn how to get along in the world. A big reason everyone goes to college is to learn to become self-reliant. By the time  Jillian was a senior, she was taking four Metro buses to and from NKU every day. She works there now, full time. And she and Ryan have been married since last June. College helped each of them become a productive citizen of the world.

Don’t ever let anyone tell you what your child can and can’t do.

The sky’s the limit.

Thanks for reading.

Expect, don’t accept.

Paul

 

jillian and ryan grad

A speech in PA: Who has the syndrome?

Hi, again. Sorry so long away. I’ve started a new book, I’m promoting this one and, oh, yeah, I have a real job.

I was in Allentown, PA, this weekend, presenting for the Eastern Pa. Down Syndrome Center. The subject:

Who has the syndrome?

Jillian Daugherty Mavriplis, my daughter, is the nicest person I know.She embodies all that I look for in a good human being. She’s loving, empathetic, loyal, honest and selfless. Jillian is who the rest of us need to be.

The great thing is, Jillian isn’t unique. I’m betting that anyone reading this can apply the same descriptives to their children, friends and relatives born with Down syndrome. Nice people, yeah?

Another thing: Jillian always sees people. She never looks at them.

“Typical” people look. Maybe they don’t mean it, or even realize it. These are people who are nervous around our kids, who unwittingly drop the occasional R word. Or much worse, make assumptions about the person they’re looking at.

They’re not bad people, or mean people. They’re people who haven’t discovered the necessary magic of Seeing.Think of the human potential we’ve wasted for 400 years in this country, because we have looked at people and not seen them.

How do we eliminate the syndrome of typical people?

Educate them on the benefits of Seeing. The world becomes more diverse every day. Those who can embrace diversity and tolerance are the ones who will get ahead in life. It is the future. It is, in fact, the present.

Jillian passes no judgment, lives with no guile. Her agendas are transparent and loving. She will do well in this new world of ours. And we say she’s the one with the syndrome.

Expect. Don’t Accept.

Thanks for reading.

Paul

BTW: My wife is re-designing the website, to include our Events calendar. Future national events where we will be speaking:

* The Williams Syndrome national conference, in Columbus, OH, July 5

* The NDSC Convention in Orlando, July 23

* The ARC of North Carolina, Raleigh, Sept. 8

If you’d like for us to speak at your conference or before your group, contact us via our website, uncomplicated.life, or e-mail me at pdoc53@gmail.com.

 

epdsc foto

Spreading our joy, one basket at a time

carissa carroll

A WORD FROM JILLIAN’S MOM:

 

There is a right way and a not so right way. Parents getting the news that their newborn has Down syndrome doesn’t have to be a negative experience. The first words these parents hear should not be a form of “I’m sorry” or “I have some bad news”.

That is how I feel about it and how Carissa Carroll feels too. Fortunately, Carissa not only feels that way, but is doing something about it. When her son, Jack, was born, Carissa had one of those not so right ways of being told of her son’s diagnosis of Down syndrome. She felt she wasn’t given the chance to celebrate her baby’s arrival in a positive way.

Instead, like many of us, she was immediately hit with a list of negative possible outcomes. “He might never speak. He might never live independently, or work at a meaningful job.”

Where was the “Congratulations on your beautiful baby! What a wonderful life you are beginning! He looks just like Grandma Sue?”

Carissa wanted all new parents who have given birth to their beautiful baby who happens to have Down syndrome, to be reassured that every birth is a blessing. Every new child in the world is born with unique possibilities.

In honor of her son’s wonderful life, Carissa has started in the Twin Cities of Minnesota something called Jack’s Baskets. It is a free welcoming basket for parent’s of newborns diagnosed with Down syndrome. It is packed full of gifts for the baby and the mother to celebrate new life. It also contains useful and positive information on DS to help the new parents at various stages of their adventure.

She has decided to include Paul’s book, An Uncomplicated Life, in all baskets because of the positive message it provides. We are so happy she wants parents to read our story of raising a child with DS.

