Robert Ethan Saylor: The Tragedy Continues (A Blog Crawl)-with updates...

The death of Robert Ethan Saylor in a movie theater in Maryland on January 12 sickens and saddens me... and keeps me awake at night. He was a young man with Down syndrome who didn't leave a theater when told to by an employee... so their security guards threw him on the floor where he asphyxiated... There is, of course, more to the story, but these are the essential details.

First, I find it horrifying that anyone would be thrown to the floor for not getting out of a chair... anywhere... ever.

Second, I find it horrifying that the security people involved claim that they did not know that they should approach people with disabilities calmly, using simplified language and allowing lots of processing time... They were reportedly off-duty police... they certainly know this about working with elderly people...

And I am very sure that they know that handcuffing people face down on the floor can cause asphyxiation... because that is fairly common knowledge whether or not their 'perp' has Down syndrome.

Third, I am sickened that this young man died crying for his mom... while his carer tried to de-escalate the situation (and was ignored)... thinking that he was being beaten up by thugs... with observers who did not intervene for him apparently...

I could be this mom... my daughter could be trusted to wait for me... I could go to get the car... and someone could yell at her for some 'crime'... this yelling absolutely would flood her mental engine... she would NOT understand what they wanted... she would either shut down or yell depending on how scared she was... and I would find her on the floor under cops... dying. So she can NEVER be alone??? And not because of criminals, but because of law enforcement? This simply cannot be. (And... we do tell her to self-advocate when attacked...)

Fourth, the medical examiner ruled his death a homicide. The Grand Jury said he asphyxiated because of Down syndrome. Ummm, no he did NOT. Down syndrome does NOT cause asphyxiation. SITTING ON people with Down syndrome can cause asphyxiation... Without these guards' actions this young man would be alive--unasphyxiated.

Fifth, when approached by NDSC and F.R.I.E.N.D.S. (a DS support group started years ago by Ethan's mother) who asked for an independent investigation, the DOJ responded that they were waiting for public outcry... UGH.

Department of Political Smarminess would be a lovely new name. Justice is not about outcry, it is about RIGHT--do not sully the word.

I am including posts below so you you can read more. Some include information from Regal Theaters. Some are petitions. Please read, learn and generate some outcry.

NDSC
The Unknown Contributor
DOJ Assessing Death of Man Removed from Theater
Down Syndrome Uprising
Calm, Common Sense and Compassion Would have Saved Ethan's Life
Exactly Where I'm At
IDSC
Words Hurt or Heal
Petition Posted by Ethan's Mom--Sign Me!
Noah's Dad
About.com: Special Needs
Age of Autism
Concave Bed, Concave Life
With a Little Moxie
A Typical Son
The Chronicles of Ellie Bellie Bear
Peacock Panache
Ethan's Mom on The Daily Show??--another action to take!
The Arc
suncoastmama
Learning through Love
The Bates Motel
Cowgirl Up
Big Blueberry Eyes
Down Syndrome Uprising-Call to ACTION-- Actions galore...get to work!! :)
Enjoying the Small Things
Trial Run--New... addresses, letter to cut/copy/send (and well worth a read!)
Chasing Charlie





More to come!

Wrongful Birth Suits: A No Win Situation...

This article makes me sad.

Heartsick actually, on so many levels...

The article starts by telling us that the family are good people. They only sued their healthcare providers for the money.

I have also fought for the money to get appropriate healthcare, education and other needed services for my daughter who also has Down syndrome. I have advocated with school districts, legislators, agencies and more to get what my child needs.

Fortunately, we have never been in such dire straits that we would consider saying that we would have aborted her if only we had had the chance. We have always been able to build, craft, find or get what she has needed thus far. This family's situation is heartbreaking.

I feel bad that the statement made by the parents about wishing they had aborted their daughter was repeated throughout the suit and in the media... this child will know about this. And even if she doesn't, everyone around her will. That will be hard.

Knowing the way these high-profile events strongly reinforce society's outdated prejudices about disability is upsetting as well.

I'm reminded of Jerry Lewis's controversial telethons for the MDA. The telethons with their requisite tear-jerking, did bring in the immediate money the organization needed. But the high-profile telethons heavily sold the belief that people with Muscular Dystrophy and other disabilities are pitiable, incapable and just 'less.' Everyone with a disability lives in the shadow of those telethons. Societal barriers are by far the hardest part of disability--they affect access to schools, neighborhoods, employment, etc more than any other aspect of disability.

(And that lack of access is what drives people to hold these desperation events... a NOT-YET ending cycle...)

We work on awareness, stopping the R word, More Alike than Different campaigns, but one of these cases full of anger and tears moves us all back again...

Beyond all this, it is easy to see that healthcare providers who DO suggest abortions in cases of things like Down syndrome (where needs are not usually dire and improving every year) could also be sued and lose just as badly... since the 'appropriateness' of such a suggestion depends on the patient's subjective feelings about disability, not on objective data. (Many people actively seek out babies with Down syndrome to adopt--therefore Down syndrome is not empiracally bad.)

No one won... no one will ever win in these situations.

Unfamiliar Territory: Letters and Lessons and PANDAS

Oh my. :)

When my oldest daughter was little I was so impressed with my little darling's ability and interest in reading and writing. We encouraged every attempt at a list or sentence or story. We thought she was amazing. Then she got to kindergarten. Her teacher looked at me with her eyebrow up and firmly told me that it was clear that our daughter had not been taught proper letter formation and that if we didn't start practicing with her EVERY NIGHT her poor writing would HOLD HER BACK. Then she proceeded to teach me how to write all letters starting with my pencil at the top line. (So the letter A would be formed Top down-Top down-Crossbar. And only this way. Ever.)

