Autism Awareness Month: Update on Arrest Story

The young man with autism who was arrested last week for disruptive and aggressive behavior after an upsetting day at school had a court date today.

The judge wants to learn more about Autism, the school is trying to improve its procedures. And the state has decided he does not qualify for services (likely part of the Autism as developmental disability vs. mental illness dilemma that swallows many New Yorkers whole.)

I think it sounds like they are on a road that could lead to some good for both the boy and the community-- I hope so and will keep watching.

It Doesn't Go Away... But That is OK

I talk to a bunch of parents whose kids are diagnosed with NVLD (or NLD) and because my son is 18, and because he was diagnosed when he was young (which makes us experienced), and because he is pretty successful with his accommodations in place, there are a lot of parents who see him as "cured."

Well, he's not. (And he has given me permission to tell you so.)

We went to visit a college last week. Yes, this is late, but not as late as the visit we will make this week! (The decision must be made by May 1.) We were riding in the car and started talking about the Autobahn... and, thinking I was being cute I said, "Not to be confused with Audobon..."

"Audobon?" My son asked.

"Yeah, he was an artist in the 1800s. He painted birds."

There was a really long pause...

"I... don't understand," my son said.

"You don't understand paintings of birds?"

Then he got hysterical.

Yeah. He was imagining painting ON birds.

Too funny!

He can still be a bit literal (I say this knowing that that phrase will really bug him... one of the joys of motherhood!)

And organizational skills and processing time, and handing things in, and a few other things are still a big part of the way he is. The beauty is that he knows this and has a bunch of strategies that he knows how to use to help himself.

I expect he will have some struggles related to his diagnosis at some points in his life. I also expect that he will approach them with his trademark good humor and analytical processes. I expect he will take the things he knows and apply them to the things he needs... I expect he knows how to self-advocate and will ask for help sometimes. I expect some times he will muddle for a bit. And I expect he will figure out his own way in the world...

With his disability.

This phase of life is an adventure for everyone. He does have some different issues to contend with...

And he will be fine.

Picture from here.

Love This

Oh wow! I just saw this video on this blog. And I just LOVED it. Must share!!!



So, what do you think???

The 20th Anniversary of the ADA is This Summer And Yet.....

Barbara sent me to this link. And it is appalling. A young boy who uses a walker visited the playground at The Galleria Mall in Dallas in 2010 and the security staff REMOVED HIS WALKER from the play area because it is supposedly a hazzard. (The playground equipment is NOT a hazzard, but his means of mobility IS...)

These security guards are 20 years behind in their profession. Yes, that's right--the ADA has been the law of the land for 20 years (this July.)

In Dallas, Texas (not some tiny town.)

Lovely. Who else has a chance??

So, what can we do?

• If you live in Dallas, a phone call or letter to the mall's administration letting them know that you find this unacceptable and a suggestion that all of their security guards receive training about the ADA and their responsibility in upholding it would be lovely. Bonus points for anyone who writes a letter to the editor!
• There are many Galleria Malls around the country. A call or letter to the mall administration in your city referencing this incident in Dallas and asking what sort of ADA training is required for their staff (and suggesting where they can get some if  you happen to know!)

Situations like these are why I wrote my 'manifesto' ... and they are the reason this blogger, and this blogger are in Washington this week.



Twenty years is long enough to wait for access, rights and respect. This little guy should grow up in  in a world without this blatant discrimination--and we can help.

Leave a comment if you decide to take some action!

I've Gone and Done it Now

I have written a manifesto. It's short as manifestos go... and I think fairly low on scary ramblings (edit, edit, edit!!! :)

Here it is:

I believe in the Disability Rights Community.

That is to say, I believe that disability is a natural part of the human experience that is often misunderstood by our culture and I believe in the people with disabilities and their allies who recognize that human beings are undiminished by disability. I support these people who strive for respect, recognition and rights.

We are a minority--there are very few of us.

We are extraordinarily diverse--in diagnosis, in capacity, and in interests. A linear approach where we will all take the same steps at the same time is not for us.

Yet I believe.

