Nothing About Us Without Us!

Nothing About Us Without Us!
by Joy Caldwell

Skagit Parent Coalition Coordinator

Please, don’t talk ABOUT me; talk TO me.
Please don’t make decisions FOR me; make decisions WITH me.

My family & I had the pleasure of attending the DD Awareness Rally in Olympia on Wednesday, March 11 as we stood on the Capitol steps with upwards of 700+ people. Self-advocates Tyler & Troy from Skagit County attended with us and had a great day advocating for themselves. They both want to attend again before the end of the session.

Several speakers with developmental disabilities rallied the shivering crowd with their inspiring and courageous personal stories. Their imploring message for government and their fellow citizens to support them as they live and work in the community was loud and clear. The crowd warmed up as they cheered and chanted “Nothing about us, without us!” as the speakers explained that “People with developmental disabilities are PEOPLE FIRST.” They want to make their own choices about where they live, most preferring to live in their home communities not institutions in a distant county. They want to choose what type of work they’re interested in to work independently in their local communities, not isolated and segregated away from the rest of the population. They are not objects who should have things done TO them. They are people who need continued help, supports and services FOR them.

We spent the next couple of hours connecting with our Representatives and Senators, asking them to remain committed to the level of services that we have fought so hard for over the past few decades to achieve. Especially during the toughest of times our most vulnerable citizens cannot afford to lose services and go backwards. They rely on our support and assistance now more than ever.

I was very impressed with Tyler and Troy as they introduced themselves to legislators, security guards, other advocates, and family members. They spoke very clearly and directly about their lives, their jobs and how important their independence is to them.

Visit our web-site to learn more or come to Olympia on an upcoming trip. www.skagitparentcoalition.org

Christmas Greetings from the Caldwells

Christmas greetings from our house to yours this beautiful Christmas season! The big news around here is that Western Washington is having its first white Christmas in many years, with record low temperatures, too. We’ve seen a record 20+ inches of snowfall over the past week and the children even got to start their Winter break 3 days early. If it wasn’t so cold and we had more winter gear, they might enjoy it a little more, though they did make the snowman seen here.

2008 has been a good year for the Caldwells, not as much big news as previous years, which is kind of nice. Paul had a couple job changes. He started the year out as an Inventory Manager, and then tried his hand at car sales. Of course with the declining economy that wasn’t the best move and he found it a lot tougher than he had anticipated in the beginning. After another job search he landed at AutoZone in August and he is now managing his own store 30 miles away and enjoying it.

My home-based consulting business has gone very well this year with one client/contract after another. Right now I am awaiting word on a new contract. (They came to me and requested that I respond to the RFP so though it’s not a guarantee; it feels very positive.) If I’m awarded the contract, I will be the Project Coordinator for a newly formed County Parent Advocacy Coalition. It is a part-time position and will keep me busy for 2009. I will basically be the go-to person assisting families and their sons/daughters with disabilities, providing them with information and resources regarding local services available. It will also mean some travel away from home, working with legislators in Olympia as we advocate on behalf of families in our county. However; I am very excited about the potential for this position and what it will mean for our county families and individuals with developmental disabilities. It is a huge blessing to have the opportunity to be paid for my passion and to continue working out of my home office, with Hannah Mae close at hand.

Speaking of home, our girls are growing and changing every day as children do. Life with each of them is so much fun. We are proud of each of them in her own special way. Jeanna is 12 and in 7th grade this year. She had straight A’s her first term and is working hard to maintain her 4.0 gpa. She is playing her violin in the orchestra for the 4th year in a row and is getting very good on it. She just wrapped up her first volleyball season on her school team and seemed to enjoy it. She attends a couple of different girls/youth groups and has quite the social calendar. Whenever she’s not otherwise booked, I hire her to help me out babysitting her sisters. (Such a relief to be able to get out the door without 5+ extra bodies all the time.)

Jessica is 9 and in 2nd grade in a regular classroom. She is continuing to progress in every area, though certainly at her own pace. She is learning to read with expression and is now reading signs out loud as we drive around town. She continues to amaze us in so many different ways. A big challenge for her right now is trying to figure out the latest member of our family – young Hannah Mae… Jessica finds her unpredictable and can’t quite figure out what toddlers just doesn’t understand yet.

Haley is 8 and in 3rd grade and a smart cookie, too. She is making excellent grades in every subject and is a wonderful and compassionate, protective “little” sister to Jessica at school. Haley is also a very responsible young lady and quite a wonderful “Mother’s Little Helper”. She helps out lots with Hannah Mae, especially in the entertainment department. They are especially fond of “chasing” each other around the kitchen and laughing their heads off at the silliest little things. I love listening to their big and little girl giggles! (There is never a dull moment at our house between the hours of 7 am and 9 pm…) Jeanna, Haley and Jessica attend GEMS (Girls Everywhere Meeting the Savior) Girls club together and really enjoy it.