I went home shaking in my shoes. I practiced with her the first time right when we got home and went to bed that night with nightmares about her penmanship HOLDING HER BACK...

A few days later I talked with one of my girlfriends whose kids were going to Montessori... I explained all about the dire consequences of improper letter formation... My friend said, "I don't think so." What???? But Mrs H. said.....

My friend said that at Montessori they teach cursive writing before they teach printing because they believe that it's the lifting and placing the pencil on the page that is difficult for kids. "You can't tell me that everyone who ever went to Montessori has failed at life. And don't a lot of people just type? And what about people from other countries? Some languages don't even have an A"

Well yeah... duh!

I progressed eons that day. Let's just say I chose what I wanted to panic about after that--nobody could make me by just saying so!

(You will be happy to know that I can't actually tell you how she writes an A anymore and yet she does seem to be holding her own!)

This happens sometimes. Experts disagree.

What one group of people see as essential another see as superfluous or even dangerous...

This is not new news of course. People change schools and doctors and hairdresses and plumbers all the time.

I have friends who have taken their kids for heart and other surgeries to other cities, because things were available there that weren't here. And I know of kids with various disabilities who have received all manner of treatments or therapies in different cities or even countries essentially because the experts in various places face the same problems in different ways--there is more than one way to draw an A.

While I know many folks who have travelled for the treatments their kids needed, up til now we have never considered it ourselves. The only time we have even talked about an out of town specialist was for an eye issue Jenn has. But she responded to treatment. And recently a specialist has actually moved here (wasn't that nice of them?)

But suddenly things have gotten more controversial...

Jenn has had a change of behavior and an elevated ASO titer and her behavior is improving with antibiotic treatment... some medical practitioners would call that PANDAS... others would not.

Noted experts in one city (mine) don't believe in PANDAS... while experts in other cities do. Some big-name hospitals have PANDAS protocols... ours does not. Both groups are lettered, respected, learned people and respected institutions (I am not being sarcastic, they are.)

And they don't agree.

And all of them can give you a thousand well thought-out reasons why...

Obviously, this is much bigger than how to make an A... there are side effects and consequences on both sides of the equation. And a kid in the middle.

Then add in that no matter what either group of experts HAS looked at, you can bet that neither group has looked at 17 year olds with Down syndrome...

So, it's on us.

So far, I think the antibiotics are fine... she seems to be responding--even acquaintances are noticing improvement--and it's not like the treatments for things like OCD, behavioral disorders, etc will not still be out there once she is off the antibiotics... And strep is going around... Not sure how we feel about transfusions... Can't imagine talk therapy making a bit of difference...

Sure as heck can't leave her where she is.

We have a thoughtful medical team, we read and discuss and discuss and read. We listen... whether we agree or disagree... we challenge (because then they tell us more)... we pray. We take a step.

Rinse. Repeat.

This is my present process anyway... if you have one you like better please share!

Big Doings in Rochester!

Geva Theater in Rochester has a new play opening this week and one of my daughter's friends is in the cast!! The play is called Over the Tavern and has played in many cities around the country, but this is the first city where a young man who has Down syndrome plays the character with Down syndrome. (Plus it's Andrew! We have known him since he was a baby and Jennifer thinks 'he is so funny!')

According to Andrew's mom, the character isn't as high-functioning as Andrew which was a little worrisome at first, but that's why they call it acting!

This is a great opportunity for Andrew, it is nice exposure for people with disabilities and good experience for the theater as well... And they say the show is funny. We are getting tickets--hope we see you there!

Book Review: The Guide to Good Health for Teens and Adults with Down Syndrome

Woodbine House sent me a copy of The Guide to Good Health for Teens and Adults with Down Syndrome by Brian Chicoine, MD and Dennis McGuire, MD.

The authors are physicians at the Adult Down Syndrome Center of Advocate Lutheran General Hospital in Park Ridge Illinois which has served more than 4500 people with Down syndrome since it opened in 1992. The authors tell us that neither of them are parents of a child with Down syndrome, but are willing to work with and listen to people with Down syndrome and have done so for many years (many readers will know the authors from their presentations at the National Down Syndrome Congress Conferences each year.)The book is based firmly in research and clearly benefits from their considerable experience.

Written in a personable tone that is informative and low on medical jargon there are chapters discussing each bodily system including skin, eyes, respiratory and digestive systems and more. Each chapter focuses on things things that are more common or are experienced differently for people with Down syndrome. There are also sections about health and wellness in the community, as well as outpatient and inpatient care--and handy things like 'what to look for in a physician.'

The authors share a nuanced understanding of the ways cognitive disabilities affect both health issues and their treatment. They recognize tendencies that people with Down syndrome seem to follow (without becoming stereotypical!) They also acknowledge some differences that are evolving as the quality of things like education and healthcare for people with Down syndrome improve.

I really appreciated things like the section on encouraging more fluids as well as the chapters on overarching issues like Preserving Health and Well-Being over the Long Term, and discussions about advance directives and such.

When Jennifer was a baby the book, Babies with Down Syndrome was never out of reach. This is the book to keep on hand for adulthood--both to review health and preventative needs and when facing health concerns. I found it to be informative and accurate and accessible. There is also a companion book by these authors called Mental Wellness in Adults with Down Syndrome.

