Down Syndrome Track at AutismOne Conference 2012

 

Andi Durkin has been working on putting a Down Syndrome Information "track" together at the Autism One Conference 2012. Here's the rest of the information from Andi's blog, Down Syndrome: A Day to Day Guide.

Our sessions are scheduled for Thursday, May 24, 2012. The conference will be held in Lombard, Illinois, a suburb of Chicago. The five-day conference is free, with a nominal $25 material/ handling fee. 

You can register online at

http://www.autismone.org/content/down-syndrome-autismone-conference-2012

Down Syndrome Track Session Overview

All T21 sessions are located at room Grand CD and will be presented one after the other with comedian and father to child w/T21, Bob Orvis as MC.

This information below is accurate, the schedule on the AutismOne website is not correct. 

Dawn of a New Decade
8:00 am - 8:55 am

Jane Winans, parent of a thriving child with Down syndrome, shares her journey and discusses biomedical options she used for her daughter. Hear from 10-year old, Lydia, in this moving opening session designed to enlighten and empower parents. Click to see video 1 and video 2 of Lydia.
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Why talk about Down syndrome at an Autism Conference?
9:00 am - 9:55 am

Parent-researcher, Laurette Janak, relates similarities in health histories between DS and ASD (Autism Spectrum Disorder) families and how we can best learn from them. Woven into the discussion will be valid, scientific reasons for trying biomedical options. 

Biomedical Basics: Where to Begin 

10:00 am - 10:55 am

Dr. Norman Schwartz explains how optimizing nutrition, exploring supplementation, monitoring the thyroid, utilizing lab results and avoiding environmental toxins are the building blocks needed to form a solid foundation upon which your child may flourish. 

Trisomy 21: Understanding the Problem
11:00 am - 11:55 am

Dick Deth, PhD shares an easy-to-understand overview of some of the major issues facing our children including the methylation cycle, the Alzheimer's connection, oxidative stress and the effects of GABA overexpression. 

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--Lunch Break--

What's Next? Exploring Options

1:00 pm - 1:55 pm
Dr. Anju Usman will explain the next level of biomedical information including optimizing a healthy gut-brain connection, and nutrients for brain repair and neurogenesis, which is the brain's ability to create new brain cells and new connections.

Supporting Speech
Important Nutritional, Oral Motor, Feeding and Language Ideas to Ensure Optimal Development of Your Child with Down Syndrome

2:00 pm - 2:55 pm

Learn from Jill Rabin, MS, CCC-SLP, how proper nutrition, medical intervention, supplementation and oral motor and communication exercises must all be on track to pave the way to excellent speech. 

The Neurodevelopment Aspect 
Sequential Processing and Alternative Treatment Methods
3:00 pm - 3:55 pm 

Alison Wimmer will explain the fundamentals of neurodevelopment and why it works beautifully with the holistic approach to DS therapy giving our children the opportunity to succeed beyond our expectations.

The Future: Choose Your Own Adventure
4:00 pm - 4:55 pm
Sessions end with each parent's exciting new journey before them. Cheryl Greene will share her time-saving strategies to help parents fit everything in their busy schedules. Andi Durkin (parent to Jett) will unveil great new resources to support parents as they explore and implement OPTIONS for healthier children including a new Foundation and website with a parent database. The floor will open for questions and answers.

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Target Features A Child with Down Syndrome!

As many people have probably already seen, thanks to NoahsDad.com, Target has included a little boy, Ryan, with Down syndrome in one of their ordinary ads.

That is what is making the Down Syndrome community buzz. They didn't put him in a 'special ad for special people'. They didn't put any words to point him out on the page as anybody different. They just included him as one of the other cute little kids in the ad. That is pretty cool.

Ryan is one cute little boy! Nordstrom also featured him in one of their ordinary ads. Here's a picture of both of those ads:

The original post which started all the Buzz can be seen over at Noah's Dad's blog here. The Today Show also ran a story about NoahsDad.com and what Target and Nordstrom did, which you can view here.



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31 for 21: Girl with Down Syndrome Plays the Piano

This came through on one of the DS listservs I'm on and I thought I would share it.

