On the irony of a generation

If each of us (my daughter and I) were born one generation ago, I might have been cajoled into giving my daughter up to an institution for the better of society.  Just one generation later and I am being cajoled into giving her cookies after nap time…..a girl I couldn’t possible love any more has manipulated me once again.

I read comments on the internet of people speaking of the “economic value” of people with DS, as if economics were the means of valuing a person’s life.  In one generation,the commenters’ children may be saved from the ravages of Alzheimer or cancer because of research into DS.

Happy March people.  Take a breath and look around at the amazing pace of change around you.  Two years ago the iPad 1 was amazing, and today it is utterly obsolete.  Technology is not the only thing that is obsolete quickly in 2012, outdated attitudes are fading quickly.

I am thankful for the generations that came before and have made it so much easier for my family – thank you!  I am thankful that I get to do something so significant in my life as to attempt to make life easier for those that come after me and advance the civil rights of a group of people so deserving.  It is appropriate that the first UN sanctioned WDSD falls on a leap year – a year we celebrate a year that is not “typical”, but has a little something extra.  Please celebrate World Down Syndrome Day with me this month on March 21st.  It is a celebration of how far we have come in even the last generation, and it is a time ti take a breath before we watch the amazing change that will occur right before our eyes over the next generation.

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Dear Laurie –
Your recent article starts with the sentence “Another heartbreaking fact about Down syndrome is that children with this condition are increased risk of developing leukemia.”. As a father of a child with DS, I can tell you this is one of the most inaccurate sentences you could write about DS or people with DS.
Contrary to the common wisdom (misperception), most “heartbreak” over a child with DS only lasts for the first weeks and months as a new parent bonds with their child and comes to grips with the diagnosis and a shattered dream of some false perfection.
For well over 90% of us parents (as survey after survey after demographic study shows), we find it to be an amazingly unexpected positive experience in our lives. I am like most parents of a child with DS. I did not chose her because I am a bleeding heart, she was a surprise diagnosis at birth. I knew little but misinformation about DS or what to expect for her. And, she changed my life. She changed my priorities, she changed how I view the world, and she changed what I want out of life. And all of these changes have made an amazingly better me. I felt special for all of these changes she helped bestow upon me, but then I spoke to tons of other parents who had a similar experience.
A more accurate lead off would have been “In addition to all of the amazing joy and value people with DS bestow upon their families and loved ones, they now have something deeper to offer to society.” People with DS rarely ever get cancers with hard tumors, which helps us learn how to fight those cancers. On the other hand they get leukemia more often (though still quite rare) and this offers clues about these medical issues. People with DS will help us gain important insight into some of the most costly medical conditions of our time (Alzheimer’s, cancer, diabetes, heart attacks, etc.). We need to listen to the clues they offer and we need to respect them. I assure you they are not a story of broken marriages and heartbreak. They are more a story of tighter, more adjusted families, deeper understanding of what it means to be a part of the human family, and joy and triumph that many never are so lucky to experience.
We are at an inflection in history where this misinformation is being eroded. It is an honor to do my small part for it, after all I am one of the lucky ones who get some of those unique benefits.
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We Sold our our first shirt

Very excited to wake up today and see we sold our first shirt on Etsy.  Please check out our shop over there.  Its like the entrepreneur who hangs that first dollar on the wall, but we get to hang a positive message on someones shoulders.  We are working on another design for World Down Syndrome Day (WDSD) that hopfully will be out soon.  The idea is that we will use the shirts and other items to spread positive awareness and then donate a portion of the proceeds to national and local DS organizations to help promote positive awareness, advocacy, and opportunities for people with DS.

 

Please drop me a comment and let me know what you think.

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In Pursuit of Participation

With all stories of hypercompetitive parents yelling from the sidelines of soccer and baseball games, imagine me as a parent just pursuing participation.  At first blush it must sound like a sure sign of underachievement.  “That parent’s kid will never go to Harvard or be a Senator“ – so perhaps by that definition I am an underachiever.

 

“Pursuit” is a word embedded in the bedrock of American doctrine – the Declaration of Independence.  Without the ability to participate one cannot begin to pursue happiness – so it seems like a logical starting place.  Participation is the very first step in the pursuit of happiness.  Let me in the game coach.

 

Talking about participation rather than prosperity or winning is not the function of my low expectations, but rather seeking to create kinetic energy around the very first step in the process.  And it’s the vital step that distinguishes America from all of the dictatorial regimes that are experiencing such political instability today.

 

It is amazing how much more people with cognitive disabilities are able to participate in today compared with just thirty years ago.  And it has grown by leaps and bounds since my daughter was born in 2008.  The dreaded healthcare law, with all of its flaws and remaining issues, gives her a path to participate in private healthcare rather than depending on Medicaid – which in turn gives her a path to greater achievement and financial independence.  Not a month goes by without me reading an article about a new college program for adults with cognitive disabilities.

 

And with the budget cuts, it is so clear how fragile that participation is.  Brianna’s participation, from a policy perspective, generally requires exception processes – IDEA to open the door to mainstream classroom, a healthcare law to allow her equal access to health insurance, discrimination laws and special programs to help create job opportunities, and special college programs to allow her to partake in higher education.