Guest Post From 'A Frustrated Grandmother"

This is our Oliver. Even before he was born, we were led to believe that Oliver wouldn’t do much. Thanks to all the medical technology available nowadays, we knew he had a good chance of having Down syndrome and we knew for sure he had a heart malformation. We were given a very gloomy prognosis. Weeks at the NICU, potential heart/respiratory problems , feeding problems, weight gain problem were all predicted. Well, he beat all the odds: 3 days at the NICU, no heart related problems, excellent nursing, good weight gain, good muscle tone, responding to all kinds of social interactions, good development, happy, never ceasing to amaze us, loved to bits by all of us.

He never needed an extra trip to the doctor’s office, just the well child visits covered by his parents’ health plan. He was a good patient... until Saturday January 23rd 2010.

You see, the only requirement Oliver had was to get a series of 4 shots during the winter months to boost his immune system and avoid getting sick from RSV, a common virus, which can cause a wreck in kids awaiting heart surgery. He had his November shot and his December shot, and stayed healthy.

Then, the nightmare began.

The company that Oliver’s dad works for decided to change insurance companies. The logical thing would be that all his medical needs would roll over, but his parents discovered that the pharmaceutical company would not deliver the shot unless they re-applied and got re-approved.

There was a delay transitioning between the two insurance companies, and a further delay with the pharmaceutical company apparently.

Before the process was completed Oliver had caught a common cold. His parents dealt with the cold the way the doctors told them to. They waited for the shot the way their insurance company and the pharmaceutical company told them to. They did everything they were told to do. And Oliver ended up in the hospital with RSV and pneumonia.

Why the delay?

I am sure all of those people could find Oliver’s information just by striking a couple of computer keys. It’s hard to believe they didn’t see that Oliver needed to be treated right away. Shouldn’t patients like Oliver have a red flag and get channeled a different way than people who aren’t in as much danger to speed up the process? Shouldn’t they take care of all the procedures instead of delaying it by making parents call doctors and rewrite papers?

All the information is available. Channel these urgent cases to employees trained to deal with the procedures right away, who can tell parents not to worry, that they are going to take care of everything, that they are going to call the pharmaceutical company so they deliver the medication right away, and that parents must call back if they don’t receive it by the next day.

You think it’s crazy? Why, one can get plane tickets instantly, or get approved for a credit card instantly, or have his/her information available on the net to anyone that wants it. These companies are being paid billions and billions of dollars, but the people that are paying them are being rationed and delayed when they need help.

Are you thinking that their employees are dealing with hundreds of requests and it takes time? Oh, but wait! What did Oliver’s parents received on the mail while Oliver was still in the hospital? A notification from their insurance company warning them that they “don’t guarantee payment for services provided while in the hospital,” that the company would have to determine the “appropriateness of the admission, length of stay and level of care and would have to review it against established criteria."

The timing was cruel. It added so much stress to an already horrible situation. Were his parents supposed to take him off the ventilator and take him home?

Didn’t Oliver deserve to be treated this diligently when his mom called requesting the approval of the shot?

I don’t even know whether my complaints will fall into the right hands. I am pretty sure the people who hold the top positions in these companies have learned to isolate themselves from us, the people that need their services.

We are blessed to be in a city with good medical care and to have Oliver home with us and healthy again, but still in so many ways, the system does not work:

*Tiny doses of lifesaving medications for babies should not cost over $1000.

*Somebody else besides the company making the $$ needs to make the decisions on what treatment is needed and how fast this treatment should happen.

*The process of changing insurance companies shouldn’t delay care.

*Companies we rely on for important medications need to be timely and communicate.

We need a system that hears the people and tells us: don’t worry we’ll take care of you.

~Ana

(Picture of a brown haired baby boy wearing a t-shirt that says Mommy and Daddy Love (heart) Me.)

Book Review: Late, Lost and Unprepared by Cooper-Kahn and Dietzel

Late, Lost and Unprepared: A Parents' Guide to Helping Children with Executive Functioning by Joyce Cooper-Kahn, PhD and Laurie Dietzel, PhD is a breath of fresh air. It offers a positive and practical approach to the maddening issues of Executive Functioning Disorder.

The executive functions are our brain's coordinating and directing functions. They include such skills as planning, organizing, scheduling, initiating, emotional control and working memory, to name a few. These functions can be disordered in anyone and can be affected by upbringing, experience, maturity and disability.

When these functions work smoothly, life goes well; and when they don't, it just doesn't.

From what I have found, there are traditionally 2 approaches to executive functioning difficulties: The first is to write the child off as lazy. The second is to write long, dull, negative, theory-dense, strategy-thin, tomes about it.

Neither of these approaches has helped my family much.

This book breaks that mold. This book is short. It is divided into 2 sections. The first discusses what the Executive Functions are, how they affect our lives and how they are assessed. The second section explains the process of changing behaviors and then has a chapter about each of the 8 components of Executive Functioning.

Each chapter in this section includes explanations, short term strategies, longer-term approaches for reducing support/increasing independence, and advocacy tips for working with your child's school on the issue.

The book is designed so that you can go directly to the chapters you need. So if my son is having trouble getting started on activities, but no difficulty with impulse control you can read the one chapter and not the other.

Each chapter offers lots of strategies for change--the strategies are concrete and doable and the overall tone is positive.