This mom, Daniela Clapp, is a piano teacher and she has been working with her daughter to teach her how to play the piano.






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31 for 21: It's October (already)!

Wow, it's hard to believe it's already October 2011. The year has gone by so fast. But, with October comes National Down Syndrome Awareness Month (and also a whole host of other "such and such awareness month", but we aren't focusing on that!).

As I mentioned before and as we did last year, we are taking on the 31 for 21 blog challenge. The goal is to post a blog a day for the month (31) of October, because of Trisomy 21.

Head on over to Unringing The Bell, sign up for the challenge and grab the button. If you happen to miss a day, that's okay. It's a challenge, but is a lot of fun and quite rewarding. It spreads the word about people with DS and I've gotten a lot of emails and comments doing this.

There You Are
by Robbin Lyons

There you are.
What will you become?
And here I am
Feeling overcome
And they say
You’ll struggle thru your days
Oh, what will you become,
My precious little one?
And there you are,
So different from the rest.
And here am I,
Felling I’ve been blest.
Each day is new.
Each day a test.
But, we get through,
No different from the rest.
And there you are.
Looking almost grown.
And here am I,
Welcoming you home.
I never knew,
You’d make it on your own.
You really found your way
And never once afraid.
And there you are,
So different from the rest.
And here am I,
Feeling I’ve been blest.
Each day is new.
Each day a test.
But, we get through,
No different from the rest.
And there you are
No different from the rest.
And here am I
How was I so blest?
You’ve made my life
No ordinary path
So different from the rest.
I know that I was blest.
You’ve made my life
No ordinary path
So different from the rest.
Thank God,
I truly have been ….BLEST

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Joinin' the Virtual Party

Well, well, I just found out about the 5th annual Ultimate Blog Party 2011 which 5 Minutes for Mom is putting on. I thought I would join in on it, since it sounds like a fun, easy way to get more blog exposure & visit other blogs. (As well as possibly win some door prizes.)

So, here we go!

I've heard about 5 Minutes for Mom before, because of their co-blog, 5 Minutes for Special Needs. Tammy & Parker (her blog is down right now) are one of the contributors to the 5 Minutes for Special Needs blog. I've mentioned Tammy & Parker before in this post, because of Parker's other special needs that are not related to Down syndrome.

I think our blog would go under the category of "Specialty Blogs." It's not exactly an everyday occurance to find a blog written by a girl who's in a family of 13, on a 44 acre ranch, with a little brother with Down syndrome and who has a load of food allergies/intolerances in her family!

This blog is written, just as the title explains to share what we have learned over the 6 years since O has been in our family. And since our journey with Down syndrome started.

 

Enjoy!

World Down Syndrome Day - 3/21

Well, yesterday (3/21/11) was World Down Syndrome Day. I was going to put a blog post up yesterday, but didn't get to it.

So, today will have to do. World Down Syndrome Day is to raise awareness & promote acceptance of individuals with Down syndrome.

You may ask why 3/21 for WDSD? Well, it's pretty easy. People with Down syndrome have 3 copies of the 21st chromosome, instead of the usual 2.

Here are a couple photo montages put together for WDSD.

The first is one by the Down's Heart Group in the UK & the second one is put together by the International Down Syndrome Coalition For Life.

31 for 21: A Site for New Diagnoses

This link came through one of the DS listservs I'm on the other day and thought I'd pass it a long.


DownSyndromePregnancy.org

This website is for families who have received a new diagnosis of Down syndrome. The site also offers a free eBook, which is a plus. The eBook, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome, is "specifically written for expectant mothers who are moving forward with a pregnancy after learning about a Down syndrome diagnosis."

A bit about the website:

We wanted to thank our fabulous medical review team and Down syndrome community review team; the DownSyndromePregnancy.org trustees; photographers, Kelle Hampton and Conny Wenk; and designer, Justin Meredith, who helped us pull this all together. We also wanted to thank Mark Leach from the Down Syndrome Affiliates in Action Informed Decision-Making Task Force for keeping us on task. Thanks also to our husbands and children for bearing with us and supporting us.

