The Ordinary Life of an Extraordinary Girl

Thanksgiving 2014

2014-11-26T08:48:00.001-07:00

When I was a little girl I was often asked “what do you want to be when you grow” and although my answer changed often and still does change many of my dreams for my future were realized.

When asked what Alex “wants to be when she grows up” she answers just like I did. She wants to have a husband, a job and lots of friends. She wants to play sports and participate in community activities, she wants to choose her own future and be a part of it. We will honor this.

But, for many of our young adults today choice has been compromised. I do not mean to offend anyone, but in my humble opinion our children’s’ future has not been compromised by families or individuals it has been compromised by the system and left families feeling depleted and scared.

When a child with a disability starts school an individualized education plan is set-up. This is generally a great thing and enables families, the child and the educators to put the right supports in place for the child to succeed in school and hopefully their rightful classroom. When the child gets older he/she is included in the planning (if done properly) and the “nothing about me, without me” strategy employed.

But an individualized education plan or program is just that..a plan or program. It is a snapshot in time that does not address the “what do you want to be when you grow up” question that is part of every child’s education. When our children get to middle school the IEP plan sets a goal of "graduating" to the transition program. Starting at age 14 our IEP stated that the family (not the child) has been advised to contact the local CCB (state funded agencies that provide services for people with disabilities) and be put on the very long wait list for adult services.

Alex was never asked if she wanted to go to college, never advised if she got the right number of credits she could graduate from high school with her peers. Alex was never asked if she wanted to be in the school play or play sports, instead she asked, and her wishes have been honored.

Alex was never asked if she wanted to “graduate” to a segregated classroom with nine other people with disabilities and learn about cooking. She was never asked if she wanted to get on a bus with nine other people with disabilities and go to the bank to learn about money. This was all assumed on her behalf. But we were lucky and although Alex was never asked a lot of things, she still knew this was not “what she wanted to do when she grew up” and with our assistance it was removed from her IEP.

As far as her future after high school, “when she grows up” Alex was never asked if she wanted to live in a group home and work in a segregated job. She was never asked if going to a day program with people with disabilities is what she wanted for her future. This was all decided by the system before she could even speak. Alex does not want this “when she grows up” and is not on a long wait list for adult services. Today she is a sophomore in the TAP program at the University of Cincinnati. She lives in a dorm, travels by herself and is only home for holidays,

The system is changing, and this is my thanks for this Thanksgiving season. Parents before and after me are listening to their children (they always have), and hearing what their kids “want to be when they grow up”, and demanding these dreams be honored. And as we ask for choice and the support to live our choice the system is growing up too and hearing us.

Happy Thanksgiving!

Originally published November 16, 2012, the sentiments are stronger today than they were two years ago.

What do you see?

2014-05-08T08:25:00.000-06:00

When Alex was born we heard all the dire predictions from some of the professionals:

Low muscle tone
Lack of coordination
Poor eyesight
Slow reflexes
Challenges with weight
Delays in processing, communicating and more

We also heard the great things from many professionals and even more parents:

Physical therapy and being active in sports helps with low muscle tone
Stay active and coordination and reflexes will improve , or may not even be a problem
Eyesight is very dependent on family history
Exercising and eating well will help manage weight
Yes, there are delays but EVERYONE learns at their own pace

We are a sports family and took a lot of this advice to heart. Just like her parents and just like her siblings, Alex has been involved in sports since a very young age.

Alex played and was included in the local recreation program soccer and softball leagues. She played basketball in middle and high school.

She learned to horseback ride, swim, ice skate, ski (search South Korea to learn more), snowshoe and has competed at the highest levels in skiing.

Alex took swimming and basketball classes at college (and was fully included) this year and received the highest accolades on her attendance, participation and dedication.

My sport of choice is tennis and has been since Tommy was three and I finally felt I could have some time to myself. I was able to resume playing after a long hiatus 15 years ago, when Alex was six. And just like her older sister Alex wanted to learn to play tennis. She started lessons when she was eight and has continued off and on for years.

This summer Alex announced she wanted to start playing tennis again....so I signed her up for a lesson and was amazed at her muscle memory, so much so that the pro declared she had better form than me!

So when you look at his video - do you see low muscle tone, processing delays, slow reflexes or lack of coordination? I don't, I see a beautiful young lady taking her first tennis lesson in four years and getting excited again about the game.

Caveats...Alex will only hike with me under penalty of death, she can not ride a bike and she gained the freshman 20 (twice) this year at college. We are relearning about healthy eating and healthy choices.

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 here

The Top Ten ways to know Alex is home for the summer

2014-04-28T09:12:00.002-06:00

10. There are clothes all over her bedroom

9. Degrassi is the top choice on my recorded TV shows

8. Bowling is an important sport

7. My schedule is the topic of our nightly conversations

6. Alex talks about her 21^st birthday every day (June 19)

5. Alex talks about sweet and sour chicken every day

4. We spend an inordinate amount of time talking about our next meal

3. The phrase “Mom , when I was at school”….is part of our morning conversation

2. I remember why Alex’s nickname is bossy boots, and finally

1. Hugging is part of my life again!

Where do you live?

2014-04-13T10:03:00.000-06:00

This past week I had the privilege of taking the Valley Life for All Leadership Class to Denver to spend two days with the Colorado Developmental Disabilities Council (CDDC). We are one of three communities in the State of Colorado that receive a grant from the CDDC to design and deliver a Leadership class for families with children with disabilities and self-advocates or up to 15 participants.

We spent a day at the State Capitol meeting legislators, learning about advocacy and seeing the faces behind the people who manage the programs that provide opportunities for people with disabilities to participate in the community. We also looked at a house bill around affordable housing and learned how to prepare testimony to support or oppose social policy as it impacts people with disabilities. This is the second year of our grant and for the second time I walked away humbled and proud that my path has led me to this life.

Picture compliments of https://www.facebook.com/ZachKorbelPublicSpeaker

On a different note, I often try, yet very rarely succeed in eavesdropping on Alex’s conversations. I wonder what she says, how she says it and how her conversational skills are with people she doesn’t know. I wonder if her humor, sensitivity and love of life come through when she talks to people outside her circle. I often wish for that invisibility cloak.

Along those lines, I had the pleasure of driving two of our group members to Denver for the conference as well as picking up another friend mid-way who sits on the council. Based on my experience with Alex I assumed their conversations might be guarded and once again I would walk away wondering what they would have talked about if I wasn’t there.

The conversation to collect the third rider was cordial, mainly pleasantries and shared excitement for the trip. We picked up our new rider and these young women all introduced themselves and covered the basics. I drove on through the beautiful Colorado mountains, listened, day dreamed and realized I had indeed become invisible.

The conversation continued until I heard the “where do you live?” question. A simple question with so much meaning…. It will forever be another of those moments that makes me so grateful to be part of this circle of friends who do not think like I do, do not have the same opportunities I do, yet try much harder than I ever have had to create a life where they feel valued and included. I learn so much every day, always things I did not even know I needed to learn.

You see, when asked “where do you live” all three of my friends answered with three simple words, “I am independent”. Where is not a place for people with developmental disabilities, to these three self -advocates where is how they live, it symbolizes all the hard work they have done to get to a place where they live independently (no matter the physical setting - even if at home) , interact in the community and hold meaningful jobs.