For my son who has Non-Verbal Learning Disorder these issues loom very large and I have been sharing quite a lot of the book with him as I go. For my daughter who has Down syndrome many of the same concepts apply.

The book offers strategies to meet a variety of learning styles with somewhat of an emphasis on auditory prompts and reminders. For my son these are great as-is, for my daughter the auditory prompts in the book require simplifying (a modification I would expect to make with most things.)

I am finding this book useful for helping my son and daughter with their differing diagnoses, I have shared a few nuggets with my other daughter and have even claimed a few strategies for myself!

That's my idea of a helpful book!

Picture and to learn more about this book click here.

Please Pray for this Baby

This poor little guy is having a rough week.

He was born in August and his mom used to babysit for my kids. He has Down syndrome and a heart defect for which surgery is scheduled.

But, that said, this little guy has done better than expected from the get-go. He was discharged from the hospital earlier than predicted as a newborn, nursed better than they said he ever would, and gained weight better than anyone thought possible, and in spite of our back-and-forth weather he hasn't even been sick...

Until now.

Through the end of December he received a montly injection of medication to prevent RSV (a potent, highly contagious virus responsible for the common cold and more.) A nurse went to his house to administer it to keep him out of the germy doctor's office.

First of the year his dad's company changed insurance carriers and the new company dragged their heels about whether or not the medication would be approved (the med costs $1000.)

Two weeks after the med was due the company finally approved the drug (though not the nurse to administer it.) The drug has been ordered, but takes a few weeks to come in.... so no January dose will be happening.

Saturday this sweet little trooper was admitted to the ICU in our local hospital... (his grandmother sent me this picture and said I could post it.)

And what virus has he been diagnosed with??

Guess.

Please pray for him.

(And forgive me, but $1000 doesn't seem like that much at this point....)

(Photo of a sweet baby boy with medical tubes in his mouth.)

Bits and Pieces

To start with, a funny story: Jenn was looking at a doll the other day. It had kind of a thick body and a screw that held it together right in the middle of the abdomen so my daughter thought there must be batteries and asked me how to make the doll talk. I looked the doll over and it didn't have batteries after all and I said she wasn't a talking doll.

Later I heard her tell her sister about the doll. She said "That doll doesn't talk. We need to get her a dynavox!"

(FYI: a dynavox is a voice-output communication device. Several of Jenn's friends use them.)

New York Times: Gary Presley, author of 7 Wheelchairs, blogger and FB friend had this essay in the New York Times last week!

Disturbing Fact: New York has over 6000 people on its waiting list for adult services. Check out your own state's statistics and sign the end-the-waitlist petition.

New blog: Check out this new blog by Penny Green. She is a mom. Sadly, her son with Down syndrome died 20 years ago from heart complications. She is from the UK, and an activist for folks with Down syndrome--especially those with heart issues. Stop by--and like all of us, she loves comments!

Finally: What do you make of this?

The picture is of my daughter wearing paper sunglasses--don't know why... Funny, my sister-in-law didn't send me the pics of her wearing them... :)

Curing Down Syndrome?

This is a picture of my daughter after her new haircut--she had enough cut off to make a Locks of Love donation.

By now I am sure you have heard the news about the Mouse Study on Down Syndrome.

Actually, Dr. William Mobley spoke about this study at the National Down Syndrome Congress Conference last summer in Sacramento. Dr. Mobley gave a really clear explanation of the study and, probably because he was speaking to families, introduced the researchers who were working on the study.

The science is fascinating... The ramifications--to me anyway--are unclear.

So, will we be medicating our daughter???

Not anytime soon.

I REALLY do not believe in taking new medications--especially new medications based on new science. After all, Hormone Replacement Therapy, Fen-Phen and Thalidomide all seemed like good ideas at the time.

I will, of course, make exceptions when something is life-threatening, but a cognitive delay simply isn't.

And Alzheimers? Not an issue for another 30 years or more (and it's only a risk factor.) By then, Alzheimer's may well be cured for everyone--this study may well point the way.

So we will wait.

This may present some new and interesting opportunities, time will tell.

But there are a few things this is NOT:

**THIS IS NOT URGENT

Cancer needs a cure. Down syndrome? Not so much.

**THIS IS NOT AN EXCUSE TO ACT LIKE A JERK

One of my friends has already been berated and labelled irresponsible and negligent by another parent for expressing her belief that medicine does not hold the answers for her son.

Negligent and irresponsible for having a different point of view about a medication that does not even exist yet???

REALLY???

One woman who really wants me to medicate Jennifer won't immunize her own son...

Yet I'm not calling her names...

Rein it in, parents! LEARN from your experience of having a child with a difference. Diversity and choice are good. And, it's disrespect (far more than any medical condition)that turns a mere diagnosis into a "handicap."

**THIS IS NOT HELPING DISABILITY ACCEPTANCE

I fear that the implication that we'll just eliminate differences like disability rather than accept, adjust to or welcome them is not making the world better--for any of us.

Sigh...

For somethng truly beautiful, read this.

My Hopes for Glee

I have such a mixed bag of feelings about the TV show Glee... My two older kids have always been vocal music-theater-show choir folks, or La-La's as they are called 'round here (the instrumental musicians are called Band-o's, fyi.) They love the show. They love the music and the mash-ups (where they blend 2 unrelated songs & styles into one performance), they love the dance and they LOVE the drama.

I have gotten into watching it with them. The music and dancing are great and the stories have led to lots of conversation.

