DSR Episode #26: 321Foundation!

Just a catchup episode here to keep you up to date.

First we did a quick wrap up on World Down Syndrome Day (March 21).  Then we jumped into the newest and coolest Ds Organization – the 321Foundation.  This new organization was started by a group of families in Delaware – One of which was our very own Rick Kosmalski!  Go Rick and friends!  Check them out at their site and go and like them on Facebook.  Check out the pictures of their kickoff gala on WDSD and while you are there, buy a T-shirt!

Then we simply gave a ‘kid by kid’ update on the IEP process.

  • Dexter (~3yrs) is just entering the school system.  Jason had their IEP but they are already in a private preschool and getting some private therapy so it was pretty low key.
  • Luke (5 yrs) is ready to go to Kindergarten.  Mark is worried about inclusion and the fact that there is only one teacher for ~25 kids. Luke will likely need some in-class support (an aide).  When you want more than they are willing to give – that is when IEP meetings are tense.  Our plan – bring food! (we actually give more advice in the episode – you should listen…)
  • Kayla (7 yrs) is in second grade – To Rick, the whole thing is dependent on the teacher – a good teacher means Kayla will have good year.  At this point the IEP is really a update from the previous year with improvements based on lessons learned.

Here are some lessons learned:

  • In general as husbands, we take on the role of ‘bad cop.’
  • It is best to ‘go in with a plan’ – in other words, know what services you want in advance.
  • The teacher is crucial.
  • If you feel that the situation/services set up is not working for your child, intervene IMMEDIATELY.  A ‘wait and see’ or ‘just give it a few months’ is just a bad idea.  You can quickly miss a half a year this way…

If you are looking for a good cause, our first ever DSR guest from waaay back in Episode 3, Dan Moreno, is running a 50K (that’s 31 miles!) in the mountains and desert(!) this weekend.  Show him some love and donate a few bucks to support Research Down Syndrome.

Sorry we haven’t had an episode in a while.  We have two great guests lined up, but we have had bad luck coordinating schedules.  We will keep the episodes coming – don’t worry…

Download Down Syndrome Radio, Episode #26.
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DSR Episode #25: DS Connect with Lisa Kaeser

The new DS Registry will provide huge opportunities to improve the lives of our children! We had the opportunity to speak with Lisa Kaeser about DS Connect which launched in September.  Just listen to the list of potential benefits that will come out of this important new registry:

  • Help connect people with DS to scientists who study DS.
  • Speed up research in DS by collecting information that scientists can use.
  • Help scientists learn why people with DS have different symptoms.
  • Help health care professionals improve how they treat people with DS.
  • Advance understanding about how and why certain treatments work and don’t work.
  • Help scientists develop and test new treatments for people with DS

Get excited people!  These are serious benefits for our loved ones!  Signing up only takes a few minutes – both Rick and I did it.  Also, you get access to awesome demographic data on children with DS.

Lisa Kaeser is the Director of Legislation and Public Policy for the Eunice Kennedy Shriver National Institute of Child Health and Human Development.  Lisa was a wonderful guest and told us ALL about it.  We went over the history of the effort and the development of the registry as well as the types of data it will contain.  The uses relate directly to the goals listed above.

One really big issue was privacy.  This is important to many folks so we went through this thoroughly.  The contact data is kept completely separate from the actual data.  Researchers can see the registry contents by category, but can never find out information about a specific individual.  Registrants can ‘opt in’ to be contacted under specific circumstances such as a medical discovery or to potentially be part of a research trial.  Rick and I both filled it out and I for one thought it felt really safe.

Go and register – it is quick and easy, we promise:

Oh and while you are in a good mood, go to iTunes and look us up.  Click subscribe and give us a good review.

Thanks,
Mark

Download Down Syndrome Radio, Episode #25.
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DSR Episode #24: DS Achieves with Lito Ramirez

We had the opportunity to speak with Lito Ramirez, founder of Down Syndrome Achieves.  DSA’s mission includes Research and Funding, Political Advocacy and Education.  They have a new initiative called ONE21.  ONE21 seeks to fund the development of a dedicated and centralized DS biobank that will be open to all DS researchers, regardless of institutional affiliation.

A biobank is a large medical-grade refrigeration unit used to store high-quality samples of blood, tissue, DNA and other specimens researchers need to build a more thorough understanding of DS. It is a critical tool in advancing research in speech and communications, congenital heart defects, childhood leukemia, early cognitive decline, thyroid issues and others.

Without a biobank, progress for our loved ones with DS will remain slow.

Biobanks have been in use since the late 1990′s, and are already commonplace in other research areas, including autism, cystic fibrosis, Duchenne muscular dystrophy and psoriasis.

A biobank will go a long way toward advancing the science of DS faster, making therapies and best practices available sooner, so our loved ones with DS can live healthier, happier and more vibrant lives.

Lito is the father of a child with DS just like us.  We had a great time learning about DS Achieves, ONE21 and what a biobank is.  Now go to www.ONE21.org and click sign me up!

Thanks,
Mark

Download Down Syndrome Radio, Episode #24.
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DSR Episode #23: Dr. Kishore Vellody!

Dr. Vellody is the Medical Director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh. This guy REALLY understands the medical issues faced by our children!

Because the center that he directs is specialized, he sees an incredible amount of patients with Ds.  This centralized experience is invaluable in correctly diagnosing and treating our wonderful children.  To further brag about our guest, he is incredibly personable and easy to talk with.  He explains the medical science behind several issues during the episode in a very clear and concise manner.

Dr. Vellody has a brother with Ds and a wonderful family with four children!  If you ever wondered what was going on in the picture (at right), it is little Kishore and his brother.  I think the chair was later used for the set of the Brady Bunch.

During the episode we discuss the following medical issues:

  • Heart Surgery – How to choose the right hospital/staff
  • The common cold for those with smaller nasal passages
  • Sleep Apnea – Sleep studies are important!  This can have chronic affects if left untreated.
  • The neck instability thing (Atlantoaxial Instability) – We learned a lot about this
    • It is much rarer than I thought (a few in a thousand)
    • They do x-rays to diagnose it but an x-ray is a poor tool
    • There are symptoms to look for – Dr. Vellody can spot them
    • Don’t worry about it so much, but don’t drop your kid on his head if you can help it.
    • DS Medical Registry
    • Health Supervision for Children with DS – Apparently our kids did come with instructions!

Dr. Vellody has also started his own podcast to share his medical knowledge (which is how we found him!).  Have you ever left a doctor’s appointment and said to yourself – ‘I just hope I could remember everything he said’?  Wouldn’t it be cool if you could just go to his podcast and hear it all again while you were at the gym or driving in your car?  Well that all possible now.  Here is the link to his podcast in iTunes.  And here is the link to his web page (Children’s Hospital of Pittsburgh).

Thanks for listening!  Remember to go to iTunes and give us a great review and subscribe.  You can also leave us comments on this site!  Have a wonderful DS Awareness Month and a great time at your local Buddy Walk/Step Up event!

~Down Right Awesome Dads

Download Down Syndrome Radio, Episode #23.
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DSR Episode #22: Signing Time with Rachel Coleman!

Rachel takes us back in time, telling us the story of her first child Leah and handling her deafness from diagnosis to the development of Signing Time.  Like our children with Down Syndrome, Rachel found that Leah was considered ‘different’ but that when she taught the other children a few signs, she no longer seemed so different.  The parallel here is that advocacy and mainstreaming make our children seem more the same than different and that is how it should be.

Rachel and her family

Rachel’s struggles weren’t over.  Her second child Lucy was born with spina bifida and cerebral palsy.  Rachel found that signing was again a big help.  She also learned that all children (including those with special needs) can learn signs much earlier than speech.  She teamed up with her sister to create Signing Time.

We also got a lot of great stories about the actual creation – green screens, tape on fingers, the mythical orange vest, etc.  It was really great hearing the story of Rachel’s family.  Signing Time is a great show and who knows how many kids it gave the power to communicate…

You might ask how this relates to Down Syndrome.  As we all know, our children generally speak later than typically developing children and in some cases, this delay can be extreme.  Some of our children remain completely non verbal.  Rachel found that in many cases, these children can sign long before they have the oral motor skills, etc. necessary for speech.  As a testament, this was fairly successful with my son Luke and all of us (Rick and Jason too) still see signs coming from our kiddos.