Note: Living independently for a person with a developmental disability is like putting a huge puzzle together. Often we as parents have to coordinate case management services, Medicaid funding for support services and finding the right place. And then there is the lack of employment options……Yet it is doable and very successful. Leave a note if you have a question.

But most importantly it is about having choice and choosing how you want to live. Where is something that is sorely missing in our cities, states and country right now.

Think about it…where do you live? Or better yet, where do you want to live?

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 here.

Thank you to all my circles

2014-04-10T13:38:00.001-06:00

When a child with special needs is born parents reach out to friends, family, service providers and their community. Sometimes this is successful and sometimes we as parents learn that awareness needs to be created first. In my case I become angry at the system and people in the systems that created such barriers for success. But I learned during my journey with Alex to trust in the process. Our paths are not straight, its valleys and plateaus are purposeful and places we have opportunities to learn and grow. And as we continue to learn and grow we create circles of support around ourselves and our children.

Although this term circles of support has traditionally been used in the person centered planning process for people with disabilities, I realized I have unconsciously built very powerful circles around me and this is saving me.

Until two weeks ago when I shared Broken with all of you, I never knew how many circles I had and how many people lived in those circles. To each and every one of you, thanks for reaching out. If I did not return your voice mail or only sent a brief thank you to your message it was because I was overwhelmed. People from all parts of my life responded and getting back in touch with many of you has been the gift of this life changing event. I am humbled and grateful.

I do not mean to turn this into my divorce journal, rather a story of healing, something I learned almost 21 years ago. My son returns from college this week, Alex in two weeks and in mid-May we head to Philadelphia to watch my oldest graduate. In a year I will graduate with a MSW and be able to search for a job anywhere I want. The future is bright if I trust in the process. I am okay.

Thank you from the bottom of my heart.

A little PSA

2014-04-06T09:43:00.000-06:00

I often get emails, facebook notes or tweets asking me to share information about resources, other pages or events. I try to exercise due diligence and share what I can, when I can, hoping that the information may be helpful to someone.

Almost three years ago I got an email from Baby Sign Language and wrote the following post:

June 13, 2011 - Sign Language and Down Syndrome

As I have written in the past, Alex learned sign language as a very young baby. It saved us and her months of frustration as she figured out how to get her brain and month to coordinate to speak. Instead she used her hands, and we understood her wants and needs. Following is a guest post from Baby Sign Language. I highly recommend it!

Children with Down syndrome are often quick to develop their receptive language skills. They understand what we adults are saying, sometimes before we really want them to! But expressive language can be a whole different story. And when children can’t express themselves the way that they want to, it can be incredibly frustrating for both children and caregivers. Read more here

This week I got the following follow-up email:

I want to thank you for your support and for sharing our website with your readers The natural progression from learning how to sign and speak is learning how to read, and that's why we developed our new website SightWords.com. We want to provide parents and educators with free digital and printable tools to help them teach young children to read.

SightWords.com has many free resources including:

-Grade-specific flash cards of more than 500 Dolch and Fry sight words

-Detailed instructions on how to teach children new words

-10 fun learning games

-Full tutorial on correction techniques

-Generators to make fully customizable Bingo cards, Snakes and Ladders game boards, Old Maid card sets, and more.

Everything in sightwords.com is absolutely free and designed to help your child learn how to read effectively from pre-k up to 4th grade. We'd love if you could help us get the word out about these great free resources by letting your readers know about SightWords.com.

Again, thank you for your support and for continuing to provide your readers with useful, quality content.

Consider it done!

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 here.

Broken

2014-03-30T15:08:00.001-06:00

My family is broken. I am broken and my kids are broken. Life will go on and we will all survive but our lives have been irrevocably changed by a single act of selfishness. On January 29 my husband of 25 years called me from a business trip declaring he was not happy and wanted to spend the rest of his life dancing, doing yoga and living on the road. He no longer wants to be a husband and by default has become an absentee father. Those are the facts.

What used to be

I could spend a lot of time analyzing John’s behavior – certainly after a year of graduate level social work there are many diagnoses as well an interventions I could suggest, but I will not. In the end, what John did and for whatever reasons are private and I will not bash him in this very public forum. Actually I am quite surprised I am even writing this, but you see I have experience with grief, particularly as it relates to readjusting your dreams.

When Alex was born I grieved for our future. The following is from the first chapter of our book “From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome”.

Grief is a natural process, and I believe the way we learn to accept and embrace the unexpected. We did not know Alex was going to have Down syndrome nor did we know very much about Down syndrome. As with any unanticipated event in our lives this period of adjustment was necessary for John, me and our family.

I now know what we experienced was the grieving process, and admittedly for the first few hours it was about us and the “why and how”. Why did Alex have Down syndrome? Why did this happen to us? How can we tell our families, who were so excited about the prospect of another baby, that ours was different? How do we share our sadness, but still try to put on a happy face? Why, why, how, how, it was almost as if we felt sorry for ourselves.

And here I am almost 21 years later reliving those feelings over and over again. But unlike 21 years ago my grief has not subsided in six weeks, it has ebbed and flowed. My sadness changes with the weather and my kids. Some days are really great and some days I am so consumed by my sadness, my kids’ sadness and failure I can not function.

John called my oldest and youngest at college, in between classes, minutes after he called me and shared the same story with them. He told me was too scared to call Alex and needed me to help him. Here I will be judgmental – all our kids deserve the same respect Alex was shown and my son is suffering tremendously from this. I feel like sometimes we can not escape this darkness.

However, I know I will escape the darkness and I know my kids will all be fine. I have lived this before, and learned how the birth of a child with Down syndrome became a life of happiness, joy and love. From Alex we learned what life can be when you realize that your path is different than you thought, when you embrace change and trust in your higher power. Grief is only a flicker in time, and although it seems like an eternity, it will lift and the world will be full of light. My kids will be happy and healthy, I will grow old with them and their kids and I will feel completely fulfilled. And this is what keeps me going on the darkest days until I can remember my marriage and husband as successes not failures.

My family, friends and kids have been kind, and there beside me. When Alex was born I did not know how to tell the world, and gradually day by day let people know. In the end I wrote a letter to everyone and the outpouring of love and support fueled me for the days and nights ahead. And today 20 years and nine months later I share again.

My family is not broken. I am not broken and my kids are not broken, we are merely different.

"The Road We've Shared"

2014-03-28T21:39:00.000-06:00

I love it when I have the opportunity to guest post, especially when it is about our book!

A few weeks ago one of the founders, Mardra, of a great new website and facebook page "The Road We've Shared" asked me to share about our book - the why and how. Needless to say, I was delighted. I love talking about our journey.

So here it is...

Today we are sharing this story from Gary Bender who answers her own question:

Did I really write a book?

I started our blog, The Ordinary Life of an Extraordinary Girl on August 26, 2009 with the following introduction, “Today I decided I wanted to chronicle the life of Alex, a 16 year old high school sophomore with Down syndrome. I am hoping to share the triumphs and challenges of raising this remarkable daughter. I choose today to start because it is her third day of school and the first day of football practice. I plan to finish this narrative at the end of July 2010, which coincides with the conclusion of the National Special Olympics in Lincoln, NE where Alex will be representing the state of Colorado in track and field”.