This week Glee put the whole cast in wheelchairs and introduced two characters with Down syndrome... While the ideas of team-building and of walking a mile in someone else's moccasins aren't totally awful, I had my issues. Naturally!

First, disability simulation exercises usually lead to more pity than understanding (you can tell by the things people say when they are over--more about relief and feeling bad for people, rather than about empathy and feeling more like people with disabilities.) Secondly, having seen professional wheelchair dancers, the performance was kind of one-dimensional...

My daughter saw the show before the rest of us and her concern about wheelchair issues took a definite back seat to her anxiety about what was going to happen between the cheerleading coach and the young teen with Down syndrome.

My son, the actor and I have been discussing whether an actor who can walk should portray a wheelchair-user. He points out that acting is all about portraying people you aren't... He pointed out that he's played a farmer, a skeleton, a soldier, a student, a drunken businessman, and several variations of old men, and some really disturbing evil characters. He's only played a teenager once and that was a boy from the 1940's.

We have talked about blackface, about the percentages of disability in the real world vs. that on TV. And the percentages of average-looking people in the world vs. those portrayed by Hollywood...

As I say the conversation has been interesting. And unresolved... but that's how discussions with teens are!

Interestingly my blog-friends who use wheelchairs hated the show (see here) the bloggers who have kids with Down syndrome liked it (see here and here.) As Wheelchair Dancer points out, a consistent disability message is hard to find, and heirarchical thinking is often accepted--or even promoted--within the disability community itself.

I myself think the show has potential for disability acceptance. They are willing to 'go there' with tough subjects (as evidenced by the ongoing story about the gay student and his father... and all the teen trouble that's rampant, etc) and they don't lose their sense of humor or style as they do it... Kids LIKE the show!

IF they could come to understand that they don't have the whole picture of disability and look outside themselves for info, I think they could be awesome. Some say it's a big IF... we shall see.

To start with:

*They could have the teen girl with Down syndrome pay back the friend that bought her a cupcake--or better yet, lend her some $$. She should be a contributor, not just a recipient.

*They could introduce the kids to some REAL dancers who use wheelchairs.

*Lots could happen with the teen with Down syndrome... and with the big sister (though even if she must live in a nursing home she should still be and about, unless she's sick...) They also need to watch the 'childlike' stereotype.

*They would need to stop the remarks about "Never being able to get up... Never not be disabled... etc..." Gag me. Pity--for self or others--is not a viable life-strategy.

*They could also play up the realizations that many of the kids voiced that using a wheelchair lowered their status. Should it?? Um... no... but it does. That could be explored.

*There is lots of story potential about the difference between accommodation and unfair advantage. It is tricky stuff, but they worked that in with their "Diva-Off," I think they could handle it... IF they got some real input from the disability community.

A lot of this could be woven in with the other story-lines... And finally...

*How's about a Glee-ADAPT mashup??? :)

Just my thoughts!

Some Things I have Learned about Learning

Over the years working with our kids' teachers I have run into a few glitches in the common beliefs about learning that didn't work for my kids. I thought I would detail some things that didn't go the way I had expected so you could analyze your own programs and interactions and iron things out early.

Organizational Skills: One year my son's team agreed that my son did not have these skills and decided that he needed to learn them. They tried positive reinforcement, they tried negative reinforcement, they tried ignoring the deficit, they tried orgainzing for him and nothing worked. EVERYONE was miserable and frustrated.

After a ton of discussion it became clear that they were treating organization/disorganization as a behavior, rather than as a skill.

After this they started explaining, modeling and giving him practice, the way they would to teach other skills. THEN they started seeing some positive results...

Behavior: My daughter always rode the 'regular' bus with the rest of our neighborhood. In first grade she suddenly started throwing her shoes on the bus. Now, this is obviously a dangerous thing to do--clocking the busdriver, or anyone else, is not conducive to safe arrival... So, they put an aide on the bus for safety. The aide sat with my daughter and my daughter stopped throwing shoes...

One day I ran into her busdriver in the grocery store and I said that I was so glad that we had solved the shoe problem. He agreed that the shoes had stopped flying, but then he said something eye-opening. He said that we didn't really know if she had learned or was just stopped... He was right of course. There is a difference between being good and being controlled.

I called the school that afternoon and we had the aide moved out of my daughter's seat to allow my daughter to make choices, but to intervene if she made the wrong one... A much better plan, if you think about it.

It should also be noted that compliance by itself is not an appropriate behavior goal. One team I know of wanted to make "will not say NO" a goal for my friend's daughter. If she can't say no how would she deal with unsafe situations and people? That was NOT an appropriate goal.

For another disturbing behavior experience read this post.

Flashcards: Testing and teaching are two different things. You can practice retrieving information that someone knows by using flashcards, but you don't TEACH info by asking someone repeatedly if they know something. Enough said?

Reading Comprehension: I learned this mind-changing thought from David Koppenhaver: To teach comprehension let the reader know BEFORE they read what they are looking for. Endless quizzing is testing, not teaching.

You can do this with a beginning reader as you read. Pause and say "What is Junie-B going to buy?" Or "What is Charlotte going to write?" For Social Studies or Science let them see the questions at the end of the chaper before they read the chapter as well as after. Or teach them to ask themselves what they want to know in the upcoming reading...

Think about it, it makes sense. Do you have a better chance finding what you want by sending your kids to just go look around the house for a few minutes and then asking did they find your phone charger? Or does it work better if you ask everybody to look for the phone charger?