Molly turns 5 in a couple weeks and is in preschool this year. She comes and visits about once a week or so. She is very precocious and a ball of energy (like Haley and Hannah Mae). We have some very precious quiet tender moments with her as well. She especially likes to come with us on special family outings and we do our best to include her in them as much as possible. She’s a great little story-teller and especially loves to help “wash the dishes” (…or anyone close by) with the sprayer.

And then there’s Hannah Mae who is now 19 months old, busy as can be and into everything!!! We are a gated community around here with no less than 4 gates up around the house, door knob covers on every door and door locks on every cupboard. It’s a good thing I have so many extra sets of eyes and hands as they certainly help me keep an eye on her and keep her from too much mischief. She is talking lots and putting a couple words together at a time now. Her/our biggest achievement has been that I am finally able to put her to bed awake and she gets herself to sleep without having to be held or rocked. Though we’re going through some minor withdrawals (Paul more so than me…), it does feel very good not to have her attached to me so much!

We are so thankful for my Mom & Dad living a mile away from us now. Mom is Jessica’s personal care assistant on weekday afternoons, helping Jessica with her homework, bathing, and “chores”. This is a huge help and benefit to all of us. Couldn’t ask for a caregiver who loves Jessica more or who is easier to work with! Next best thing to mom or dad is always “Mimi”! All of us love having her here every day. Mom is a hard worker and always on the go.

Dad continues to have his health issues. He is recovering right now from rotator cuff surgery a couple weeks back. He is funny as ever and knows just how to keep us all laughing. (He was the “funny guy” behind the photographer for our family pictures.) They have been pastoring here in Mt. Vernon in one capacity or another ever since they got here and are right now in a bit of a transition. Dad continues to preach and fill-in whenever/wherever he can and they are both a breath of fresh air wherever they go.

Paul & I continue to lead/host a small group in our home every week and we have made the best friends ever through this group. The group continues to grow and we thoroughly enjoy this avenue of ministry and outreach together. We love our church family and all the wonderful amazing friendships in our life.

Marriage and family is a delight for Paul and I and our 5 girls together. Paul spoils me rotten (and I try to spoil him back…) Paul surprised me last weekend with a wonderful “second” honeymoon as we escaped to the Salish Lodge and Spa overlooking the beautiful Snoqualmie Falls. He took care of all the details including child-care arrangements and even packed their bags. It was an amazing heavenly 36 hours alone together in the most romantic atmosphere ever. I am so-o-o blessed!

We would love to hear from you and your family and especially love seeing your pictures too. We pray this letter finds you enjoying this holy season as we celebrate the birth of our risen Savior. Have a very Merry CHRISTmas and may His richest blessings be yours in 2009!

Love and Blessings,

The Caldwells
Joy-Grace & Paul
Jeanna, Jessica, Haley, Molly & Hannah Mae.

P.S. Here’s a Christmas poem for you, written by Haley (with a bit of help from me), just for fun.



I look outside
And what do I see?
I see snowflakes falling
In front of me

Snowflakes are beautiful
Snowflakes are light
Snowflakes are falling
It’s quite the sight

It’s icy and cold
It’s fluffy and white
Slippery and wet
Reflecting the lights

The trees now transformed
With blankets of white
As the snowflakes fell
All through the night

There’s three more days
‘Til Christmas Eve
To open the gifts
We will receive

Christmas is coming
Not fast enough
For all of the kids
Who want lots of stuff

Is it all about stuff
Or what is the reason
For all the traditions
Of the holiday season?

The reason for Christmas
Is all about giving
Love, hope, and peace on earth
It’s Christ we’re celebrating

With family gathered
‘round the tree
While Papa reads
The Christmas story

We take a moment
To reflect
On Jesus Christ
The Best friend we’ve met.

Will You Walk With Me?

I want to be real not fake or plastic
Transparent for all to see
Jesus, His light - His character,
Shining out from me.

But all too easy, I put on my mask
I hide behind my facade.
I want you to think I'm doing just fine
Meantime I'm questioning God.

But what will you think if you really know
How I struggle and question my faith?
Will you push me away? Will you still be my friend?
Or will you choose to walk with me?

When I look at you, I wonder inside.
Can you possibly relate to me?
Maybe I've been so focussed on me
The true you was harder to see.

Along came my Friend and whispered to me.
He opened my eyes and let me see.
He gave me a peek into your heart
And showed me a jewel right there from the start.

You want to believe His treasure is there.
But dare not look and open it bare.
The jewel feels cold, sharp and painful too.
Rough edges poking on the inside of you.

My sister, my friend, let's make a pact.
Let's walk together and we'll never lack.
I'll help you see the treasure you are.
As you hold my hand we'll shine like a star.