It has taken us over a year to complete the book, including hours of research, writing, submitting for medical review, and editing — with absolutely no budget. We are very proud of the product and hope you like it too. Our goal is to reassure, empower, and educate expectant parents who are moving forward with a Down syndrome pregnancy while understanding and respecting their emotional state.

Photographer Kelle Hampton has her own child with Down syndrome, who is just a few months old.

Photographer Conny Wenk also has a kiddo with DS and takes beautiful photographs of kids with DS. This little guy is so cute!

Just The Way You Are

This video was posted on non-other than a rabbit breeder message board. I hadn't seen it before and I thought it was very sweet and cute. The response by at least one person on this board was "I feel sorry for . . .", so I had to watch the video to see what it was about. And then of course give that person a lesson . . . there's no reason to feel sorry for someone with Down syndrome.

A 7 year old boy sang this song about and for his little sister who has Down syndrome.




Enjoy!

The Castle

A few days ago I mentioned a story we have in our book that was written by Dave Hingsburger and I said I would post it up sometime here. So, here it is . . . Tissue warning on this :).

The Castle

He was born at the wrong time to the right woman. 67 years ago Richard was born with Down Syndrome, his mother was informed moments after his birth that he was a defective child and should be sent to the 'Castle'. She decided then and there that no child of her's would grow up in Lennox Castle, the hospital for disabled children in her area. Doctors, unnerved at her determination to keep her child, young Richard, informed her that because he had Down Syndrome he would die young that his 'fourth birthday' would be his last.

She loved that baby.

Loved him.

When his first birthday approached the family began to wonder about the celebrations. It was decided then and there that Richard's first birthday would go uncelebrated, there would be no party, no cards, no gifts. This was not a result of grief, of denial, of shame. Richard's mom decided that if he didn't have a first birthday - he could never have a last one. If he didn't turn one, then he wouldn't turn two, if he didn't turn two he wouldn't turn three, and if he didn't turn three then he'd not celebrate his last - the fourth. Instead, family celebrations intensified. Christmas and Easter and all the rest became huge family celebrations. More than ever before the family pulled together. Celebrated every life together.

Richard never knew a birthday party.

He never turned one.

His neices and nephews, his great neices and nephews, never even knew how old their uncle was. Richard was hospitalized only once in his life. His family filled his room, many stayed with him through the nights, through the days, caring for him in shifts. Nurses had to constantly ask people to move and give them room to work. Though very ill, Richard pulled through ... as if his family had lassooed his soul and pulled it back from heaven's shore.

It was then that one of the boys took a look at the plastic wristband the hospital had placed around Richard's wrist to see how old his uncle was, no one knew. Because he'd never had a first birthday.

Richard died three years ago. Calculations showed that he'd lived for 64 years. He lived loved. He lived part of a family that celebrated belonging to him. There were "Richard" traditions, at every family wedding, after the dance between bride and groom, Richard took the floor with the bride. With every new home or apartment, Richard was the first overnight guest.

At his funeral, the whole family decided to walk behind the casket. They wanted not to be in cars hidden from view. They wanted to walk, publicly proclaiming their membership in Richard's family. This boy who was to be sent to the castle, lived his life a king. This boy who was to die at 4 had a mother that stole birthdays away and gave celebration to every day. This boy who was to be hidden died - and 5 generations of his family walked behind his coffin.

Crying.

*** Story written by Dave Hingsburger. http://davehingsburger.blogspot.com/

"I Don't Have Down Syndrome All The Time"

Dave Hingsburger is an advocate for those with disabilities and gives presentations on this topic fairly often. A story he wrote is featured in our book and I will post that story up in a couple days hopefully. But, in the meantime, someone posted a link to his blog and a story he had written about something he witnessed the other day. We all thought it was pretty funny and quite interesting. So, here it is:

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

..............

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

Makes me wonder what goes on in Osiyyah's head sometimes. Since his speech is delayed, he doesn't always speak his mind, but he does so plenty of times. There are times though, that he'll look at someone with a look like, "Hello, I can do that!" And you know what, he can do a lot and he can do so much more than we realize sometimes. Like when he was in the kitchen one time with a cook book and trying to "make something", haha.

Have a good night!