Discrete Trials: While this method is popular and effective for many kids, the applications needs careful consideration. For my daughter it seems to make disconnected information silos in her head. For what she learns to be useful to her she needs webs that connect new info with old in meaningful ways--this helps with retrieval. It also makes what she learns meaningful to HER, not just meaningful while being mediated by a partner in a certain proscribed way.

The Fry Word List: When Jenn was younger her team was looking for ways to teach her reading where they could document their results. They spent hours and hours working on this list of 300 or so words... The problem was that this list is made entirely of small words like if and and and the. Not a noun or a verb among them. It is totally boring. And after hours of tedium, when you can finally read the whole list there is not a single book you can then pick up and enjoy.

A lot of time and effort, excellent documentation, but no meaningful literacy gained. Another activity that only had meaning when someone else was there--if you found her word cards out of context--say on a bus seat--they would mean nothing to you or to her.

3x5 Cards: These are the bane of my son's existence. Teachers REALLY love them. My son can't write on them. He can't jot notes on little bitty cards and by the time he has he has memorized his note and doesn't need the card. Every year we have to discuss this. Every year. When sitting in meetings it is hard to think of alternatives. One can copy a page (using a copier)and highlight the needed info. One could do lots of things on the computer...

Readiness: It's not all it's cracked up to be! One of my son's teams wanted to remove him from the strong academic classes because he couldn't keep up with handwriting (pointing out that Stephen Hawking has "handwriting difficulties" yet still makes use of his education made everyone chuckle and re-think!) Readiness seems like an important concept, but even if my son can never handwrite well he will build his life on the info he has learned. We can teach skills, but we can't stop that info to teach the skills. Ever.

Readiness is also frequently used as a reason not to do things with my daughter--it's a reasonable goal, but should never be a barrier. Whether or not she knows her colors, she should be taught other things. (She does, but I'm just sayin'...)

I hope these examples help you analyze your own situation and avoid some pitfalls. Do you have other examples?

The Best Part About Down Syndrome...

Down Syndrome New Mama started a meme called The Best Part About Down Syndrome. If you go to the comments section of her post you can read what a bunch of parents have written.

Now, I already included most of my favorite parts in this post this spring and I don't want to be repetitive except to say....

My favorite part about Down syndrome is....

Jenn.

Yes, it's sappy. Helloo-ooo, I'm her MOTHER!

Introducing Embry Burrus, Author of Mama and Margaret

Hi, my name is Embry Burrus, and my big sister, Margaret is one of the funniest, coolest people I know. In fact, she is one of my most favorite people to hang out with. She loves to have fun, and is always ready for a new adventure – no matter what it is, Margaret’s up for it! She is also one of the most loving, kind and non-judgmental people I know, too. She shows me everyday what unconditional love truly is. She is the best sister anyone could hope for.

Oh, and by the way, she has Down syndrome.

That used to be the first thing I would tell people about Margaret, as if I needed to “temper” whatever I said about her with those words: She has Down syndrome.

But now, I realize that the fact that she has Down syndrome does not define her at all. People don’t like to meet Margaret and hang out with her because she is all of those things and she has Down syndrome; they like to meet her and hang out with her because she is all of those things, period.

What an awakening that has been for me—one of the many things I’ve learned from being Margaret’s sister.

I realized several years ago that there was a wonderful story in Margaret’s life, and in the journey that I have taken in being her sister, so I’ve written a book about her, and our now 90 year old mother. If you’d like to meet both of them, please visit my website .

I look forward to meeting everyone on this blog, and thank Terri for the opportunity to contribute my story!

October is Down Syndrome Awareness Month

I am not going to promise 31 posts about Down syndrome this month because there are just too many things I want to write about, but I do have a few treats planned... Stay tuned!

No Drive Through Life and Wrongful Birth

I have blogged before that many years ago when I was single, years before my daughter was born with Down syndrome, I believed--and told people--that I thought I would be fine if I ever had a child with a physical disability, but not a cognitive disability.

I have always pictured God hearing my little declaration and rubbing his metaphysical hands with glee. I picture God knowing that that that thing I dreaded would be one of the best gifts of my life. I picture the anticipation of my being surprised by joy I could not even imagine making Him smile the way I smile about the Christmas presents I have hidden for my loved ones...

When my daughter was born we had a few hours of shock and I was given a quick lesson on disability philosophy by a dear friend of mine who has CP, and another by the guy who answered the phone for our local DS group whose first word to me on hearing our news was, "Congratulations!"

Then we were on our way.

Having our third child meant all the joy and sleeplessness any new baby brings to a family.

That she has Down syndrome meant that and so much more. We were introduced to the parallel world of disability and all of the amazing folks who live there, we got to learn about and appreciate the hundreds of intricate steps involved in any piece of human development, we had to be resilient, we had to be creative, we had to learn new skills, we had to be intentional and 'attentional' about all manner of things we never even knew existed before.

Some things were easy and some have been very difficult. But I have indeed learned that things that are easy are often not as valuable as the things/relationships we must invest in.

We couldn't have a drive-thru life--we experienced the slow-food alternative. We have layers of complexity and relationship that have meant we must always engage with our life and as Robert Frost wrote, "That has made all the difference."

These opportunities for learning and growth have enhanced the lives of our whole family.

Beyond this, the things I have learned have given me the opportunity to give back--to share the things I am learning with others along the way. I have learned advocacy and public speaking and gained a sense of purpose that I never had before.