I immediately became hooked on writing and almost 550 posts and a book later I still love writing and blogging about Alex.

During the first year of blogging I began to realize I had a story to share. Alex is now 20 and a freshman in college. This did not happen by itself but was the culmination of years of advocacy and outright battles. But all along the way we honored Alex and her dreams for her future. We tried to create an environment where she could succeed and out of that took an unanticipated journey through the many systems that are in place. We traveled through the medical, educational, and state and local funding systems. We learned that was not enough, today’s systems are antiquated and do not meet the needs of this generation of children. As we followed in the footsteps of others who navigated and worked to improve the systems and we created our own footsteps between and around the systems and honored the work of so many past parents.

We share our journey in verbs.

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome is organized according to a list of verbs that has defined our experience. As the title suggests, the verbs begin with "Grief" and culminate in "Celebration." The verbs numbered from 1-10 plus the bonus, are relatable to parenting and, frankly, life in general. There are a lot of great reviews here.

I often wonder what possessed me to think I could write a book or even why I would want to write a book.

A book is an investment in time, money and ego, all of which have been impacted by sharing our story in such a public forum. I wrote the draft using excerpts from the blog and hired a professional editor. I was foolish enough to send the manuscript out to a few publishers, all who rejected it with a nice letter about “receiving hundreds of submissions” so I self-published.

Despite the rejections and the start-up costs ($3,000) the reviews have been amazing and I do not regret this decision at all. I do have a
story to share, one of hope and celebration and if I can help new families learn that their futures are bright I will feel fulfilled.

You can find Alex and Gary on the blog: The Ordinary Life of an Extraordinary Girl.

Also on Facebook and Twitter.

We are delighted she has shared the story about choosing to share her story!

Of course, the best part is that we will continue to hear from Gary about their journey in the months to come.

Do you have the right information?

2014-03-23T09:47:00.004-06:00

I am so grateful for all the friends I have met through Down syndrome and was reminded of this on WDSD. Sometimes I just feel like yelling Down syndrome is AWESOME from the rooftops, and most of the time I do. So when people and even medical "professionals" talk about prenatal testing and aborting fetuses with Down syndrome I get nauseous.

Read this and get Mardra's essay today - for free.

From http://www.mardrasikora.com/down-syndrome-and-eugenics/:

Is this the last generation of people with Down syndrome?

The Job of a Lifetime

Roughly 24 years ago the universe looked over my resume, took into account my previous experience, my qualifications, and my goals and gave me a job that I was totally – I mean utterly – unqualified for. Parent. And as an added bonus and complete surprise, the universe also immediately promoted me, as a show of good faith, to the role of special needs parent. The application process was cleverly disguised, I won’t bore you with those details but the final result was a new lifelong job with very few personal days, occasional opportunities for “working” vacations, and joyful benefits beyond what I ever expected.

From the Outside, it didn’t look good.

At the time of my son’s birth I was an unemployed, single, barely-in-college student and although my pregnancy came as a shock, my father stood by me, almost singularly, those twenty-one plus years ago. I recently confronted him with the question, “If you knew my unborn child had Down syndrome, would you have pressured me to abort?”
“Who you were at that time?” He paused, “And who I was? Yes.” He was solemn in his honest reflection. Then his expression changed. “Can you imagine?” he exclaimed, the smile bursting from his face, “What a mistake.”
I can tell you over the last few years I’ve put a lot of thought into this question and answer because of the new T21 prenatal testing that gives a diagnosis of Down syndrome and other trisomies at about 10 weeks via a blood test. What does this mean for the future? I mean even within the next 20 years? Down syndrome and eugenics, is this the last generation? Quite possibly, a few years ago it was reported that Denmark, for example, is on track to be “Down syndrome free” by 2030.

When I read this I felt like I had been kicked in the stomach.

For the record, this is not a pro-choice/pro-life argument. I’m talking to a very specific group of people – Women who want a child and the healthcare providers who serve them. Also I am not opposed to genetic testing. I’m opposed to the one-sided conversation that so often follows. When I read the quote that Denmark will be Down syndrome free, I spent weeks venting on paper and compiling notes, research and quotes, and then released the essay “Arguing Eugenics: a case for changing the world” on Kindle. It is for sale at $1.25, however – from March 21 to March 23 it is FREE.

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Thanks Mardra!

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

Resting on World Down Syndrome Day

2014-03-21T09:13:00.000-06:00

Today is March 21, or the 21st day of the third month of the year, 3-21. 3-21 is also a significant number in the Down syndrome community as it represents the third chromosome of the 21^st set, which is the cause of Down syndrome.

Tens of thousands of families with children with Down syndrome as well as people with Down syndrome are wearing T-21 tee shirts, mismatched socks, and donning yellow and blue for Down syndrome awareness day. Me, I am sharing others' posts and liking lots and lots of statuses, but beyond that I am a wall flower at this great big wonderful party. You can read lots of these great stories at the "Day in the Life" series.

Perhaps I am tired, I have advocated for Alex for twenty years and now she is in college. For twenty years every single waking hour was spent thinking about or advocating for Alex. I now live by myself, all three kids are in college and my husband has left. I am on to the next phase of my life, graduate school and a future in policy as it impacts people with disabilities. Down syndrome is not part of my day to day life and to me that is the way it is supposed to be. Kids grow-up and move on, just like everyone else.

So today I am not wearing a T-21 tee shirt or mismatched socks, I am in Boulder picking my son up for spring break. I did not bring yellow or blue, and doubt I will even see anyone who is wearing anything related to Down syndrome today. Today I am merely a mom of three incredible, amazing kids. Yes, we have been graced by Down syndrome and yes it was my life for 20 years, but it is not anymore.

My “day in the life” has passed. I have no idea what will happen when Alex graduates in 2017 and I can’t worry about that now. But for tens of thousands of other families World Down Syndrome Day is important and the awareness these parents are creating today is unmeasurable. I applaud each and every effort as I sit here, take a deep breath and rest. Alex and I did it….we got through school, got through graduation and got to college. It was an amazing journey and kept me on my toes for twenty years, but today I rest and save my energy for the future. I’m sure I will need it.

Today we were noted as number five in the top seven things about Down syndrome in Tiffany’s blog. Check it out and note the reference to our book. It is geared for young families and shares our journey. It may be meaningful to you.

5. College opportunities! Did you know that there are over 250 college programs nationwide that are tailored for kids just like Ellie? How awesome is that? In the weeks after I had Ellie I reached out to the Down syndrome support group on Babycenter, and met Margaret "Gary" Bender. Her daughter Alex is AMAZING. Alex is now 20 and last year she won the bronze medal for downhill skiing in the Special Olympics in S. Korea. Today she is a freshman at the University of Cincinnati in the TAP Program. I read Gary's book From Grief to Celebration in the first month of Ellie's life and it was so encouraging and uplifting for me. It was just what I needed at the time to realize Ellie's future is so bright. Alex is such an amazing role model and I'm grateful for mothers like Gary who have paved the way for new moms like me. What a community of support! There's a great site to find college programs for special needs in your area called Think College. I'm thinking Oregon State needs a program like this.... who knows what'll be available in 17 years ;) (GO BEAVS!)

