Wednesday, July 3, 2013

July 4th, Reflecting on the Declaration and the Rights of People with Special Needs

I wrote this post back in 2010 and want to repeat it for this 4th of July!!

Have you ever taken the time to actually read "The Declaration of Independence"?? If you are reading my blog you already know my history and I you read this excerpt you may be able to think about it in a different context. I know I did!

IN CONGRESS, JULY 4, 1776The unanimous Declaration of the thirteen united States of America. When in the Course of human events it becomes necessary for one people to dissolve the political bands which have connected them with another and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. — That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, — That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn that mankind are more disposed to suffer, while evils are sufferable than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses andusurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.

Hhhmmmm, why when I was reading this did I keep thinking of my son Sam???

In many ways I wondered how Sam would feel reading this?

Would he feel it pertained to him?

Would he feel his rights are protected?

Would he feel that he was created equal and his right to life, liberty and the pursuit of happiness is valued?

If we start with the simple concept of his right to life...we already run into a problem. Children with Down syndrome have an astonishing abortion rate of over 90% upon prenatal diagnosis. Our pharmaceutical companies and many medical professionals would like to raise that rate to 100%, eliminating all people with Down syndrome. Doesn't that impede on their rights or does the declaration only refer to certain individuals, do our children fall under the category of light and transient causes? I think not!

It isn't just the abortion rate, what about the fight parents took up to bring their children with Down syndrome home instead of institutionalizing them, how about the parents that had to fight to have their child receive heart surgery which would allow them life. Let's not forget about the countless parents that have had to fight for other medical interventions always fighting the idea that our children are deserving of these interventions. The idea that it's okay if our children die or it they don't receive a treatment because their quality of life is questionable would be unthinkable/unfathomable if the same was presented to a parent of a typical child. Did they not read...that all are created equal and that they are endowed by their Creator with certain unalienable rights??? I teach Sam each day that his Creator created him exactly the way he wanted him to be. Today our children receive heart surgeries, they receive treatment for cancer, they receive interventions and yet at the same time the medical community that prides themselves on changing and meeting our children's needs are still working on better prenatal tests to help eliminate our kids. Where do we draw the line?? If a family has a genetic factor such as cancer or diabetes, do we eliminate their children? They may require additional healthcare, why take the chance??? Many children born with Down syndrome do not have significant health issues but that doesn't seem to matter because there are other issues.

Our children learn differently. This one just sets me right over the edge. As a parent of 3 children, all 3 of my children learn differently. I won't even get started on the disservice we are doing to our children that are Dyslexic or labeled LD. In my mind, my experience, my journey with my own child these are some of the most innovative children you will meet. It would benefit and change our world to teach these children in the way they learn best and help them pursue their passions and interests. Sam amazes me each day with what he learns and how he teaches me how to best work with him. My challenge is figuring out how to teach him not what he can or can't learn.

So...getting off my soap box, for a little while. There is another part of the declaration I want to draw your attention to. That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.

I want to change one word above when thinking about our children. Right of the People, in my mind should be changed to Right of the Parents. In all of the examples above and really in all areas of our children's lives, parent's have and will make the difference, parent's have and will cause change to happen, parent's have and will raise the expectations. Parent's have the power to make change happen. Is it a "walk in the park"...not even close. Parenting any child is work, parenting a child with special needs is a career.

But please know how important you are!!! Take time this 4th of July to think about your child's current situation, what is working and what isn't and as you watch the fireworks may they spark your imagination...your feeling of empowerment...your pursuit to make the changes that need to happen. Each of our challenges are different, some may be medical challenges, others educational and still others social/family, home and life. In some cases, especially for our children with special needs we need not look any further than the mirror to see who is holding back our child from reaching their full potential. I have had to reference my own mirror at times!

I didn't write this post to demonstrate the injustice done to our children, I wrote this post to empower even one parent to understand the power which is within them. Let go of the stress and anxiety that surrounds our parenting situations, let go of the negative thoughts and feelings that do nothing to help your child. Try new things, dream new dreams...fight with purpose, raise your expectations of your child and those that work with them. This year make your own declaration, to change, to grow, to work on, to achieve, to love more, to laugh more, to live fully. As each firework goes up into the sky, label it with whatever is holding you back, whatever is giving you stress and watch it dissolve into thin air. Let it go and tomorrow post on your mirror, two things that you can do to start making a positive change in your life and the life of your child. Each morning as you get up and start a new day, review those goals and make them happen!!! Happy 4th of July to all of you!

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