Rachel is working on a new television show called Rachel and the Treeschoolers.  She is taking educational television to the next level by including a full preschool curriculum.  Apparently TV execs thought her shows would be TOO educational.  So, she decided to crowd source.  That means that listeners help fund the show.  Let’s stick it to the TV execs!  Check out at her Kickstarter campaign here.  You can also see all of the other stuff at www.signingtime.com.

Thanks for spending an hour with us…

Mark

Download Down Syndrome Radio, Episode #22.
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DSR Episode #21: Convention Roundup with Mac Macsovits of RMDSA

The NDSC Convention last month was fantastic!  And who would know more about it than Mac Macsovits of the Rocky Mountain DSA?  It turns out Rick and his family were also there.  The convention was very well attended with excellent sessions and events.  Great times were had by all!  Tune in and hear all the details!

We also get to hear about Rick’s visit to Albuquerque to visit the world’s friendliest restaurant, Tim’s Place!

Oh and anyone catch the irony of the Episode Number being 21?  Maybe I should point it out three times…  (get it?  Trisomy 21?).

As always, we would love to hear your comments and questions.  Also, please leave us a review on iTunes if you get a chance.

Mark

Download Down Syndrome Radio, Episode #21.
Better yet…subscribe, rate us and leave a comment on iTunes!

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Let’s Have some Pre Buddy Walk Family Fun!

Let’s Have some Pre Buddy Walk Family Fun!

Don’t Miss Our Annual Summer Event

Get Your Tickets While Supplies Last!

 


DSA Summer Social

“Take Me Out to the Ball Game”

Tailgate Party & Ball Game

Sunday, July 14 , 2013

Padres vs. Giants

Tailgate Party : 10:30 am
Game time:  1:10  pm

PURCHASE TICKETS ONLINE
www.DSAsdonline.org

Or by mail with payment (order form)

Deadline to order and receive tickets by mail is July 8th.

Please help us by placing your ORDER EARLY
before the Fourth of July holiday!

 

DSA Member:

 Adults $25 | Child 3 – 12 yrs. $20  | Birth through 2 yrs. FREE

 Non member/Guests:

 Adult $ 30 | Child 3 -12 yrs. $25 | Birth through 2 yrs. FREE

 

Tailgate Party includes: Hamburgers & Hotdogs with all the fix-ins, Beverages, Kid Activities and Music – seating area provided.
50/50 Cash Raffle & other Great Prizes 

       

Great Seats: Field Pavilion: Sections 120/122
   (3rd base under the overhang) *Ticket value $33

Kid Fest at Park in the Park

Wear your Purple Buddy Walk T-Shirt or any Purple Shirt to the Game and …

- Raise Awareness

- Promote Inclusion & Acceptance

- Celebrate children & adults with Down syndrome

- DSA Scoreboard Recognition 4th & 7th innings

 

Event Details/Ticket Order Form

Vea el volante en Español

Your membership dues and ongoing donations assist DSAin underwriting costs associated with this event and others.

THANK YOU!

 

Questions: contact DSA at 619.594.7389

 

 

Check Online Calendar for updates on all DSA events & activities.
Down Syndrome Association of San Diego

9245 Sky Park Court, Suite 130,CA92123

619.594.7389

DSAsdonline.org

Keep up with San Diego Buddy Walk news on our Facebook page

Mailing Address:
Down Syndrome Association of San Diego
9245 Sky Park Court
Suite 130
San Diego, CA 92123
US

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2013 Buddy Walk Save the Date

 

Save the Date….
2013 San Diego
Buddy Walk Oktoberfest
Saturday, October 19, 2013
NTC Park at Liberty Station

Down Syndrome Association of San Diego is pleased to announce that the San Diego Buddy Walk Committee is busy planning a very exciting 2013 Buddy Walk event for the entire community! On Saturday, October 19th we will be hosting our Buddy Walk Oktoberfest in NTC Park at Liberty Station in Point Loma. 

The Community Fun Walk and Oktoberfest will benefit the Down Syndrome Association of San Diego. Each year over 1,000 San Diegans walk to support vital DSA programs. Help us REACH OUR GOAL of $150,000 so together we can enrich the lives of people with Down Syndrome and their families. Come join the FUN and FESTIVITIES!

 

Registration fees will include:

  • Official Buddy Walk T-Shirt
  • Entrance to the Oktoberfest arena
  • Authentic German Food & Beer Garden
  • 5 piece German band with DJ and dancing
  • Kid Zone (pumpkin decorating, crafts, inflatable’s, face painting)
  • Resource Fair and Craft Vendors

 

*Additional Tickets (non-registered walkers) for entry to the Oktoberfest arena will be available for purchase.

 

2013 San Diego Buddy Walk Oktoberfest

ONLINE REGISTRATION & TICKETS

will be available in July

 

2013 San Diego Buddy Walk Oktoberfest details coming soon

LOOK FOR EMAILS from the San DiegoBuddy Walk Committee

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DSR Episode #20: Current Challenges – Ages 2, 4 and 7

In this episode Jason, Mark and Rick each give an update on their child and the current challenges they are facing for their age category.

Dexter, the walking man!

Jason’s Dexter is two years old and is now walking.  What a big milestone walking is! Go Dexter!  Jason has been having trouble finding the right preschool for Dexter.  Unfortunately they have had trouble with schools refusing Dexter based on his disability.  Is that even legal?  The worst one was the school that his older child attends.  That school turned Dex down without even evaluating him.  It seems that Jason and Colette have found a home for Dex now and it is working out, but it did bring them a lot of stress.  So I guess Jason’s big challenges are now related to school, but walking was a big milestone that happens in the 2-3 yr range for our kiddos.  Aren’t they cute when they just learn and they stumble around like drunks?  I love that age.

Luke and the nerds

The Owens Family is working on academics.  What nerds we are!  Luke seems to love letters and we have been pushing reading and writing with the Learning Program, Handwriting Without Tears, TV Teacher, magnetic letters, foam letters in the bath and the iPad.  He seems to be sucking it up.  In fact he just pointed out a typo for me while I was writing this.  We have been facing some school issues.  Our county wants to place him in Kindergarten this year even though he barely makes the age cutoff.  We want to hold him back.  We want him to REALLY be ready when he hits kindergarten where we plan to push for full inclusion! Negotiation with school officials I think will be our big challenge going forward.

Kayla and her court

Kayla turned seven years old recently.  Happy birthday, Kayla!  Kayla herself was unavailable for comment but Rick says their ‘current challenges’ revolve around school as well.  Rick’s big thing is communication.  It is important to respond quickly when things aren’t working.  If you put things off and say things like ‘we should just give it another month’, you can quickly miss a whole school year in an sub-optimal environment.  Rick says to keep pushing and go after the things you need.  We also talked about inclusion and what Kayla’s day was like.  Making friends and fitting in is also a challenge.

That’s our episode.  Sorry for the hiatus.  We had two postponements in a row.  One by a guest and one that is all Mark’s fault.  However we have some really great guests coming up so stay tuned!

We are the Down Right Awesome Dads and thanks again for listening!

~Mark~

Download Down Syndrome Radio, Episode #20.
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DS Research & Healthcare Symposium

21st Century Down Syndrome Research and Healthcare Symposium:
Linking Research, Policy & Practice

Saturday, June 22, 2013

 8:30 am – 4:00 pm

Bel Aire Ballroom (North Tower)

Sheraton San Diego Hotel and Marina

 1590 Harbor Island Drive, San Diego 92101

 

Expert Speakers:

 

  •       George Capone, MD: Director of the Down Syndromes Clinic and Research Center, Kennedy Krieger Institute
  •      Jon Colman, President: National Down Syndrome Society (NDSS)
  •    William Mobley, MD: Chair of Neurosciences, Department of Molecular Neuroscience, Institute of Neurology, UC San Diego
  •       Michael Rafii, MD: Adult Down Syndrome Clinic, UC San Diego
  •       Sara Weir, Vice President of Advocacy & Affiliates: National Down Syndrome Society (NDSS)

 

Register Online

Mail in Your Registration: complete, print form and payment to: DSA

 ATTN: Symposium, 9245 Sky Park Court, Ste. 130 San Diego, CA 92123
Advance Registration and Payment REQUIRED
Deadline: June 15th (mail) OR June 17th (online)

 

DSA San Diego Members: $75/person | Non-members: $90/person

Fees include Conference materials, Continental Breakfast & Lunch

San Diego Regional Center Consumers/Families: Contact your service coordinator to inquire about availability of scholarships PRIOR TO REGISTRATION.