My husband and other children have benefitted as well. The common purpose of parenting a child with a disability has enhanced our family life on all fronts--the fact that Jenn is a great kid makes it fun too!

My older children have a sense of justice and an awareness of social issues and have had the opportunity to speak out in many forums that other kids their age have not. They have both taken an active role in helping Jenn learn and grow and the responsibility and maturity they have developed is already helping them at school and work as the begin to make their way in the world.

Last week a woman I met commented to me about my daughter with Down syndrome saying, "Well, sometimes we don't get the life we ask for so we just have to make the best of things..."

"Actually," I replied, "I have a much better life than the one I asked for--I wouldn't change a thing!"

She seemed very surprised.

I went home and told my kids about my conversation.

My daughter said, "How do people not get it?? I actually feel sorry for families who DON'T have a kid with Down syndrome!"

I laughed because, to tell the truth, so do I.

Now, I had this all written and that line was supposed to be the end until I read this article.

A family in Oregon is seeking big bucks from the doctors who did not diagnose their toddler's Down syndrome pre-birth. They state unequivocally that their daughter has changed their life and they would have aborted her if they'd known.

This article made me physically ill.

First of all I feel heartbroken for the family whose experience with their daughter has not been as positive as mine.

Secondly, it frustrates me that this story has made the news. My story about the positive impact disability has had on my life will never have the credibility with our ableist society as this family's story will because our society fears disability and WANTS excuses to opt out of dealing with disability and those who have them.

I know families whose experience with their typical children has been extremely unpleasant as well for various reasons, this isn't necessarily a disability issue, but disability will undoubtedly be blamed.

Thirdly, I am desperately saddened for that little girl and her siblings growing up in a town that knows that her family would have aborted her if they'd known her. Who will want to babysit her or be her friend? What will kids say to her and her siblings on the playground? And how will this stated need for perfection affect hers and her siblings' sense of security with their parents? I can't imagine any amount of money that would be worth the cost.

Picture from here.

The Kobayashi Maru: Lessons About NVLD from Down Syndrome

This is my favorite Star Trek scene, from The Wrath of Khan where Kirk says, "I don't believe in the no-win scenario." Well neither do I!

As I have mentioned before, my son has a diagnosis of Non-Verbal Learning Disorder. For some unknown reason (though Karen has a theory!) I always posted more about Down syndrome than NVLD (or NLD as some folks say) until recently. (Here is the link to my first post on NVLD)

As the parent of a child with Down syndrome who was diagnosed at birth I had some definite advantages when my son was diagnosed with NVLD in the 4th grade. I had many connections in the local disability community, had expunged any disability prejudice that clouded my thinking, and I knew a lot about development, advocacy and rights. There is lots and lots of data available about Down syndrome and nowadays most of it is positively stated. And there is a well-formed and experienced community of families of people with Down syndrome to guide newbies along.

Parents of children with NVLD diagnoses get NONE of these advantages out of the gate. It is really pretty pitiful.

So, I want to offer a disability primer to ease the learning curve a bit for you. Some of this is mindbending stuff because of the society we live in, but trust me, if you get your head around this stuff you and your child will both be better off!

First about disability in general:

As it says in the DD Act:

Disability is a natural part of the human experience that does not diminish the right of individuals with disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural and educational mainstream of American society.

For more about the natural-ness of disability read here.

Disability means that part of your body works differently. Not better or worse, just differently. Some folks see, hear, get around or learn differently. There is no heirarchy--my near and farsightedness (!), my son's diagnosis of NLD, my daughter's diagnosis of Down syndrome and my friend's Cerebral Palsy are equivalent.

The sooner you come to the decision that disability is FINE, the better off you will be and your child will benefit from your belief in them--doubt is poisonous and they will get plenty of that from others. Too much fighting the disability gives the strong message to the child that they are not ok... and if you exhibit pity or unacceptance for other disabilities your kid will make the jump that disability (and they themselves) are bad. It will help all of you to get past this!!!

Now, about experts: Down syndrome is a chromosomal issue and there are literally hundreds of possible symptoms. No one with Down syndrome exhibits all of them--or even most of them! Down syndrome plays out differently in every single individual. As my friend Laura told me when my daughter was born, "When you know one person with Down syndrome, what you know is one person with Down syndrome!"

Because I know tons of families, I know there is a range and expect individual strengths and needs that don't necessarily follow a 'Down syndrome profile.'

When it comes to NVLD the literature implies that folks all present the same way. This is dead wrong. I know several people with the diagnosis and they are all quite different from each other. They sometimes have some commonalities, but they are all unique individuals.

The literature about NVLD is also FAR more negative than anything you read about Down syndrome nowadays. I think this is because it is a newer diagnosis. The literature out of the 1970s about Down syndrome was terribly discouraging as well, but has grown as clinicians, educators, parents, folks with the diagnosis and others have gained experience.

Trust yourself and trust your child FIRST. Be defiant about it! This is a medical diagnosis, it is not a script.

You will build a life that suits your child, you will stand up to naysayers, you will challenge systems that don't work, you will problem-solve and you will create--and your children will learn that from you.

You can do this.

Repeat after me:

You can do this!

21 Things Unrelated to Down Syndrome

I got this meme of sorts from rickismom and she got it from Maureen…it looked like fun so I thought I would play too.

