George Will Affirms Goodness of Life with Down Syndrome
Many of the parents who visit DifferentDream.com are raising young children. Maybe you’re one of them. A deep desire of my heart, as the parent of an adult child who had special needs when he was young, is to give you encouragement and a vision of life for your children when they become adults.
Meet George Will, Special Needs Dad
George Will is best known as a conservative political columnist. But he’s also the father of four children, and his oldest child, Jon, lives with Down Syndrome. About a year ago in one of his columns, George Will celebrated the life of Jon, who turned 40 on May 4, 2012. Will says this about the timing of his son’s birth:
Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down Syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.
Jon Will Is a Gift
George Will is proud of his son, and he wants parents to know he considers Jon a gift worthy of being born, as these words show:
Judging by Jon, the world would be improved by more people with Down Syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting, and greedy, and remain greedy. People with Down Syndrome must remain brave in order to navigate society’s complexities. They have no choice but to be trusting because, with limited understanding and limited abilities to communicate misunderstanding, they, like Blanche DuBois in “A Streetcar Named Desire,” always depend on the kindness of strangers. Judging by Jon’s experience, they almost always receive it.
Jon Will Lives a Good Life
Finally, George says two things have greatly enhanced his son’s life: the Washington subway system and the Washington Nationals baseball team. Jon’s dad says, “He navigates the subway expertly, riding it to the Nationals ballpark, where he enters the clubhouse a few hours before game time and does a chore or two…Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming to Jon, who is not.”
The article, which can be found in its entirety at Jon Will’s Gift, and it’s worth reading. You might want the tissue box nearby!
What Worries You About Your Child’s Future?
I hope Jon Will’s story is an encouragement to you. But I also know some of you are anxious for your children’s futures. Young parents, what worries you most as your child gets older? Older parents, what advice can you give them? Leave a comment if you’re in need of encouragement or have encouragement to give.
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By Jolene
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.
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Douglas,
You are so right about planning for the future for our kids with special needs. My book “Different Dream Parenting” dedicates a chapter to special needs financial planning, including trusts, letters of intent, and other important details. It’s never to early to start planning for your child’s future!
Jolene
My son was diagnosed with Autism over 20 years ago. The veil of understanding this strange and challenging condition has been lifted after so many years even as we are no closer to learning the cause(s) or breath of the spectrum. As a parent and now a professional serving special needs families, the real “veil” is not knowing the changing “services and resource” landscape we have to navigate throughout our lives with these special family members. It is most important to live that quality of life and experiences with them while we are alive and they rely on us for the majority of their lives to look after them.
That “end-point” planning and survivorship care is important. But never more important than from “here-to-there” (here being “today” to there being when we are no longer alive or able to give the care for them)… For me, I hope that’s another 30-40 years before I’m gone.
Your daughter sounds like a delightful woman. How wonderful that she is part of your life.
Kurc,
Thank you for sharing your parenting journey. Your son is blessed to have you as his father!
Jolene
Our son is now 24 years old, and it seems like yesterday that we started this shared journey of discovery. It’s one many might not wish for, yet I wouldn’t trade if for anything. Saying that having a son with Down syndrome has changed my life, can be looked at in more than one way, but truth be told, it has made me a better person than I thought I could be. Not just as a parent for my son, but I have become more involved in my community, both that of other parents of children with intellectual challenges and my community at large, for that is ultimately where we want are children to be welcomed. There have been challenges to inclusive acceptance over the years, yet those now seem minor and distant. We still have a distance to go, changes are continuing to be made, but we aren’t losing sight of the goal – to help our son find his gifts, his passions and live his life with full intent and engagement. My wife and I have always said our job is to open doors, the rest is up to our son. We have, and continue, to support, educate, encourage and cajole him to build on his skills, but always in areas that he loves. At the moment, that is in the area of photography, but the end destination – viewed now – might be thought of as a lofty asperation, but you have to shoot high, continually challenge your children to reach further and to not settle for status quo. Yet we”re mindful to not try to “put the round peg in the square hole” – that is have realistic goals, at least for the short term. Over time, we can round out the holes and make adjustments to the peg – because that’s the right thing to do… inclusion to us is where society appreciates and welcomes the individual as they are, and society alters/changes, rather than accomodating the person with the challege to participate as an observer. That is a true win/win scenario. Concerns? Friendships, meaningful intimate relationships, financial stability and community engagement. Something we will work on, now in a professional capacity, for years to come. I couldn’t have asked for a more fullfilling life – and I love him, just as he is, more than I thougth humanely possible, 24 short years ago.
My Downs daughter has been an amazing teacher for me. I’ve learned more from her than from any other person on earth. She is totally nice. She is never angry, is always positive, does any chore that I ask of her. She is now 46 and tells everyone she is 25. How’s that for being positive? Her brothers love her age because they are all very close in age, so they are young too. She now goes to “college” which is a program for people with special needs, and she enjoys it a lot. She navigates a bus system and has one change of buses on her way to and from school. I am truly blessed that she was given to me.