I believe because there is an ADA and an IDEA--there wasn't always.

I believe because the Paralympics exist--and any gets televised. More than last time (and there will be more next time, if we work on it.)

I believe because the Community Choice Act, the CLASS Act and Medicaid are all discussed in our nation's capitol.

I believe because I have seen kids and adults speak up for better treatment--for respect.

Because disability advocates met in the White House

Because movements started by people like Ed Roberts and Justin Dart continue against the odds.

There is Closed Captioning and Assistive Tech and Dragon Naturally Speaking and voice output apps for iPhones.

Do I think any (or all) of these things are ENOUGH? Are we DONE??? Have we created the situation where people with disabilities have a fair shot at a decent life throughout our land??

Umm, no.

Can I follow, jump into and address every single disability related issue? Do I even want to?

No.

But I believe. And if your work advances the understanding that ALL people with disabilities are complete human beings and full citizens NOW (not once they've jump throught some normalizing hoop), I claim that we are on the same team.

So, if you encourage moms, parent your own babies (or teens, or adults), train youth leaders, promote sports, take on the bioethicists or the lawmakers or health practitioners... (or if you are one of these!)

If you try to to improve the lives of people with disabilities one word at a time, one conversation at a time, one story or history at a time, one potluck at a time, or one protest at a time....

If you promote equity, understanding and inclusion through activism, authoring, through caregiving or on the airwaves...

If you focus on children, or teenagers, or adults or the elderly, or parents, or professionals... advocate, self-advocate, or allies...

If you work with acquired or lifelong diagnoses, if your issues are cognitive or mobility, or illness related, or if you know most about blindness, or paralysis, or amputations, or deafness, or autism, or aging--or something else entirely, I AM FOR YOU.

If you advance functiion or philosophy or legislation... from within systems or against systems...

Or any combination thereof...

I believe in you and in what you are doing!

We may never be unified, but we can unite. And where I can unite with you I will.

The world IS different for people with disabilities today than it was even 10 years ago. While our approaches may never be the same you will NEVER hear me say that you are wasting time, I will not minimize your efforts or concerns. You won't hear me call your work PC or useless. We may not always have the same priorities, but we will find ways to work together.

I am proud to be on your team and I applaud the work you are doing in this world!

That is all.

(See my blogroll for examples of all of these types of advocates!)

Tis the (Blog) Carnival Season!!!

A blog carnival is a collection of posts written by various authors (often) on a single topic gathered into one handy place. I have been participating and reading them since I started blogging. Participating in Blog Carnivals is fun to do. They are a great way to learn about different perspectives and to 'meet' new writers, and to have them meet you. The current Disability Blog Carnival, #65, is about 'Balance' and it is posted over at River of Jordan. There is a variety of interpretations of Balance... all good reading. Enjoy!

BREAKING NEWS: Barbara at TherExtras is hosting a blog carnival of her own as we speak!!!! Her topic is Childhood Expressions. Head on over for some good reading.

May is a big month for blog carnivals. The annual BADD (Blogging Against Disability Day) is May 1 hosted by Diary of a Goldfish. Disablism (more often called ableism in the US) is societal prejudice about disability--often a bigger obstacle to success than any diagnosis. Writers write and Goldfish compiles hundreds of post from around the world for this event. To participate (and to grab her cool widgets) see here. Once this is posted you'll want to bookmark the page to go back and do some reading whenever the spirit grabs you.

Disability Blog Carnival #66 will also be hosted in May by me. The theme will be "Story." I will let you know more about that in the weeks to come!

Note to Self: Never Read the Comments!

I read this post last week about a British woman who was shocked by a comedian's remarks about people with Down syndrome. It is a great post--she has a beautiful daughter and I really like her non-confrontational, explanatory approach.

Naturally, I couldn't stop there. I forgot myself and read the comments--and it was truly painful.

There were many comments  supportive of the woman's experience, but the rest were pretty vile.These are not folks that disagreed with her opinions, these are folks who were furious that she voiced an opinion at all. Disagreement keeps things interesting, but these people didn't say that they saw things differently, they verbally assaulted her.

