Josh and I did a test BlogTalk radio show last week.   We called it "Center Stage with Josh."  He did a 30-minute interview, and I'll admit most of it would only be enjoyed by those of us who know and love him....  but there were a few minutes that I wanted to share with my readers.  

When I told him that I wanted to do an interview he was excited, to say the least.  He told me that he was, after all, a "famous rock star."  He enjoyed the opportunity to sing for his fans, and at one point he created a special song just for me...

and when time was up, he gave his audience a fond farewell...

People who have Down syndrome are living longer than they were before.  Not long ago parents were told that the average life span was 25, now it’s double that and more.  There are so few stories about adults who have Down syndrome in the public conscience, in mainstream media, that those who don’t have personal experience tend to generalize base on what they’ve been exposed to.  We saw it happen with regards to autism when the movie “Rain Man” was released.  Some people thought they understood “Autism” because they watched Dustin Hoffman’s portrayal of one person who was on the spectrum.  It also happened when “Life Goes On” first came out on television.  Everyone thought that Corky was a “typical” person who had Down syndrome.  While both of these examples portrayed basically positive images of the two syndromes, any one piece of art, or one story can not, and should not define an entire segment of the population. 

The public perception is limited by exposure to real people and their stories.  I hope to bring more stories to life by creating a space to share.  I want to enable parents and adults who have Down syndrome to give their own personal perspective on what living in our changing society has been like for them.   Sharing with each other and the world we can all learn, not only about Down syndrome specifically, but also about how we treat each other and what we can do to make the world a better place for everyone.

I envision each story as a unique piece of precious glass in a mosaic that is only beginning to come into focus. 


 

Josh and I laughed for hours last night.  I laughed so hard my stomach hurt.   As I tend to do, I started yawning and could not stop.  Every time he heard me yawn he'd yell "Just go to bed!"  or "You need to sleep!"  It may not win me any mother of the year awards, but I'll admit it now,  I love to tease him.  He's got such a good sense of humor he plays along and has fun with me.  He started giving me a list of things I needed to do in order to "go to bed."   

And so it started.  (First of all, the fact that he got a list of complex directions is amazing, but that's not what this is about.)  I began with, "what about the TV?"  He was quick with that one - "NO! Not the TV!" (he was watching it) "I said... turn off your light!"  Then I'd say, "But the cats can't turn the light off, they're too short."  He'd laugh and respond with, "Don't tell the cats that!  Tell them to get out of your room!"  (Which is hysterical in itself, like they would listen...)  Then he'd start the list all over and pretend to get frustrated with me for not understanding.  This kind of banter lasted for hours until finally he said "You do this every day, all the time!"   He was letting me know that he was on to my shenanigans.  The point of telling you this story is his next line - "Mom, I'll always love you, but you are getting on my last nerve! Just go to bed!"

Once I finally stopped aggravating him and went to bed, as I laid there it occurred to me:  I really don't care if he knows things like what twelve times twelve is or how to calculate the area of a triangle.  What's really important is that he knows I love him.  Throughout this comedic drama, I'd stop and say "Josh?...." and his answer would be, "I know, I love you too.  Go to bed!"  

it's too bad I can't show him!

This screenshot is from a YouTube video that shows 16-year-old Frankie Antonelii and Darius Rucker performing together at a high school talent show.  How fabulous is that!?

Josh would be so jealous, and convinced it could happen to him!

Every year, he writes his Christmas list, and last week he started this one.

You can't really read most of it, but since I could hear him trying to sound out the words, I happen to know that #5 says:

I will meet Rob Zombie in concert

If he saw this video he would think it was a usual thing for famous musicians to show up and perform with
"regular" people . Since we know this is a very special thing for Darius to do, I wouldn't want to give him false hope.  But boy, what a story!  

I found this story because another mom posted in a group that I belong to (and LOVE) about how it upset her that the the author of this wonderful story used the language "young man is afflicted with Down syndrome."  Other moms gave her support and expressed their understanding.  Then she said that she tried to politely let the author know that the language was offensive, only to be called "the PC and grammar police," and have her comment removed from the site.  She expressed what we all know: "there is no need to make Frankie's life sound anything other than awesome."

As we continued to discuss how some language is more offensive than others, and how some people's ignorance is more discouraging than others, the mom went back to the site and realized that the author had changed the words to " a teen with Down syndrome."   

