Finding Support

**This post was originally written on 10-14-2013**

When we go through rough patches in life, we turn to people for help, for support.  But what if no one understands what you're going through?  What if no one around you can relate to your hard times?  No matter how hard people try to be there for you and give you tips and advice, sometimes it's just not enough.  You need people you can talk to who really understand your struggles and frustrations.  You need people who will listen to you vent and know exactly what you are talking about.  You need people who understand that no matter how much you gripe and complain, you don't want to take anything away from your life, you just want to find helpful solutions to make it better.

Getting a Down syndrome diagnosis, before or after birth, can be extremely hard for some families.  A lot of people who receive a diagnosis, actually know very little about Down syndrome and possibly have never met an individual with Down syndrome.  And the scary truth is, a lot of these families can't even turn to their own doctor for up-to-date, accurate, information about the life of someone with Down syndrome, because what they know is very little or out-dated all together.

The life of a person with Down syndrome has changed DRASTICALLY over the years.  There are so many resources available today to help individuals with intellectual disabilities grow into independent adults.  Having a child with Down syndrome is not the end of the world.  It isn't a death sentence for your family or your child.  There are no limits to what individuals with Down syndrome can do.  Each person is unique in his or her own way.  Yes, things take a little more work and sometimes require modifications in order to learn what is needed in life, but individuals with Down syndrome DO learn.  The sky really is the limit.  Just because your child has a diagnosis of Down syndrome, never let anybody tell you that something isn't possible, anything is possible! 

Some support groups that I have found helpful so far on my journey with Down syndrome are:

*  The Down Syndrome group on Babycenter.com
*  The Down Syndrome Mommies group on Facebook
*   Parents with Children/Adults with Down Syndrome in Indiana group on Facebook
*  Our Adventures with Down Syndrome group on Facebook
*  Baby Center Down Syndrome Mom's group on Facebook
*  Our local Down syndrome chapter, Down Syndrome Indiana, based out of Indianapolis
*  Our community Down Syndrome Support/Play group here in the Wabash Valley; The Wabash Valley S.T.A.R.S. (Also on Facebook)
*  Family Voices Indiana (Also on Facebook) - which is a family-led organization that provides information, education, training, outreach, and peer support to families of children and youth with special health care needs and the professionals who serve them.  I believe that everyone, or almost everyone, at Family Voices has a child(ren) with special needs and can better understand where parents are coming from.
*  ASK (About Special Kids: Also on Facebook) - This is a place for families and professionals in Indiana to go to “ASK” questions about children with special needs and to access information and resources about a variety of topics such as health insurance, special education, community resources and medical homes. ASK is a connection to family support in the state of Indiana!

All of these support options are places where parents can start asking questions, sharing joys and concerns, get advice and share information with other parents.  There are so many people, from all different walks of life, out there walking the same journey that we are.  All you have to do is reach out and connect with someone.  And most importantly, know that you are not alone!

**If there are other places you know of where families can go for overall support, more so in Indiana, please include them as a comment!!!

The R Word

What would Down Syndrome Awareness Month be without a post about the R word?

The word "retard" and "retarded" were words that use to be used to describe individuals like my daughter Sophia.  In the medical field she would have been referred to as being "mentally retarded", or slow in development.  But today, those words, "retard" and "retarded", are no longer acceptable and are no longer being tolerated by people like myself.

When have you heard these words and felt like the person using them were giving a compliment to someone, or something, else?  Very likely, never.  When people use the R word, it's not used as a compliment, it's used as an insult.  Society has turned the R word into a slang term that means dumb or stupid.  Even in the medical and educational fields the term "mentally retarded" should no longer be used, but instead it should be replaced with the term "intellectual disability", thanks to Rosa's Law.

It's important to me that people not use the R word.  It's important to my family that people not use the R word.  It's important to a lot of people involved in the special needs communities that society not use the R word.  And one day, it will be important to my daughter Sophia that people not use the R word.

As a parent to daughter who has an intellectual disability, I advocate for my daughter every day.  I push for her to be included, accepted, and respected as a person.  This is one less battle that I would like to fight as my daughter gets older.  It's just a word, I get that.  But to me, it's a very powerful word, that holds a lot of hate and disrespect.

There is a campaign called, Spread the Word to End the Word.  This campaign asks people to pledge to stop saying the R word as a starting point toward creating more accepting attitudes and communities for all people.  Language affects attitudes and attitudes affect actions.  Go HERE to learn more about the pledge, and pledge today to use respectful, people-first language!

