Z is the 26th and last letter of the alphabet. In the A to Z challenge this is the last post, but by no means is this an end. In the month of April we have shared every letter of the alphabet, and although Z is the last letter of the alphabet it is not the last time we will use these letters. A started with advocacy and this is where we begin again as we teach our children to advocate for themselves and write their own alphabet.
As a parent of a child with special needs I measured success by endings. Alex made it through kindergarten, and then we moved onto elementary school. Alex made it through middle school and despite many barriers Alex graduated from high school.
But these were not ends for Alex, her A to Z go on and on. Today she is in college and in three years another end will occur and a new beginning will happen. Alex will look for a job, a place to live and a community to call her own. And yet this will not be an end, perhaps she will find a meaningful relationship and then who knows….always new beginnings.
If you have not liked our page, it is a good way to stay on top of the ups and downs of college (and inclusive education) for a person with a development/intellectual disability. I have no idea what is going to happen....but I will share the good and the bad. Please click on "The Ordinary Life of an Extraordinary Girl" now
Younger sibling – what is it is like being a younger sibling? Well let me set this up for you. Joey is the oldest and he has DS, then there are 4 more brothers then me. The one and only girl! Now even though I am the youngest I have many older child tendencies due to Joey. Being the only girl I naturally have the caregiver role, especially since I am the one of the 5 other sibs who has lived with Joey being at home with me my entire life. Back east he lived in a private catholic boarding school and came home on weekends. You may be thinking…what was life like? Well it wasn’t all bad, in fact it was fairly good considering. As I have been recently reflecting on my life and how Joey has added to and changed my behaviors as an adult are both good and bad depending on how you look at them.
1st….I realized that as an adult I have a harder time making concrete decisions when deciding where to go out to eat or relax etc. As a kid it was always easier to just go where it was going to be easier for Joey so he wouldn’t have a behavior. As an adult the negative side to this is that is it really important for me to have my own interests and places that I enjoy being rather than assimilating my hubby’s or Joeys. So I am trying now but it’s hard…
2nd….As a child I rarely ever had friends over. Joey has/had lots of violent behaviors like hitting walls and breaking TVs. So it was always easier to go to someone else’s house. Only recently did I realize that my friends never really knew about Joey. We celebrated Joey’s birthday this year and saw an old neighbor and school friend who came over to our table and we talked about old times. I asked him if he remembered Joey and he said NO. That just made my heart sink. I began to question: Was I ashamed, uneducated or just plain embarrassed or all the above? I think it was all the above. I didn’t know much about DS and didn’t know how to explain it to my friends and back then (Joey is 54) talking to your kids about the disability wasn’t really thought of. Parents were just trying to survive with the limited resources as most were in the institutions and if you chose not to go that route you had to fight your way through things. So I don’t blame my parents as they were uneducated as I was. Now I can help change that.
3rd….Are we concerned for the future? YES YES YES, just like you the parents if not more so! You might be thinking in the back of your head will my kids be willing to take over care? Should I ask or say something? Whether you realize it or not, sibs carry the same stressors and concerns as parents. We think what is going to happen when they are gone? Will there be financial resources for me to help my sib? What do I do about services? And on and on… Please don’t be afraid to bring the topic up…believe me we all have thought about it and ask if they want to be involved in the process. The best thing my mom ever did was allow me to begin taking over slowly so I could get to know the required processes for Joey on an annual basis. This is truly a blessing and very rare! My goal is to change that! Because it is not if something happens but when! Are you ready?
So as younger sib I am fully involved into Joey’s life in all aspects. First I am his sister, then his guardian and advocate, caregiver, friend and #1 supporter. I have a proactive personality which may seem to rile people at times but I am ok with that. Change does that and that is good! My goal is to educate families on the sibling perspective and the need to be ready for the future. Join Joey and I on Facebook at JoeysUps and visit our website to see our book called Will YOU Be my Friend? A book teaching a great anti-bully message that we are more alike than different! www.joeysupswithdowns.com. To contact me to speak, email me at email@example.com and subject it speaking. Thanks for hearing “our” side. Remember we are here for the long haul…are you ready?
In case you missed it - here's the trailer for the movie that was released in 1980.
Josh loves to sing, and when he finds a musical with songs that he likes, he'll watch it a zillion times. In fact, when he heard me playing the videos trying to choose which one to use for this post he immediately got up and came into the room with "HEY! That's from my tape! What's Xanadu doing on you computer thing?" (a little possessive maybe...)
To be fair - his all time favorites are Grease and Cry Baby. He knows EVERY word, backward and forward. He can sing all the songs, but still "talks" to the characters every time he watches: "There's you girlfriend" or "No! Don't go there!" His sense of imagination and wonder never gets old.
Old, new, good, bad, classic or "how did this even get made?" He loves them all. As a matter of fact - today he's got High School Musical on - AGAIN!