I also like this video, it says it all to me.

And finally, the superstar who has made this amazing life possible.

Today I am going to celebrate what we have accomplished and how Alex is living her life just like she wants. Alex creates awareness every day..... All by herself.

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

A year and 25 days ago

2014-03-08T11:54:00.000-07:00

A year and twenty five days ago I had just returned from South Korea watching Alex represent the United States of America in the World Winter Special Olympic Games. In honor of this life changing experience and this year Winter's Olympics in Sochi, Russia I am going to republish the posts about the Olympics.

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SOG - The Wrap-up

It is time to wrap up this series on the Special Olympic Games (SOG). We are in NJ for Alex's college interview......more on that later. My mother and her husband are hosting a "welcome home" celebration tomorrow, with their friends and mine. My mother has gone all out and in her party planning made this poster of Alex and her accomplishments (poor photography skills).

Alex and poster size reproduction of party invitation

It's hard to believe only 10 days ago Alex was competing in the World Winter Special Olympic Games in South Korea. Harder to believe, I was there with my oldest daughter, sister and niece. It is now a dream of a magical place where everyone is celebrated for who they are and not what they have... the world I want to live in someday.

The following pictures are taken from Courtney's facebook album entitled "my sister is better than yours". I was fascinated by everything Korean and have these beautiful photos to keep the memories alive.

Second Gate to Buddist temple - you must enter two gates to find truth

Buddist Temple

The largest gramophone and Thomas Edison memorabilia museum is located on the East Coast of Korea

The home of a 17th century wealthy man

And then there are all the heart memories, the ones that make any trip so extra special, the ones that stay alive even without pictures.

My children and best friends together again

Spending time with my sister and niece

The gift of socks because our Dad was a Korean War Veteran

And the best memory of all, my daughter who just happens to have down syndrome, racing her hardest to make her family and her country proud. A memory that I never ever imagined would be in my life.

Alex racing to the finish line

A huge thank you to South Korea and the International Special Olympics for making the dreams of 3,000 athletes from 111 countries come true...And especially a 19 year old girl from Carbondale, Colorado by way of Deerfield, Illinois.

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.

A year and 22 days ago - again

2014-03-06T11:45:00.000-07:00

A year and twenty two days ago I had just returned from South Korea watching Alex represent the United States of America in the World Winter Special Olympic Games. In honor of this life changing experience and this year Winter's Olympics in Sochi, Russia I am going to republish the posts about the Olympics.

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SOG - Some things I learned

Korea is known as the "Impossible Country". Fifty years ago it was an impoverished, newly democratic country with a per capita income of less than $100. Today the reported per capita income is $30,000 make it 29th in the world. The type of growth from one of the worst economies in the world to the 15th in terms of GDP was impossible...until South Korea. This growth has been attributed to hard work, fiscal responsibility, and an export based economy.

Korea is wired, everywhere we went we saw toddlers to grandpas texting on their smart phones.These technological advancements have not only made South Korea more prominent on the world map, but its electronics, cars and even textiles have spread worldwide. This export of Korean goods even includes cultural phenomenon, like the rise of popularity of Korean TV dramas, films, and KPop around the world

CAVEAT - don't believe everything I write, so if you want to learn more it is very easy to find information about Korea, but did you know...

Sleeping on the floor is very common in Korea. "Beds" are often made of two comforters, one directly on the floor and one for cover.

I slept here for 9 nights - it was very comfortable

Koreans like efficiency, although they are not big on recycling. We stayed in an apartment with an upstairs loft and down stairs kitchen/living area. It was small but everything was placed in such a way as to create space. Our towels however....

A normal sized bath towel

The Korean alphabet is very different. Each of the characters represents part of a sound, but the sound is not complete until one or two characters are inserted on top of, underneath or next to the original sound. The keyboard is set up with the hard sounds on the left, and the softer sounds on the right. It is so amazing to watch a Korean type and write.

Korean keyboard

Renting an American friendly GPS is hard. When I made the car reservation I was told all the English speaking GPSs were reserved but they always kept extras at the counter, so we should be fine. What I did not understand was that the man meant an English speaking GPS, that needed to programmed in Korean. We met lots of interesting people in our travels when we stopped to ask to program our GPS

Our GPS Cindy, she spoke nicely but her direction we hard to read

We were challenged by the Korean cuisine as many Koreans are challenged by American food. Rice or noddles are served at every meal along with several types cabbage including kimchee, which is fermented underground One taste is okay the second taste is vile and the third taste did not happen. I was never able to fill up at our meals, and ended up existing on coffee and crackers.

Enough said

And one final thing I already knew...but did you? Alex loves being interviewed, even if it is for another country.

Alex being interviewed by Polish TV

A year and 22 days ago

2014-03-04T11:40:00.000-07:00

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SOG - the DMZ

The story of Korea is a fascinating, thousands of year old history. Today Korea is a country divided at the 38^th parallel, the demarcation decided in the truce fire that ended the Korean War (1950 – 1953). Families are separated by this Demilitarized Zone (DMZ) and are not able to communicate or even determine the welfare of their parents, brothers, sisters, cousins and friends. It is with great sadness that older Koreans speak of this war.

The following is an excerpt from my go to Wikipedia:

The Korean War (25 June 1950 – 27 July 1953) was a war between the Republic of Korea (South Korea), supported by the United Nations, and the Democratic People's Republic of Korea (North Korea), supported by the People's Republic of China. It was primarily the result of the political division of Korea by an agreement of the victorious Allies at the conclusion of the Pacific War at the end of World War II. The Korean Peninsula was ruled by the Empire of Japan from 1910 until the end of World War II. Following the surrender of the Empire of Japan in September 1945, American administrators divided the peninsula along the 38th parallel, with U.S. military forces occupying the southern half and Soviet military forces occupying the northern half.[19]

The failure to hold free elections throughout the Korean Peninsula in 1948 deepened the division between the two sides; the North established a communist government, while the South established a nominally democratic government. The 38th parallel increasingly became a political border between the two Korean states. Although reunification negotiations continued in the months preceding the war, tension intensified. Cross-border skirmishes and raids at the 38th Parallel persisted. The situation escalated into open warfare when North Korean forces invaded South Korea on 25 June 1950.[20] In 1950, the Soviet Union boycotted the United Nations Security Council, in protest at representation of China by the Kuomintang/Republic of China government, which had taken refuge in Taiwan following defeat in the Chinese Civil War. In the absence of a dissenting voice from the Soviet Union, who could have vetoed it, the United States and other countries passed a Security Council resolution authorizing military intervention in Korea.

The United States of America provided 88% of the 341,000 international soldiers which aided South Korean forces in repelling the invasion, with twenty other countries of the United Nations offering assistance. Suffering severe casualties, within two months the defenders were pushed back to a small area in the south of the Korean Peninsula, known as the Pusan perimeter. A rapid U.N. counter-offensive then drove the North Koreans past the 38th Parallel and almost to the Yalu River, when the People's Republic of China (PRC) entered the war on the side of North Korea.[20] Chinese intervention forced the Southern-allied forces to retreat behind the 38th Parallel. While not directly committing forces to the conflict, the Soviet Union provided material aid to both the North Korean and Chinese armies. The fighting ended on 27 July 1953, when the armistice agreement was signed. The agreement restored the border between the Koreas near the 38th Parallel and created the Korean Demilitarized Zone (DMZ), a 2.5-mile (4.0 km)-wide fortified buffer zone between the two Korean nations. Minor incidents continue to the present day.

