Spread The Word - TODAY

It is time to “Spread the Word to End the Word” and today. March 31, 2009 Special Olympics is calling for a national day of awareness for America to stop and think about their use of the R-word. That R-word is not “recession,” but something more hurtful and painful – “retard.”

Check out their website for more information, and then pledge your support at www.r-word.org.

Need more encouragement...

What The Heck Is Going On?

I have run across two news articles in the last week that concern me greatly. The first article tells how fewer than 10 percent of Blind Americans can read Braille. The second article, a student’s personal story, appeared in the Columbia University Spectator. The student labels himself as one of a very few Deaf students at the university who sign.

What is going on here? I fight every single day to have Ashley educated in both Braille and sign, and yet adults are rejecting both those things. I don’t get it…

Love, Mama

My beautiful Ashley is now 14 years old! I didn't give birth to you, but I feel as if we always were meant to be together. I cannot imagine my life without you in it.

Happy birthday my special love!

The Gimp Project

The Gimp Project examines movement of dancers with disabilities.

Dancers with disabilities take the stage in a performance art piece entitled the Gimp Project at the Abrons Arts Center in New York. Staged by the Heidi Latsky Dance Company, the show offers a different look at disability, as the performers find beauty in imperfection and demonstrate inventive ways of working around mobility issues. (Video by Lisa Rose / The Star-Ledger)

March 26th - Purple Day

Ashley has Epilepsy. She has 2-3 seizures on a good day and 4-6 on a bad day. Currently, her seizures are not horrible, but they still are a major disruption to her life. People who don't know her well, and that includes a majority of the people in her school, are frightened or dismayed by her seizures. The same was true for Cassidy Megan, a young girl from Canada. But on March 26th of last year, Cassidy began to change the world and educate people about Epilepsy.

Motivated by her own struggles with epilepsy, Cassidy Megan founded Purple Day in 2008 to increase awareness about her disorder. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone.

Cassidy’s efforts began in her hometown in Nova Scotia, where she taught classmates and peers not to fear seizures, and explained to them that for the most part, people with epilepsy lead normal, healthy lives.

With the help of her mom, Cassidy began contacting politicians, celebrities, non-profits and corporations, asking them to spread the word about Purple Day and epilepsy. The response was outstanding. People from around the world joined the campaign, helping make Purple Day 2008 a great success.

But Purple Day didn't stop in 2008. The cause if growing with the help of politicians, David Letterman, and Epilepsy organizations around the world.

So find something purple to wear today, visit the Purple Day website for more information, and help spread the word - people with Epilepsy are people first.

Special Exposure Wednesday

When you can't hear, you have to look really, really close to learn how to say 'SNOW'!



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Someone To Watch Over Me - Follow Up Part Two

Today I am continuing my followup to my post about guardianship issues for my 18 year old daughter, Jessica. My original post is here, and Part One of the follow up appears in yesterday's post.

Question 3 - What if I had concerns regarding Jessica's care in her group home? Would I be able to intervene with a guardianship? What if I knew her caregivers were trying to cover up something? Legally could I do anything to help Jessica?

Whether you are the guardian or not, anyone can file a report of suspected abuse or neglect. Your rights as a guardian are no different in that respect from anyone else. I don't see that guardianship helps in this situation at all. A person does not decide NOT to abuse someone because she has a guardian.

Question 4 - What are my other options? Would my child have to be legally competent to sign a medical directive? Could she also revoke it should the mood strike her?

For one thing, an advance directive is not an issue for a child because everyone under the age of 18 is considered to lack capacity. I think the competency level to agree to and sign one is fairly low. I have met with individuals who are basically non-verbal, but I had no doubt that they understood the concept and I had no problem drafting an advance directive for them.

As for revoking an advance directive, yes, the person can revoke it. That's one of the beauties of the concept because it is easy to write, easy to use and easy to change. You can do all those things without the involvement of attorney or courts.

This is an argument that is used quite often against advance directives, but I have rarely seen it play out in real life. The only time I've heard of it causing a problem is with a person with long term mental illness whose capacity yo-yos.

Question 5 - I've protected my child ever since I adopted her. Sometimes it seems like she needs the protection still, if not more.

I live in the real world and I want everyone to have the same opportunities and the same experiences as I do. I understand that some people need extra care and attention. I am not against guardianship in some cases, but if we can protect the person while still maintaining the civil rights, then why not?

The reality is that guardianship is always an option but maybe shouldn't be our first option. If you choose an alternative now, and decide later that your daughter needs guardianship, what have you lost? If you choose guardianship now, there is very little chance you can go back and change that decision because you would have to go back to court and prove that your daughter has regained capacity - very hard to prove when the individual has life-long cognitive disabilities.

I'm glad a lot of people have trouble with the idea of guardianship because it is a last resort and should be considered only in those situations where an alternative is not feasible, especially for a young person just starting their adult life. Even in a situation where it is needed, we should still pause because we are taking away that person's civil rights. When a guardian is appointed, the person loses the right to vote - to choose where they live and work - to get married or divorced - to have a driver's license - to make medical decisions including such personal decisions as sterilization, abortion, major surgery and do-not-resusitate orders - to enter contracts to rent, buy or lease property, and to write a will or advance directive.

Even if all those rights do not apply (even if none of these rights apply) to the individual, just the sheer loss of basic civil rights that these examples portray should give us pause when we consider petitioning for guardianship.

I hope you all have found this information as valuable as I have. And again, if you are considering any legal action involving your adult child with a disability, I urge you to contact an attorney or you state's protection and advocacy organization.