Blog Archives

M is for Mosaic Down Syndrome

4/15/2015

A to Z Blogging Challenge on The Road We've Shared

Have you heard of Mosaic Down syndrome but wondered what it was or how different it is from Trisomy 21?

Has some one asked you if you can have "a little bit" of Down syndrome?

We learned about mosaicism at the 321eConference and we asked our friends at IMDSA to share some of that information with our community.

President Brandy Snow tells us what mDs is and how IMDSA helps "Unite unique people in a unique world."

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Local!

4/14/2015

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Everything Starts at Home

This week there is the Buddy Walk on Washington. Big things are being done on the big stage. But, what’s happening at home in your town? The local groups have their feet on the ground, working for the families of their community, helping, teaching, and reaching out.
As an example, let me tell you about the Ds group in my city, the Down Syndrome Alliance of the Midlands. As of two years ago I knew nothing, really, about what they do. So I called and...

First, They took the time to meet with me and answer my questions personally about what they are doing as an organization. Where are their fiscal priorities? What are their policy priorities and what resources do they offer families in our community? They provided open answers to these questions without doublespeak, this is very important to me. I learned:

Legislation on both a national and local levels is a top priority for the current board. The president of the local org is articulate and passionate and she backs this up with a bit of muscle.
Efforts are made bring together families to support one another, via events and online groups.
The local org pursued and attained grants to bring more education and top experts from around the country into our city to teach and discuss. This is offered free to families. This is HUGE to me.
Membership is FREE. (Of course the organization has fundraising and monetary needs, but this no one is left out due to financial limitations.)

See what I mean about muscle?

All this month we on The Road have shared and are sharing notes about many of the national organizations, their goals and their work. Did you know that there is a national group that helps the local groups? Down Syndrome Affiliates in Action. The DSAIA Director Deanna Thorpe joins us today to explain:

Why the Local DSA is So Important

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Kindred Spirits - The Road We've Shared

4/13/2015

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By: Stephanie Holland

A to Z Blogging on The Road We've Shared

As humans, we all have a desire to connect with others. Sometimes, we long to find companions who understand what we have gone through – someone who “gets it.”

The Road We've Shared is a place where kindred spirits can come together to learn, share, advocate, and just hang out and hear stories that let us know that we're not alone.

Personally, I like the definition of kindred spirits that I found on The Urban Dictionary:

Kindred Spirits

Kindred Spirits are two people that make a special connection by sharing a bond that has joined them by the means of an experience that has drawn them together on a higher level of consciousness. This connection can be from the same experience at the same time or two separate experiences similar in nature.

Have you ever heard someone say “wait until you have children, THEN you’ll understand?” Parents belong to a sub-group of our society that gives them a different outlook on things than people who don’t have children. If you have one or more children who have a label, who qualify as “special needs,” then you belong to a smaller sub-set of that group. You understand that when someone says “I have an IEP meeting for my daughter today” it could be a very stressful time for them. When we see a child who we think may have the same label as our child, we often give the parents a knowing smile – a look that says “we’re in the same club.”

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Justice for All

4/11/2015

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By: Eliana Peck and Stephanie Holland

Justice is something of a hot topic lately. News reports of another person with a disability being mistreated or lost in the system seem to appear daily. One organization that focuses solely on finding justice for our loved ones is the National Center on Criminal Justice & Disability (NCCJD).

Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers.
~ David Perry - The Atlantic

Why do police keep seeing a person’s disability as a provocation? Cops keep wrongfully killing the intellectually or psychiatrically impaired. ~ Harold Braswell - Washington Post

The National Center on Criminal Justice & Disability

We asked the The Arc NCCJD to tell us a bit about what they do, and how it relates to a cause near and dear to us here on The Road - #JusticeForEthan. Our thanks goes to Eliana Peck and the rest of the staff at NCCJD for what they do and for taking the time to write this post!

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I is for IDSC Facebook Groups

4/10/2015

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By: Beth Sullivan and Stephanie Holland

I for IDSC Facebook Groups on The Road We've Shared

While we're talking about collaboration in the Down syndrome community, we have to highlight how social media has made it much easier for individuals to reach out to others in similar situations. The International Down Syndrome Coalition (IDSC) has created the space for us to do just that!

We asked IDSC President, Beth Sullivan, to tell us a little bit about one of the unique strengths of IDSC: their Facebook groups. Thanks Beth!

International Down syndrome Coalition on The Road We've Shared

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H is for Happy!

4/9/2015

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By: Stephanie Holland

If by chance you're not happy right now - we've got just what you need!