I wonder if the NEED to sing and dance / perform is located somewhere on the 21st chromosome? Josh isn't the only person with Down syndrome that I know who likes musicals... (Right Marcus?)
So if you ever need information on some obscure detail from any of the musicals in Josh's repertoire - he'd be happy to help. He'd also consider it a given that anyone casting the parts of "Cry Baby Rocker" or "Danny Zucko" would give him first consideration... :D
In the meantime, I'll continue to enjoy the experience of Josh's performances all by myself -- until the neon lights of Xanadu shine for my personal muse.
When the mother picked up Amanda from preschool, a boy from her class marched up to her and said, “Amanda put on my coat today.”
“Well, that’s silly,” the mother replied.
“No, it’s not,” said the boy, “Now it’s got Down syndrome all over it.”
The mother’s mouth opened but her heart stopped any reply. The boy’s mother, standing nearby, shuffled him away. No further words spoken.
Of course the mother imagined this scene before; she lived it in her mind the day her beautiful girl was born and the words “Down syndrome” came from the doctor’s lips. She lived it the first day she took her daughter in public. She lived it the first time she took her daughter to this new school and now… here in real life, it slapped her in the face.
She turned around, went to the car, and cried.
Amanda quietly asked, “Why are you crying?”
“Because I love you so much,” the mother replied.
She will relive these moments again in her mind: as she drives, as she sleeps, as she walks.
And I wish for her she can relive it with this reply:
“Oh! So your coat now has Down syndrome all over it? Wow! That makes it a very special coat.” She would look at the boy and say, “Because with a coat like that no one is judged unfairly. That kind of coat wants everyone to be happy.” She would take a deep breath and continue, even if the boy squirmed and his mother still said nothing, “There will never be a coat that works as hard. Harder than you’ll ever have to work just to make a sentence. In fact, I think a coat with Down syndrome all over it makes the playground a better place, with more imagination and kindness and a completely different perspective on what’s important. This coat doesn’t bully or…
You know what?
You’re pretty lucky. There are many amazing surprises that come with a coat like that.”
Because this is what should be said.
I believe EVERYONE and EVERYTHING has VALUE if we’re willing to broaden our perspective, perhaps change our perception, or maybe look a little closer at our current point of view.
Here are some words that might come to mind when people are asked to define the word VALUE:
Usefulness – Importance – Worth,
But maybe it’s time for society to alter their perspective and perceptions and define VALUE with words such as:
Appreciate – Respect – Cherish.
Which has more value to you, a $100 bill or a $1 bill? Most people would answer a $100 bill. However, if you broaden your perspective and look for the value in everything, you’ll see that the $1.00 can be just as valuable. Josh values “ones” since they have significant meaning in his life. They’re a necessity in order to play his favorite card game, Scat. Certainly one dollar bills can be accumulated and become hundreds, so who’s to say which point of view is the right one? I’d suggest they both
should be valued no matter how vast their differences.
Which possessions do you value more, a new car, a big house, an expensive vacation or things of little monetary value but make you
happy in their simplicity, perhaps a pet, for example? I wonder if most would answer that accumulating expensive possessions has more value. Josh values his swing and his collection of Celtic Thunder music on his IPod. He values his 200 decks of cards and his Mardi Gras beads.
He values his Full House DVD collection. Who’s to say which possessions have more value? It’s all in the way we choose to look at things.
Which type of person do you value more, a person who is rich and powerful or people with an intellectual or development disability? Most would say that the person with a lot of money and clout has more value to society. However, Josh, even though he may be more vulnerable or even at a disadvantage because he has a lower IQ and may struggle at times to communicate his needs, wants, ideas, and dreams, HE IS the most compassionate, loving, nonjudgmental, clever, empathetic, entertaining person I've ever met. He is a team player, willing to help anyone who asks and his presence here in our society simply makes the world a better place just by being himself. It’s my perspective that HAPPY PEOPLE make the world a HAPPIER PLACE.
As parents/caregivers of a person with a disability, it is vital that we are
vigilant advocates, not only for what our loved ones need to help them make their dreams come true, but also by continuing to educate society about how valuable our loved ones can be to our world.
It is vital that we ask people to broaden their perspective and perceptions to include VALUING ALL PEOPLE for their contributions to the world we live in. Even more importantly, it is imperative that we teach our loved ones that they deserve to be valued, remembering to always show them the respect they deserve by valuing their personal opinions and feelings.
When we, as a society, broaden our perspectives and widen the path of our perceptions to value all people for who they are, we all surely help individuals with I/DD to be victorious in their pursuit of happiness.
I never knew how important it was to value such simple yet powerful things in my life, until Josh came along nearly 19 years ago.
Here are some ways people can change their perspective, perception and point of view about what it means to VALUE people who have an intellectual or developmental disability, like Josh, who really have more similarities than differences: To know Josh, and those like him, is to adore them, commend them, delight in them, respect
them, credit them, appreciate them, treasure them, love them, and VALUE them!