First there were the folks who feel that people who don' t like something should NOT say so... have you noticed that these folks do not follow their own advice?

Then there were some who needed to blame the victim--her pain is her own fault.

Some shared the comedian's stereotypical view of people with Down syndrome.... and tried to prove themselves right (really???)

Still others made the case that if she wasn't a perfect person she had nothing to say--another group who should show us how this works by example... but they never do, do they?

Lots of forms of  "Just Shut Up!"

Ugh.

My opinion? If someone hurts you, you have the right to say both 'ouch' and 'stop it.' You do not have to just lie there and take it, whether anyone else likes it or not.

Now some might say don't just skip the comments, don't take a stand at all, but I don't agree. It may be small comfort, but there are a whole lot of people talking about disability respect today because of this event who had never thought about it 2 weeks ago...

And, while reading the comments may give you an ulcer, activism actually makes people happier.

Plus, there is a really great disability-blogging community. (We're wonderful... just ask us!)

I hope these small facts will help this mom hang tough!

Words Hit Like a Fist image from Rolling Around in my Head.

Autism Awareness Month: So Much to Teach

Read this article to see what happened in a town near Rochester this week. The charges have not been dropped. There is a court date.

This story is so hard and scares parents--and should scare so many more people.

This boy's outburst is a symptom of his condition--a condition that made him respond to the sensory assault and destruction of his routines caused by 4 fire drills in one morning with agitation. These symptoms require intervention and accommodation, not litigation.

Could a safe, quiet space with routines of its own be designated for fire drills... probably. Could meds and routines be put in place to decrease agitation, possibly.

Can our courts or jails provide any of those things? Nope.

I don't know the reason the charges haven't been dropped, but I fear it's for the old familiar reasons: that there are people who think that people who hit people get charged... and things like 'he just has to learn...' etc. I imagine some folks saying, as someone often does, the community/school/whomever is not equipped to deal with these situations.

The answer to not being equipped is becoming equipped, of course.

People with developmental disabilites are not the only ones whose conditions have these symptoms. By this token elders whose Alzheimer's disease elicits violence from them should also spend time in jail... because the community/caregivers/healthcare facilities are not equipped to deal with that... We could empty out the nursing homes, hospitals and community caring situations right now...

And it wouldn't work.

The court/jail systems are not equipped to manage these conditions either. And does not have the funding or vision to become equipped for this either.

Because punishment does not alleviate symptoms.

The idea that 'we shouldn't have to' or 'someone else should.' deal with these situations holds no answers. Historically this leads to isolation and intstitutionalization leading to horrifying outcomes for people with disabilities at great cost to their communities.

Communities must become equipped. Autism education, committment to finding and implementing the individualized accommodations that people need are a community (including, but not limited to, schools, caregivers, law enforcers, etc) responsibility.

There is no substitute.

This is why advocacy exists. To build society's capacity to embrace its members.

Childhood Expressions

Barbara at TherExtras is hosting this Blog Carnival inspired by William the Bear who has lived in Barbara's room since her daughter moved him in there. I had to join because I have a Lambchop doll who moved into our room one afternoon who will never leave either!

Childhood expressions are some of my favorite memories of my children. When my kids were little I had one earnest friend who chided me for not immediately correcting my children and allowing their immature understandings become part of family lore. Nearly 20 years later both of our kids are finishing up high school or headed to college and no one could tell which of our kids has silly family stories in their backpack...

(One of my children, however, hated to get anything wrong so some favorite stories will not be included here...)

Here are some of my favorites:

Bowl-hat: Is it food storage or a wardrobe accessory? At our house, both. Then we would wash them in the sink with mountains of suds. Still, a sanitizing dishwasher was good to have.
Ladies and Gempimum!!: An announcement made before feats of danger and derring-do--wise mother wears sneakers at all times and starts running before the end of the word 'ladies.'
Oh Poor Jeffer: this was another announcement that required mother to run. When baby Jennifer cried my son would say those words and then throw her the toy he was sure she was craving--a truck, a bowling ball... whatever... Her life would pass before my eyes every time.
Diamond Room: Dining room (it has a chandelier.) I kept this because we were the only family on the street who had one...
Ball Room:  aka the living room... went well with the Diamond Room and the 'our home is our castle' meme--would have been even better if it wasn't because we had a ball pit (and a mini-trampoline) instead of furniture in there.
More Jesus Please: This was a signed request... hilarious because what she wanted was more Cheez-its.