Paul has written an honest, heartfelt, and positive account of our life with JIllian. I hope that the new parents receiving this basket with our book will find encouragement, familiarity and renewed assurances that their child is special only in the fact that he/she is their child. Carissa would like other towns to celebrated new life with their own Jack’s Baskets group. If anyone wants to order a basket for new parents or if you want to start organizing a group in your area, just go to her website, jacksbasket.org and see what you can do. Take time to celebrate your newborn’s arrival. I wish for you a positive experience that will lead to positive outcomes.

Thanks for reading.

Expect. Don’t Accept.

A message to the world on our Day

Here is a piece I wrote today for The Mighty… mighty.com:

http://themighty.com/2016/03/why-im-celebrating-the-little-moments-on-this-big-day-for-down-syndrome/

And here’s the text:

 It has been suggested that we not sweat the small stuff. It is not good advice. Life is the small stuff. Especially for our kids born with Down syndrome. The first tentative turn of the pedal on the two-wheeled bike. Spelling correctly the first of the eight words on the third-grade list. Watching Jillian Daugherty emerge from the dressing room, auditioning the first potential wedding gown.

   Sweat the small stuff, folks. Cry about it, laugh with it, linger on its simple wonder. Love it for everything it holds. The big moments are icing, compared with all the little triumphs that enable them.

   Today is World Down Syndrome Day. It’s a big moment. An instant for us to brag and to celebrate the special miracle of our children. We are a lucky bunch, privileged to witness the love, empathy and perspective that our kids offer up every day, without even trying. Of course they’re special.     

   But it’s fleeting. Today people will pause, however briefly, to acknowledge a segment of the population too often overlooked. Then they will get on with their days.         

Every day should be Down Syndrome Day. Every day, people with Down

syndrome should be respected. Their voices should be heard, their little wins validated, their challenges recognized. If you want to give them a day, give them a job. Give them your time and honest attention. See them, don’t look at them.         

   Make it so a Day is no longer necessary.     

   That would be quite a day.      

   Jillian Daugherty’s best moments have never been her biggest moments because by the time the big moments arrived, their appearance was assumed, their conclusion foregone. It wasn’t that they weren’t transcendent. To watch your child walk the aisles of graduation and marriage is to experience every hue in the human emotional rainbow. But by the time they occurred, we knew they would.

   Kerry and I cried proudly a million times, but not once on a graduation day or during a prom-dress fitting. We cried when a boy on Jillian’s soccer team, Ryan Mavriplis, asked her to the Homecoming dance. It happened at practice. We cried as we watched Jillian run across the field, shouting, “I have a date! I have a date!’’  

   I cried the morning my 6th-grade daughter informed me she no longer required my presence with her at the bus stop. (“I not your little girl anymore, Dad.’’) Not when that sixth-grader moved to her own apartment, eight years later.     

   On the spring day when 60-pound Jillian first climbed aboard the bicycle seat, I cried. I knew she was about to try something special, and her courage moved me. Two months later, as she pedaled down the lane and into a new world of adventures, I pumped my fist, tearless.       

   The achieving is wonderful. It doesn’t evoke the emotion that the trying does. Jillian’s fearlessness made me cry. Her guts provoked waterfalls.

   Tales of her everyday kindness got to me: Giving up her seat on the Metro bus, to an elderly woman, as both rode to work. Her unflagging ability to ask about everyone in our family:           

   “How’s your dad’s back? How are grandmother’s knees?’’

   Years after family members pass, Jillian remembers them: “I still miss my Uncle Pete.’’              

   The little triumphs of effort and diligence, kindness and empathy, got me every time. The big moments that resulted of all that collective Jillian-ness? Well, they impressed me and made me proud. But they didn’t have me blowing my nose.      