Josh certainly has changed my perspective! Has he changed yours?
"The idea that some lives matter less is the root of all that's wrong with
the world." - Dr. Paul Farmer
I struggled with what I wanted to do for this post. There were two main ideas that I wanted to address, and since I couldn't decide on one - here's both! Thanks again to EVERYONE who has helped make this month such a success!!!
One way we try to get a better understanding of something we’re not familiar with is to read books. As parents, we look for books to give our children to help them understand others who might be different from them. On "The Road We’ve Shared", one of the resources we provide is an electronic evaluation tool for children’s literature. It was designed as part of a graduate thesis in Disability Studies. It can be used by parents and educators to determine whether books that introduce Down syndrome to children and young adults are appropriate.
The tool looks at eight major areas:
Eventually, we hope to establish a library of reviews on file so that people can see what others think about books that are available.
We also provide a list of over 100 books for children and young adults.
From Wikipedia (Emphasis mine)
“In the United States, unfunded federal mandates are orders that induce "responsibility, action, procedure or anything else that is imposed by constitutional, administrative, executive, or judicial action" for state and local governments and/or the private sector.
Obviously all of these are important pieces of legislation. They provide the structure for fair treatment of people who are disadvantaged by society.
Unfortunately, when they don’t come with federal dollars attached, the results are often slow, uneven implementation with a wide variety of success. Even when there are participation grants involved (states get monies for adhering to policy like with IDEA) the fact remains that each individual state is responsible for developing a plan. On one hand this is good, we wouldn’t want all of the programs to be based on a particularly bad model. On the other hand, this ends up being the source of further discrimination and uneven opportunities. One need only look to the Medicaid “waiver” issue and the disparity among services provided from state to state, or the wait lists that exist in some states that exclude many people from services all together sometimes for many years.
The movement to do away with sheltered workshop environments threatens to become another “unfunded mandate.” I think we can all agree that there is not enough money to accomplish everything we’d like to see at one time. Wherever the money comes from – federal, state, public or private enterprises – it needs to be spent wisely. Parents, self-advocates, and caregivers need to be in on the discussion about how to proceed. New, unique approaches that focus on the individuals need to be discovered and put into place.
"In childhood, I witnessed my grandfather’s truth about
skin color, faith and fear. I waded through my mother’s denial and each truth it bore. Pluto was a planet and the brontosaurus my favorite dinosaur.” The truth is malleable.
The truth is my son has 47 chromosomes and I live with 46. Chances are you do, too. The truth is, you and I don’t know what it's like to have 47 chromosomes. What does that feel like?
The Grunsteds went to Tampa, Florida for this year’s spring break. This is the first year Bobby was healthy enough and strong enough to go on an active vacation. We were all very excited.
We enjoyed the local attractions and Bobby amazed us with his confidence to try new things. He has worked so hard in Physical Therapy to be able to enjoy unsteady rides and let loose like a 6 year old needs to let loose.
He had fun exploring.
But there was one very special reason we chose Tampa for our trip. Busch Gardens has a Sesame Street attraction. And Bobby loves Sesame Street. He does not care about Santa Claus or the Easter Bunny, but the Sesame Street world is very dear to him. So we took him to meet his hero. It was amazing.
A friend, family member, and citizen. A young man who was taken from us too soon. A laugh that was infectious. A legacy of devotion and change.
Recent laws, results of the efforts of tireless advocates, that have changed the world as we know it for children and adults who have Down syndrome. (Thanks to Joe Meares for putting the timeline together)
For some, changes in laws and attitudes have resulted in increased inclusion and greater opportunities. Battles had to be waged, but the results were fabulous!
Despite progress in some areas, without major societal changes, those who have been included in K-12 education often face exclusion and limited opportunities as adults.
New prenatal testing procedures make it easier to detect Down syndrome before birth. Unless and until fair and balanced information is available with those tests, these statistics will continue and/or get worse. For adults who have Down syndrome, these statistics make the world less accepting of those who are already here.
Abuse and neglect have plagued our community and have been discovered in many settings that were supposed to support people with disabilities. Landmark court decisions were necessary to facilitate change. With those decisions comes fear and a race to eliminate the possibility of recurrence. Those of us with adult children have experienced the results of poor planning and inadequate resources for unfunded mandates in the name of progress. As the nation and the world look for solutions to current abuses in the 'sheltered workshop' environment, we hope everyone remembers that there are real lives being affected with every decision.
The link between Down syndrome and Alzheimer's disease is real and threatens the very health and memories of those we love.
The more things change...
Those of us on "The Road" have lived through a time of great change. We've advocated for our loved ones to the best of our ability. Now we've come together to face the challenges, questions, and JOY of adulthood. We remember the past, our own and those who came before us, and we move "forward with hope" toward a brighter future that comes with community.