thespecialparent.comSpecial People Parenting Special Kids

On March 29th I shared an article that was published in National Geographic Kids site. It was about this remarkable young woman Melissa who wrote about being a normal teen who happened to have an extra chromosome. I thought it was a remarkable testament not only to what a remarkable young woman she was – but to her parents as well. What I didn’t know at the time I shared it was that this beautiful soul was in the middle of a fight for her life.  A fight against leukemia which she lost on Monday morning.

Melissa Gaffney’s blog post from Monday was sent to me and I wanted to share this news with all of you who were no doubt touched by Melissa Riggio. The world is a better place for having her here if only for those short 20 years. Please visit Ms. Gaffney’s blog to see the entire post on her passing.

Today is World Down Syndrome Day. Did you know that today was specifically chosen because Down Syndrome (trisomy 21) is caused by a triplication (3) of the 21st chromosome (21) hence 3/21. Brilliantly subtle if you ask me. I learned this by reading an article written by an Australian Senator Sue Boyce. As the mother of an adult daughter with Down Syndrome it’s understandable why this is an day of interest to her. It is a well written piece worth a read. Please check it out by clicking here.

Unfortunately it is true that for every well informed individual in power, there must be someone in another position of power who attempts to undo that goodness and intelligence with small mindedness. Apparently University of North Carolina’s Professor Albert Harris is that opposite force to Senator Boyce’s sound voice. I am guessing you are all wondering on this special occasion remembering Down Syndrome why I would include an article such as this. It’s just this very reason that I’m including it. You need to read it as much as you needed to read the one by Senator Boyce. Click here and read it.

We’ve come a long way. It’s not that many years ago where a World Down Syndrome Day would never have stood a chance. For all that progress, we have an incredibly long way to go. Make no mistake that just like Keith P. Jones said – Disability is the final frontier in civil rights, the last great struggle. Professor Albert Harris’ irresponsible statements in a science class prove that very point. Celebrating days like World Down Syndrome Day to me is summed up wonderfully by Senator Boyce:

The theme chosen for this year’s World Down Syndrome Day is “Aim High Enough”.

It’s from a piece of advice that an old villager gave Langdon Down and that he passed on to his medical students: “My lad, you take your aim; be sure you aim high enough. That’s the thing – aim high enough.”

As a society, we owe it to ourselves to ensure that we are never satisfied that we have aimed high enough in supporting people with Down syndrome into the mainstream.

For more information you can visit the National Down Syndrome Society

I am something of a tv addict. One of the shows I love is Dancing with the Stars. Part of what draws me to it probably has something to do with the fact that for some reason my husband is willing to watch it with me. But I do get some satisfaction from watching people stretch outside their comfort zone because lets face it, most people do not have a comfort level with ballroom dancing.

Now we’ve had soap opera, movie and other tv actors and actresses, singers from 70’s music to country to R&B, olympic athletes, football players, comedians, broadway stars, race car drivers and on and on…..a truly diverse group of individuals. Differences aside, there is one thing they all had in common. They could hear the music.

This season Marlee Matlin, youngest woman to win an academy award in the best actress category and more recently seen on The West Wing, The L-Word, Nip/Tuck and Desperate Housewives is trying out her dancing shoes which is all the more amazing given the fact that Marlee is profoundly deaf. I watched last night in sheer astonishment and joy. Look at that girl dance!!! I am certain she feels the rhythm to some extent but she’s really at the mercy of her partner Fabian Sanchez. He must need to give her certain cues to make sure it comes together and there is no denying whatever they are doing is working.

This will be my example to Katherine of never saying “I can’t do that”. Sometimes Katherine is quick to say she doesn’t have the capability to do something.  I feel badly about it because maybe I’ve protected her too much. Yet I try with all my might to open her world to as many possibilities without telling her she can go to Harvard and be a neurosurgeon.

The point is this though. I doubt anyone told Marlee Matlin as a young girl that she could dance. Competition ballroom dancing just isn’t one of the things you typically do if you are profoundly deaf and yet – why the heck not??  I doubt anybody said “Oh honey absolutely you’ll be an academy award actress!”  What I love about Marlee Matlin most is that Marlee does what Marlee wants – not necessarily what she “should”.

