An Uncomplicated Life: Suggestions for the new year

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I do a bit of writing for The Mighty, an inspirational website for all who face challenges, physical and intellectual, and for those who love them. It’s a remarkable site, full of remarkable stories. If you’ve never visited themighty.com, I recommend it highly. Here is my Author Page on the site:

http://themighty.com/author/paul-daugherty/

Whenever I’m asked for my advice on raising a child with a disability, I end with this:

It only gets better. I promise.

And it does.

Jillian and Ryan are happily married since June, living without outside help in a two-bedroom townhouse. They go to work, pay bills, prepare meals, have Date Night. They live the same as the rest of us.

They aren’t special. At least no more than any of our kids are special. They’ve been given opportunity, and they have run with it.

The biggest thing we four parents have done for Jillian and Ryan is to allow them to define themselves. This isn’t remarkable, or shouldn’t be. It’s what we do for all our children.

Happy New Year, everyone. Thank you for reading.

An Uncomplicated Life: What I tell parents of newborns

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Over the years, I’ve been asked numerous times by friends and acquaintances to speak to a couple recently blessed with a child born with Down syndrome. Almost all parents who receive the news are devastated at first. Scared, then angry, then sad, then scared again.

Nothing I can say can soothe the early grief. It is the most personal,. most beautiful experience a couple can have. They feel cheated. An essential life experience has been stolen from them, and I cannot presume my words will mean much at all.

Everyone is different. Trying to tell new parents “this is how it is” is a fool’s errand. I don’t even try. What I do say, every time is, “This is how it is for us.”

I wrote An Uncomplicated Life because I wanted new parents to see something positive. When Jillian was born, all Kerry and I wanted was for someone to tell us everything would be OK. Instead, we got loads of pamphlets telling us all the things Jillian would not do. We threw them in the trash. We would allow Jillian to define herself.

This book tells you that we are OK. This is what I tell new parents: Your child will teach you more than you teach him or her, and everything you learn is essential stuff: Patience, kindness, the need to live in the moment. That unconditional love owns a special place in the lives of people with Down syndrome, and all who choose to embrace them.

I tell new parents you will have a child who will live without agendas or guile, who passes no judgment. A child who gets the big stuff right, all the time.

My mother has called Jillian “the best Christian I know.” Not because we are an especially religious family. We aren’t. But because Jillian embodies lots of qualities that would make God proud.

Who wouldn’t want to have a child like that?

I tell new parents their new child will give them gifts of perspective and tolerance. I tell them their child will force them to slow down, and because of that, blessings actually will be counted. I tell them that anything is possible when love is involved.

I don’t kid them. I tell them it’s hard work. Early intervention will run them ragged. IEPs will test every inch of their patience. Homework will leave them wondering, “What’s the use?” Sadness will happen, as their child grows and typical friends drift away.

But here’s thing: Raising any child is hard. Raising Jillian was just a different kind of hard. But oh, the rewards.

I tell new parents they will marvel at the little wins. The human spirit is a marvelous thing, a soul engine capable of just about anything. Wait until your child ties his shoes for the first time, or rides a two-wheeled bike or graduates high school. Those heart-soars are unlike anything else.

So many of life’s great moments are assumed, lost to the speed at which we live. We parents of children born with Down syndrome learn not to assume, but to savor. What a gift.

John Lennon once said, “Life is what happens when we’re busy making other plans.” Not with us. Thanks to our kids, we live more realized lives.

That’s what I tell parents.

We’re only as good as the way we treat each other. Jillian taught me that. She’s the best person I know. She was born with Down syndrome. How lucky we were then, even if we didn’t know it. Jillian is 26 now, married, fully employed, a high school graduate who attended four years of college.

Could we have imagined that the day she was born? Not that first day, no. But every day thereafter. This is what you have to look forward to, parents. I promise you.

Happy holidays to everyone. Thanks for reading.

