Tag: "down syndrome"

HOLIDAY GIFT GUIDE - The Child King DVD

the child king dvd cover

GIFT IDEA - THE CHILD KING DVD

The Story Behind The Child King: Making The Child King

The Child King is the story of two brothers who embark on a memorable quest to find Santa Claus at the North Pole. The film stars Peter Johnson, a special young man from Scituate, Massachusetts who made cinema history as one of the few actors with Down syndrome to play a leading role in a feature motion picture. The film has been lauded by many individuals, publications and organizations including Exceptional Parent Magazine, The Special Olympics and Best Buddies International.

All producer’s profits from the sale of the film support the Child King Foundation, a non-profit entity that grants funds to those who advocate for the intellectually disabled. This month the foundation is awarding thousands of dollars in grant money thanks, in large measure, to generous word-of-mouth within the Down syndrome community.

The Child King feature-length movie offers a wonderful holiday soundtrack performed by popular recording artists such as Martina McBride, Willie Nelson, Jessica Simpson, Randy Travis, Brian Setzer, Aaron Neville and Vince Gill.

The Child King sells for $19.95 and includes free shipping. It’s available to purchase online at www.thechildking.com.

Nov 27, 2009 | 1 comment | View Post

I’m A CVS Caremark All Kids Can Grant Winner!

I recently received some very exciting news. Back in March, TwitterMoms gave me a heads up on the CVS Caremark All Kids Can campaign. My youngest son has Down Syndrome. I thought it was perfect timing for a campaign like this and I wrote a post about the importance of inclusion. The title was “With Inclusion, All Kids Can“.

I’ve learned that I am one of five bloggers that CVS chose to receive a $1,000 grant to the nonprofit of my choice that supports children with disabilities. When I read the email I had such mixed emotions. It made me happy, sad and very proud all at once. I am totally thrilled to have been selected as one of the winners.

I’ve chosen the National Down Syndrome Society to receive the money. I chose them because their mission statement parallels my own beliefs. Their vision is what I wish for my son. “The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.”

A big thanks to CVS Caremark All Kids Can for selecting me as a winner and to TwitterMoms for giving me a heads up about the CVS Caremark All Kids Can campaign in the first place.

Jun 11, 2009 | 3 comments | View Post

The Alzheimer’s Project on HBO

Last Thursday I was privileged to have the honor to be one of the members of The Silicon Valley Moms Blog group to take part in a private conference call with Maria Shriver. Yep, Maria Shriver. For those of you that don’t know who she is, she’s kind of a big deal. A really big deal. She’s an award winning journalist. She’s an author. She’s a member of the Kennedy family. She’s married to ~~the Terminator~~ the Governor of California, Arnold Schwarzenegger. She’s heavily involved with the Special Olympics (her Mom helped found it). She’s an Alzheimer’s advocate. She’s a beautiful woman. She’s a Mom. See what I mean by big deal? (Hmmm. I guess I do have a girl crush.)

My Grandma suffered from Alzheimer’s back when they didn’t call it Alzheimer’s. At first we thought she was just a little loopy. We even giggled a couple of times. We were ignorant kids that learned quickly that what Grandma was going through was no joke.

The conference call with Maria was about her work on the HBO documentary The Alzheimer’s Project. The documentary consists of four parts, the first premiering last night. Maria’s father had Alzheimer’s and she wrote a book about it entitled “What’s Happening To Grandpa?”. She is featured in the second segment in the series, “Grandpa Do You Know Who I Am?”, which airs tonight. HBO has made this documentary available to everyone, subscribers and non-subscribers, by streaming it online as well as airing it on television.

Some of the things I learned on the conference call with Maria Shriver are that

every 70 seconds someone new deals with Alzheimer’s
70% of Alzheimer’s patients live at home
76% of the unpaid caregivers for Alzheimer’s patients are women

Our call touched on a number of other points as well. The reason we’re seeing more instances of Alzheimer’s is because people are living longer. The financial toll that Alzheimer’s is staggering and it has the capability to bankrupt not only the families and caregivers but the healthcare industry as well. The emotional, mental and physical impact of Alzheimer’s is deep. There are no survivors of Alzheimer’s - not the people suffering with it and not the families that love and care for them. As Maria pointed out, “Alzheimer’s is an old person’s disease but a young person’s burden”. Sad but true. We have the power to help find a cure for this disease. You can get involved in many ways including participation in an Alzheimer’s Walk and by asking your legislators to vote on the Alzheimer’s Study.