What a great role model she is for her 4 children. What a great role model she can be for our children. Proof that if it’s something you want to do by all means you should try. I don’t know about you but it’s a good lesson for me too. Sometimes maybe out of a desire to protect my ‘baby’ (yea my 16 year old baby) I don’t allow Katherine to stretch as far as I should or she could. I think maybe I will be going out to get some dancing shoes. Thank you Ms. Matlin for allowing your actions to remind me of what Eunice Kennedy Shriver said at the first opening ceremony for the Special Olympics:

In ancient Rome, the gladiators went into the arena with these words on their lips: ‘Let me win, but if I cannot win, let me be brave in the attempt…’

Let me too be brave in the attempt.

© 2008, The Nasdaq Stock Market, Inc. Reprinted with permission.

Chris Burke (also known as Corky from the TV Series, “Life Goes On”) helps the National Down Syndrome Society (NDSS) kicks off the celebration of World Down Syndrome Day on March 21st by presiding over the closing bell.

The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome.

The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. For more information please visit http://www.ndss.org.

Ok I loved Chris Burke years ago in Life Goes On. I loved the fact that this family seemed pretty real – far more real than the Huxtables seemed to me. Real and I think what I really loved about it was that in some small way it tried to give America a look at poeple who mainstream television don’t “show” – the disabled. This show showed Corky (Chris Burke’s character) as a kid who was a part of a family who had problems – his problems were not that much different than any other teen entering high school. Fitting in, finding himself, dealing with siblings and the like.

Really our kids all face those issues, just happens that they do it at the same time as dealing with some other issues that “mainstreamers” wouldn’t have to face – seizures, learning disabilities, heart conditions – whatever issues your special child faces. Too bad there aren’t more shows being developed willing to show that type of vision. Too bad there aren’t more major stations willing to take a chance on something like that – THAT’s what “reality TV” should be – something that mirrors reality. Chris Burke and Life Goes On actually got reality tv right. It was great to see him out there yesterday. He reminded me what I missed on network tv these days.

I received the below information and thought it might be of interest to some of you and felt it a good opportunity to pass it along. I know that a number of us have used signing or are using signing as a way to augment communication. Might be fun if you were nearby or willing to travel to have some of our kids featured on this video.

Signing Time Auditions!
Your child could appear in Signing Time! We are looking for children ages 3 and under. Signing ability is required. Children must be available for production in Salt Lake City, Utah for a three-day period between May 12 and May 26. If your child meets these requirements, follow the instructions below to submit their audition video.

Here’s How to Apply:
1. View the 8 signs that Rachel teaches at http://www.signingtime.com/audition. Film your child signing at least 4 of the 8 signs presented. Read audition tips.
2. Submit your video audition using one of the following methods:

• Post a video of your child signing on Google Video or YouTube (videos can be made private to protect your little one). Then, send an email to audition@signingtime.com with:
  • A link to your video
  • A recent photo of your child
  • Your child’s name, birth date, clothing size, and brief description of their sign language experience
  • Your name, phone number, city, state, and preferred email address
    • Follow the link: How to upload a video to GoogleVideo
    • Follow the link: How to upload a video to YouTube

OR Send a VHS or DVD of your child signing to:

Signing Time Audition
623 E Fort Union Blvd. Suite 201
Midvale, UT 84047
Include a letter with the following:

• Your child’s name, birth date, clothing size, and a brief description of their sign language experience

• A recent photo of your child

• Your name, phone number, city, state, and preferred email address (Videos will be viewed by personnel of Two Little Hands Productions only. They will not be released to any third party. Videos/DVDs will not be returned).

3. Videos must be received no later than March 25th, 2008 to be considered.
4. If your child is selected you will be contacted by a production assistant with detailed information on or before April 15th, 2008.
5. Most audition correspondence will be via email. Add audition@signingtime.com to your safe list to avoid it being marked as junk mail.
Audition Tips and Frequently Asked Questions

*IF YOUR CHILD DOES NOT MEET THIS CRITERIA, PLEASE DO NOT SUBMIT AN AUDITION AT THIS TIME.

*ALL TRAVEL AND LODGING EXPENSES ARE THE SOLE RESPONSIBILITY OF THE PARENT OR GUARDIAN.