In my mind, that makes this great story even more fantastic!  Every time we change even one person's view, we have created a ripple effect that continues in ways we'll never know.

Thanks so much Darius Rucker (@dariusrucker on Twitter) and my new cyber-friend "Donna" for really making my night!

Watch the video - you'll be glad you did!  

By all accounts, Gretchen Josephson is a very accomplished woman in her late fifties.  She was a dedicated worker for thirty-seven years, is certified in scuba diving, authored multiple books of poetry, was a keynote speaker at a conference in Milan, Italy, and had dinner at the base of the Eiffel Tower.  She’s also had her share of heartbreaks:  she watched her father deal with dementia, was disappointed by a failed marriage, and lost her mother suddenly due to a fall.  Luckily for her she had a very close-knit and supportive family who “included her in everything.”

Why wouldn’t they include her, that’s a given right?  Well, not necessarily.  Gretchen was also born with an extra chromosome at a time when conventional wisdom was to exclude people who have Down syndrome to the point of institutionalization.  

Patty McFeeley, the oldest of the four Josephson girls, talks about life with her family in a very easy, upbeat way that made me wish I had been a part of it.  Both parents were physicians and together they made the decision to keep Gretchen at home with their three other girls.  Gretchen went to special education classes in a regular school in Denver, but not always the closest school to her home.  She learned to read and write well, and with a little speech therapy, she became an extremely effective communicator.  She grew up with chores just like her sisters.  She has always been aware of the fact that she has Down syndrome and in her later years became an active self-advocate.  Hers is a story of inclusion and success in a time when supports and services that we all try so hard to get were non-existent or only emerging.

In 2007 things started to change for Gretchen.  Tasks that she had been used to completing independently became more difficult.  She need more help remembering and making good, safe choices.  Within a few short years, the diminishing affects of Alzheimer’s disease have changed her, physically and mentally.  Gretchen’s family is now faced with difficult decisions regarding their sister’s medical care and quality of life, in ways that they have not had to before. 

During this remarkable interview, I sat in awe as I listened to Gretchen’s story as told by her sister.  There was no hint of “burden” that people (outside our community) insist on inserting into our narrative.   I didn’t get the feeling that Gretchen’s sisters resented the extra time or attention she may have needed.  I didn’t hear a long list of things that Gretchen could not do.  Instead, I heard a story of love and understanding, acceptance and support. 

We spent so much time talking about Gretchen’s accomplishments and successes that we ran out of time to talk about the recent developments in her health and ended up continuing the conversation way past the scheduled two-hours. 

There is no doubt that Alzheimer’s disease is devastating, not only for the person who is diagnosed, but also those who love them.  Hearing Patty talk about the changes she and her sisters have seen Gretchen go through is painful, and scary.  But I’m extremely grateful for the opportunity to listen and connect a personal experience to the scientific information being presented this week.  Gail and Patty did a wonderful job giving a voice to the power of narrative.

Also, only when the conversation turned to the recent past did the subject of competency and the issue that is front and center to all parents of adults who have Down syndrome even come up.  Gretchen was consulted and agreed to give her sisters power of attorney when it comes to medical issues.  She has never been declared “incompetent” or been assigned a guardian.  For me, this is remarkable perhaps because of the countless conversations, classes, and conference sessions that I’ve been included in over the years since Josh turned eighteen.  Maybe it’s because I’ve heard so many parents talk or write about how they have been “forced” to take control of their child’s legal rights or be denied services.  It might even be based on what seems to me as an overwhelming “conventional wisdom” that people who have intellectual disabilities “need to be protected” from themselves.   Hearing Patty talk about Gretchen’s story in such a ‘matter of fact’ way, making it obvious that there was never any doubt regarding the ‘right’ decision, made me feel more confident about my own decision not to become Josh’s guardian.

Thank you so much Gail Zahtz for hosting this conversation and Patty McFeeley for sharing a piece of your sister's story with us!   It has changed me, and I’m sure anyone who listens will learn and appreciate your time.

To listen to the recorded show, visit Gail’s BlogTalkRadio site.   

This exciting week continues tomorrow as Gail interviews documentary film maker BANKER WHITE about his films in general and specifically "The Genius of Marian" about his mother's journey with Alzheimer's.  For more about this upcoming interview, see Gail's article on Demand Design.

Wondering what exactly a Tweet Chat is?   