My father was one of the 88% of international soldiers who fought in Korea for the freedom of millions of South Koreans. Dad never spoke about the war, and although he earned a purple heart and numerous honors, we did not know any details of these awards. My father passed away in 2001, I miss his humor, wisdom and sense of irony every day. To see his granddaughter competing in Korea would have made him so proud, I believe he was with us.

Alex at Alpensia Resort

My sister Sue who was able to accompany us said it best on her facebook post:

In memory of my Father Major James J. Hughes Jr. USMC Korea. Thanks to his bravery and the heroism of thousands of American soldiers, we are here today celebrating the accomplishments of not only his granddaughter, but thousands of athlete and their families, from around the world. I'm sure when he was living, and fighting, in these mountains, he had no idea of the future of Korea. We have been honored to have been here and are very proud to be Americans.

From the top of Yongpyeong, site of the Alpine Ski Competition

Top on our list was to visit the DMZ and honor our father. We passed through security checkpoints, armed by young Korean soldiers (there is a 21 month mandatory service requirement beginning at age 18). Our IDs were reviewed and car checked out, but we were allowed to pass without much hassle.

Checkpoint to enter DMZ area

As we drove further and further north (we were as far east as possible, along the East Sea) the weather became bitterly cold and windy. We reached the observatory after a stop at the DMZ museum, where we could go no further. At that point, we were 4 ½ miles from the actual 2 ½ mile wide massive barbed wire fences, barricades and soldiers. We gazed to the desolate north and could see one of the many pre-38^th parallel fences and the guarding soldiers.

Looking into North Korea

In the eeriness of the scene I felt my Dad and sensed his pride in his family and his granddaughter. I miss my Dad every day of my life.

My very fun parents circa 1972

Our friend Jay is a student at Purdue, but has taken two years off to fulfill his military obligation. On the second day of Alex's races Jay and his family came to watch.

Jay, his parents and aunt

I asked Jay and his parents (he was our translator also) about North Korea and their recent nuclear capabilities. Jay told us that the military (there are also US and UN troops in Korea) is constantly on alert. They do not trust the new leader Korean President Kim Jong Un and fear he will be worse than his predecessor father. Recently he has declared martial law in anticipation of the country's third nuclear test, which is reportedly to be conducted before the middle of February, and will coincidentally occur on his late father's birthday.

I was also curious about the feelings of South Koreans towards Americans in relation to the Korean War. Jay and his family explained the South Koreans are embarrassed about not defending themselves but are forever grateful to the US for assisting in their freedom. Jay shared with his family about my father and from that second on we were not allowed to pay for our food. We also received a gift of warm (and much needed) ski socks. The explanation, “we will always owe you a debt of gratitude”.

And this I would not have known or felt if it was not for my amazing daughter. We miss you Dad.

Alex, Dad and me June, 1994

A year and 18 days ago

2014-02-25T09:05:00.000-07:00

A year and eighteen days ago I had just returned from South Korea watching Alex represent the United States of America in the World Winter Special Olympic Games. In honor of this life changing experience and this year Winter's Olympics in Sochi, Russia I am going to republish the posts about the Olympics.

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SOG - So much to write about!

Although it took over 44 hours I am happily nestled on my couch watching my favorite TV shows. Alex's last race was amazing. She was seeded sixth of seven and raced her way all the way up to a bronze. Her face says it all:

Alex raced through rain, snow and the bitter cold. But her technique was always perfect.

The Closing Ceremonies were a celebration of the success of the previous nine days. This quote from the Closing Ceremony booklet is the pledge we all made to the chant of "Together We Can", the theme of the Winter World Games.

For nine days the world celebrated people who are different, yet people who have the same dreams and visions as the rest of us. It truly was amazing and inspiring. This is The Sorisaem Bell Choir of Uiryeoung Love House, described as Special Artists who performed at the Closing Ceremonies.

A year and 21 days ago

2014-02-24T09:02:00.001-07:00

A year and twenty-one days ago I was in South Korea watching Alex represent the United States of America in the World Winter Special Olympic Games. In honor of this life changing experience and this year Winter's Olympics in Sochi, Russia I am going to republish the posts about the Olympics.

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SOG - The Opening Ceremonies - "Together We Can!"

I started to write this post the evening of the Opening Ceremonies and then realized I would not be able to do it justice. It is now seven nights past the Opening Ceremonies and one night from the Closing ceremonies, and I still cannot do it justice.

My original post started with the following:

Imagine that people of all color and creed are gathered together to represent their countries with honor and pride. Imagine these 3,000 plus athlete all having disabilities. Imagine every single one of these proud athletes is respected for who they are and what they contribute to their communities, to their countries and to the world…..This is the Special Olympic World Games.

But after much thought I realized those simple words cannot express what is really happening these nine days in the Republic of Korea. Following is an excerpt from the Opening Ceremonies Speech of Na Kyung Won, the Chair of the Special Olympics World Winter Games (who was also kind enough to allow our picture to be taken with her).

“Not just in Korea, but in many places around the world, prejudice and discrimination against the handicapped continues to take place, preventing them from demonstrating their full potential. Over the next eight days, these unique athletes will reveal their surprising abilities which have been hidden under the dark cloud of discrimination…..

…..The spirit of the 10^th Special Olympics is embodied in the phrase “Together We Can!” In order to create a world where everyone can live together in peace and happiness, we must begin by genuinely understanding the dignity and universal human rights of those alienated by society. I sincerely hope that through this event our society can do away with, once and for all, the “look twice” mentality of sympathy and discrimination, and adopt the “look once” spirit of social acceptance and equality.”

The Korean people are gracious and welcoming. They are proud of their heritage and the progress they have made in the world since the 38^th parallel was established in 1953, permanently dividing Korea into two countries. We have been treated to many Korean rituals and performances, all fore shadowed at the Opening Ceremonies.

Family members were allotted two tickets to the Opening Ceremonies, so only Courtney and I were able to attend (we are also traveling with my sister Sue and her daughter Kelsey). It was a beautiful ceremony which included the traditional parade of athletes, with the US one of the largest delegations.

There were speeches by people with and without disabilities, including the President of Korea Lee Myung-bak will relinquish his post in February to I was able to see the President up close as I was detained by his security force when I tried to get to the ladies room.

The final act was the lighting of the Olympic Torch, which had been carried all the way from Greece, the home of the last World Summer Olympics.

These seven days following the Opening Ceremoies have given me renewed hope that people of all abilities can and will be accepted in their communities, their countries and the world. Every athlete here is respected for who they are, not what they have. Each athlete goes out every day in cold, rain and snow to compete to the best of their abilities and are making a difference for people all over the world. The media coverage has been outstanding and the successes of all the athletes highlighted over and over again.

This is what I have experienced here in South Korea, inclusion, acceptance and equality. And this is what is so hard to put into words, it all seems so “normal” here, not abnormal at all.