*DIRECT ALL CORRESPONDENCE REGARDING AUDITIONS TO audition@signingtime.com. DUE TO THE OVERWHELMING RESPONSE TO AUDITION NOTICES, NO CALLS WILL BE ACCEPTED.

First of all – Happy St. Patrick’s Day!! As a proud irishwoman I can’t let the day go by without acknowledging it!

Today I wanted you all to become aware of a piece of legislation introduced by former presidential candidate Senator Chris Dodd. It is called the Disability Savings Act of 2008. According to Senator Dodd’s website the purpose of this Act is:

To encourage individuals with disabilities and their families to save private funds for disability-related expenses to supplement, not supplant, benefits provided by other sources (including Medicaid and private insurance) so that people with disabilities can maintain health, independence, and quality of life.

These accounts would work similarly to a 529 plan. It allows family members to put aside money to supplement care needed for education, medical services, job training and transportation. The money saved in this program will not jeopardize government program support for individuals with special needs.

With a cap of $1 million Disability Savings Accounts (DSA’s) will have certain tax benefits as well:

• Funds expended from the DSA for specific services such as education, medical services, employment training and support, transportation, and other related services will be tax-free.
• Interest on accounts with a balance of $250,000 or less is tax free.
• Low income earners will receive a refundable matching tax credit of up to $1000 for their contributions to the DSA.

Funds from college savings plans and special needs trusts for the same beneficiary can be rolled into the DSA without penalty.

The theory is that these accounts would be far easier to set up than say a Supplemental Needs Trust and therefore make available an avenue for planning for special needs individuals without the need to consult an attorney which can be cost prohibitive. Disability would be determined by the Social Security Administration or the Disability Determination Service of a state and would have to be under the age of 65.

Senator Dodd acknowledges the difficulty of passing a piece of legislation like this during an election year. He told the people gathered for this announcement that he needed a co-sponsor from across the aisle (meaning he needs a Republican) and that he needs significant support. Actually he said he needed an army of supporters and then added “And you’re my army”

He absolutely does need an Army if we stand any chance of getting this legislation passed. Be a part of the army. If you have a US Senator representing you that is Republican, suggest they support this by co-sponsoring this important piece of legislation. Regardless of who represents you in the US Senate (you can find out at votesmart.org) contact them asking them to support this incredibly important piece of legislation.

I’ll update you as I can regarding it’s movement through the Senate. Seems to me it only benefits everyone to have this passed. Let’s start marching forward now!!!

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

School’s Basketball team adds special needs children
Middle School Basketball team in California shows what the true meaning of sportsmanship is with inclusive basketball team

No Dental Care for Special Needs Patients
Adult special needs patients in Cork, Ireland are going without even basic dental care because of the lack of anesthesia services

Profile: Melissa Piotrowski teaches music to special needs students
22 year old Melissa Piotrowski takes a love of music and shares it with special needs children

11th Berkshire Disability Day planned
Event is a day of celebration and education to increase community awareness of the accomplishments of those with diverse abilities. Showcase of available services also planned.

Book transports child with special needs
Photography teacher Joe Baltz has his students create a 16 page book starring a child with special needs.

Alzheimer’s, Down’s link sheds light
Researchers at the Byrd Alzheimer’s Center and Research Institute say they have recently learned some important new things about the link between Alzheimer’s disease and Down’s Syndrome

My baby, right or wrong
Woman chooses not to test unborn child for Down’s Syndrome and the reasoning behind her choice

Ok, I may be a Georgian at heart now but by birth I am a Jersey girl (yup I grew up just north of the Bada Bing) so I’m following with interest what is currently going on in New York State. Oh obviously the fact that a man once compared to Elliot Ness makes the downfall all that much more salacious – and disappointing but whatever. It’s really not what interests me about the whole thing. What interests me is David Paterson. Who?

Oh – sometimes this gentleman is better known by his official title – Lieutenant Governor David Paterson of the great state of New York. With discussion about impeachment and/or resignation obviously people are starting to look at who might be running the state in Governor Spitzer’s place.

As a person with an obvious interest in someone who might be empathetic or better yet sympathetic to disability issues the Lt. Governor is certainly a person to be watched. Elected in 2006, Lt. Governor Paterson is no stranger to politics. His father was a Secretary of State in New York and vice-chair of the national Democratic Party. The Lt. Governor first served as a state senator representing Harlem. Did I mention that the Lt. Governor is legally blind?