My interest in Alzheimer’s remains very strong, even though my Grandma passed away years ago. My youngest son, CJ, has Down Syndrome, which means he has a disposition to early onset Alzheimer’s. The documentary doesn’t touch on that specific aspect of the disease but I am hopeful that we will find a cure during my lifetime and the cure will help all of those suffering from this dreadful disease.

If you’d like to learn more about Alzheimer’s contact one of the following organizations.
NIA/Alzheimer’s Info, 1-800-438-4380
Alzheimer’s Association, 1-800-272-3900

A number of us Tweeted during the call, you can check out our Tweets by searching #mariashriver.

A big thanks to Maria Shriver for taking the time to speak with us. Another big thanks to Jill, founder of Silicon Valley Moms, for connecting us (literally) with Maria.

May 11, 2009 | 3 comments | View Post

World Down Syndrome Day

In a day where people use the word retarded all too easily it is obvious that our society could benefit from more advocacy, education and positive exposure of special needs. To that end, today - World Down Syndrome Day - I would like to tell you about my nine year old son, who has Down Syndrome. You may think because he has Down Syndrome that he’s very different from other children. In many ways he’s the same. See for yourself.

FOOD

My son likes yogurt, just like many “typical” children.

My son likes corn on the cob, just like “typical” children.

BIRTHDAY CAKE

My son likes to blow the candles out, just like “typical” children.

My son gets icing from his birthday cake all over his face, just like “typical” children.

HOLIDAYS

My son likes to trick or treat in costume, just like “typical” children.

My son likes to open Christmas presents, just like “typical” children.

CLOTHES

My son wears clothes, just like “typical” children.

PLAY

My son likes Ernie and Sesame Street, just like “typical” children.

My son likes Blue’s Clues, just like “typical” children. Ok I lie. He LOVED Blue’s Clues.

VIDEO GAMES

My son likes to play video games, just like “typical” children. (This picture isn’t great but it’s him playing his Vmotion.)

OUTDOOR ACTIVITIES

My son likes to ride his bicycle, just like “typical” children. Actually he LOVES that to.

WONDER

My son is amazed by certain things, in the same innocent way that “typical” children have.

NOISE AND SOUND

My son likes noisy toys, just like “typical” children.

MUSIC

My son likes music, just like “typical” children. He prefers rock and roll, like his mother. His favorite band is Hinder and if he hears it he’ll sing along with you and when you’re done say “you rock”.

SLEEP

My son falls asleep right in the middle of doing something, just like “typical” children do.

Even in the middle of a game of cards with the adults.

FUNNY

My son has his funny moments, just like “typical” children.
Ok, maybe some aren’t so typical. Some are amazing. Seriously. Not all children want to be sure the family cat wipes their ass.

My son is amazing and he’s made us better people. He represents everything we were missing and never knew we wanted before he was born. I love him with every bit of my being (as I do my typical son) and am thankful for all of the joys he has brought us. His smile can light up a room. He’s happy and loving.

In case you’re wondering why I put quotes around the word typical it’s because every child is typical. Typical for themselves. Children are children, no matter what their needs are. Society places too many labels on people and too much importance on the labels. Every child is special and has special needs - the needs of being cherished and loved and provided the opportunity to reach their full potential, whatever that may be. Children can learn from each other. Children can learn from us. We can learn from children. Everyone in this world is a person of value and deserves to be treated with respect.

There’s a great article on World Down Syndrome Day over on 5 Minutes For Special Needs, as well as a Mr Linky for anyone that’s written about the day or their family.

Mar 21, 2009 | 9 comments | View Post

With inclusion, All Kids Can

You might or might not know that my youngest CJ has Down Syndrome, heart disease, Celiac disease, Alopecia areata, orthopedic problems, learning disabilities, severe speech delays and a hearing problem. Some would say he’s disabled, I prefer the terms differently abled and special needs. No matter what you call it, we as a society have an overwhelming need to increase awareness for all children with disabilities and special needs.