Today, it was having two great guests from the Global Down Syndrome Foundation talk to thousands of people about the link between Alzheimer's Disease and Down syndrome.

It was also a head spinning, fast paced, information packed hour!

Definitely not easy to keep up with for anyone who doesn't use Twitter on a regular basis (and still somewhat daunting for those of us who use it occasionally).

The good news is that there are tools - and people like me who love to crunch data - that can make it easy to catch up on what happened - after the dust settles.

First up - many thanks to Gail Zahtz and the fine folks at Carpool Health for making it such a success!  The people involved are very open, honest, and caring individuals who have a strong desire to help wherever they can.   They do a great job with whatever topic they tackle, always come up with thoughtful solutions, and of course, more questions for further investigation once the hour has passed.  Feeling very lucky to have found them!

Today's BIG THANKS goes to Dr. Dennis McGuire and Michelle Sie Whitten from GDSF!  This week's topic on the link between Alzheimer's Disease and Down syndrome is something that is very important to me and I'm grateful to have access to such experts!

• Up to 50% of people who have Down syndrome will get early onset Alzheimer's  (late 30's/ 40's)
  
• 2/3 of people who have Down syndrome and experience a loss of function do not have Alzheimer's but rather a reversible condition treatable by addressing things like sleep apnea and lifestyle stressors
  
• IQ level does not seem to have any impact on whether or not a person who has Ds will develop Alzheimer's
• When looking for "indicators" of early onset Alheimer's, short-term memory changes can be important but you still have to rule out other issues
• GDSF has put together a very helpful map of medical centers that specialize in the treatment of patients who have Down syndrome!

Gail is, as she says, "All About Action," so of course she asked the GDSF representatives what they need and how we can help.  What followed, in the true spirit of Twitter, was a discussion that reached into the soul of this mom and I'm sure many others:

Wow!   Like I said - head spinning!  I would have never thought such an eloquent response to a highly complex question could possibly be written in 140 characters or less.   Thank you GDSF for nailing that one!

Today's chat had 1,935,967 impressions in an hour!

That's a huge number of times that #CHPC was sent across the Twittersphere and a huge audience for our cause, and it's only Tuesday!

The conversation continues tomorrow at 10:00 am with an interview you won't want to miss!  Patty McFeeley, will be Gail's guest on BlogTalk Radio .  She is the sister of Gretchen Josephson, who is the 59 year-old author of "Bus Girl", and an adult who happens to have dual diagnoses of Down syndrome, and Alzheimer's Disease.  

You can also catch up on all the events, follow-up discussions, and resources at the Down Syndrome community page on Demand Design.

It's been a great week so far and I'm looking forward to the rest!

In grad school I hated statistics.  I just don’t get along well with numbers.  But, even I had to sit up and take notice today when Dr. Potter said that if we all live to be 85, half of us will have Alzheimer's disease and the other half will be caregivers.  

Another of those pesky statistics that he mentioned was that between 50% and 70% of people who have Ds will develop dementia in adulthood. 

That is huge!

Dr. Potter did a fantastic job describing the main issues and progress that has been made in this area with simple terms that even someone who is predominantly right-brained (and maybe a little allergic to numbers and science) can understand.

Here’s a brief summary of what I learned today:

Why is there a link between Down syndrome and Alzheimer's disease?

• Research has found that there is a protein on the 21st chromosome that is linked to the ‘plaque’ in the brain that is one of the causes of Alzheimer's disease.  Because people with Ds have three copies of this in every cell instead of two (T21), they are more likely to develop Alzheimer's disease.

• People who don’t have Ds but do have Alzheimer's disease end up with some cells that have T21.

• The ‘plaque’ or amyloid deposits in the brain progress faster because of the T21 and therefore people with Ds get Alzheimer's disease sooner, sometimes 20-30 years sooner.

In other words, the key “Alzheimer gene” is on the 21st chromosome.

What is currently being done?

• Dr. Potter and others believe that studying the link between Ds and Alzheimer's disease will provide answers on how to slow and eventually cure all Alzheimer's disease.

• Collaboration between the Linda Crnic Insititute for Down Syndrome and Dr. Potter’s newly established Alzheimer’s Center will examine links between the two diagnoses in patients located in the Denver/Boulder area.

• The Global Down Syndrome Foundation, the Alzheimer's Association, and the Linda Crnic Institute for Down Syndrome have awarded $1.2 million in research grants to five scientists (in CA, KY, SC, and Israel) for innovative investigations that explore the development of Alzheimer's disease in individuals with Down syndrome.  