As an aside, I have loved meeting athletes with down syndrome from across the world, Russia. Serbia, Ireland and even some of the African nations. Down syndrome does not discriminate by color, creed or nationality and it makes me feel so connected to our world.

And a special shout-out to our self-less American coaches, administrators and volunteers who have changed the course of my daughter’s life is so many positive ways.

A year and 16 days ago - again

2014-02-19T15:28:00.000-07:00

A year and sixteen days ago I was in South Korea watching Alex represent the United States of America in the World Winter Special Olympic Games. In honor of this life changing experience and this year Winter's Olympics in Sochi, Russia I am going to republish the posts about the Olympics.

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SOG - Race #2, the perfect storm

Courtney graduated and Tom will graduate in June from Colorado Rocky Mountain School located in Carbondale, CO. CRMS is a boarding school and attracts students from all over the world and especially Asia. The school has been a driving force in all of our lives, with the opportunity to meet and host many international students.

One of our long time host sons is Jay from Seoul. Jay and Courtney were great buddies, and although he goes to school in the US - he is back in Korea fulfilling his mandatory 21 months in the military. We met Jay's family at CRMS graduation in 2011. They are gracious and kind and expressed their thanks many times for sharing our home with Jay, to me he is our second son. In our world of good karma we were able to spend time with Jay and his family today when they came to watch Alex ski.

Wanting to do well for her fans was storm number one.

Storm number two was Alex's ranking, once again her previous times put her in another competitive heat and she was the seventh best of eight skiers in her flight. Today was The Giant Slalom (click to watch the video) , which is one of Alex's stronger races. Her times were decent and she certainly looked great, but she was unable to make it past fifth place.

And storm number 3 is something we girls all experience, the hormonal imbalance caused by that monthly thing ..and Alex's month started today. Alex's coaches have worked very hard with her on good sportsmanship and competing not to win, but to try your hardest. This has been a tough lesson for Alex as she always wants to win. She is competitive, but she also does not want to let other people down.

Today Alex stood on the podium and received a ribbon for 5th place, out of eight. She skied her hardest. looked great, but has meet her match competing against the best skiers in the world.

I do not condone bad sportsmanship, but my heart melts when I see the look of disappointment and the holding back of tears on my daughter's face. Alex cried for a good 20 minutes, her coaches took it in stride and her good friend Jay, her Korean brother was able to get her to smile again.

Today was that perfect storm, but it was a good storm. Alex had another great race and hopefully learned a little more about good sportsmanship. We were able to visit with Jay, his parents and his aunt a half a world away from Colorado. It was a great day, one I would never have imagined even a year ago.

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.

A year and 16 days ago

2014-02-18T14:58:00.000-07:00

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SOG - The Super G

In the Special Olympics all athletes are given the opportunity to compete in the medal races. Here in South Korea the heats are decided the day before the race through a divisioning run. In the past Alex has always tried her hardest in the divisioning runs and manages to put herself in the finals race with the more competitive athletes.

Alex’s first race was the Super G, an event she usually she does not race. In the Super G the racers tuck their poles and ski as fast as they can around the gates. Alex prefers the Giant Slalom and the Slalom as she can use her poles to plant and turn. The Super G was scheduled for yesterday, but due to rain the event was rescheduled for today.

Alex had a great time, but was 6 seconds behind an athlete from South Korea, which put her in second place. Needless to say we were all whooping and cheering proudly for Alex. The awards ceremony usually take a little time to queue up, it was not until about 30 minutes later we saw Alex go up to the podium. As she stepped on to the second place step I could see the sadness in her face. My wonderful happy daughter has inherited one of my worst traits – she is about as competitive as they come. She felt she had let down her friends at home who had told her to “bring home the gold”.

Alex did recover quickly with all the congrats and hugging that went on after the ceremony. She explained the Super G was not her event and she would do great in the GS. I think it was the interview we did for the Polish TV Station that put her back on track. If anyone watches Polish TV, be sure to look for Alex and me!

The divisioning for this race did not occur due to the rain delay, so tomorrow’s divisions were determined from today’s races. Funny how that works, a certain South Korean who skies much faster than Alex has moved up to a different division. I know Alex will race her hardest and will learn that is is the effort that counts. not the color of the medal.

We were able to spend dinner with Alex, she has matured so much in these last eight days. She talked non-stop and shared about the US military base the Team visited, lunch with the US Ambassador and the kindergarten visit. She shared stories of her new friends and joked about her coaches. She shared about the Healthy Athletes initiative the Special Olympics is rolling out, it provides health assessments and screenings including eyes and ear examinations. For the first time, Alex failed her eye exam and glasses were made for her on the spot…..and she even wore them!

When were returned Alex to her coaches I felt an amazing sense of gratitude. How could I have imagined almost 20 years ago that our lives would turn out like this….in a country so far from our own, cheering on a young lady who just happens to have down syndrome who is living her life to the fullest. What else could a Mom ask for any of her kids?

What does college look like?

2014-02-12T10:45:00.003-07:00

Alex is a media magnet. The following appeared in the University of Cincinnati online news section today! It provided a great description of the TAP Program as well as links to more information.

UC Student a Medalist at the 2013 Special Olympics World Winter Games

Alex Bender competed for Team USA before taking on her latest challenge: an educational experience on UC’s campus.

Date: 2/12/2014 10:00:00 AM
By: Dawn Fuller
Phone: (513) 556-1823

Photos By: Gary Bender

As the excitement builds for the 2014 Winter Olympics in Sochi, UC can brag about a number of Olympic champions, with Mary Weinberg being the most recent UC grad to win a gold medal.

Alex Bender at the 2013 Special Olympics World Winter Games.

UC is currently home to another world champion athlete. Alex Bender, of Carbondale, Colo., was awarded the gold and silver medal in alpine skiing for Team USA at the 2013 Special Olympics World Winter Games in PyeongChang, South Korea.

Alex, who has Down syndrome, is one of 15 students participating in the University of Cincinnati’s Transition and Access Program (TAP). The program, which began last year, is a non-degree, four-year program for students with mild to moderate intellectual disabilities that provides opportunities to engage in the college experience.

Alex, who has also won in state skiing competitions in Colorado, says she has been skiing since she was six years old. Her entire family – mom and dad, older sister and younger brother, are all avid skiers. Her trip to South Korea was Alex’s first time out of the country. She trained for the Special Olympics World Winter Games in Lake Placid, N.Y.

“I remember it was very cold,” she says, of competing in South Korea. “It was really different than Colorado.” She won the silver medal in the Super G competition and was awarded the bronze medal in the giant slalom.

When Alex was a high school sophomore, she got involved in a futures planning program for students with disabilities and that’s when she knew she wanted to go to college. “Her sister was planning to go to college and her brother also left for college this year,” says her mother, Margaret “Gary” Bender. “Alex wanted to go to college, too.” The family looked into a similar education program like TAP’s in New Jersey, where Alex was wait-listed last year. More research turned up UC’s new TAP program.

Alex entered the program last semester and moved into the TAP House in Stratford Village, which opened last fall. The house is a blended community of students representing UC’s general student population and students in TAP. “I do chores at the house, like cleaning my bathroom and my room,” she says.