And, drumroll please.... our family's all time favorite childhood expression is:

Can't Like It: This was (and often still is) my daughter's response to negative experiences... love this and use it all the time.

Too many chores, too little time and me the only one home to deal with it?

Can't like it!

Autism Awareness Month:Book Review:Autism and Allelulias

I was sent a copy of Autism and Allelulias by Kathleen Deyer Bolduc to review for Autism Awareness Month and I have to tell you, I love this book!

I have shared my Christian faith here before, but I was a bit anxious about this book. I was not in the mood for a sappy faith and disability book full of "if you would JUST..." then your path would be easy and strewn with rose petals. I have too many faith-full friends who work too hard to understand, interpret and deal with too many issues to have Autism minimized in this way.

At the same time I cannot tolerate the "disability is tragedy" and "Autism is the enemy" mindset either--people with Autism deserve better. They have more and ARE more than those mindsets allow.

Happily this book does not go down either of these common paths. The author has a 24 year old son with Autism, intellectual disabilities and an anxiety disorder. She has dealt with the challenges of learning, behavior and societal challenges. And she LOVES her son and wants the most for him--now, not after he somehow changes.

In short, she gets it.

It is a lovely little book. It's written in a devotional format with short chapters headed with a Bible verse followed by reflective anecdotes. There are also some touching poems (one about good mothers brought me to tears.) And each chapter ends with a prayer--prayers of joy, prayers for peace or acceptance, prayers of gratitude. You can read it in small daily doses, or read as many as you want, all at once.

You will laugh, and you will cry.

I think any parent of a child with a disability could enjoy this book--I did and neither of my kids who have diagnoses have autism. I think any parent of a child with difficult behaviors would relate to this family--Bolduc is honest and descriptive--she knows where you are. And her interpretations of her experiences--joyful and tough--through the eyes of faith will be a gift to any reader.

Balance... Yeah, It's a Problem

It is ironic that the first post I am writing after not blogging for nearly 2 months is on balance... Because the reason I didn't write for so long was indeed the lack thereof.

Ahhh well.

What can I say? Life is hectic. There is just so much going on: school, kids meetings and activities, work, life-maintenance and more. Disability, of course, adds to this--sometimes more and sometimes less. Truth is, when things get really out-of-hand my favorite things get thrown into the back seat and buried until I finally clean some stuff out, or until I just can't stand it anymore.

This is NOT a recommended method.

Not. At. All.

This is true if you don't have any disability issues to contend with... and more true if you do!

It is far better to establish some routines for the necessary things in life like laundry, meals and sleep, to set some boundaries around the consuming things in life like projects, activities and uproar, and spice things up with enough of your faves to keep yourself from becoming a dull boy/girl...

Yes, that is definitely the best way.

But, sometimes I forget... until, like now I realize that I am spinning my wheels. I am tired and cranky and tasks I usually find reasonable feel like tremendous burdens. Yuck.

You know? No one really likes me this way. Least of all me. And EVERYTHING gets harder in these seasons...

Time for some reading, some writing and some socializing. Not much of any of them (at a time anyway), but some. In my hectic life--not once I'm no longer busy. Because they just aren't as frivolous as they seem.

My kids are nearly adults... and I am learning this again.

No matter what your daily life consists of add in something you love: bake some awesome cupcakes (and share them with me!), color your nails, write down all the birds that land in your yard... whatever! Fit in a bit of what you love--investing that time pays off in energizing you for the rest!

Remind me of this next time I fall off the earth, would ya??

Heartbroken

You may remember Baby Oliver. I am so sorry to tell you that he passed away this week.