Partial need-based scholarships available (limited) – contact DSA at 619.594.7389

Self- parking $8 / Valet $14 

dsasd@projects.sdsu.edu

Mailing Address:
Down Syndrome Association of San Diego
9245 Sky Park Court
Suite 130
San Diego, CA 92123
US

Contact Name: Sue Moore
Telephone Number: (619) 594-7389

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Please be patient.

Sadly, there are those who maliciously seek out to destroy websites that may have a security hole in them. Unfortunately, hackers were able to get into the Down Right Awesome website, and hack it and begin spamming from the site. This resulted in corrupt databases that needed to be deleted. Attempts to restore older versions of the database have failed, and we’re looking to slowly rebuild the site back up. Thank you for your patience and understanding.

- Team DownRightAwesome

UPDATE: We have made some progress and managed to restore the data from all the way from the beginning to October 17th, 2012. We’re still working on other portions of the site to restore it back to the Awesome that it was before! Thanks for being patient with us!

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One Mom’s Wish For Her Son With Down Syndrome

Our very own Down Right Awesome mama gives her take on why research is so important to us. Please read, share and don’t forget to donate to Down Syndrome Research and Treatment Foundation- DSRTF today to take advantage of the 3-to-1 matching!!
To help honor World Down Syndrome Day, we asked Colette Cosky, a mother of two and a marketing executive in San Diego, to share her thoughts. After her son was born with Down syndrome, she founded the organization Down Right Awesome and helps raise awareness and support for Down syndrome research.

One Mom’s Wish For Her Son With Down Syndrome

Thursday, March 21st, 2013

To help honor World Down Syndrome Day, we asked Colette Cosky, a mother of two and a marketing executive in San Diego, to share her thoughts. After her son was born with Down syndrome, she founded the organization Down Right Awesome and helps raise awareness and support for Down syndrome research.

For me, World Down Syndrome Day is an opportunity to broaden everyone’s perception of Down syndrome by seeing it through the eyes of the families who live it. I’m one of those families; my 2-year-old son, Dexter, has Down syndrome. (There we are, in the collage.) While we all have some things in common, no experience is the same and not everyone shares the same passions or beliefs. My passion is my commitment to cognitive preservation because Dexter, like all children with Down syndrome, is predisposed to early-onset Alzheimer’s disease. Here’s what I want other families to understand.

As I live my life, the pages of my mental scrapbook are filled with really big moments, with scents that take me to specific places in time, and with faces of those who’ve left my life in one way or another. It’s here I can visit my 4-year-old Eloise back when she was 2, or my Nana, who passed just a year ago. I can go to those memories at any time to rewind, re-live, and re-love.

In the early days of my experience with Down syndrome, I was consumed with all the things I thought Dexter couldn’t or wouldn’t do. Now that’s not the case. I think the only time I get anxious or sad is when society pulls out its standardized ruler and judges my son. Like now, as we search for a preschool, the experience is not the same as when we looked for our daughter. Without even meeting my son, people give us gentle letdowns explaining how the school can’t handle Down syndrome. But if they’d only put the person first, we know they’d see a kid who loves to be with others, who is fascinated by books, and who is eager to learn new things.

But when that standardized ruler is away, the family will play. Our kids are a crackup and seeing them together gives us great joy. Though Dexter is not walking yet, he certainly gets around. In fact, he and his big sis have devised a new game called “toss the fruit and get it.” Then they both go off in a mad-dash army crawl to get the faux fruit they’ve flung across the living room. Their giggles are infectious. I’m certain I’ll have the same smile on my face when I recollect this a long time from now.

I am also positive that I’ll keep with me the memories of our Buddy Walk teams and how I cried tears of joy (and release) the first time our team stepped out to the sweet sounds of a New Orleans-style second line band. Surrounded by our amazing friends, both old and new, we’ve made a tradition of parading in style through San Diego’s Balboa Park, waving signs and twirling hankies – this year we even added parasols!

With these grand memories will also be simpler moments, like when Dexter strings words and signs together to say “Mama, I want more hugs.” This one currently melts me.

Even the bitter memories have a place and purpose. Two years later, recalling the time surrounding the birth of Dexter is painful. I was caught off-guard by the words Down syndrome, given a false sense of security by 55,000-in-1 odds against it, and I had a less-than-desirable hospital experience. Though I often feel guilty for feeling great sadness at his birth, I know I can’t change it. But I can use it as a marker to see how much things have improved–something I never thought possible at the time.

To lose this scrapbook of memories, to lose the ability to go back in my mind and pick a page, would be unimaginable. I wouldn’t wish it on anyone and I certainly don’t want it to happen later in life to Dexter. I believe he’ll always want to look back on moments that made an impact on his life. I just can’t let them be taken from him, and it’s why I care so deeply about cognitive research.

So I started an organization with my husband and friends called Down Right Awesome®. We use our forum to share and advocate for cognitive research, and to also promote inclusion for individuals with Down syndrome on our blog, Facebook, and Twitter. If you’d like to learn more about the early onset of Alzheimer’s in individuals with Down syndrome please visit Down Syndrome Research and Treatment Foundation. In addition to Alzheimer’s research, DSRTF is also exploring ways to improve the overall cognitive ability of individuals with Down syndrome. And to help support DSRTF’s research you can donate directly on the site, or by purchasing a Down Right Awesome t-shirt on our site. All proceeds from shirt sales go to support DSRTF research.

By supporting research now, I hope that I can help Dexter in the future. His mind and thoughts hold no less value than yours or mine. They’re his to keep and, as his Mama, they’re mine to protect.

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DSR Episode #19: Happy World Down Syndrome Day!

We got the band back together for a quick roundup of events happening in celebration of World Down Syndrome Day on 3/21.  Much like the podcast, this write up is going to be short and sweet.

To celebrate, you can:

  • Attend (either in person or virtually) the World Down Syndrome Day Conference at the UN in New York.  Our tireless superhuman cohort, Rick, and his amazing daughter, Kayla, will be there.
  • This year’s conference theme is “Right To Work”.  Check out this awesome video and share it in all of your social spaces.
  • Wear lots of socks to get people talking and raise awareness for Down syndrome.
  • Learn about the research programs and clinical trials in the DS Cognition Research 101: An Introduction webinar put on by DSRTF.
  • Support cognition research by donating to DSRTF and have your donation matched three to one.  Only on March 21, your $100 donation becomes $400 in celebration of World Down Syndrome Day!!
  • Do something in your local community.  There are tons of events happening all across the globe!
  • Lobby Google to use the World Down Syndrome Day Google Doodle on March 21st.
  • Get the word out to all of your friends through your social media connections.
  • Keep an eye on Parents.com for a guest post by someone you may recognize.  :)

Most of all, make your voice heard.  The best way to raise awareness is to celebrate the people in your life who have Down syndrome.  Show the world what it means and how people with Down syndrome play a vital role in our communities.

Happy World Down Syndrome Day!

Download Down Syndrome Radio, Episode #19.
Better yet…subscribe, rate us and leave a comment on iTunes!

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DSR Episode #18: Buddy Walk on Washington with Sara Weir

Due to an unfortunate hacking event, the original write-up for this podcast was lost.  Thankfully, we still have a copy of the audio.  And this awesome picture.  Enjoy!

Download Down Syndrome Radio, Episode #18.
Better yet…subscribe, rate us and leave a comment on iTunes!

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DSR Episode #17: DSAIA with Deanna Tharpe!

Due to an unfortunate hacking event, the original write-up for this podcast was lost.  Thankfully, we still have a copy of the audio.  And this awesome picture.  Enjoy!

Download Down Syndrome Radio, Episode #17.
Better yet…subscribe, rate us and leave a comment on iTunes!

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DSR Episode #16: Your Local DSA (With Special Guest Kim Owens)

Due to an unfortunate hacking event, the original write-up for this podcast was lost.  Thankfully, we still have a copy of the audio.  And this awesome picture.  Enjoy!

Download Down Syndrome Radio, Episode #16.
Better yet…subscribe, rate us and leave a comment on iTunes!

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DSR Episode #15: Teach Me to Talk with Laura Mize

Due to an unfortunate hacking event, the original write-up for this podcast was lost.  Thankfully, we still have a copy of the audio.  And this awesome picture.  Enjoy!

Download Down Syndrome Radio, Episode #15.
Better yet…subscribe, rate us and leave a comment on iTunes!