Research in this field is the key to helping a huge number of people, especially baby boomers and people with Down syndrome who are living longer.  Without answers we are facing a serious healthcare crisis.

What can we do now?

Spread the word – more people need to realize the impact that Alzheimer's disease is going to have on our country in the near future and get involved in finding answers now.

Help increase research funding – answers will only come from research.  Research only happens when it is funded, either by the government or private entities.  

Exercise and stimulate the brain – Dr. Potter reminded us that “what’s good for the heart is good for the brain.”  Heart health including cholesterol levels and especially exercise can slow the progression of Alzheimer's disease. 

Participate in research – those of us who are caregivers of adults who happen to have Ds need to consider supporting our loved ones as they volunteer for research studies.  According to Dr. Potter, they start accepting participants around the age of 30. 

Find out more – Dr. Potter will be sharing more primary data with Gail so that those who are interested can learn more about the current research and where it is headed.  Information is also available on the Global Down Syndrome Foundation website.

My Perspective

As a parent, I was struck by the thought that Ds is mainly getting attention from researchers because of its relationship to other conditions.  Dr. Potter talked about how little Ds research is actually funded.   

We are seeing however, this research with the link between Ds and Alzheimer's and research currently being conducted that looks at why people who have Ds tend not to get solid tumors.   Call me skeptical, and I’m not in any way saying that the research shouldn’t be done, but as a parent, I have to say it looks like it’s okay to fund research on Ds only when it can help people who don't have the syndrome in addition to helping those who do.  (Granted, I'm not one who thinks we need to find a "cure" for Ds, but certainly some of the other reasons presented by GDSF on their page entitled "Why Research is important" are valid, in and of themselves.)

Also, I was somewhat relieved to hear Dr. Potter say that the increased risk for early-onset Alzheimer's disease in mothers who give birth to their child who has Ds before they are 35 has not been fully researched.   I was under the impression that I was five times more likely to develop Alzheimer's disease myself while caring for my adult son.  



In all, the interview was extremely informative and I am so glad that I listened.  This is a topic that is important to all of us.  I’ll be the first to say that I was afraid of what I’d hear, and that not all of the news is good.  But the only way to combat an issue like this is with knowledge.   

As I'm getting to know Gail, I could hear the wheels turning as she asked questions with action oriented emphasis.  I look forward to finding out what she has up her sleeve to help advance this cause that is near and dear to me and millions of others.

Thank you Gail Zahtz and Dr. Huntington Potter for sharing and educating us!  

You can listen to the full interview on Gail’s BlogTalkRadio page and be sure to follow her all this week on Demand Design.

This week is going to be one of those times when I have to put on 'the brave face' and do what I "should" do. (NOT my favorite thing)

When I found out that Josh has Ds, I had no idea what that meant.  At 20 years old, I had never heard of it.  I had a lot to learn.   One of the scariest things that I've had to wrap my head around was the link between Alzheimer's and Down syndrome.

Social media is a great way for us to meet fabulous people we would never come in contact with otherwise.  This week my cyber-friend, Gail Zahtz, has put together a week of information about Alzheimer's and Down syndrome, touching on my biggest fear - that Josh and I will develop early onset Alzheimer's around the same time.  She had no knowledge of my fears when she sent me an email asking if I wanted to be involved.  

"Of course!" I said.  Not only am I convinced that Gail has the desire and drive to do major things that will help lots of people and therefore I jump at the opportunity to be involved; I also know that this is a fear I need to face because it won't just go away if I ignore it (yep, that's my usual MO).  

So this post is for any other parent/caregiver who shares my fears and need for information.   There will be lots of opportunities to listen, talk, and ask the questions we need to ask this week, with some really interesting experts on the subject.   

The week starts off with a 2-hour conversation with a leading researcher in the field.  Dr. Huntington Potter is Professor of Neurology and Director of Alzheimer’s Disease Research in the Department of Neurology and the Linda Crnic Center for Down Syndrome at the University of Colorado, Denver.  If you're like me and have questions about the link, or the lack of research funding, or anything else on this topic, this is a great opportunity.  He'll be live from 11am-1pm tomorrow.  You can call in, post comments/questions on the site, or send them to me.  The broadcast will also be recorded in case you can't listen live.   Visit Gail's Blog Talk Radio site for access to this rare and important opportunity.

