Our lives became a little [EXTRA] special on February 15, 2011 in a way we never expected.

This is about our journey and the [EXTRA]ordinary people we meet along the way.

Tuesday, April 30, 2013


Do you practice Ableism?
What the heck is that, you might ask? Ableism is discrimination against people who are disabled, according to the dictionary.
A woman (who I only know "virtually") in one of my writing circles recently wrote an article for the New York Times blog, Motherlode, regarding abortion rights for women. Specifically she wrote about the fact that “North Dakota has become the first state to outlaw abortion for fetal conditions like Down syndrome.” (Citiation and full article HERE)
In the close of the article, she talks about how we should “make it a world [that expectant parents] would like to bring a child into — even a child with an intellectual disability.”

She closed with this because people she had interviewed parents didn't abort necessarily because of the child with a disability, but rather how society deals with individuals who are different. They did not want to raise a child like that in this kind of world. 

A world that often expects everyone to be able.

I do see the author's point about making it a world in which people want to bring children. I wish that I would never worry about people making fun of or judging Wyatt. I wish I didn't worry about people treating him like he is stupid or infantile well into adulthood. 

So, where does the Ableist perspective take us as a society? On a road to nowhere land, IMHO.

First, to be clear: I am not making this an abortion issue. I am making this a human issue.

I believe that the world is full of amazing people. But, some people are not so nice and some have done unexplainablly horrific things - to people with and without disabilities.

But to think that someone is so fearful of how a society will possibly treat a genetically different - disabled - UNBORN child that they end that child's life before it has even begun??

This is a sad, sad thought.

I wish things would change for the better. I wish Ableists were not in existence as much as I wish racism would be extinct.

I know things won't ever be perfect because we are mankind, not God. I know that there will always be people who do bad things (edited on 5/1 from a reader suggestion). But I also know we can do better. Not just for people who are different, but how we simply treat others as humans.

To change this societal norm requires a paradigm shift in societial and cultural expectations. It requires a change in the idealisms of Ableism. To say that people have value simply because they exist...well don't you think that would change the way we view one another?

This is something even the US Government Department of Labor within the Office of Disability Employment Policy is attempting to start doing in employment, as well as Ohio Governor Kasich (love him or hate him) is trying to do through the Ohio Department of Education and the Ohio Employment First Initiative. (Please check out the website and the vision they have HERE!)

But I digress…back to Ableism. The comments section of the article on the NYT blog was horrific at times. People were talking about the human worth of individuals with disabilities not yet born, like it can be quantified through possible unknown outcomes, of which most of us, even "typical" people, have no control over. People were talking about aborting their babies, not because they were fearful of the child, but how they could be cared for by family or society after they - themselves - were gone. Or they discussed the burden it would place on society financially or on remaining siblings. Wow. Some even responded about how it was an atrocity that parents of a child with a disability would take county, state or federal funding to assist with extra costs. (Um, hello...unless you send you kids to your own private homeschool...your kids education has some sort of government funding, even if it is "private.")

Others even insinuated, basically, how we should just magically *POOF* all be perfectly ABLE. And if we are not...well then we shouldn't exist.


The problem is, though, that NONE of us are perfectly able. And statistically, ALL of us will, at one point or another in our lives, will become DIS-Abled. Whether it be illness, age, injury…we will all need the assistance from medical staff, family or friends at some point in our lives.

How many of you have a grandparent or parent who has financially, fully covered all possible medical scenarios from now until death?

I’m guessing I’m hearing crickets.


Or how many of you are going to take in aging parents into your home and care for them until death? Most of us will require some sort of support either through a government program, insurance or Hospice. I don’t think that there are many people ON THIS PLANET that can personally financially cover ever single medical expense from birth until death.

Unless you’re Donald Trump or have a multi-million dollar trust, it is likely that you will need insurance, Medicare or Medicaid, Social Security (if it's still around later), employer-assisted retirement accounts, pensions or some other type of program to help you at some point in your life. 

The point here is that Ableism is not a positive perspective. We cannot count the worth of individuals by their chromosomes or any other facet. The point is that no one knows the worth or value of another human being, or can quantify that through a checklist of accomplishments, abilities and societal contributions. 

I hope that people do not base Wyatt's life value on societal idealisms. I hope they don't do that to me, or to my daughter, Eden, or my husband, or....the list goes on and on. 

There is little progress to be made by engineering the fittest of the fittest. Or the Ableist of the Able. 

So how do we change this? Please find value in all humans. Please realize that you have strengths and weaknesses that others do or do not. Please know that we are all ABLE to do something incredibly well, no matter our challenges. And know that life isn't measured by what you are sometimes ABLE to do, but how you are treating others and how you are being the best person you can be to your own individual ABILITY. 

Above all...I believe we ALL are valued in the eyes of God, equally. And at the end of the day, that is all that really matters. 

Peace, love and joy...

Friday, April 19, 2013

April [EXTRA]ordinary Mom of the Month: Meet Kathy!

At first, I only knew Kathy virtually. We were aware of each other, but didn't really know each other. When a friend of mine from college had a child going through cancer treatment, I put a Facebook call out to provide meals for their family while they were in treatment at Cincinnati Children's Hospital. Kathy responded with a fervor. Not only did she provide meals for Izzy's family, but she had her kids make cards, and she bought Izzy a birthday gift, and she used her connections to help me give the family over 35 days of meals. What I found was that not only was Kathy smart, but she is selfless, giving, driven and focused in a way that you automatically know you want her as an ally and friend. I look forward to getting to know her more, and I hope you do too!