March is Disability Awareness Month. With the goal of making the lives of children with disabilities easier, CVS Caremark has created a program called All Kids Can. CVS Caremark All Kids Can is a five year, $25 million commitment to donate money to community nonprofit organizations that offer programs and services focused on helping children with disabilities learn, play and succeed in life. The money is to help achieve three goals -
1 - to educate the public and increase awareness about matters such as the importance of inclusion
2 - enable all children to play together regardless of ability by promoting the building of barrier free playgrounds
3 - ensuring that necessary medical services and rehabilitation programs are in place

Children are so precious and they deserve to be able to make the most of every day in life. Imagine what a child with disabilities must feel like when they are not able to participate with other children in some way. Inclusion would go a long way towards making these children feel good about themselves, no matter whether it be in the school or at home. I think parents talking more with their children about inclusion and disabilities would really help.

We as parents have a responsibility to teach our children what’s right and wrong. Our children aren’t born with values, they learn them from what they’re taught and from what they see. We teach our children that racial prejudice is wrong. Why aren’t more people teaching their children that all people are of value regardless of their abilities and appearance? My October article on the New Jersey Moms Blog touched upon this very subject.

A tip for parents. Open conversation with your children. Let them know that disabilities aren’t anything to fear. Teach them not to label others. Teach them to think before they speak. Teach your children to be open minded and compassionate. Teach them that disabled children are people that have value and feelings. Teach your child to be a person you’ll be proud of – the kind of child that is able to see past the differences and see that everyone has feelings and a right to feel valued, happy to help someone who needs a little assistance, and willing to stand up for someone who needs a friend. Teach them that with inclusion, all kids can.

Thanks to Twitter Moms for spreading the word about the All Kids Can campaign!

Mar 10, 2009 | 10 comments | View Post

Alzheimer’s Association Memory Walk

I’ve written previously about Alzheimer’s and how it relates to my family. My grandma almost certainly had it before she passed, but back in those days we knew so much less about it. Odds are higher that my youngest son may develop Alzheimer’s because of it’s association with Down Syndrome. I pray every day a cure is found, not just for my son but also for the countless families that Alzheimer’s touches in so many ways. Someone is diagnosed with Alzheimer’s every 71 seconds and it is the sixth leading cause of death in the US.

The Alzheimer’s Association holds the Alzheimer’s Memory Walk every year in order to increase public awareness and to raise funds for Alzheimer research, as well as care and support for Alzheimer’s patients and their families. People of all ages can participate by walking a couple of miles for a walk held in their area.

There are walks in more than 600 communities across the United States. This year is also the first year there will be an overseas walk, formed by members of US troops. Organizing walks in support of the largest fund raising event in the states for Alzheimer’s is no easy task. Team Captains are always needed to help recruit, promote, fund raise and keep things running smoothly so please consider signing up to be one.

I’ve always been a believer that together, as a society, we CAN all make a difference. Don’t let an opportunity to impact thousands walk on by.

Sign language

As you may or may not know, my youngest son has Down Syndrome. His speech is quite delayed and he gets frustrated. Lately we have been thinking that we need to focus more on sign language, which we know little of. I was checking out the Signing Time website and got to thinking that this might be a great way for the whole family to learn how to sign together. I’m actually entering a contest on Sassyfrazz’s blog where a set of Signing Time is the prize, so I’m really hoping I win. I think we’d all benefit from it, but particularly my youngest son because he’d have a much easier time communicating with others. Wish me luck!

Feb 18, 2008 | 2 comments | View Post

Good stuff, Jersey style

My pal Skeet writes Share Some Good Stuff, which is a weekly roundup of good news submitted by readers concerning events that happened in their area.

My good news for this weekstems from an article I read on the NJ Herald recently.