He had heart surgery, and did ok in the surgery. His parents got at least one good report and then something went horribly wrong.

Please hold his devastated family in your thoughts and prayers.

1840 Part Two

This is the post I'd have written first if I were a better person... sigh...

My son got his SAT scores this week and there is a crowd of people I should share that with--because of the help and support they gave. There were some notable stinkers who I really want to TEACH (not slap, teach!) about kids and their potential. In the beginning believers were few and far between--but remarkable--and in recent years there have been more and more.

I would start with our family--we have a large and diverse family who have always seen Tom as having potential. I know a woman with a son not unlike Tom in many ways whose family treats him... badly. We are lucky and I am grateful.

Then there was Jenn's OT. I went for quite a while with a stomach ache about why Tom couldn't zip a zipper. I had an OT in my house every week, but she was there for Jenn. One day I finally did ask and she was really helpful. Gave me some ideas, language to use when talking to professionals and strategies for building progress (lots of crawling... tunnels, etc...)

I would also have to thank the Down syndrome community because they taught us enough about living with disability that we were ready to go when Tom was diagnosed. The Advocacy Center in our town who teaches advocacy skills gave me the understanding of the systems that were available and how to access them--great allies to have!

The developmental pediatrician who evaluated him, and then took my tearful call when the literature she gave me said that my son had a sad and limited prognosis. She told me outright not to believe that. She said to use his language strengths to meet his other needs, build accommodations when needed and NEVER give up. She told me to think about what early literature said about people with Down syndrome and what they believe now... Be informed by the literature, then use that information to build the life he wants.

This developmental pediatrician moved away some years ago--wherever she is, they are lucky to have her.

I would thank Mrs. T. from one of the children's programs in our area. They used to offer little 'courses' about science: under the sea, geology, anmimals, etc. Tom loved that stuff so I put him in one that did not work AT ALL. He was with all girls and they made little pictures and crafts all class. I picked him up and he had this little wrinkle in his forehead that didn't go away for hours. I spoke with the program director who moved him Mrs. T's class because Mrs T. had an 'active teaching style' (aka WILD!) What a difference! Lots of facts, lots to do and see and touch, much to learn. Those classes turned a lightbulb on in Tom. Love of learning was ignited and has stayed with him.

While gradeschool was often frustrating there were always members of Tom's team who were believers--thank heavens! The naysayers were tough but never got the power they could have had because there were others asking questions or pointing out that he did always handle CERTAIN things fine... They kept the momentum going and I thank them.

I want to thank a guy named Bruce. He was part of a consulting group--two men who taught school and also did consulting work. They taught companies to use the potential of their worker and they taught presentation skills (probably among other things, but I really don't know.) I was at a presentation on presentation. They talked a lot about different types of learners and in one of the breaks I was having a conversation with Bruce and something he said made me think about my son. I mentioned that he was considered distractable, did terrible taking notes, etc, but then he would ace tests and frustrate his teachers to no end. He said, "Maybe he just can't produce output and take in input at the same time--see, no one talks to him when he's taking a test. Many people can't juggle."

Best thought ever! Perfect description for a kid he'd never met. Perfect timing too.

7th grade. When taking notes becomes very important. I took that back to Tom's team and that phrase set everyone free. He became one of the better students. A couple teachers even called him a favorite. (He does also have a very strong auditory memory which works in his favor.)

The school psychologist who evaluated him for his last triennial was amazing. She called me part way through testing to ask if she could do a couple more tests with Tom because she had never seen his learning pattern before--and she had already discussed this with him and he was interested too. I said sure! She gave us the best profile about Tom and his learning and thinking skills--and needs. She laid it all out for him beautifully. She told him he would have to manage things always to be successful, but that MANY portions of the world are wide open for him. She explained and answered Tom's questions--he's walked a little taller ever since.

He told me after that he always HOPED he would be ok, and BELIEVED he would, but now he thought he WAS.

Want to see your mom cry? Tell her that.