Children (and tell us a little about each because who doesn’t like talking about their kids?!?!):
We have three kids:  Maddy, who turns 9 in May, Drew, age 6, and Will, who turns 5 in one week. Maddy is a great big sister, very protective and patient (mostly, anyway.) She loves to read, draw and paint, and play outside with friends. Will is very tall and very sweet. He is my hugger. Will loves Legos, cars and trucks, his family and his dog.  Drew is our force of nature, our little bulldozer [T21]. He's in kindergarten now and has had a great year, despite some major health challenges. He has a devilish sense of humor and I love that his speech is now good enough that he gets to be funny in that way, too!

Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)?
I have my own media relations company. I started it just after Drew was born, when it became clear that my long, erratic days in the newsroom were over. (I was executive producer at WLWT at the time.) I also volunteer with the DSAGC and St. Rita School for the Deaf, mostly helping with media campaigns.

How many years have you been involved with the Eastside or Extraordinary Friends Mom’s group? Good question! I haven't been able to attend nearly as many events as I would have liked. I work days, David works nights and we have three children, which makes it challenging. But I do remember taking a little Drew to some early playgroup meetings, including one at Missy Skavlem's house. And I've had the pleasure of meeting some of you individually at things.

Why you like being a part of this group?
We all "get it".  This diagnosis does mean certain commonalities for some of us, and it's been such a relief being able to connect with people who've been through things that we're going through, who have great medical advice or therapy referrals, etc. I never feel isolated.

Best advice for new parents of a child with T21:
Get in touch with your local Down Syndrome Association!  My parent mentor (Rosie Abel) was such a huge help in those early weeks after Drew was born, and the DSAGC has been a huge help in so many ways ever since.

Greatest joy in having a child with T21:
Having Drew and feeling a connection to other people with developmental disabilities has really opened up my worldview, and helped me to see the beauty and dignity in so many ways of living and working. I had such a narrow perspective before. He's made me a better person, more patient and loving, because that's what he needs me to be. I feel the weight of that, but am also profoundly grateful for it.

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?
That trying to extrapolate every little thing into a glimpse of "what may be" is wasted energy. If you don't do that for your typical children, you probably shouldn't for your kid who has T21, either. And yet I catch myself doing it all the time; comparing Drew's milestones and achievements to those of other kids with this diagnosis, to try to glean how he's doing, if he's still on track, if he's following the same path that high-achieving kids with this diagnosis have followed. But from what I've heard and read, they all follow their own paths, anyway. And it's rarely a perfectly linear progression. Eventually that will make its way into my thick head and I'll stop fretting about it. But I'll never stop expecting Drew to do well. And I pity the fool (said in my best Mr. T voice) who tries to tell me that Drew WON'T go to college.

Favorite Therapy Trick/Tool:
Touch cues!! They really helped Drew develop certain sounds that were so hard for him.  The Kaufman protocol has also been huge for him.  The occasional glass of red wine has been therapeutic for me.

Random question: What's one of the craziest dreams you've ever had? 

When I was a kid, I had the same dream over and over again. A lion was living in my house. Just us, no parents. The lion could only walk on the carpeting, and I could only walk on the tile. Which gave me the bathroom and the kitchen, which was pretty sweet, but he got the bedrooms and the living room (and the TV, which was unfair). The whole dream was us running around and skidding, cartoon-style. I have no idea what it meant, but I do remember dashing through certain rooms during the daytime, just in case.

If you feel like it’s not too personal, can you share your diagnosis story?
We did the nuchal translucency testing when I was pregnant with Drew, and while the translucency itself was perfect, the bloodwork came up with a 1 in 76 chance that he had Down syndrome. We opted not to do an amnio, since we knew that a Ds diagnosis wouldn't change anything for us. But I did have a Level II u/s in my 20th week, and the high-risk OB who read it swore up and down that Drew did NOT have Ds. His measurements were perfect, his nasal bone and heart were fine, etc. But when I was in labor, about to head into the OR (it was a planned C-section), I just knew that my baby had Down syndrome. I am distinctly un-woowoo, so I can't explain the feeling, other than I just knew that he did. I asked a nurse to see if a neonatologist could come in, just to be safe. Sure enough, when Drew was born, they saw some soft markers of Ds. He also had pulmonary hypertension and was having difficulty breathing, so they rushed him off to the NICU. The next few days were a blur, as he struggled with the pulmonary hypertension. Then they told us he had a heart defect, and that they were worried it was a major one. The same morning that the team from cardiology was doing an echocardiogram on Drew, the karyotype results came in. But the neonatologist who delivered the news that Drew had T21 did it on the heels of the cardiologist, who told us that Drew's heart defect was, in fact, minor, and would likely close on its own (it did.) So when the neonatologist delivered the T21 diagnosis in very somber tones, David and I were so happy and relieved about his heart being okay that it didn't feel like a big blow.  The worry and fear came later, of course, and that's where our parent mentor and our wonderful families really helped. 
Thank you, so much Kathy for your spirit of servant-hood and your inspirational family!

What a handsome boy!

What a great looking family!

Sibling fun!