According to what I read he’s pretty well respected on both sides of the political aisle. I also read that he’s a leading advocate for both visual as well as physical disabilities. Seems to me that at the very least however he’s a real-life role model for kids – and adults alike. He certainly does not appear to have ever made anything of his disability in public life and critics as well as supporters tend to speak of his intellect, compassion and humor, not any disability. Heck – when do you hear of a republican call a democrat “one of the most decent and honorable guys I’ve ever met”?

My hope is that with a reputation like that should he become Governor by some twist of fate that seems to already be in the works, that the people of New York benefit from not only his wisdom but his experience.

Children with, without special needs paired by program, to benefit of both

Last week I wrote about how I thought that peer mentoring programs could benefit children by diminishing the possibility of bullying or harassment by other peers. This article in the Daily Press, a Virginia paper, highlights a program in York County utilizing this very concept. The brilliant thing about it is that it starts at the best possible time – pre-school.

It’s interesting however to note that the thought process that seems to have been used in putting this program into place is that this program gives the special needs child the ability to mimic their “typical” peer and therefore gain valuable skill development – both social and developmental. Certainly this was always a legitimate learning tool for Katherine.

As a young child in daycare, Katherine was placed in with children who were chronologically in the same age range as she was and we saw two things happen. One was that Katherine mimicked her peers in the classroom. The second is that because Katherine wanted to do what others in her classroom were doing she worked to figure out how to accomplish the task that much harder. She might not have done it exactly like her peers but she sure did find her own personal workaround.

The perfect example is crawling. Katherine would see her peers crawling around the room but because of physical weakness in her shoulder she couldn’t do exactly what she saw others doing. Her drive to be as mobile as her peers however had her work that much harder to find a work around. We called it butt scooting. It was this push up with one arm and her legs that she used to propel her butt forward and move. Brilliant. Would she have figured out mobility without the peer interaction? Possibly, probably. Was it a help?  In my untrained opinion – it was an essential piece of the learning process.

Of course exposing typical children to our special kids is just as beneficial to them as it is to our children. As pointed out in the article – “You learn something better if you teach it yourself”. These children are in essence – mini teachers. They help teach and they benefit because the lesson is that much better learned having not only learned it but interpreted that learning into teaching the same concept.

Better yet, when it’s possible for children to be in this setting the mini teachers are also learning – learning at a subliminal level in many ways. By this daily exposure to children with a variety of disabilities, typical children learn about people being different and yet, not all that different. What the children in Katherine’s daycare learned was that while Katherine might learn differently and might approach things differently than they did physically, she liked pizza at lunch as much as they did and looked forward to seeing the Barney video at rest time just like they did.

This is the beginning of understanding and breaking down prejudice that comes from fear which always springs from ignorance. Seems only right that ignorance be eradicated by education and that education starts with our young in school. Win-Win situations are always best and this seems to fit that definition to a T.

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.
The case for increasing the number of Medicaid waivers
Opinion piece eloquently explaining the need for increasing available medicaid waivers in Virginia which should be reprinted in every state in the union.

Art as an outlet; ‘Living Creatively’ exhibit recognizes ability, not disability
44 artists featured in the 3rd annual ‘Living Creatively’ exhibit all live with disabilites but it it is their artistic ability that unites them.

Hip Hop Baby
Candi Carter develops family friendly ‘hip-hop’ music to teach preschool concepts to help son who was born with chromosome disorder and finds it helps others with special needs as well.

Exercise Group to special needs young people in Hemet
Exceptionally Excited Kids is a nonprofit organization serving individuals with special needs from age 2 through 25.
Rylee’s Rally to help children with special needs
Deborah Davis organizes Resource fair for parents of special needs children with more than 30 vendors who supply a variety of products and services.

Local basketball team headed to Special Olympics championship game
Inspiring story about Naples, FL  basketball team undefeated and heading to Orlando for the state championship

14 percent of U.S. Kids with special needs
Twenty-four percent of families with a special needs child report a parent had to stop working or reduce hours to care for the child. Numerous other findings in a survey by the Health Resources and Services Administration