Buddy Walk: O's Ranch Hands

Wow, last week flew by! I just had time to sit down and answer a few emails, but not to get a blog post up! We picked my grandma up at the airport last week. She flew in from California and is visiting for a couple weeks.

The day we picked her up, our local DS association (DSAT) had their annual "Kick it off Party" for the Buddy Walk. The party was at Pump It Up. We got there kind of late, but still had a BLAST!

The Buddy Walk was yesterday (Sunday). DSAT has a great turn-out and every year their walk grows! The walk draws 2500+ and this was just the 7th annual walk. DSAT does a great job of putting on a wonderful walk and raising awareness about Down syndrome. This was the first year we actually did the full thing (last year we were only there for the last 30-40 minutes), and it was great. We even got to do some dancing while we were hanging out :). Here's a couple pictures from the day:




Hopefully I can post more later . . .

Goodnight,
Qadoshyah

January: National Birth Defects Awareness Month

I came across an article at healthnews.com through my Google Alerts today.

January is National Birth Defects Prevention Month.

The article below from healthnews.com is a good article, encouraging help for babies & mothers. But, the truth is that a major part of this so called, "prevention" includes abortion, whether the public wants to admit it or not. So, I thought I'd post this incase anybody has any ideas on any awareness that can be spread from the DS community. I know the awareness may not necessarily be the kind of awareness that is being encouraged, but nonetheless something may be able to be done I think.

I hope to be able to spread a lot of awareness this month by giving copies of our book to doctors, hospitals & even the general public.

National Birth Defects Prevention Month
By: Lara Endreszl
Published: Monday, 5 January 2009

Infants are by far the most fragile form of life that hospitals and families help bring into this world because they are new and have no way of telling us if something is wrong. November was Premature Baby Awareness Month and now it is no surprise that January is National Birth Defects Prevention Month, because babies are a high priority.

A birth defect is defined as a structural, functional, or metabolism abnormality and several thousand of them have been recorded throughout history. As a leading cause of infant mortality including over 20 percent of all infant deaths in the United States each year, the impact of birth defects is greater than anyone would care to think about. There are 18 birth defects common to the rest of the infant population that survive the initial diagnosis and the estimated cost to provide care for those infants is more than $8 billion. According to the National Birth Defects Prevention Network (NBDPN) nearly 70 percent of birth defects are caused by unknown circumstances. Other causes include genetic and environmental factors or any combination of the two. Factors such as quality of life for the mother and baby, history of certain disorders, gene defects, etc, can all cause birth defects.

Research done by the NBDPN says that there are currently 37 states with operational birth defect facilities, 8 states with plans for operational facilities, and still 5 states without any functioning data centers for birth defect research. The main Centers for Birth Defects Centers for Research and Prevention are in the following states providing incredible investigations into trends among infants born with certain defects, innovative prevention tactics, and developing policies for children living with these disorders: California, Texas, Arkansas, Iowa, Georgia, Massachusetts, North Carolina, New York and Utah.

Each January the NBFPN develops a theme in which to provide information relating to birth defects and prevention in a concentrated way. The theme for 2009 is “Getting Fit for Pregnancy,” helping newly pregnant women to deal with the pressures of keeping their bodies healthy while eating for two or more. By spreading national awareness with their theme, many women can benefit from knowing the risks involved in carrying a baby by having the stress of excess weight on their bodies prior to conception. Obesity is a growing epidemic and women who fall into a specific weight bracket in conjunction with their age and height, tend to have riskier pregnancies as a result of the body’s added exertion and are more likely to have hypertension, preeclampsia or gestational diabetes.

With an estimated 120,000 babies born each year in America with birth defects, one in every 33 infants struggles to stay alive each day. Down syndrome, cleft lip or palate, and spina bifida are among the most common birth defects dealt with on a daily basis. Other birth defects include a type of dwarfism called Achondroplasia, a disease affecting connective tissue called Marfan syndrome, a nervous system disease called Tay-Sachs, cystic fibrosis, hemophilia, muscular dystrophy, heart defects, and other musculoskeletal, eye and gastrointestinal defects. To keep your children and their future children safe from birth defects, spread the awareness in order to garner attention and gain support and donations in order to open research facilities in all states and keep prevention—and future infants—healthy.

Qadoshyah