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DSR Episode #14: Call Your Members of Congress!! (with Susan Goodman)

Due to an unfortunate hacking event, the original write-up for this podcast was lost.  Thankfully, we still have a copy of the audio.  And this awesome picture.  Enjoy!

Download Down Syndrome Radio, Episode #14.
Better yet…subscribe, rate us and leave a comment on iTunes!

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Episode #13: Everybody Plays with Kelle Hampton and Colette Cosky

There is something special going on here in San Diego this week.  The seeds for true inclusion are being sown.  These kids may think they are just playing with some cool toys in a really nice house, but they will be the models for a nationwide advertising campaign that showcases children of all abilities playing together.

Images from day 1 of Everybody Plays.  Some images courtesy of Kelle Hampton.

Everybody Plays is the brainchild of Colette Cosky, Infantino marketing whiz, driving force behind Down Right Awesome, Dexter’s super mama and my amazing wife.  Through a little bit of magic, Colette recruited the amazing photographer, blogger and bestselling author, Kelle Hampton, to join the project and turn it into a reality.

As parents of children with special needs, we see our kids playing at the park or with their siblings on a daily basis.  We observe that all kids play together without any bias.  This campaign by Infantino and Step2 will bring this vision to the shelves and screens of the world to show them what we already know.  Everybody plays.

Download Down Syndrome Radio, Episode #13.
Better yet…subscribe, rate us and leave a comment on iTunes!

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Episode #12: Chip Gerhardt and the Buddy Walk

October is National Down Syndrome Awareness month and we kick it off with a bang.  We are very pleased to welcome Chip Gerhardt, Chairman of the Board of the National Down Syndrome Society (NDSS) to the show.  Chip is a down right awesome dad of three.  His daughter, Anne, is a freshman in high school and has Down syndrome.

Chip and Anne

Not only is October DS Awareness month, it is also the heart of Buddy Walk season!  Chip is a Buddy Walk veteran and leader of Cincinnati’s super team “Annie’s Army”.  He gives us some history and facts about the Buddy Walk, offers up some suggestions for “donor fatigue” and ways to make your team have an even bigger impact – invite your local politicians.  He also gives us some information on what the funds raised during the Buddy Walk are used for.

Before we hit the Buddy Walk topic, Chip tells us his story of getting involved locally and how that grew into his appointment to the Board of Directors of the NDSS.  Always the advocate, Chip goes into his full pitch pulling for the ABLE Act before we bring it back around to the topic at hand.  Since I feel bad that we curtailed Chip when he was on a roll, the ABLE Act is totally awesome and you should contact your members of congress and have them co-sponsor it.

Rick from Down Syndrome Daily takes time out of his busy schedule and provides us with his great story of the week.  Congratulations to Rick, Amy and Kayla on welcoming little Logan to their family!

Our closing song is none other than Whoopin’ Blues by the very awesome Euphoria Brass Band.  Last year, we came up with this wild idea of shaking things up a bit by turning our Buddy Walk into a New Orleans style Second Line.  After a bit of Googling and without knowing anyone in the band, I cold-emailed EBB to see if they would be interested in leading our team.  Almost immediately, they responded with a resounding “Heck Yeah!”  We are so excited that they will be leading us again this year.  Buy their album, “like” them on Facebook and do whatever you can to make these amazing people successful – they deserve it.

Please consider donating to Dexter’s Buddy Walk team, Team Down Right Awesome or to Luke’s Step UP for Down Syndrome team, Luke’s Looney Tunes.

Download Down Syndrome Radio, Episode #12.
Better yet…subscribe, rate us and leave a comment on iTunes!

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This is me, asking you, to take my hand and help me make this real.

Guest Blogger Tawmis Logue had some things to share about how Dexter changed his life:


Dexter is Down Right Awesome

The Down Syndrome Buddy Walk is just around the corner – and Team Down Right Awesome is ready to march! Would love if you could come by, either walk with us, cheer us on, or just think of us while we do the walk!

When Dexter was born, my life was changed. And he’s not even MY son. He’s the son of Jason and Colette Cosky, whom I love very much. But when Dexter entered my life, it definitely changed. I suddenly wanted to fight for a better tomorrow. Not just for myself, but for Dexter. I wanted him to be able to achieve every dream he could muster; I wanted him to walk in a world without any limitations or prejudice.

Dexter is Down Right Awesome

When I signed up for the Buddy Walk Last year, it was all about Dexter for me. I swore I would use every resource, and medium, and whatever it took to ensure Dexter got everything he ever wanted out of life. But as I did the walk, I saw others with Down Syndrome and suddenly realized – I wanted them all to have the life they deserved. A life without limits. A life… Full of Hope.

This is me, asking you, to take my hand and help me make this real.

Dexter is Down Right Awesome

Tawmis also shared this poem on the Down Right Awesome Facebook Page:


Note: Tawmis Logue is the writer and creator of Neverending Nights where this blog first appeared.

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Episode #11: Dana Halle and The Learning Program!

Dana Halle has made HUGE contributions to the Down Syndrome community over the years.  She co-founded the Down Syndrome Foundation of Orange County many years back and more recently, she developed ‘The Learning Program’ which is accelerating education for people with Down Syndrome across the country.

The Learning Program complements traditional education by adding teaching techniques designed to work best for folks with Down Syndrome.  It uses current research to maximize learning in both literacy and math.  DSFOC started this program in Orange County, California, but they have shared it with other organizations and now serve families across the USA.   The have also made the curriculum materials available for free (along with the teaching techniques) available on their website.

We also talked to Dana about her wonderful family and how she ‘got involved’.  We share an ‘aint seen nothing yet’ moment when we all talk about how the outlook for children with Down Syndrome is better than it ever has been!  Good times!

She also shared her favorite apps with us.  Hard to pick of course, but she mentioned:

Mark mentioned medical research when he shouldn’t have and that led to a serious warning:  Developmental research and medical research are completely different!

We have talked about research into pharmaceuticals before and our hopes remain high.  However, such a drug would never make teaching unnecessary!  A drug might improve the function of the brain, but you still need to fill it up!  Better teaching techniques do that.  And the better we teach them, the more they will learn.

No story of the week from Rick and it is all Mark’s fault!  We do have moments though and a great closing song.  Give us a listen!

Download Down Syndrome Radio, Episode #11.
Better yet…subscribe, rate us and leave a comment on iTunes!

Mark

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DSR Episode #10: Apptastic!

Rick from Down Syndrome Daily joins us again to talk apps.  In typical dad fashion, we quickly take a turn for the worse and venture off topic.  After trading bodily fluid stories, we get back on track and discuss our favorite apps, Rick’s upcoming baby and Luke’s birthday!

Let’s skip the verbage and get straight to pictures of our ridiculously cute kids, along with links for our favorite apps.

Happy Birthday Super Luke!

Here are some very useful apps for our littlest ones just learning to point and use their fingers:

Kayla strutting into first grade.

Great and fun apps to help our preschoolers learn basic concepts:

Dexter and his huggable cuteness.

I am old school and definitely still prefer a real book.  However, even “book” apps like Dr. Seuss’ Book Collection provide interaction and are much more portable than lugging around a bunch of books.  

Our great story this week is actually a short little video that will make you smile.  Just check it out.

Finally, for the folks in Southern California, be sure to submit your pictures for Infantino and Step2′s Everybody Plays casting call!  This is an excellent chance to get your cutie in the spotlight and to meet the super awesome Kelle Hampton!

Download Down Syndrome Radio, Episode #10.
Better yet…subscribe, rate us and leave a comment on iTunes!

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DSR Episode #9: The Jérôme Lejeune Foundation

The mission of the Jérôme Lejeune Foundation is a simple and concise summary of the reasons why we started this podcast:  Research, care, advocacy.  Seems like a perfect match!

Dr. Jérôme Lejeune

Dr. Jérôme Lejeune was a French pediatrician and geneticist who, in 1958, discovered the link between Down syndrome and the extra copy of the 21st chromosome.  He was a fierce advocate for research and dedicated himself to finding treatments for Down syndrome and other intellectual disabilities.  His family established the Fondation Jérôme Lejeune in Paris to continue his research after his death in 1994.

Mark and some of the folks from the French foundation, including Mrs. Lejeune.