   What does this have to do with World Down Syndrome Day? If you’re like me, you think every day should be World Down Syndrome Day. And you wish everyone else felt the same way. Celebrate Down syndrome by embracing it. The little moments are always the best.           

Happy Day!

Thanks for reading,

FullSizeRenderPaul

Expect, Don’t Accept.

 

 

 

Every day should be World Down Syndrome Day.

An Uncomplicated Life: Early education is vital

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Jillian and I en route to Minneapolis, where we spoke at the Gigi’s Playhouse Gala
We’ve developed a virtual/social media friendship with a soon-to-be-father of a child with Down syndrome. Mike and his wife are doing well getting things rolling. Here’s a question he had, and my wife Kerry’s answer:
I actually have a meeting with the Chief of Staff for our local public school system next week, and I want to be sure I go in prepared to ask thoughtful questions about how they handle Special Education, integration, placement, etc. etc. I’ve spoken to other parents, but with children with other types of disabilities (i.e. autism) so I didn’t want to presume each “need” was the same. 
Any pointers on what to generally try and get a better handle on, so I make the best use of our time together? 
Kerry: First of all. I applaud you for being prepared.  Knowledge is so empowering.  You are so right when you say that other children’s needs are not going to be the same as yours.  I always made sure to refer to the IEP, where the I stands for individual . Each student is an individual.
On the other hand, it is obviously too early to know your child’s specific needs. Your questions will have to be more general at this meeting.  You will want to know what services they provide for Early Intervention. What age will these services start?  See if they have an inclusive preschool available and ask to observe it at some point.

You could ask about their philosophy on special education and how they implement inclusion in their classrooms.  However, I would suggest you not get too bogged down with the details of school-age issues.  You really don’t know what your child will need in school yet.  Plus, things are always changing with inclusion and schools.  What you observe today might be greatly improved in 5 years when your daughter starts school.

At this point, you need to know what they offer for Early Intervention, speech, OT or PT.  Ask them to tell you what they will need in order to be prepared for your child’s attendance.
Good luck.
Kerry Daugherty
**
My thanks to Ohio Public Images, a state organization devoted to promoting positive images of people with developmental disabilities. They gave me an award for An Uncomplicated Life. I was proud and grateful, and I told them what I say here, with every post:
1. Expect Don’t Accept.
2. See, Don’t Look.
3. Live in the Moment.
4. We’re only as good as the way we treat each other.
Thanks as always, Paul

A Gala at Gigi’s and a story from. . . the United Arab Emirates?

 

This is a story that appeared in The Khaleej Times, an English-language newspaper, last week, in the United Arab Emirates.

Over the weekend, Jillian and I were honored to speak at the Gigi’s Playhouse I Have a Voice Gala in Minneapolis. The Playhouse has over 20 locations in the US and one in Mexico, devoted exclusively to serving the academic and social needs of kids born with Down syndrome. Some 550 people attended, close to $100,000 was raised. Everyone loved the weekend,  no one more than Jillian, who rode every ride in the amusement park in the middle of the Mall of America. You read that right. Next time I go to an amusement park, I’m expecting a Cheesecake Factory and six different places to buy gym shoes.

Every place we speak, I am struck by one, eternal truth: Parents of newborns and small children want to hear about hope.The medical profession remains fixed on clinical and medical issues, while all but ignoring the human issues. Parents don’t want to be bluntly told all the things their children likely won’t do, especially immediately after what should be one of life’s greatest joys. More bedside manner, please.

Telling Jillian’s story never gets old, because hoping never does. Potential needn’t be burdened with warning labels. It needs to be nurtured. We’re grateful so many people have found a little of that in the pages of An Uncomplicated :Life.

Expect. Don’t accept.

Paul

PS… If your group or association is interested in having Jillian and me attend one of your functions, please contact my representative at American Program Bureau Inc.: pkreiter@apbspeakers.com

Or feel free to e-mail me at pdoc53@gmail.com

Keep up with Jillian here or on my FB page, pauldaughertywriter