The junior high and senior high teachers in our district are also extraordinary. A lot of them read the paperwork and worry about having Tom in their class, but to a person they have all come around once they got to know him. He thinks his classes are interesting... I think they appreciate that. (He is a teenager and doesn't always make the best choices about everything, but they quickly learn the difference between a learning issue and a bad choice!)

And the special education teachers in our Junior and Senior High Schools are amazing. Tom got an IEP in 7th grade. The special ed teachers consult with his teachers and work with his accommodations. This means, among other things, that they sit for HOURS proctoring the exams where he gets extra time.

I spoke to one of them about that once and she told me that extra time doesn't help if a kid needs to know more, only if they need to produce more. And that's Tom. Processing time and the mechanics of production are slowed (though keyboarding is certainly faster than handwriting.) This teacher told me she LIKES working with Tom because when they put the accommodation in place he performs... She said that's what she went to school for.

And most of all credit goes to Tom himself. He keeps on keepin' on, no matter what people say to him, whether they work for him or against. He learns and grows and keeps going... Congrats Kid, You did good!

This is a score. Not a guarantee of an easy life or productive carreer. NVLD doesn't go away and I know that, but it is a step toward a carreer that interests Tom... and maybe a bit of a sign that some of the things we have learned along the way about NVLD have been right--at least in how they affect my son.

Wow! Some Folks are Just Too Clever

My friend Jennica just sent this out, is it amazing or what??

1840

My son got his SAT scores back yesterday.

I am so tempted to send it to a few people.

Like the teacher who told him when he was 8, "You're just not as smart as your mom thinks you are."

And the teacher who told the IEP committee in 4th grade that she "Did NOT believe in him... at all."

And the IEP team that told me that if he needed accommodations he shouldn't be in (their) academically challenging classes.

It feels very good to be right.

Oh yes it does!

R-Word Firestorm

The first time I ever saw self-advocacy I had no word for it. I was in college and I was riding the bus into town to do some shopping and this young guy called someone else on the bus a r*tard.

There was a woman who had a disability sitting toward the front of the bus. She turned around and told him to shut up...

And that jerk looked at her and said, "You don't even know what that word means!"

"I do too! You're saying he's bad because he is like me. Well I am NOT BAD!"

The bully said, "I wasn't talking about you," and got off the bus.

But he was.

Insults are words that give people a little verbal slap. They are individual and specific.

Slurs are the big guns. Slurs not only insult individuals, but burn entire groups of people. They are part of every civil rights movement because they disempower. They refer to gender, race, religion, disability and more. Slurs are so powerful, so forbidden and so tempting... The possibility of hitting someone that hard makes us giddy.

So we create exemptions to make it OK to use the occasional slur. Here are some of the exemptions I have noted over the past week:

*It's OK if you're a Republican. (IOKIYAR)
*It's OK if it's funny--or satirical--enough. (IOKIIFOSE)
*It's OK if you're referring to yourself or your own group. (IOKIYRTYOYOG)
*It's OK in private. (IOKIP)
*It's OK if you call it Free Speech. (IOKIYCIFS)
*It's OK if you're really mad. (IOKIYRM)
*It's OK if you're not prejudiced. (IOKIYNP)
*It's OK if you didn't mean it that way. (IOKIYDMITW)

Have I left any out?

Do they work? Do any of these exemptions actually de-slur the words???

No, they don't.

It's just not OK. (IJNOK)

Picture from here.

Wrong Again: This Time About Palin and Limbaugh

If you ever want to know how things are going to play out politically, ask me and then know it will be the opposite. Honestly, last year I was certain that President Obama would make more than a behind-the-scenes apology after his Special Olympics dis. And I was equally certain that Rahm Emmanuel wouldn't. And I certainly couldn't picture Sarah Palin tsk-ing a Republican...

And of course I was wrong on all counts. I should have learned, but I didn't.

This week I KNEW for sure that NO mom would EVER put up with the level of POISON about people with cognitive disabilities that Rush Limbaugh spit out on his program this week.

Wrong, wrong, wrongety, wrong, wrong!

Not only did Sarah Palin put up with it, she joined in. She called Limbaugh's vehement spewing of the r-word over and over again "hilarious" and "satire."