Our guest on this episode of the podcast is Mark Bradford, President of the Jérôme Lejeune Foundation, USA.  I had the pleasure of meeting Mark at the kickoff event for the Race Across America.  He is the Down Right Awesome Dad of seven children.  We probably could have spent the entire hour discussing how one handles seven kids, but the work being done by the Lejeune Foundation is so interesting we’ll have to save that topic for another show.  Mark gives us some history of Dr. Lejeune and the foundation that bears his name.  We also discuss how the foundation strives to achieve the three fundamental points of its mission.

Clockwise: Mark and his family, Mark’s sons Thomas and William and Thomas (left) and a friend at school.

Rick from Down Syndrome Daily joins us again for our story of the week.  This week, we hear the story of Mark Stanganelli.  In a ridiculous move caused by budget cuts, Mark was fired from his $12 per week job.  He was later reinstated and, when his story broke, received many other offers from generous folks out there.

Download Down Syndrome Radio, Episode #9.
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DSR Episode #8: Special Olympics

In the short time that we have been recording this podcast, we have always stressed the importance of siblings in our kids’ lives.  In 1962 one sibling raised the bar for brothers and sisters everywhere.  Rosemary Kennedy’s sister believed that people with intellectual disabilities should be given the same opportunities as everyone else.  With that vision, Eunice Kennedy Shriver, grew the Special Olympics from a small event in her backyard to a worldwide presence with over 4 million athletes and 1 million volunteers in 170 countries.

Barbara and her inspirations - the children, families and her brother, Steve.

Joining us in this episode of the podcast is Barbara Warman, Director of the Family and Young Athletes Programs of the Special Olympics.  Like her organization’s founder, Barbara is an exceptional sibling and was inspired to join the Special Olympics by her brother Steve.

Barbara gives us the rundown of all things Special Olympics – from how to volunteer and participate at the local level to the international spectacular of the World Games.  We take an interest in two of the Special Olympics initiatives:

  • The Young Athletes Program, which provides activities and fun while developing key motor skills in kids less than 8 years old.
  • The Global Family Leaders Program is a group of select individuals chosen to promote and educate about the mission and philosophy of the organization.

Our friend Rick from Down Syndrome Daily joins us again with an amazing story about a Canadian play about Down syndrome, starring nine actors who all have Down syndrome.

Download Down Syndrome Radio, Episode #8.
Better yet…subscribe, rate us and leave a comment on iTunes!

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DSR Episode #7: NDSC Convention Download

Running on fumes and adrenaline, we recap the highlights of the NDSC Convention from a very busy weekend in Washington, DC.  From advocating on Capitol Hill to dancing the night away – with workshops, exhibits, hallway and pool meetings in between, we get the lowdown on the “world’s largest family reunion.”  Mark and Rick share their experiences as attendees while Jason adds questions and comments based on the live stream option.  Overall, it was an excellent time with loads of useful information.

Apps and mobile computing are creeping into all aspects of our life, the convention is no different.  With tablet computers becoming integral tools in educating our kids, one workshop was completely focused on useful apps for all aspects of education, while many of the other workshops shared their favorite apps as well.  An excellent list of apps (and other great info) can be found here.  Also mentioned are two recommended apps to help our children learn about time and money – Jungle Time and Jungle Coins.  All of this app talk prompted us to share some of our favorite apps.  Our apps of the week are Monkey Preschool Lunchbox and Write My Name.

Getting away from the convention for a bit, our great story is about the dedication and perseverance of Matthew Egan and his reward of a black belt in karate.

Our closing song is an attempt to capture the closing moments of the Convention, when thousands of people were jumping up and down and rocking out to Firework by Katy Perry.

Clockwise: Closing party, grant winners and Luke with self-advocate Christopher Hunnicutt

See you in Denver in 2013!

Download Down Syndrome Radio, Episode #7.
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DSR Episode #6: Down Syndrome Daily and NDSC Convention Prep

In the first few installments of this humble podcast, we found ourselves continuously visiting one site for ideas for our “great/amazing/inspirational story” segment.  Down Syndrome Daily is an excellent resource for the Down syndrome community and we are very excited to speak with the man behind the site.

Rick and his family

Rick Kosmalski has been collecting relevant stories from around the web and compiling them on Down Syndrome Daily since early 2011, making it a one-stop shop for all things DS.  We talk with Rick about DSD, his lovely daughter Kayla and a host of other topics – his baby-on-the-way, school, gluten, croup….whoa!

Rick just so happens to be a veteran of our second topic, the NDSC Annual Convention, which takes place this week in Washington, DC.  We talk about what to expect at the convention, the excellent speakers and the fun events.  Mark and Rick will both be at the “world’s largest family reunion” – be sure to say hello!  If you are not going to the convention, you can virtually attend from the comfort of your home with the new live stream option.

We are also very pleased to announce that Rick will be a regular contributor to the podcast, chiming in with a great story for each episode.  This week Rick tells us about John C. Malone’s very generous donation to the Global Down Syndrome Foundation.

Download Down Syndrome Radio, Episode #6.
Better yet…subscribe, rate us and leave a comment on iTunes!

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DSR Episode #5: D.A.D.S.

A national organization comprised of dads dedicated to supporting the fathers and families of children with Down syndrome?  Heck, it’s even named D.A.D.S!  Sounds like a perfect match for our humble podcast about DS from a dad’s perspective!

In just over 10 years, Dads Appreciating Down Syndrome (D.A.D.S.) has grown from a group of eight fathers in Indianapolis, IN to an organization with over 50 chapters throughout the country.  Much of that amazing growth can be attributed to the personality and drive of its founder, Joe Meares.  We are very pleased to welcome Joe to Down Syndrome Radio.  Joe tells us about his Down Right Awesome daughter, Peyton, and gives us the lowdown on D.A.D.S.

Joe and his lovely family

An amazing young man named Andrew Banar is the subject of our great story this week.  Andrew is the owner of Group Hug Apparel, a website that sells clothing that sports his cool designs.  Check out his site, buy some gear and “Be Strong, Rock On!”

Download Down Syndrome Radio, Episode #5.

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DSR Episode #4: Special Needs Advocacy

IEP, IFSP, IDEA, NCLB….WTF??

Did you know that there are trained individuals who will help you decipher the acronyms and navigate the often confusing bureaucracy around special needs services?  Well there are, and these folks are called Special Needs Advocates.  You can enlist their help to ensure that your child with special needs receives all the services for which they are entitled.

We are fortunate to welcome Daniel Moreno as our first guest to DSR.  Dan received training and is about to embark on an internship at the University of San Diego and the Compass Family Center as a Special Needs Advocate.  More importantly, Dan is the Down Right Awesome Dad of Milo, who has made many an appearance on this blog.

Milo and Dan

The DRA team was stoked to play a small part in giving Team Xtreme a Down Right Awesome sendoff in the Race Across America.  Marc and Patrick Leblond rode their bicycles from Oceanside, CA to Annapolis, MD (almost 3000 miles) in less than 9 days to raise money and awareness for the Jérôme Lejeune Foundation.

This episode’s inspiring story is about Tim Harris, a young man with Down syndrome who owns a restaurant in Albuquerque, NM.  Be sure to watch the video and check out the Hug Meter!

Download Down Syndrome Radio, DSR Episode #4.

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Aint Seen Nothing Yet (the song – not a new episode!)

Hey all,

This is Mark from Down Syndrome Radio.  Papa Jason and I are planning on recording another episode on Tuesday evening.   In the meantime, I thought I would post the words/audio to the ‘Aint Seen Nothin Yet’ Song that is played at the end of the episodes.

Maybe we will play the real song instead of mine from now on.  I like the idea of mine, but my playing/singing is just too horrible.  Thus I decided to post it here so anyone who wanted to see the words (and the chords even) could come and see them.

All props and rights to Bachman Turner Overdrive.  Those guys rock.  If you are BTO and reading this, please dont sue me.  Here is the iTunes link to the real song if you want to buy it http://itunes.apple.com/us/album/you-aint-seen-nothing-yet/id405028?i=405010

Okay, without further ado, here is the song:

       A                       G   D       A                         G   D
When my lil boy was born.    He stole my heart away.

 

       A                                          G  D       A                            G   D
The doc said he had Down Syndrome.  God created him that way.

 

       D                                         F  G        A                             C#m     F#m
I thought his future would be limited.   But I was as wrong as I could get.   Ooooh ooohh

 

       Bm7                                                                   E
And he looked at me with those big brown eyes and said…..

 

       A                      E   D                                        A                     E   D
You aint seen nothin yet.   D-D-D-Daddy you just aint seen nothin yet….