No longer masked, no longer afraid
We'll hold our heads high, our debt has been paid.
Jesus' death paid our ransom. It set our hearts free.
Untangled the web, His blood was the key.

My name and yours are carved on His heart.
Never again will we be apart.
We'll walk together with Him at our side
As our jewels reflect the Love of our Guide.

November 8th, 2008
by Joy Grace Caldwell
for the CTK Women's Retreat
Sumas, Washington

Why Did the Chicken Cross the Road?!

BARACK OBAMA: The chicken crossed the road because it was time for a change! The chicken wanted change!

JOHN McCAIN: My friends, that chicken crossed the road because he recognized the need to engage in cooperation and dialogue with all the chickens on the other side of the road.

HILLARY CLINTON: When I was First Lady, I personally helped that little chicken to cross the road. This experience makes me uniquely qualified to ensure - right from Day One! - that every chicken in this country gets the chance it deserves to cross the road. But then, this really isn't about me.

SARAH PALIN: I could see the chicken crossing the road from my house.

GEORGE W. BUSH: We don't really care why the chicken crossed the road. We just want to know if the chicken is on our side of the road, or not. The chicken is either against us, or for us. There is no middle ground here.

DICK CHENEY: Where's my gun?

COLIN POWELL: Now to the left of the screen, you can clearly see the satellite image of the chicken crossing the road.

BILL CLINTON: I did not cross the road with that chicken. What is your definition of chicken?

AL GORE: I invented the chicken.

JOHN KERRY: Although I voted to let the chicken cross the road, I am now against it! It was the wrong road to cross, and I was misled about the chicken's' intentions. I am not for it now, and will remain against it.

AL SHARPTON: Why are all the chickens white? We need some black chickens.

DR. PHIL: The problem we have here is that this chicken won't realize that he must first deal with the problem on this side of the road before it goes after the problem on the other side of the road. What we need to do is help him realize how stupid he's acting by not taking on his current problems before adding new problems.

OPRAH: Well, I understand that the chicken is having problems, which is why he wants to cross this road so bad. So instead of having the chicken learn from his mistakes and take falls, which is a part of life, I'm going to give this chicken a car so that he can just drive across the road and not live his life like the rest of the chickens.

ANDERSON COOPER, CNN: We have reason to believe there is a chicken, but we have not yet been allowed to have access to the other side of the road.

NANCY GRACE: That chicken crossed the road because he's guilty! You can see it in his eyes and the way he walks.

PAT BUCHANAN: To steal the job of a decent, hardworking American.

MARTHA STEWART: No one called me to warn me which way that chicken was going. I had a standing order at the Farmer's Market to sell my eggs when the price dropped to a certain level. No little bird gave me any insider information.

DR SEUSS: Did the chicken cross the road? Did he cross it with a toad? Yes, the chicken crossed the road, but why it crossed I've not been told.

ERNEST HEMINGWAY: To die in the rain, alone.

JERRY FALWELL: Because the chicken was gay! Can't you people see the plain truth? That's why they call it the 'other side.' Yes, my friends, that chicken is gay. And if you eat that chicken, you will become gay, too. I say we boycott all chickens until we sort out this abomination that the liberal media whitewashes with seemingly harmless phrases like 'the other side.' That chicken should not be crossing the road.. It's as plain and as simple as that.

GRANDPA: In my day we didn't ask why the chicken crossed the road. Somebody told us the chicken crossed the road, and that was good enough.

BARBARA WALTERS: Isn't that interesting? In a few moments, we will be listening to the chicken tell, for the first time, the heartwarming story of how it experienced a serious case of molting, and went on to accomplish its lifelong dream of crossing the road.

ARISTOTLE: It is the nature of chickens to cross the road.

JOHN LENNON: Imagine all the chickens in the world crossing roads together, in peace.

BILL GATES: I have just released eChicken2008, which will not only cross roads, but will lay eggs, file your important documents, and balance your checkbook. Internet Explorer is an integral part of eChicken2008. This new platform is much more stable and will never reboot.

ALBERT EINSTEIN: Did the chicken really cross the road, or did the road move beneath the chicken?

COLONEL SANDERS: Did I miss one?

____________________________________
A friend sent this to me... Hope you enjoyed it as much as I did.

(Author Unknown - unfortunately.) I'll be happy to give credit to the original author if one makes themself known.

Skagit County Buddy Walk 2008 - Huge Success

This is the photo and captioning from the front page of the Skagit Valley Herald - Sunday Edition for October 12, 2008. Click here to visit the Skagit Valley Herald.

The Second Annual Skagit County Buddy Walk was a huge success, drawing approximately 400 people from around the county. We walked to raise awareness that people living with Down syndrome are equal contributing members of society, (not sick, ill, diseased or worthless "r*t*rds" [I HATE that word!!!] as some are led to believe). They are integral family members and valuable contributors in schools, churches, communities, and workplaces throughout our communities. Their participation adds so much value to everyday life throughout our communities in so many different ways.