Tuesday at 1pm the conversation continues with an hour of 'chatting' on Twitter.  Guests scheduled to appear include Michelle Sie Whitten, the Co-Founder and Executive Director of the Global Down Syndrome Foundation, and Dr. Dennis McGuire from the Adult Down Syndrome Center of Lutheran General Hospital in suburban Chicago.  The GDSF recently announced a grant with which Dr. McGuire will "help establish a world-class medical care and research center for adults with Down syndrome under the umbrella of the Linda Crnic Institute for Down Syndrome" in Denver.  Search for and use the hashtag #CPHC to be part of the conversation.

Wednesday between 10am and 12pm (ET) Gail will get to talk to a different kind of 'expert.'  Someone who is going through the experience we all fear right now.  Patty McFeeley is the eldest sister and caregiver for Gretchen Josephson who not only happens to be the author of "Bus Girl," but also has Ds and was diagnosed in December of 2009 with moderate to severe dementia.   Patty will talk about life with her sister, before and after that diagnosis.    

And Thursday between 12 and 2pm (ET) Gail will talk to Banker White, the director of a powerful documentary about the "changes Alzheimer's disease brings."  

As you can see, Gail (as usual) is really coming at this from a variety of perspectives and providing a wealth of information and plenty of opportunities for me to "face my fear."   As I prepare, emotionally and specifically, to participate in all the events planned, I hope to hear from some of my other cyber-friends that I've met by sharing my stories about Josh.  I'll be writing about and sharing my experiences with the material, and I hope some of the other parents I've met will too.   We're all looking down a similar road when it comes to this important issue, and we can support each other along the way.

You may remember the fabulous interviews and Twitter chat that Gail did during her week long focus on #JusticeForEthan.  

• Gail Zahtz Talks to Barbara Kornblau about #JusticeForEthan and Broader Disability Issues
• #JusticeForEthan Twitter Chat
• Debra Alfarone Talks About Journalism and #JusticeForEthan
• #JusticeForEthan - The Tale of Two Dads
  
• #JusticeForEthan - A Sister's Story

Next week, she continues her support of the Ds community and the intersections between advocacy and healthcare by turning her focus towards one of the most important health issues for our community - Alzheimer's Disease.

Stay tuned for more information on the powerful line-up of guests she has planned!   

You won't want to miss any of it!

**You may also want to visit us as we grow the Ds community at Demand Design!

The IDSC has asked “What five things do you want the world to know about your child.” 

First and foremost, my son, Josh, was and always has been WANTED.  For some reason, people tend to think that children with special needs are accidents, or somehow unplanned mistakes that happen for a ‘reason.’  I have always wanted to be a mother, and I have always loved and appreciated Josh for who he is, without wondering what he could have been.  I have never once wished that he would be anyone other than the amazing man he has turned out to be.

Second, he is TALENTED, not in spite of or because of his extra chromosome.  He just is.  He continues to amaze me every day.  I envy so many things about him and his outlook on life.  He has a sense of humor and laugh that is contagious.  He sings at the top of his voice and with such emotion that it doesn’t matter if the words aren’t clear.  The feelings he expresses are genuine and moving.  He dances with such abandon regardless of who is watching if the mood strikes him (but I embarrass him if I dance ‘in public.’) :D

Third, he's OBSERVANT and understands more than most people think.  Just because his language is somewhat limited, and people have to actually listen to understand what he is saying, that doesn’t mean he doesn’t understand what people say to, and around him.  He absorbs everything (okay, he absorbs everything that he’s interested in).

Fourth, he can be stubborn, rude, and has a temper.  Yes, he has the full range of emotions that everyone else has.  He doesn’t like it when he gets angry, and usually apologizes for losing his temper.  He gets frustrated when his mind works faster than his expressive language.  He’ll occasionally use four-letter words, but is quick to tell anyone else about their “language.”  He’s not perfect – but he’s perfectly HUMAN.

Finally, he is ‘SPECIAL’ - to me.  He’s been the light of my life and I couldn’t imagine not having him around.  He’s my best friend.  We’re a team.  When he tells me that I’m “the best mom ever,” it makes me feel more accomplished than anything else I’ve ever done in my life.  He’s taught me more about myself and the world around me than anyone else ever could.  He’s challenged me to do better, for him, and for us.   

He’s been the best part of my life; I’m lucky to have him in it.