 

                 A                            E  D                                      A                           E  D
I’m someone no one will ever forget.   D-D-D-Daddy you aint seen n-n-nothin yet.
     A                             G  D               A                      G  D
And now I’m feeling better.  Cuz we figured out the cure. 

 

     A                                      G  D                       A                 G  D
He needs some extra working with.   And some therapy for sure. 

 

     D                           F  G            A                          C#m     F#m
It turned out a few extras.  Was all that it would take.  All that it would take

 

     Bm7                                                            E
And he looked at me with those big brown eyes and said…..

 

       A                        E   D                                    A                        E   D
You aint seen nothin yet.   D-D-D-Daddy you just aint seen nothin yet….

 

                     A                         E  D                                    A                           E  D
I’m someone no one will ever forget.   D-D-D-Daddy you aint seen n-n-nothin yet.
 

And here is the link to the audio – You Aint Seen NOthin Yet Ver 2

Have a down right awesome day!

Mark

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WORD!

I’m a bit of a wordy. I love words almost as much as I love good cheese and milk. In case you don’t know me, that’s a whole freaking lot.

Learning that Dexter would have a tough time with speech was tough to take. Early on I was determined to nurse him, because it was what I planned to do all along and because I heard that it could really help improve speech. I also “wore” Dexter in a soft carrier pretty frequently vs. using a stroller or putting him down. The thought that he’d be closer to my face, hear sounds more clearly and also get lots vertical tummy time (which helps build muscles for sound production) just made sense. And again I wore my daughter too. Last, but not least, I count on my ever-chattering Eloise to rub off on him.

Around 6 months I eagerly awaited some baby signs or short words and was then deflated when they didn’t come. There were a couple of times shortly after this when a word did come and I would get so excited. At speech therapy Dexter was shown a puzzle piece with a bunny on it and when asked he said bunny, clear as day; just once and then never again.

Between then and now Dexter has started to pick up lots of signs. He is the king of milk, signs for food with gusto (he is certainly my son) and knows how to ask for more. He’s also become great at all-done, papa/mama, tired and my favorite poop.

Then the other night as Dex and I settled into the rocking chair he sat up on my lap for a bit to honk my nose and play. Then he tapped his head and said head, clear as day. I was overjoyed! You said head, I said. And again he tapped his head and said head – just like the dictionary says you should [hed]. I called Jason in and tried to get him to do it again. By now he was making the tired sign and he gave Jason a less clear rendition.

In the morning I feared head would vanish like bunny. But, after he woke up a tad, he did it again. And then I swear he tried to say Eloise. It sounds a bit like Dory speaking whale in Finding Nemo. Anyway we’re so happy to hear our little mans words.

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Happy Father’s Day

To our Papas that make the world a better place, Happy Father’s Day. We love you. Amy & Colette

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DSR Episode #3: Essential DS Resources

There are a ton of resources out there with varying degrees of useful information about Down syndrome.  We break down what we think are the most informative, helpful and enjoyable websites, books, blogs and podcasts (of course)!  See the big list of links below.

Our great story this week is a touching story of two people with Down syndrome getting married.  Michael and Melissa have known each other since they were two years old and were married on May 19th.  The article and some great pictures here!

As a bonus great story we talk about Reid, a friend of Down Right Awesome and veteran of Infantino’s Everybody Plays campaign.  Reid is featured on the back cover in a new summer Target circular this week! Way to go Reid!  And thank you, Target!

Associations

Blogs

Books

Events

Podcasts

Download Down Syndrome Radio, Episode #3

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DSR Episode #2: Telling Family and Friends / Common Medical Conditions

You may be thinking….two topics?!?!  Why not?  Yes, we attempt to tackle two topics in this episode.

Luke with Grandma and Grandpa Owens

The second half of this episode picks up where we left off in Episode #1.  After we received the news, how did we go about telling our friends and family?  In person?  Email?  Facebook?  While it is perfectly understandable to immediately call your closest family members and just blurt it out – I know that is what I did – we decide that, while a little impersonal, some sort of indirect method of informing people is probably the best.  This gives them some time to do some research and learn about DS before a more direct interaction.  Personally, I sent an email to my closest friends then, when I became more confident and comfortable with all of the information, posted on Facebook.  The outpouring of support was overwhelming.


Before we dig into the personal stuff though, we discuss the medical conditions for which people with Down syndrome are at a higher risk.  The NDSS has an excellent online guide describing many of these conditions.

In our discussion, I mention a study conducted of parents, siblings and people with Down syndrome.  Here are some of the results:

  • 99% of people with Down syndrome said they were happy with their lives
  • 97% of people with Down syndrome liked who they are
  • 99% of parents said they love their child with Down syndrome
  • 5% of parents felt embarrassed by their child
  • 97% of brothers/sisters, ages 9-11, said they love their sibling

Our great story of the week is the success of Kelle Hampton’s memoir Bloom.  Bloom reached #11 on the New York Times bestseller list and definitely crossed over to the mainstream audience.  Her blog and particularly the birth story of Nella are very popular in the DS community.

Download Down Syndrome Radio, Episode #2.

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DSR Episode #1: Getting the News

Two week old Dex, big sister Eloise and I

Welcome to the inaugural episode of Down Syndrome Radio by the Down Right Awesome Dads, Mark and Jason.  In this episode, we introduce ourselves and share our stories about receiving the diagnosis.

Being informed that your newborn or in utero child has Down syndrome is the first and probably the most difficult hurdle to get past.  Once you realize that there are people with DS thriving in the world, it is much easier to see a positive and unlimited future for your child.  You realize that it is only a matter of time before your son or daughter looks you in the eyes and says…

D-D-D-D-Daddy, you ain’t seen nothin’ yet!

Baby Luke

Here is a link to our amazing story of the week.  Go Max – the Man, the Myth, the Legend!

Download Down Syndrome Radio, Episode #1.

Related: Down Syndrome – Getting the News.

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Introducing Down Syndrome Radio!

First, let me introduce myself.  I am Jason, father of the cute little guy floating over Times Square in the logo above.  Up until now this space was mostly filled with the wonderful musings of my lovely wife, Colette.  I am nowhere near as eloquent as she, but I have been trying to find a way to provide my voice to this space.

Dexter and I

When my friend, Mark – fellow Down Right Awesome dad and a podcast veteran – noted the lack of regular podcasts about DS and suggested that we just do our own, I jumped at the chance….well, I was a little hesitant at first, but with a bit of arm twisting, Down Syndrome Radio was born!

Luke and Mark

We are doing the DSR podcast to share our stories about parenting children with Down syndrome – from a dad’s perspective.  We are definitely not experts, but hope that we can help other parents going through similar experiences.

At this point, we have recorded three episodes and plan to continue to try to record about once per week, shooting for about an hour per episode.  We would love to incorporate guests as we progress and the topic allows (less work for us!).  We have a pretty good grasp of the format for the show, but we will continue to experiment as we go forward.  Please, feel free to leave comments or send us email – let us know what works or doesn’t, tell us your story, ask us questions….anything!  Enjoy!

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I Am Going to Say the Wrong Thing…Tell Me What I Shouldn’t Say

I’m on a plane again. Skywriting seems to have become a pattern in my posts. From my 2.5’ x 2.5’ box seat I think about all the posts I’ve wanted to write yet haven’t typed out. I think today’s post will be one I’ve put off for too long, but really want to share.

I was a shadow of myself after Dexter was born. I was frightened and quite honestly in a state of significant shock. In the hospital I wished for a pain greater than the one in my heart. I’ve only felt hurt like this once when I lost a good friend way too early and unexpectedly.

Comparing my son’s birth to a death always makes me feel incredibly guilty – because I feel like I was the first person to marginalize his worth – even if it was unintentional. My grief was for the loss of what I thought would be, the child I fully expected to have but didn’t. Unfortunately that sorrow and disappointment kept me in blinders and I couldn’t see how things would be okay.

People told me it would be okay. I got angry. You can’t say that I thought, you don’t know. People told me I was chosen because I was special or strong. I got confused. That’s not logical, I reasoned. Folks talk about people they met like my son and how happy they always seemed. I was frightened. I don’t even know my son yet – how can you?

Let me be clear. All the things that were said were done so with love and good intention. Nobody meant to hurt me and I felt so guilty and ungrateful for being upset. The thing is sometimes what you think is the right thing to say just isn’t, no matter how good your intentions may be. I can say this because I have said a lot of wrong things in my life with the intention of comforting a friend and knew deep down that I wasn’t helping.