TAP students can participate in college classes and internships as well as engage in social experiences with the general UC student population by attending campus events, studying in the UC Libraries and technology labs, working out at the Campus Recreation Center and joining student organizations.

Silver Medal awards

“I’ve been to a football game and a volleyball game, and I take a swimming class at the Rec Center. I also like the food in Cincinnati better than at home,” says Alex, although she has not become a fan of Cincinnati chili. Ice cream is her favorite.

TAP meets post secondary higher education standards and is a partnership supported by the UC College of Education, Criminal Justice, and Human Services (CECH) and the Mayerson Foundation.

Alex’s mother paid tribute to her daughter by writing the book, The Ordinary Life of an Extraordinary Girl, sold by Amazon. She says Alex’s experience at UC has made her very independent. And for the first time in 22 years, Gary Bender is adjusting to an empty nest after both Alex and her brother left home for college last fall. “She’s just like all the other college kids. I hardly ever get a phone call from her!”

“I think she’s doing great at UC,” says Gary Bender.

“I love being a Bearcat,” says Alex.

UC’s Transition and Access Program

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.

Do you want to hear about adults with Down syndrome? Listen here!

2014-02-01T12:22:00.001-07:00

Do you want to learn a parent's perspective, or a sister's perspective on adulthood and Down syndrome? Five adults from 18 - 54 are represented in this podcast from The Road We've Shared.

The Road We've Shared is a new online Community for families with adults with Down syndrome. We share our present and hope to help others learn more about their future. This is the first in a series of monthly blog radio shows that will be held to share information, tips and successes as we work to navigate through adulthood. We cover employment, SSI/SSDI, Guardianship and many other experiences.

The following Moms and sister participated in the call. Please like their facebook pages as well as The Road We've Shared if you want to learn more about the bright future all our children have!

Me - Gary - The Ordinary Life of An Extraordinary Girl
Madra - Madra Sikora
Karen - Just Joshin' Ya
Stephanie - Walkersvillemom
Marianne - Joeys' Ups with Downs

This was the first time I was able to discuss Alex's future with four other families all from different states and all with different futures. It was a thoughtful and meaningful conversation and you should listen!

FYI - it is 2 hours long, but goes very fast, especially if you are multi-tasking!

Check Out Parents Podcasts at Blog Talk Radio with Health and Design Today on BlogTalkRadio

A year ago yesterday

2014-02-01T09:23:00.000-07:00

A year ago yesterday I was in South Korea watching Alex represent the United States of America in the World Winter Special Olympic Games. In honor of this life changing experience and this year Winter's Olympics in Sochi, Russia I am going to republish the posts about the Olympics.

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SOG - I saw Alex!

In the last few days we have been to the Opening Ceremonies, driven to the DMZ and gone on a cultural tour provided by the Korean Tourist Agency. But except from a far we have not seen or heard a peep from Alex until this evening. This is all good, except I miss her so much. Alex has been my companion for so long, I have shared all her successes and all her challenges and now she is on her own path. I miss her so so much.

Tonight I did what every warm blooded Mother would do...I stalked the US Team. Well really it was not that bad..they were eating in the dining area and I just happened to look in the door, I just happened to see Alex and somehow I happened to say her name loudly.

And that is what I love about Alex - the look of sheer happiness at the sight of her meddling mother, sister, aunt and cousin. I have never been hugged so tightly, smiled at so lovingly or felt so wanted as I did in those few minutes with a 19 year old 4'10'' Olympic athlete.

I met two of Alex's coaches, who might think I am strange that I wanted to know if everything was okay...because it always is with Alex. She may have her quirks and her issue with transitions, but when she is the center of attention - as every athlete is this week - she shines.

Tomorrow is Alex's first competition. She is bib 283, division 36 competing in the morning in the Super G. Alex told me her practice run was good and she loved the snow conditions. I know she will try her hardest....and her Mom, sister, aunt and cousin will be cheering her on every second of the way!

Check her results here!

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.

A year ago tomorrow

2014-01-28T08:24:00.000-07:00

A year ago tomorrow I left for South Korea to watch Alex represent the United States of America in the World Winter Special Olympic Games. In honor of this life changing experience and this year Winter's Olympics in Sochi, Russia I am going to republish the posts about the Olympics

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SOG - The Arrival

Aspen – Denver, overnight in Denver, Denver – San Francisco, San Francisco –Seoul, Seoul – Pyeongchang….it was a long trip and 48 hours later I feel human again.

We are lucky to have been a host family for a couple of Korean students at Courtney and Tommy's school – Colorado Rocky Mountain School. One of these “Korean Sons” Jay, a student at Purdue, is here for his mandatory 18 month stint in the army. His mother was nice enough to greet us at the airport and help us through the car rental challenges.

We are staying three hours east of Seoul, close to the coast and an hour or so from the DMZ. The weather is cold, gray and damp, a far cry from our bright and warm Colorado days.

We rented a junior suite at a resort called Phoenix Part, about 30 minutes from the main ski and snowboard competition resorts of Alpensia and Yongpyong. The suite is very efficient with one large bed set on a wooden platform and two sleeping pads with comforters for the other two. More about Korean accommodations later.

Korean food is interesting; I still have a lot to learn. Our first real meal was at a hotel at the Alpensia resort, location of the main family reception area. The duck soup was bland, but comes with a number of side dishes, which I assume were supposed to be added to the soup. My Korean stomach still needs to develop, and I was not brave.

I have only seen Alex from a far at the Opening Ceremonies, and in this case no news is good news. Off to check out the seaside towns and hopefully the DMZ.

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.

A year ago yesterday

2014-01-26T12:40:00.001-07:00

A year ago yesterday Alex left for South Korea to represent the United States of America in the World Winter Special Olympic Games. In honor of this life changing experience and this year Winter's Olympics in Sochi, Russia I am going to republish the posts about the Olympics

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Special Olympic Games - the departure

On July 8, 1993, I wrote the following letter to our friends and family:

Dear Friends and Family,

On June 19 John & I were very happy to experience the birth of our second child and daughter Alex. Alex has Down syndrome, which took us completely by surprise. My pregnancy had been uneventful and every indicator was normal.

Fortunately for us, I delivered Alex in a hospital with an excellent reputation for treating newborns with all sorts of problems. As Down syndrome was suspected by the doctors shortly after Alex's birth, she was tested for the most common physical problems affecting Down's children. This included heart, lung and lower GI tract problems. Her muscle tone was also checked and her ability to feed and digest her food. Happily, she passed all of her testing with flying colors.

Although we were heartbroken at first, we have realized that first Alex is a baby, and secondly she has Down syndrome. Not the other way around. We didn't plan for this but we are preparing for it.

We are now semi-experts on Down syndrome and are learning about all the programs that are available to Alex so she will be able to reach her highest potential. This involves something called early intervention were she will be able to work with therapists to help her develop the skills she will need to be able to go to school and function as a normal child. Alex will receive the best care we can give her.

Alex is active, alert, cute and we love her. We hope you will all get a chance to meet her. I expect we will all become better people for having Alex in our lives.