I never saw that coming.

Of course, I do realize that disability issues don't give anyone a lot of political traction--if we were that powerful or respected these issues wouldn't even come up. In fact I have mentioned this to everyone who said that Sarah Palin was using her son with Down syndrome as a political prop. I told people that Trig really wasn't going to get her any clout, but with him she might change the world.

And, I realize that Sarah Palin does have a tendency to jump into things she doesn't understand and then quit when they get hard: things like talking to reporters and governing Alaska, for example.

Still, I believed she would hold firm for disability respect because she is a mom.

I predicted that she and Rush would plot something out where he would say that he wouldn't ever be "PC," but would that he would defer to a mother's righteous rage.

Good thing I didn't bet money.

So how will this play out?

Will people see this as another episode of Sarah Palin quitting when the going got tough?

Or will folks see this as proof-positive that disability issues don't pertain to them, and as permission to carry on the traditions of disrespect like a bunch of playground bullies?

Or will people be horrified that when the chips were down a mom, any mom, chose Rush Limbaugh over her own baby?

Or was merely giving birth to a baby with a disability enough for everybody?

At our house we have tons of family stories about how we look out for each other and how we stick together no matter what, how will this event play out in the Palin family stories?

This time I'm not even going to guess.

Read all about this event here. And did you notice this?

Picture from here.

This and That

Last week, Jennifer approached me to tell me things that Carly, a girl from her class, was doing after school, then she would take my face in her hands to say "And not me!"

Jenn was clearly feeling left out.

At first I would comment that Carly was just a busy girl... Then I asked if Carly was doing this with her family.... Finally Jenn made me understand that there was an afterschool club that she wanted to belong to.

So we asked and Jenn is now taking part....

Excellent bit of self-advocacy, wouldn't you say?

And now for some interesting links:

This post by Stephen Drake about Writers Logjam talks about an NVLD issue that my son runs into too... As do I sometimes.

Deborah at Pipecleaner Dreams talks about the heroes she has met while parenting her kids with disabilities.

And this letter from Deborah to professionals working with her kids should be read by every young professional.

I am really enjoying seeing the Think Beyond the Label ads around the net.

And in case you think people with disabilities are the only ones working to change the language and the message that the world hears about them, they're not!

Rush Limbaugh Brought Tears to My Eyes Yesterday

Caution: Watch this video at your own risk. I heard it unprepared yesterday and it actually brought me to tears. I am only posting it because when I mentioned the incident to a couple people yesterday they didn't believe me...

My daughter has Down syndrome. I'm not a wimp. I stand up and handle lots, but the furnace blast of abject hatred in Rush Limbaugh's broadcast took my breath away.

On his radio program Limbaugh praised Rahm Emmanuel for calling liberal Democrats r*tards... and that was just the beginning...

Limbaugh yells the r-word over and over again, to ridicule liberals, to mock people with disabilities who deign to say "stop it" when something hurts them, and to deride the disability activists who met with the administration at the White House Wednesday about respect for people with cognitive disabilities.

Crass.

Cruel.

Limbaugh's tone leaves no doubt. He believes people with cognitive disabilities are nothing:

Beneath contempt... Completely valueless...

Emmanuel's incident was bad enough. Limbaugh's diatribe made Emmanuel look like an absolute saint.

Yesterday Limbaugh stated on his website that he was just quoting Rahm....

In admiration?

Or because he is 6?

Well Rush, as my mother would have said:

"If Rahm Emmanuel jumped off the Barge Canal Bridge would you jump in after him???"

Way to think for yourself AND take responsibility.

Sarah Palin said Emmanuel should be fired for his remark--a remark that took months to even hit the newspapers... She made statements about Rick Perry's blatherings in Texas yesterday as well...

She has herself a dilemma now. This guy is supposedly her buddy--and he hates her kid.

What's she gonna do? Not for nothing, but mom to mom? I'm hoping for a full-on mama bear smackdown.

If my family, my friends and loved ones have to swallow this bile, this better be a giant step toward respect.

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.)