Today we look at videos that include adults who have Down syndrome, and of course, we start with the one that went viral last year on World Down Syndrome Day.

Okay, you can tell us, were you dancing or at least clapping along?

Possibilities

The videos that get the most attention may have a catchy tune, or make us think about the possibilities for our loved one - or both!

People We Know

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GrassRoots Advocacy

4/8/2015

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By: Edward Rhodes & Stephanie Holland

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.
~Margaret Mead

Today we look at grassroots advocacy and what can happen when - as Margaret Mead said and fictional President Bartlett borrowed- a small group of people become committed to change.

#JusticeForEthan

Our guest blogger today, put down his camera long enough to write about the process of making "Justice For Ethan - The Movie" and what he sees as #EthansLegacy.

Over the past year and a half this project has taken on a life of it's own. Documenting the progress and momentum created by advocates and legislators in Maryland has been incredibly rewarding. The search for answers has taken the place of accountability working toward addressing the lack of training our civil servants receive on how to interact with people with disabilities.

Read on for more of his thoughts.

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Finding Forever Families!

4/7/2015

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You know, for years (YEARS) I kept a bassinette in my garage, just in case someone left a baby on my doorstep. No one ever did, likely because in this day and age, it doesn’t usually work that way. (Fortunately, I should add.) Nope. Children whose birth parents are unable to provide for them are a part of a system, a system I was frankly intimidated by and afraid to be involved in.

I have recently learned that there are so many helpful resources to enable families to adopt, and today we are going to focus on a few organizations that are ready to help families adopt a child with Down syndrome.

Through the 321eConference I listened to two adoptive parents tell about their experience and the resources available through the National Down Syndrome Adoption Network. The NDSAN serves families in all 50 states and works to find Forever Families for children. The NDSAN mission “is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.”

Sometimes adoptions are arranged prenatally and sometimes the children come through foster care. The circumstances vary as widely as the beautiful families they serve. There are open adoptions or closed. There are two primary constants: The NDSAN wants to help find and make the best match between a child and a family and every child needs a safe and loving home.

What About The Cost? (Keep Reading)

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The Evolution of Down syndrome Support Groups

4/6/2015

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By: Stephanie Holland

The Evolution of Down Syndrome Support Groups

E is for Evolution, and the story of the Down syndrome community is all about evolving.

From the science to society's views, to the way we're able to connect and support each other - everything has changed dramatically in just one generation.

What's in a Name?

The oldest organization in the United States serving children and adults with Down syndrome and their families... was founded in Chicago in 1960 by Kay McGee.

What started out as the Mongoloid Development Council (MDC) in 1960 was changed to National Association for Down Syndrome (NADS) in 1972.

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C is for connected Ds-Connected that is!

4/4/2015

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By: Stephanie Holland ***Update by Sujata Bardhan, Ph.D., Scientific Program Manager, DS-Connect Registry Coordinator

C - A to Z Blogging Challenge - The Road We've Shared

One great example of how the community comes together for the greater good is the collaboration that has happened to create the Down syndrome registry. The funding comes from NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), but ongoing input comes from parents, families, and representatives from every corner of the Ds world.

DS-Connect®

DS-Connect is a secure database that stores health and demographic data about people who have Down syndrome. The information is anonymous and helps researchers find the information they need to create new studies and work on projects to improve the health of people living with Down syndrome.

C is also for Capone -
Dr. George T Capone that is

During the recent 321 eConference, I was in the audience when Dr. Sujata Bardhan explained how the registry works and why everyone should get DS-Connected!

Near the end of her talk, she played the video that can be found on the NIH website. I was so impressed by David Egan, a self-advocate who talks about the importance of research.

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M is for Mosaic Down Syndrome

Local!

Everything Starts at Home

Why the Local DSA is So Important

Kindred Spirits - The Road We've Shared

Justice for All

I is for IDSC Facebook Groups

H is for Happy!

Possibilities

People We Know

GrassRoots Advocacy

#JusticeForEthan

Finding Forever Families!

What About The Cost? (Keep Reading)

The Evolution of Down syndrome Support Groups

What's in a Name?

C is for connected Ds-Connected that is!

DS-Connect®

C is also for Capone -
Dr. George T Capone that is

The RoadMap

Categories

Archives

Stephanie:

Mardra:

Everything Starts at Home

Why the Local DSA is So Important

Possibilities

People We Know

#JusticeForEthan

What About The Cost? (Keep Reading)

What's in a Name?

C is also for Capone - Dr. George T Capone that is

The RoadMap

Categories

Archives

Stephanie:

Mardra:

C is also for Capone -
Dr. George T Capone that is