In Sussex County, about an hour and a half from here, a new combination training, work program and business is opening in January. It’s being touted as a social entrepreneurial program and it’s called Arthur and Friends. Wendie Blanchard was inspired to begin this endeavor because of something her nephew Arthur said. It all began with a conversation about work, job satisfaction and dreams. Now before I go further, you should know that Arthur has Down Syndrome. In the conversation, Arthur told his aunt that he wasn’t happy with his work. He asked his aunt about her dream job and upon hearing her answer asked her why she didn’t do it because she could make choices about matters such as these where he had no choice. Wendie Blanchard was so touched that she wrote a business plan and after receiving support from the Department of Labor and the Northwest New Jersey Community Action Program and getting a grant, Arthur and Friends was born.

Arthur and Friends will provide business and employment training to disabled adults. Participants will be learning the many aspects of business, in this case hydroponic farming. It is the first program of its kind in the county. The program has been so well received that Wendie Blanchard is optimistic with continued growth it could become a state wide or nationwide model to provide vocational services for the disabled.

Congratulations Wendie Blanchard, for fulfilling your dream and caring about others whose feelings, dreams and self worth are frequently dismissed. I hope you and Arthur both enjoy the new experience, and that it is wildly successful. Good luck!

Dec 27, 2007 | 2 comments | View Post

North Bergen NJ honors Down Syndrome Awareness month

This is definitely my feel good story of the day, if not the week or more. This story is close to home for me for two reasons - because I live in NJ and because my eight year old son has Down Syndrome. For anyone that doesn’t know, October is Down Syndrome Awareness month. I was surfing the web and found a story from the Hudson Reporter informing readers that in honor of Down Syndrome Awareness month, the Township of North Bergen NJ has made a proclamation honoring over 300 area residents with Down Syndrome. I found it touching because in a society where people stare, distance themselves, speak without thinking, judge others and mistreat others, here is an entire township trying to ensure that these residents know they belong. Not only could other townships learn from this, so could much of society.

Oct 15, 2007 | 3 comments | View Post

Friday’s Feast 160

Appetizer
When was the last time you visited a hospital?
I was discharged from the hospital on 08/08/07 after major surgery

Soup
On a scale of 1 to 10 with 10 being highest, how ambitious are you?
Hmmm. Depends on what it’s in regards to. Overall, 7.5.

Salad
Make a sentence using the letters of a body part. (Example: (mouth) My other ukelele tings healthily.)
(boob) My brother is a boob. (Noone said only real body part names, did they…)Main Course
If you were to start a club, what would the subject matter be, and what would you name it?
The subject would be for children to teach understanding, compassion and acceptance of other children with Down Syndrome.

Dessert
What color is the carpet/flooring in your home?
Depends on the room. Living room is beige with speckled berber on hardwood.
Oldest son’s room is beige (and really worn, needs to be replaced).
Youngest son’s room is deep blue (and stained, needs to be replaced).
Dining room is wedgewood blue and white area rug on hardwood.
Kitchen is gross light colored lino. (I want to replace it, are you seeing a trend?)
One bathroom is multi colored tile, the other is soft grey tile.

Sep 14, 2007 | 5 comments | View Post

I’ve come a long way baby

So at one of the forums I visit I noticed someone was using the word retarded in that way that ignorant people do - incorrectly and negatively. I didn’t leave and I didn’t lose my temper. I posted asking her why people used the word in that way implying something bad.

She replied back she “don’t know why, it’s a habit and sorry did you want it deleted.”

Which lead me to this reply - “you don’t have to delete it on my account. People do have the right to free speech. But to put it right out there, since you asked, yes it does offend me. I posted the question to you because I notice you’ve written it several times since you joined, and I’d not noticed it much at all before then. I have spent the better part of six years wondering why people say it. I have a son with Down Syndrome and I can’t understand for the life of me why people imply retardation is bad, because that implies my son is. To retard means to slow. It does not mean stupid, bad, ignorant, or the many other things people seem to associate with it. I have evolved in the past couple of years. While hearing it still upsets me, it no longer makes me want to hurt people. Instead hearing it makes me want to educate the people that say it and wipe out their ignorance.”

She replied she was sorry and didn’t know what to say and left the forum.

So I’d say maybe this is the better way to handle it. -
Educate the ignorant. And if that doesn’t work maybe I’ll embarass them and let the whole world know how ignorant they are.

Dad, this is really different from how I reacted to the bowling alley situation a few years ago. Yes it did bring tears to my eye, but I felt better for staying calm and standing up for something.