 

Her needs far overshadow her political voice.  And so participation relies heavily on public perception and public decency.  It relies on each subsequent generation seeing her and other with cognitive disabilities as full human being – as being equally deserving of basic human dignity, respect, and treatment.  And in an environment where corporations and scientists see a goldmine in creating tests that help find people like Brianna in the womb as early and easily as possible – an environment where she is defined as a s “risk” to a pregnant mother – public perception can balance on a tight rope.

 

Brianna is a 3 year old, she is part of a group of just 400,000 Americans with DS, and she already has the unenviable job of educating all of us that she is important as well.  It’s an honor getting to walk down this road with her.  It’s an honor to take part in an important civil rights movement.  But, being part of a movement like this is like being on the slow train.  Everything takes so much longer than we would like and patience and persistence are required in the pursuit of participation.

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T-shirt Launch!

In honor of the 1st World Down syndrome day to be sanctioned by the UN, I have launched a clothing line to bring positive awareness to Down syndrome.  Please check out our 1st shirt:

http://www.etsy.com/listing/91923942/lifted-up-by-down-syndrome-shirt

 

Hopefully more to come soon 🙂  the plan would be to reinvest a % of the proceeds in local and national DS-related charities to help further the cause.  If you are looking to create your own shirts (for a buddy walk or whatever) please let me know, I can help.

 

Let me know what you think.

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Feeling lucky

When Brianna was born, there were a series of epiphanies that went off in my head, cascading like a row of firecrackers.  It was a very special and transformational period for me in my life.  I spent quite a bit of time reflecting on my values and attitude, and what was important to me now and in the future.

It was kind of befuddling when I started to meet other parents of children with DS and they described their experience with some of the exact words and phrases that ran through my head.  There was a connectedness in knowing my response was not a unique thought of Brad, but rather part of the fabric of the human experience.  It wasn’t my response at all, but rather our response, as humans, just funneled through me as one piece of us.  As crazy as that may sound, you come to such a conclusion when you have a thought that is so intimate and profound to you and then you hear parent after parent not only share your experience, but also articulate it in a way that you felt was unique to your lens as a human being.

Having Brianna also amplified feeling and thoughts I had before.  One of those feelings has been how tremendously lucky I have been.  I was born in the richest country in the world in a time of relative peace and prosperity.  I was born to caring middle-class parents who raised me and equipped me with the tools to provide for myself and family – with a good education and a solid work ethic among others.  I think of the dumb things I did in my youth with neither major injury nor criminal records to show for them.  When Julianne was pregnant with Bri, she discussed the chances of having a child with a disability, and I scoffed.  As if, I just happen to be lucky…not because I deserve it, but just because that is the theme of my life and I have developed a calloused confidence in its persistence.  And of course the most adverse of outcomes ended up being the luckiest thing to ever happen to me.

These feelings came bubbling to the surface this past holiday season when I read an article about a young mother in Ohio.  She was homeless with three children – one with Down syndrome – after a lifetime of abuse and neglect and one final swipe of indignity that left her without rent money.  I felt for her because for all the luck I had in my life, the article painted a picture of someone who was equally unlucky – likely through little or no fault of her own.

I found the address of the woman and children’s shelter and sent her a letter – telling her I admired the drive and positive attitude she displayed in the article.  I feel the DS community is a small community and we need to stick together if we want a better life for our children.  I also wrote her a check – something I have never done for a stranger on the other side of our country.  It wasn’t pity money; it was meant to help someone who I felt was showing some virtues in the face of adversity.  It was me sharing a little of the luck I have received in abundance to someone who perhaps did not get her share yet.  The article about Christine touched me, and so I felt compelled to equally touch her life.

Then, yesterday, I received a letter back from the charity, and attached was a note typed and signed by Christine.  She had some of the kindest words I had ever been given.  She told me I had changed her view on the world – that there were nice people.  I inspired some hope and happiness.  I was shocked by how appreciative she was.  I was touched….how much more I had received from Christine than I can explain.  Once again, how lucky I am!  Thank you Christine, I wish you well as you move forward.  Thank you Brianna for bringing me into this wonderful world!

 

 

 

 

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ABLE Act

Representative Gallegly  –

Thank you for agreeing to co-sponsor the ABLE Act.  It is hard for me to put into words what this law will mean to me! Since the first week Brianna was born, I have always wanted to save for her college education and give her every opportunity that I have had – that is the American dream. While I am realistic in knowing she will have to overcome challenges I never had, I intend on giving her all the tools to contribute to society to her full extent.


 

Beyond giving our family the financial tools, laws like these mean something much deeper. They mean the government is taking an official stance that people like Brianna should be included in society and that our representatives care about people like her and making sure she too is important and allowed to “count”. Having a child like Brianna is a wonderful blessing, but at times society can make us feel like outcasts and make it difficult. That can make families like ours feel isolated. But it is acts of thoughtfulness like this that do just the opposite – people care and that means the world to us!


Attached are some pics from the L.A. Buddy Walk (which raises positive awareness for DS). My wife’s business made us T-shirts to wear(“Lifted Up by Down Syndrome”) and we even met a couple actresses (both play the same character on FX’s American Horror Show – I haven’t seen the show yet, but hope to check it out soon). It was so amazing to meet so many wonderful people in our small community.

 

 

 

Thank you again for your help, and please let me know when Representative Gallegly makes a decision on whether to run for office again. I always vote!


Sincerely,

Brad Pitzele

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