Jessica's contribution is one of encouragement. She is the biggest and best cheerleader for her friends and family members. She is always the first one to say, "Good job!" or "Yay!". She thoroughly enjoys watching others succeed, whether in sports, music, at recess, in school, whatever effort she observes. Thank you, Jessica, for reminding us that we can enjoy life as we encourage others to do the same - "life is about enjoying the success of others... not all about me and my success".

We couldn't have ordered better weather for the event as we walked and celebrated the day's festivities in the warmth of the Fall sunshine, hardly a cloud in sight with just a nip in the air - perfect light sweater (& rainbow scarf) weather. [Not too sure how Jessica keeps getting the feature picture...maybe it was our bright rainbow colored scarves that attracted the reporters' attention...? For the past two years, I have made scarves especially for members of "Team Jessica" to wear as we walk together. This year the fabric was bright rainbow colors as seen above. Of course, I couldn't be more proud, though, we would be very happy to share the "spotlight"!]

Beyond the obvious, getting to celebrate Jessica for who she is... Yesterday was so much fun for me as a parent of a child with Down syndrome for so many other reasons as well. First, it was a huge blessing and encouragement to have so many of our friends, family, church family and community contacts come out and walk with us. It is this kind of love and practical support that makes all the difference in the world when raising a child with special needs.

Second, it is always a joy to see individuals with Down syndrome enjoying life at all ages and stages - from the youngest to the oldest. There were several musicians (with ds) who assisted Jon Dalgren and his band "Out of the Ashes" as they kept us all entertained with lively, amazing music throughout the day. These young (and old) musicians are very talented and obviously thoroughly enjoyed their most important role of the day! The day would have been very boring and dull without them!!! Thank you, Jon & band for the gift of music!

Thirdly, I was so inspired by the positive attitudes of all the volunteers and walkers! The way that so many community members came out and volunteered of their time, energy, and financial resources to make the lives of our ds community so much brighter was truly motivating. I heard so many compliments about the organization of the event and how it reinforced the message: "steps for a brighter tomorrow". One walker commented that, "I didn't realize until today how many people there really are in our county that have Down syndrome". Yes, there really are and there are many, many more who weren't even present.

So to each one of you who supports and encourages our community members with Down syndrome, from the youngest to the oldest, not only for annual events like the Buddy Walk, but on every level every day - in our hospitals, schools, workplaces, recreation venues, homes, and elsewhere - THANK YOU for taking "steps for a brighter tomorrow"! Each one of you make a difference! Thank you!

Myths and Truths about Down Syndrome

Myth: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.

Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.

Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”

Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.

Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.

Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.

Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

(Christi Hockel looks up at her fiance Austin Davenport) Click here to read more about their story.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.

Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Give a High 5 to someone with Down syndrome today!!!

**All photos (except the one of Christi and Austin - engaged to be married) are of my daughter, Jessica.

Note: The above information (and more) can also be located at the NDSS website.

Local Buddy Walks Spread Message of Acceptance and Inclusion

The National Down Syndrome Society (NDSS) and the Down syndrome community invite the public to celebrate Down Syndrome Awareness Month this October, by participating in one of the 275 Buddy Walks taking place this fall.

"People with Down syndrome, like everyone else, are people first, each with their own unique gifts to contribute to their families, friends and communities," said NDSS President Jon Colman. "Down Syndrome Awareness Month and the Buddy Walk program provide a forum for dispelling stereotypes, educating the general public about their many abilities, and raising awareness for people with Down syndrome."

One in every 733 babies born in the U.S. has Down syndrome. The life expectancy of people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today. In that same span of time, advancements in education, research and advocacy have had a tremendous impact on the opportunities that individuals with Down syndrome have to live healthy and fulfilling lives.

Today, many people with Down syndrome:
• Attend neighborhood schools and learn in typical classes alongside their peers without disabilities.
• Graduate from high school and go to college.
• Comprise a vibrant part of the American workforce.
• Actively participate in the social and recreational aspects of their communities.
• Live independently, make their own choices, and advocate for their rights.

The Buddy Walk
The Down syndrome community has been celebrating Down Syndrome Awareness Month each October since 1981. The Buddy Walk was created by NDSS in 1995 to provide its affiliates and other local groups with a way to promote acceptance and inclusion of individuals with Down syndrome in their communities. The Buddy Walk also raises funds for local and national programs and services to benefit individuals with Down syndrome and their families.

Anyone can participate in this one-mile walk. With more than 275 Buddy Walks taking place in the United States this year - most held in October - there is one near you! Visit http://www.buddywalk.org/ to see a map of local walks. To learn more about Down syndrome and obtain information to share with others during Down Syndrome Awareness Month, visit http://www.ndss.org/.