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.

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An Uncomplicated Life: Early education is vital

FullSizeRender
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
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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