 

 

An Uncomplicated Life: Some holiday cheer

all iPhone fotos 673Here are a few recent reviews of An Uncomplicated life, available at bookstores and on Amazon.
on December 9, 2015:
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Someone once said, “While we try to teach our children all about life, our children teach us what life is all about,” and truer words could have not been spoken about this memoir. It is an exceptionally well written book that captures the raw emotion of a father (and his entire family) raising a child with special needs. It is an insightful look into their challenges and triumphs, and was thought-provoking, heartwarming and inspirational. Thank you, Paul, for sharing with the world how exceptional an uncomplicated life can be.
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on December 3, 2015
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A truly told story about a beautiful human being! Daugherty’s way with words will have you on an emotional roller coaster feeling as if you’re right there every step of the way. And to beat all…a happy ending! One GREAT experience!
**
on November 6, 2015

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Incredibly inspiring book! Heart touching, thought provoking, eye opening, and absolutely amazing. I highly recommend this.
 
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on November 22, 2015
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A wonderful thought-provoking perspective. Heart-warming and inspirational. It captivates you right from the beginning. What a beautiful story about a happy family.

An Uncomplicated Life: Born This Way

Did you see the first episode? What did you think?

I was delighted that any network would make a show about young adults with Down syndrome. A&E did it, and if the first show is any indication, did it well.

This is a reality show in the truest sense. The joys and fears these young adults own are no different. Their aspirations are typical. Which, of course, is the point. What’s different is, they don’t seem to harbor agendas or deal in guile or jealousy. They’re real people. Nice people. Whom you see is whom you get. Fantastic.

I was blown away by the  collective self awareness of the group, and by their abilities to express themselves. These are all high-functioning people, sure. That doesn’t diminish their insights. Megan, recently moved from Denver to Los Angeles, wants to be a movie producer. At one point, she and her mother sit on the beach and discuss Megan’s future. Mom is divorced and apparently has raised Megan by herself. On the beach, Megan makes it clear, in a sensitive way, that it is time for her to make her own way. It was a remarkably mature, adult conversation and reminded me of the talks Kerry and I had with Jillian.

The other young people on the show are similarly blessed and insightful.

The best thing about Born This Way is simply that it’s on the air. Familiarity eases fear. These people are sensitive, smart and funny. Same as most of our kids with disabilities.

This is a national opportunity for folks to See our kids, rather than simply Look at them. Those who take the time to watch will have their eyes opened.image

Getting The News (another word from Kerry)

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I spoke this morning with a neonatologist who is interested in developing a plan of action for counseling expectant parents who have been given a diagnosis of Down Syndrome through early testing. She was explaining how early medical intervention could possibly reduce the number of babies with DS who require neonatal care. Some medical conditions associated with DS can be treated in utero.
The first stumbling block is getting expectant parents to submit to the early testing. Many couples refuse the testing because they see it only as a test for deciding whether or not to terminate. That is not the only reason to get early testing. If a parent is given a diagnosis of Down Syndrome and elects to continue with the pregnancy, they will have the opportunity to
complete some medical checks, become informed about DS and the importance of Early Intervention, as well as network with other families already raising a child with Down Syndrome. All before their baby is born!
Paul and I were given an envelope of information on Down Syndrome the day Jillian was born. It was mostly a list of low expectations for people with Down Syndrome. One article said that “some children with DS are able to attend a regular school”. And that “some children with
DS can learn to live independently or in a group home”. We didn’t want to read information that was geared toward such low expectations.
The doctor I was meeting with this morning was interested in getting a positive, hopeful message to prospective parents. Something they could read in anticipation of the arrival of their beautiful baby who happens to have Down Syndrome. Paul’s book is being considered to be included in that information.

An Uncomplicated Life is an honest, loving, hopeful look at raising a child with Down Syndrome. Our hope is that our story can bring hope and joy and normalcy to their future of raising a child with Down Syndrome. We want them to discover, as we did, that all children are unique and special. Your child with have all the family traits of your other children as well as a few traits that make them unique. And it has nothing to do with having
Down Syndrome.
Fear of the unknown can be very scary. So, if you have early testing that results in a diagnosis of Down Syndrome, or if you are surprised in the delivery room as we were, learn as much as you can handle at that
moment. Don’t overwhelm yourself by trying to know it all in an instant. Combine taking time to learn about Down Syndrome with taking time to get to know your child. Knowledge is power! Learn and grow
with your child.