Today, almost 20 years later Alex is on the plane to the Republic of Korea with 150 other athletes from the USA and 60 coaches. Our long ago fears and grieving have been forgotten and in their place a beautiful sense of serenity. Our journey is not always easy but it is always full of pride Once again, the prophesy of that long ago letter was realized this past week as Alex prepared for her departure. Alex is loved beyond words.

She is loved at the Treehouse, where she works in the childcare facility at Snowmass Mountain.

Alex is loved at Challenge Aspen, where she trained two days a week for the Winter Games.

Alex is loved at Timbo’s pizza where she works on Wednesdays and brightens everyone’s day.

Alex is loved by our friends at WindWalkers and our dear friends from Illinois.

Alex is loved by Sarah Berra, her truest friend for almost 17 years

And Alex and all her five fellow athletes are loved be each other and the wonderful state of Colorado.

How did we get so lucky!

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.

It's a blog hop, read other awesome stories here!

Buyer beware

2014-01-03T14:43:00.000-07:00

Down syndrome is a huge part of my life, Alex is not anymore. Alex will be leaving in two days to go back to college, and I most likely will not see her until her spring break at the end of March. I know she will call and text and facebook me, but she will not be in every waking thought I have.

I try to blog when I can, but without Alex here everyday I often struggle to find something to write about. Instead I read others' stories and comment as appropriate when families with younger children with down syndrome ask for advice. This has become part of my daily routine and kept down syndrome so important to me.

I do not want to seem like I know it all, because certainly I don't, but sometimes when I read these posts I want to assure families that everything will be alright. Your little one will grow up, learn to communicate and take care of themselves. Things will be hard at times and you will feel like a broken record in your conversations with your school districts. It will be alright.

I wrote a book about our experiences raising Alex and the reviews were quite nice, the sales have been fairly good. I am not an in your face kind of a person, so my attempts at self marketing have been pitiful. I am so grateful to the down syndrome families who have read and reviewed my book and this has made the difference. I did not write this book to raise a lot of money, but I do think our experiences can be helpful to families new to down syndrome.

Recently I contacted an organization who has a large facebook presence and represents a lot of down syndrome merchandise. I told them my book retailed for $12.50 including shipping and handling and I agreed to sell them 12 books at $5.00 wholesale. With my shipping costs this was a $0 profit for me, but I just wanted to get the book out there - hoping it would be helpful to others.

A few days later I found this picture on their facebook page and website.

This group (no names needed) claimed in the ad that my book was retailing for $24.99 and at their price of $11.99 buyers would receive a 76% discount. When I did the math this meant with the $4.95 shipping and handling charge the price of the book was $16.94, or almost $4.50 over retail.

I am not sure if I was naïve or just shocked at the dishonesty but I asked for the books to be returned and ended up with a net loss of $20.00 in shipping costs.

My book is available on kindle. I have just lowered the price to $2.99, which is the lowest price I can offer if I want to stay on kindle prime, which offers book borrowing and periodic promotions.

Please buy my book, I know you will enjoy it.

The bucket list

2013-12-31T15:15:00.000-07:00

2013 has been a strange and crazy year.

We had some great successes, namely sending our two youngest off to college. Our oldest was born in 1992, our middle child in 1993 and our youngest in 1995. Within three years we went from happily married professionals to the parents of three babies, then three toddlers and now three young adults, one with special needs. This year, John and I became empty nesters, which is the strange. And even stranger, John has been traveling a lot for work and I am alone for weeks at a time.

For 22 years every day of my life was about my kids, their activities, therapies and schoolwork. Never did I imagine this part of my life would be over in a flash, there were many years I thought I might have a breakdown with the amount of work that went into advocating for Alex, but we always managed to get by. And now that is a distant memory, and I am a different person, very strange to even look back.

Today, I am happy, healthy and excited about the next phase of my life. I work for a nonprofit and am an active advocate for people with disabilities in our community. Our journeys are strange and the paths we take crazy, but we have learned every step of the way and hopefully become better people.

Which brings me to my bucket list. For years I have wanted to get a graduate degree, but was never sure which direction to go, business like my father, or a profession where I can make a difference. I decided on social work and am in my first year of a two year MSW program at the University of Denver. I plan to concentrate on organizational leadership and social policy combining my business back ground with my nonprofit experience.

Aside from graduate school my bucket list is still long. I want to see all three of my kids graduate from college and find their soul mates. I want all three of my kids to find meaningful employment and find their dream home in a community where they are welcome and included. And finally, I want every family I have met over the last few years with a child with Down syndrome to be able to share my bucket list and find even greater opportunities in their children's future than we have found.

Here's to a 2014 of greater acceptance and awareness of people of ALL abilities in our communities, our countries and our world. Crazy? I think not.

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.

Other people's stories

2013-12-28T11:46:00.000-07:00

The holiday season is filled with stories. Growing up catholic one of the first stories I heard was of the birth of Jesus. This story is much more than the birth of the Savior, it is a story of new beginnings and sacrifice. In our family, this baby represents goodness in mankind and the belief that we are all on earth for a bigger reason than ourselves.

I do not mean this to be a post about Jesus, rather a post about stories and how powerful they are as we develop our own personalities and identities. For me, my story evolved to be the story of a Mom with three children, one with Down syndrome. This grew to be bigger than me and became a story of community, of advocating and of activism. The book is half written at this time and I have no idea how it will end, but I truly believe that if we follow our passions the ending will be good.

This holiday season I have been following a lot of stories, some good and some not so good. I have read about other families impacted by disabilities, some good and some not so good. I have read of the joy of having a child with Down syndrome, I have learned of many families, just like ours who fight hard for their children and are making a difference. It is a season of thanks for the health of our children and the opportunities they will have as they grow older.

But it is the other stories that have been so meaningful to me this season. The stories of people I had never met. Truthfully, I do not know these people’s stories, I know they do not have children with Down syndrome, but I do know that their work is making a huge impact on the lives of families graced by Down syndrome across the world.

At the TASH conference I had the honor of meeting two of these people, Bob Schoen, the Executive Director of Research Down Syndrome, and Amy Allison the Executive Director of the Down Syndrome Guild of Greater Kansas City.

I have known both Bob and Amy through their work for a few years. Bob contacted me when I first started sharing our story in 2009. Bob was interested in learning more about families with Down syndrome as he began his journey of raising funds to support research aimed at improving the cognitive abilities of people with Down syndrome. He has been very successful in his work and to date raised millions of dollars to support research projects. I was honored we were able to share coffee while Alex and I were in Chicago.

Amy I met through facebook , which is where I first learned about her work with families in the Kansas City area. Recently however, I have seen a number of posts about Just Like You – Down Syndrome a 14 minute film made in collaboration with the Down Syndrome Guild of Great Kansas City that explores the life, hopes, challenges and dreams of three kids living with Down syndrome. This film helps create an awareness and acceptance of Down syndrome and was the recipient of the Positive Images in the Media Award at the TASH Conference.

Amy was at the Conference to receive the award as well as present the film the first evening. Alex and I were honored to introduce ourselves to Amy and put a face to all her work.

As 2013 draws to a close, I take this opportunity to thank the hundreds of people we have met through Down syndrome. Most of these people I know through their stories or their work, many I have never met. But to Bob and Amy, I am so glad to have met you in person, thank you for all you do to make the world a better place for people with Down syndrome.

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.