• Jenn LOVES movies. Especially musicals.
• She likes the subtitles ON when she watches movies—in ENGLISH she insists. We always offer different language options—we are just annoying.
• She also loves theater and concerts—good thing because her sister is a music (therapy) major and her brother is an actor…
• She loves being in chorus (prefers it without the audience though.)
• She has a very funny sense of humor.
• She loves to listen to the radio and sing along. She knows all the latest songs. Some of which make me cringe, but she is not my only child that knows them…
• She likes to read—gets very attached to certain books.
• She has long, blonde hair.
• She likes the idea of dogs, but not actual dogs.
• Jenn loves to run track—hates basketball (too much noise and they keep throwing things at you!)
• Math, sewing and cooking are great.
• She does not like pickles or spice cookies or salsa.
• She has to be pretty motivated to tolerate loud noises.
• Her favorite foods are pizza, cheeseburgers and whatever I am making for dinner tonight (a refreshing change from her siblings whose least favorite food is whatever I have cooking!)
• Her favorite part of High School Musical III is that Zac Ephron is “mad hot!”
• She loves babies, though they make her nervous when they cry.
• She will negotiate away almost anything to get to sit in the front seat.
• She loves her family and keeps everyone’s pictures on her digital key chain.
• She really does not like shopping though she does like getting stuff.
• She likes going on vacation—and likes coming home at the end.
• She makes everything fun.

About the picture: A bunch of folks standing outside the church where my brother got married. My kids are in the middle, my s-i-l is to the right and my uncle to the left. I don't know who the folks in the background are.

A Vocabulary Problem: Eugenics and Down Syndrome

Apparently there is a newspaper columnist in the world, whose platform is to advocate vehemently and persistently for people with disabilities in general—and Down syndrome specifically—to die.

Well, apparently this person does not like the word eugenics to be associated with her point of view. She thinks the term eugenics has too many negative connotations. She believes, apparently, that ridding society of a class of people—if you have a “really good reason"—should have a happier sounding title.

And this person KNOWS they have a “really good reason" because they have observed dysfunctional families which include this class of people and it was…. bad….

There were struggles. And hardship.

Clearly this means that…..

ALL families who include this class of person are dysfunctional…. and bad….

So, she can’t help but conclude that…..

This class of people should be eliminated.

It isn’t exactly scientific, or even logical.

Life without disability is also fraught with difficulties and struggles—in fact, there is dignity and valor that cannot be achieved without struggling.

Apparently this authority has never observed that.

Supports for people with disabilities (like access to education, healthcare, employment, and life in the community) greatly reduces hardships for people with disabilities. (I have written about improvements in life with Down syndrome here.)

Support for dysfunctional families often improves that family's functioning.

But our friend has never observed these things either--which means they don't exist, naturally. Also.

Honestly, the first time I heard this person spew their drivel I thought it was a satire.

But no. She is serious.

Or, I should say, Serious (with a capital S.)

I will NOT link to this person, or even name them, because if they get even one blog-visit because of me I will not be able to live with myself. (But I read about her on this website!)

But I do hate to ignore a person in need.

And situations where one group of people deem themselves superior and decide that the folks they deem as “less” should be eliminated is hardly a new event. There must be lots of vocabulary available.

Eugenics according to the Merriam-Webster online dictionary is defined as “a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed.”

Oh my, that is an UGLY phrase…. With so much BAGGAGE...

Fortunately, bigotry is an OLD problem. I am sure we can come up with something else.

Let’s see, when a ‘superior’ group eliminates others based on race, ethnicity, religion, gender, sexual orientation or some other difference are there other words used to describe the situation?

Try these: holocaust, pogrom, ethnic cleansing, persecution, genocide, extermination, hate crimes, abuse…. What did Idi Amin call it? What do they call it in Rwanda?

Help yourself to any of those words!

You're welcome.

Photo from here.

Warning: I am Getting Political

Well, my original plan was to beg Sarah Palin to cut it out. She was driving me crazy by mentioning "special needs children" over and over again as an area of priority for her campaign.

It seemed to me that invoking "special needs children" without mentioning any substantive measures she supports to make lives better for people with disabilities was going after the "AWWWWW!!!" reaction.

Equivalent to saying "I love kittens." (AWWWW!!!)

I thought people with disabilities deserved more--they are not children long and they need actual support that will allow them to move beyond living in their needs so they can contribute--to our communities and to our economy.

Education leads to work. Healthcare leads to health. Employment leads to economic gain.... You get the picture.

I wanted to implore, mom-to-mom that she think bigger--our communities need it, people with disabilities need it, our economy needs it. I figured that when Trig was older she would feel she'd been superficial and regret it.

Then someone sent me this:



(The part that caught my attention starts around 2:30ish)

My plans for this post changed drastically. Call me gobsmacked.

First John McCain just gushed about "relieving the burden" of disability. I would be raging at the insult to the largest minority group in the country if I weren't gagging at the sentimentality of it all.

(FYI, Candidates: The biggest burdens people with disabilities experience are the barriers created by a society that discriminates against them.)

THEN Sen. McCain said that Sarah Palin is "uniquely qualified" to FIND A CURE FOR AUTISM!!!

Now, I have a Bachelors degree (though I only went to one university) and I have had a child with Down syndrome for nearly 15 years yet...

I have not cured autism--or anything else, actually.

Clearly I am not living up to my potential.

I had toyed with the idea that autism is just a different way of being human, that research could teach us more about autism's causes and treatments, that funding streams and media coverage was increasing awareness of autism....

Nope, turns out I'm just a slacker.

Sorry everybody.

Picture from here.