Selfie Sunday, Buddy Walk Style

Buddy Walk 2014

Sophia and Mommy....hanging out at the Buddy Walk :)

Buddy Walk History

We are gearing up for the Buddy Walk TODAY, so I thought I would repost the history of the Buddy Walk from a post I did last year on October 7, 2013.....

Introduced in 1995 by the National Down Syndrome Society (NDSS), the Buddy Walk was a major breakthrough in promoting the acceptance and inclusion of all people with Down syndrome.  The Buddy Walk has become the premier advocacy event for Down syndrome in the United States.  It is also the world's most widely recognized public awareness program for the Down syndrome community.  It also celebrates Down Syndrome Awareness Month in October.

Chris Burke led the flagship New York City Buddy Walk in 1995.

In 1999, NDSS introduced the Times Square Video to bring attention to the Buddy Walk program and raise awareness of individuals with Down syndrome in a public setting.  Also this year, the Buddy Walk added a fundraising component to raise money for local and national programs and services.  Sophia has her very own fundraising page at: http://www.firstgiving.com/fundraiser/dixie-russell/16th-annual-buddy-walk  And in the past 5 years, Sophia, along with lots of great supporters, has helped raise almost $7,500 for Down Syndrome Awareness!

Some of the programs and services that are given locally, out of Indianapolis, through Down Syndrome Indiana are: New Parent Information & Resource Packets, given to expecting mothers or families who have just welcomed a new baby into their lives sporting that extra chromosome.  Also Educators' Resources to help better prepare you and your child's educational team for the school years ahead.  Social Activities for families to get together, and Support for Research and Advocacy.  Informational and Education Conferences are also organized, as well as Camp HI-Lite Scholarships, which gives school aged and adolescent kids with Down syndrome a one week outdoor living experience.

In 2001, a national Wal-Mart commercial featuring footage of the Buddy Walk in Colorado Springs ,CO aired, which had a large impact in raising awareness about the Buddy Walk.  Many new Walks were organized as a result of the publicity the national program received.  This year, over 100 Buddy Walk events took place!

In 2002, Actor John C. McGinley, most notable for his roles as Perry Cox in Scrubs, Bob Slydell in Office Space, Sergeant Red O'Neill in Oliver Stone's Platoon and Marv in Stone's Wall Street, joined the NDSS as National Buddy Walk Spokesman.

In 2003, the NDSS hired a National Buddy Walk Coordinator to oversee the direction of the program and assist local organizers.  More than 190 Buddy Walk events took place in 49 states and 5 countries with over 180,000 participants.  Raising more than $2.5 million.

In 2004, nine years after the first Buddy Walk was introduced, they went from 17 Walks to now 210 Buddy Walk events, with over 200,000 participants and raising more than $4.5 million.

In 2005, the NDSS celebrated 10 years of the Buddy Walk!  From 1995-2005 over 1.5 million people participated in he Buddy Walks, and more than 250 Buddy Walk events took place raising more than $5.5 million.

In 2008, the National Buddy Walk Program welcomed it's first regional and national partners: Regal Entertainment Group; Knology; and the American Physical Association, Section on Pediatrics.  The Buddy Walk public service announcement, staring TV Host Nancy O'Dell, TV Host Meredith Vieira, Actor John C. McGinley, Actor and NDSS Goodwill Ambassador Chris Burke, and Actress Andrea Friedman, was played nationwide at all Regal Cinemas before every movie for two weeks to celebrate Down Syndrome Awareness Month and the National Buddy Walk program.

In 2009, NDSS held the first Buddy Walk Conference in Columbus, Ohio where Buddy Walk organizers were able to learn from NDSS leadership and share best practices with one another.
The first Buddy Walk held on a military base in a combat zone took place this year at Camp Phoenix in Kabul, Afghanistan.  2009 was also the year Sophia was born and our first year participating in the Buddy Walk held at Celebration Plaza in Indianapolis, IN.  This year we raised $825 for Down Syndrome Awareness, and had our first team of 15 walkers for the Buddy Walk!

In 2010, Sophia's Stars raised $1,355 for Down Syndrome Indiana and had a total of 24 walkers support us at the Buddy Walk!

In 2011, more than 250 Buddy Walk events took place with over 285,000 participants raising more than $11 million.  Sophia's Stars raised $1,495 for Down Syndrome Indiana this year and had our best year for walking support with 36 friends and family showing up to walk in the Buddy Walk!