With in a short time I started to have conversation anxiety. I wanted to protect myself from words I didn’t want to hear and avoid feeling ungrateful. I started to avoid people, friends and family altogether. And then a very good friend called. My withdrawn self thought twice about answering. Dexter was sunbathing in his Moses basket and I was determined to stop my consecutive crying. Luckily for me I did eventually answer. And when I did the words on the other line were powerful and freeing.

I am going to say the wrong thing, she said. Tell me what I shouldn’t say.

And I did. Without a tear. Comfortably.

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Adding My Voice

From the moment Milo was born and diagnosed, I’ve been writing to you all. Figuratively, that is. I’ve wanted to release my words out there and let them find a home where they may. I’ve wanted to produce documentaries to show the beauty of our everyday and how far we have come and how far we have to go. I’ve wanted my voice to be added to the thousands of others sharing this journey so that when another couple is delivered “the news”, they can see another example of how they are not alone. You see, that’s what the community of bloggers out there did for me. They kept my head above water in those early months, and I will never be able to express my thanks. I have tremendous respect for all the wonderful families who have offered their experiences so that others may learn from them. Words simply fall short.
I’ve been hesitant to write. I’m nervous to post. I’m scared to allow myself to be publicly vulnerable. The past 15 months have been a time of observation and introspection for me. They’ve been a time filled with grief, awe, confusion, painful and beautiful growth, and most importantly a time filled with tremendous love. In addition, I’m no Hemingway.
But with encouragement from our lemonade maker, Colette, I will throw my hat into the proverbial ring. We may have differences of opinion, and different approaches to advocacy, but what I find the most comforting is that we experience many of the same joys, and many of the same challenges. I humbly add my voice to the numerous others to raise awareness for my son and others living with Down syndrome.

Hopefully I’ll get posts out more often than Halley’s Comet comes around, but in the meantime, know that my son is AMAZING and cherished, know that there is much joy in our life, and know that I am beyond thankful to my family, friends, and new friends, for what they have done for me and my little family thus far.
I hope that I can return the favor and support you.

Amy

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Big Apple, I’m After Your Core

To New York City I fly
The polar opposite appeals
Rerun my day, I won’t
I prefer to clear the board
Live the story of the now
Forgive me, then

Concrete, fast streets
Live up to your promise
Fill me, the determined
Make me desire your pulse
And beat to your drum

Laden with stop lights
You still command go!
By example I must proceed
Fast, forward

By Colette Cosky

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One Day I Pondered…

Milo & Dexter's First Play Date

It was a spring day in San Diego. I took Dexter, a few months old, to Balboa Park seeking sun and solace. Not too far from the grand fountain I pitched his play gym on a strip of green grass and waited for Amy Liebengood, Milo’s mom.

Dexter at Balboa Park Waiting for Milo

I sat there alone for about 20 minutes. Dexter was in baby heaven under a muslin canopy I rigged over his gym. As he batted toys, cooed and fell asleep drunk on fresh air I looked around and pondered. During this time I was still grieving and trying to make sense of something I never expected. I was also trying to go a single day without crying.

At one moment my random string of thoughts focused on disability and impairments. As I watched complete strangers young and old pass me by I thought how many of us would be disabled or impaired without science? Hear me out.

The fact is if Synthroid and surgery were not medically available I’d still be dealing with Thyroid cancer. And if glasses had never been invented Jason would be legally blind. And then I remember I was once dependent on glasses but took care of that with laser surgery. How would I get around without being able to see clearly beyond 5 feet? I certainly wouldn’t drive. And then I looked beyond my family and at the strangers passing by and thought how a majority of these folks probably depend on something to help what could have been a disabler in their life. Bad hearts, failed organs, mental health challenges, high blood pressure and on and on the list ticked off in my head.

How easy it is to forget that without science a lot of us would be leading a much more challenging life. I admit I took it for granted. Heck I had to remind myself I had eye surgery at my own pondering party!

So then I turned to Dexter, and warm tears filled my eyes. Some of the hardest things you’ll have to overcome still have no treatment. It was at this moment I told myself I’d find out more about what research has been done and maybe do something to remind folks, who’ve been helped by science of the past, to support the science of the future.

Amy arrived, sat down and I said, within a few minutes or so, “tell me about the research”. I was so happy to hear about everything on the horizon but there is still a lot of work to be done.

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Sibling Revelry

You never know how a child will react to the arrival of a sibling. Very quickly we learned that Eloise, our 3-year-old, would be serial squeezer. I think we’ve said “not so tight” over one thousand times to date. As soon as Dexter is out of our arms, whoosh goes Eloise in a blur of blondeness to wrap Dexter up in her super squeeze. It’s endearing and frightening all at once and basically everything we hoped for. Here’s to loving with wide-open arms!

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Chutes & Spirit Lifting Ladders

When I was on KPBS Midday Edition with Maureen Cavanaugh I mentioned my experience with Down syndrome being a bit like Chutes & Ladders. If you don’t know the game it goes a little like this. Some moves can send you high up the board others can have you sliding back to where you began. During the month of October life was all ladders. Dexter’s personality was starting to show and he was doing great. Ladder.

The NPR series was really happening, Down Right Awesome was becoming a reality. Ladder.

Our Buddy Walk team kicked butt, and Infantino and Kelle Hampton said “yes” to Everybody Plays. Ladder!

In November though, things went a little south.

Things slowed down a bit and it gave my mind time to wander into places I’d rather it not go. I worried because Dexter seemed like he wasn’t babbling as much and “da, da” was the only sound he was making. I also worried that he wasn’t trying to crawl as much. Chute.

Over Thanksgiving I got caught off-guard by an older woman wandering through the Avila Barn Shop near San Luis Obispo. I had Dexter wrapped up close to me snug in the carrier while I happily inspected jars of jam, hot cocoa mixes and handmade ornaments. When I looked up, there was the woman. She looked at Dexter and then to me and said “sorry” and winked. This all happened very quickly though in my mind it runs in slow motion. In a knee jerk reaction, before I realized what she was apologizing for, I said “no worries”. I have a tendency to wing out my arms and bump people with my elbows so I assumed I’d done it again, and she had mistakenly thought she bumped me. Within moments though I understood what she was “sorry” for. By this time she was lost in the crowded shop and I was left standing with words that needed to be said but no place to go. Chute.

I did not share this with anyone at the time it happened and carried it with me for a bit before I even shared it with Jason. His words, “f-her” – and I know he meant that in the best possible way. I shouldn’t let someone who was obviously misinformed get me down. But I did. I am human.

Since that day I have had time to reflect on that missed opportunity to educate the woman in Avila Barn and until recently I’ve just beat myself up for words not spoken. What helped me turn the corner was a deeper look into why I missed her remark and the answer is quite awesome. Her remark flew over my head at first because Dex and I were just hanging out. Yep, just a mama and her chubby marshmallow man (he’s quite chunky, very white and super sweet) enjoying the day. Down syndrome was the furthest thing from my mind. Ladder!

I am so excited to wrap up the last couple of weeks in 2011 with my family and feel really grateful for all the ladders and the lessons learned from those darn chutes. We have so much to be happy for. Joy for our world!

~ Colette

Be a Santa Cause

With Christmas upon us the best gift I can imagine is acceptance for my son and support for research that can make a big difference in his life. If you’ve got someone on your list that just has everything and you’ve resigned to just get something, maybe try being Santa Cause this year. Consider making a donation in their name to the Down Syndrome Research and Treatment Foundation.

DSRTF’s mission is to help accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome.

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Thanks & Giving

Around the table each year we take a moment to share what we are most thankful for. This year my reply will be family & friends, both old and new.

I’ve always heard that you should count your friends during the tough times.  And when I did, the number was greater.

To you, our friends who’ve given us your love, time and support, we extend the sincerest of thanks.  We wish you and your family a great Thanksgiving.

 

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Man Your Posts!

Blogging is hard mostly because you need to keep up with the regular post part. I promise I will try to get one up every week and do a better job manning the post!

Okay so I intended a Whale of a Post, felt lukewarm about a portion of it and now it is a minnow. Anyway I want to talk a tad about UCSD, upcoming fundraising and awareness initiatives and 501c3 filing . Next week I promise a look into my amazing experience working with Kelle Hampton, kick-butt photographer and all-around awesome gal.

