Wednesday, April 28, 2010

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.

Tuesday, April 27, 2010

Love This

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

So, what do you think???

Monday, April 26, 2010

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!

Sunday, April 25, 2010

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?


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!)

Friday, April 23, 2010

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!

Thursday, April 22, 2010

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!"


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.

Tuesday, April 20, 2010

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.

Monday, April 19, 2010

Childhood Expressions

Kikkerland Imperial Led ChandelierBarbara 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!

Sunday, April 18, 2010

Autism Awareness Month:Book Review:Autism and Allelulias

Autism & Alleluias
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.

Saturday, April 17, 2010

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??