In 2012, the Buddy Walk was ranked in the top 30 fundraising events nationwide for: money raised, number of participants and best series event since 2008 according to Run Walk Ride Fundraising Council Survey results.
Sophia's Stars raised the most money to date this year, with $1,775 in donations for Down Syndrome Indiana!  We had 26 walkers supporting Sophia in Indianapolis last year for the 15th annual DSI Buddy Walk!

Our family looks forward to the Buddy Walk every year.  It's a chance for our closest friends and family to come together and support not only Sophia, but all individuals with Down syndrome!

** For more information on the history of the NDSS Buddy Walk you can visit HERE.  Also, check out my links highlighted above for more info!

  

Five Years Walking

A WALK DOWN BUDDY WALK LANE.........

Our First Buddy Walk.....October 2009 

Buddy Walk # 2....October 2010

 

Buddy Walk # 3.....October 2011

Buddy Walk 4....October 2012 (the only year we recycled our shirts.)

Buddy Walk 2014....5 years walking for this cutie!

Buddy Walk #6......pictures to come!

Do They See It?

*This post was originally written on 10/15/2012*

When Sophia was first born and handed over to me to hold briefly, I didn't notice any of the features that typically indicates Down syndrome.  I had no clue that shortly after her birth, doctors would come back into that delivery room and tell me that they suspected a Down syndrome diagnosis.  I know that I looked at her as I held her in my arms.  I remember looking into those big, beautiful, blue eyes and being scared out of my mind that I had just had a baby, 6 weeks early, but I also remember feeling happy and excited, because as far as I knew, everything was okay.

There are some distinct physcial features that are more common in children who have Down syndrome and are what doctors look for when they suspect that a baby may have Down syndrome.

1.  Almond Shaped Eyes: Where the outer corner of the eye will be turned up rather than down.  It is similiar to that of someone of Asian descent and will most likely be the most predominant physical feature of Down syndrome as the child grows.

2.  Brushfield Spots: Are the white flecks that can be seen close to the periphery of the iris (the colored spot) of the eye.

3.  Flat Proflie: There isn't much curve from the nose, cheeks or mouth.  The cheeks also tend to hang when looking at the child from the front, which is due to poor tone in the muscles of the face.

4.  Protuberant Tongue:  Due to either a small mouth and a large tongue or again just poor mucle tone in the tongue, some individuals with Down syndrome tend to let their tongue stick out of their mouth more until they build up that tone to keep it inside their mouth.

5.  Single Palmer Crease or Simian Crease: This is a single crease across the palm of  the hand.  Less then half of babies born with Down syndrome have this.

6.  Hypotonia: Is low muscle tone.  Babies with Down syndrome tend to be more floppy or limp feeling.  This affects every muscle from face to ankles.  Which is why therapy is SO IMPORTANT from the very begining.  Your muscle tone affects EVERYTHING!  The way you move, talk, eat and so much more!

7.  Sandal Gap Toes:  A wide space between the big toe and the second toe.  Which makes it perfect for wearing sandals :)

Not all babies with Down syndrome are born with all these markers and just because your baby has a few of these markers, that doesn't necessarily mean that your baby has Down syndrome.  These markers are just more commonly found in babies who rock that extra chromosome.

Looking back at pictures of her right after birth, I see it.  And sometimes I wonder, how did I not see it then?  When you're walking down the street, or in the store, and you see someone with distinct features, you are usually drawn to that first.  You just know that something is "different" about them, even if you can't actually pin point exactly what it is, you just know. 

I sometimes find myself wondering when we are out in public places, do they know that Sophia has Down syndrome?  Can these people really tell?  Because most of the time I don't notice.  That may seem kind of strange, but what I mean is, Sophia doesn't scream, "I have Down syndrome" to me.  She just screams, "I'm your daughter, a little girl, a person, who has hopes and dreams and can do anything that I put my mind to.  I have feelings and I want to be accepted because who I am is exactly who I was supposed to be." 

Last year, on World Down Syndrome Day (3-21), I went to Jayden's preschool and read a book about Sophia and her extra chromosome to the class.  It was simple and more than anything it said, it's ok to be different.  Just because someone is different than you, they still have feelings like you do and it's ok to be friends with them.  I'm not sure how much those 5 year olds got out of it, but I plan on following both of my kids through school, if the school will let me, and reading this book to both of their classes year after year.  My thoughts are, you can't blame someone for doing something that they don't know is wrong.  Children learn their behaviors from a lot of places, and if they are getting negative information from somewhere else, like that individuals like my daughter are weird and don't deserve their friendship, then I want to set the record straight and let them know that she is just like them and that they could only be so lucky to be her friend!

   

Wordless Wednesday: Weekend Bonfire