Dissecting the Science

I have now been to UCSD twice. The first time I met with Dr. Mobley to talk about the upcoming KPBS series. The second time I took Kelle Hampton with me to tour Dr. Mobley’s lab and meet the scientists behind some incredible discoveries. I am slightly apprehensive about writing this portion of the post for 2 reasons. The first is I’ve never been awesome at science and feel out of my league. The second, I’m afraid to mix classified with declassified intel. So I am going to keep it very top level.

Each time I have left UCSD I exit more fired up than before. The information I am given, which is actually provided in a very easy to follow way (mostly), fills me with hope, direction and purpose. I want to impact the speed at which the cognitive research and clinical trials are happening and I know that will take funding, education and awareness. I have always been surprised at how little people know about what’s happening whether is it is a fellow mom with a child who has Down syndrome or one of the many doctors I see for Dexter.

Obviously I can’t continue to be Miss Vague in my posts and I don’t intend to be. One of my next big goals is to help report snippets of the science (that is declassified) in a way I think most people can digest it (this has nothing to do with comprehension and everything to do with how overwhelming and not easily transferable the information can be). I’d also love to get some podcasts for parents and pediatricians made and ask Dr. Mobley if he’d be up for some parent-Mobley Q & A’s. We’ll see.

What’s Next?

We have a go big or go home attitude here at Down Right Awesome. So when we’re planning things they tend to come in intertwined batches, planned for significant impact. Right now in our brainstorm cloud, we’re thinking about a high profile auction, a pediatrician education symposium, a new take on support groups, podcasts (as previously mentioned), guest chef or food truck gathering events, and more. While things seem a little quiet on the DRA home front just know good ideas are cooking.

501c3-to-Be

A 501c3 status is another thing we’re working on. I am taking a page from my fabulous friends at Saving tiny Hearts. They take 96% of all the money they raise and give it directly to research. For us this seems like the most effective path to help meet our goal of turning research into reality for our kids. This task is not a small one, and we’re on it. We’re hoping to file in the next week or two and then we can officially start taking donations, sell our Sweet T’s (without crappy tax implications) and hold fundraising events. We will be posting an order form for the t-shirts shortly and we’re even looking to advertise them with Facebook and Google ads!

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Team DownRightAwesome: San Diego Buddy Walk 2011.



You can also subscribe to our DownRightAwesome Youtube Channel.

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Action, Down Right Awesome Reaction!

Signs don’t hoist themselves into the air. Donations don’t just appear. And at last check, shirts can’t wear themselves either. Point is, it takes you, and without your support last weekend’s highly successful event would never have been possible. Thank you everyone! Over $10k raised & 84 Walkers!





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KPBS Podcasts.

KPBS Logo


October 17th Monday: We’ll hear from parents, discover available resources, find out why advocacy is so important and look at clinical trials underway right here in San Diego. Joined by San Diego parent Colette Cosky who learned her eight-month-old son Dexter had Downs Syndrome, right after his birth. Colette Cosky, San Diego mother of two, runs Downright Awesome blog.


Related: Down Syndrome – Getting the News.


October 18th Growing Up With Down Syndrome – with Jackie Husson (President of the Down Association of San Diego) and Frank Husson (a grown son with Down Syndrome who lives independently):

Related: Growing With Down Syndrome.


October 19th – Support and Resources – Joyce Clark (board member, Down Syndrome Association of San Diego) and Erin Grettenberger (Infant Development Specialist/Parent support trainer)

Related: Support and Resources.


October 20th – Treatments, Clinical Trials and Policy – Part 4 of 4 – Down Syndrome, with news of clinical trials getting underway in San Diego that could help lead to better cognitive function. There’s a link to Alzheimer’s disease. There’s a link to Alzheimer’s disease. Also, public policy and how one woman in Washington is helping researchers locally. For more information on participating in the local clinical trial call 858-657-8540.

Related: Treatments, Clinical Trials and Policy.

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It’s Series Time, Make Sure You Tune In!

Team Down Right Awesome

Down Right Awesome has been working with KPBS to create a 4-part series on Down syndrome. It will air live this Monday through Thursday, October 17 – 20, on Midday Edition with Maureen Cavanaugh. I will open the series on Monday by taking folks through my experiences; everything from learning Dexter has Down syndrome, to how it has impacted the day-to-day life of my family. On Tuesday and Wednesday our local Down Syndrome Association will be interviewed. They will talk about what Down syndrome is and isn’t as well as services available to the community. I am also pleased that Erin Grettenberger will be joining in Wednesday’s discussion. The series will wrap up with the latest advancements in research, including upcoming clinical trials that will happen right here in San Diego at UCSD. Maureen will be interviewing Dr. William Mobley and I can vouch that he is a very compassionate, caring and dedicated scientist worth tuning in for.

The Down Right Awesome crew has decided this is our time. Momentum is building thanks to the work done by Dr. Mobley, Brian Skotko and others who are bringing Down syndrome into the light and out of the dark ages. We are the soldiers of this cause prepared to advocate and advance for our children. We’re not here to blend; we’re here to defend! Please listen in to this series and spread the word. The key to a movement is motion and we need your support to keep things going forward. Please tune in to Midday Edition this week, M-TH on 89.5 FM from 12-1pm. The show is an hour and I think our segment is near the end, each segment running 10-20 minutes. You can stream KPBS by following here or clicking “live radio” on the top right corner. I also want you to know that you can call in to make comments and ask questions so listen for the call-in number. Last but not least, KPBS would love to hear what you have to say. You can send your questions and comments to plane@kpbs.org (if the direct link does not work, just copy and paste the address into your email). Your participation will help keep the conversation on Down syndrome going and increase the potential for future coverage!

Thanks everyone and please spread the word!

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The Big Day Bulletin

Buddy Walk 2011 Info

We can’t believe the walk is just a few short days away and that over 70 people are expected to join our team! Above are all the details you’ll need for the big day. There will be nectar of the gods (aka coffee) and breakfast goodies at our Down Right Awesome headquarters (located on the lawn of the Hall of Champions, see map above). We’ll also be passing out our sweet team t-shirts too.

Once we’re all in attendance we’ll take a quick walk over to the main event site together to enjoy the opening ceremonies. And then we’ll start the walk with a big brass bang (thanks again Euphoria Brass Band)!

When we finish the walk we want to show our appreciation to all of you amazing folks who support and love our boys. So we’ll head back to Down Right Awesome headquarters and kick-off our post-walk picnic with delicious sandwiches, gourmet salad creations, famous peanut butter cookies and some tasty beverages.

We love you all. See you on Saturday!

Colette, Jason, Amy & Dan

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Sweet T’s

Down Right Awesome Team T-Shirt

I thought about holding off on this post since the shirts have not yet arrived on our doorstep. I am taking a chance though in hopes of enticing some more folks to sign-up with this sweet T. Pretty cool huh? Yet another amazing Kelsey Donahue design. Our donors and walkers will all get a Down Right Awesome T-shirt for showing their support for Dexter & Milo.

We’d like to thank Larry at Dunbrooke for making these shirts at cost and Infantino for picking up most of the tab. I’d also like to thank Francie Paul from Saving tiny Hearts for helping me coordinate all the T-shirt purchasing. Can’t wait to hand these out on Saturday morning!

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Signs of Support, Sign of Friendship

Sign of Friendship

The Buddy Walk is almost here and we’re getting ready. This is our first time participating and I am sure it will be a very emotional day for us. In fact, when I heard the Euphoria Brass Band play a few weeks ago, I thought about all of our friends and family walking together, and I choked up a little. The outpouring of support shown has been amazing and we can’t thank everyone enough for believing in and supporting Dexter & Milo. We couldn’t have asked for better people to be woven into our lives. You are all Down Right Awesome.

Love, Colette & Jason

The Buddy Walk is this Saturday, 10/15/2011. If you’ve been meaning to sign-up you still can. Just click here.

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It’s Down Right Awesome™

Designed by Kelsey Donahue

Down Right Awesome™ was created for Dexter & Milo; two awesome boys with a lot of potential that happen to have Down syndrome. Here, on our social spaces and in other cool places, we gather with our ever-growing group of friends, family and folk to turn research into reality. We know it is possible if we advocate for funding, fight for more inclusion and erase limiting stereotypes.

Are you down with that? If yes, join us and make things happen! Together we can, using our natural talents, do great things.

Down Right AwesomeAlso, please join the Down Right Awesome Team for the Down Syndrome Association of San Diego Buddy Walk! You can help make a difference. You can help change the world.

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