Monday, March 30, 2009

What a Weekend!!!

The school musical, Anything Goes, was this weekend and my son was in it so there was much activity at our house. I had heard many of the songs before, but had never seen the play--very funny! And of course, it was great (did I mention my son was in it?! :)

My blog also had a lovely weekend. It got a mention over at Finding My Way, a lovely e-mail from a reader, and this blog award from Ruth over at Wheelie Catholic.

Here are the award's rules: You must pass it on to 5 other Fabulous Bloggers in a post. (You might find their email addresses on their Profile page or, if not available, post as a "comment" to their latest post.) You must include the person who gave you the award, and link back to them. You must list 5 of your Fabulous Addictions in the post. You must copy and paste these rules in the post. Right click the Award icon and save it to your computer, then post with your own awards.

Here are five of my faves for your viewing pleasure (I got another award last summer so I am not going to duplicate.)

Bad Cripple: Bill Peace is a professor and writer and skier and has a disability. He has great perspective on disability issues.

Planet of the Blind: Steve and Connie Kuuisisto write this blog which also has disability issue perspective as well as a distinctive literary bent.

Disability News and Commentary. Pat is a journalist and the mom of a daughter who has Down syndrome.

I also like The Nineteenth Floor which
features frequent witty entries.

Also check out The Quirk Factor which tells of the life of a mom who has sons--one with autism--and a sense of humor.

I have extreme guilt choosing just 5. Please check out my blogroll for more great ones--I will just need more awards so I can highlight all of them!

And here are five of my addictions:

*Books (I did not copy these from Ruth's paper... I just had the same answers--honest.)
*Blogging and reading blogs (You may have guessed this...)
*Microfleece--so soft and warm (though I will dump it like yesterday's paper if spring ever arrives!)

Wednesday, March 25, 2009

Changing the World One Conversation at a Time

I like this campaign. I have heard from tons of folks that I should just get a sense of humor, that it doesn't matter, that it won't make a difference, etc, but I like it.

First of all, it's assertive. When my son was little and having trouble with some kids I ended up telling him one day not to cry around mean people. I told him I didn't know why, but crying makes mean people meaner.

It should not be true. I hate that it's true.

But trust me. It is.

Well, throwing your wishes up against those who are enjoying their power has the same effect. Wishing people would just be nice to us and educating the heck out of them to support that wish just makes the bullies enjoy their power more. In the article I linked to yesterday Maggie Hoffmann said "Gratitude is not a viable advocacy strategy." Well neither is wishing.

I am delighted that the disability community is finally standing up and saying "STOP IT!"

Secondly, I have had my own ideas about culture change for a long time which I will write a LONG post on at some point, but let me share this image:

Picture that year in Sunday school (or school, or scouts or wherever!) where that naughty kid ran the show. The teacher or leader tried and tried to get control, but just couldn't.

How'd they do it? How did that naughty kid take the lead?

When I explain this to new charge nurses I call it the Michelangelo Method. (Yes, I made it up, but giving it a name adds credibility, don'tcha think?)

There is a story that someone asked Michelangelo how he sculpted his masterpiece, David. Michelangelo thought for a moment and then told the person that he had the vision that David was in the stone and he just cut away everything that wasn't him.

Well, that's just what that naughty kid did:

*He made a vision--of mayhem where nothing serious got done.

*Then he cut away what did not belong in his vision--by responding every time things got off track (by making fun, threats, or other general naughtiness.)

*And thus, that naughty kid became the leader--no matter who was actually supposed to be in charge.

There are a huge number of possible visions in the world, and there are a wide variety of 'cutting away' tools, some acceptable and some not. But that naughty kid enacted what I consider to be the first step of leadership.

The Spread the Word to End the Word campaign has a vision of respect and they are using the tools of education, media, and more to respond every time and cut away what does not belong in that vision.

They are leading.

And we can help.

Click the pic above to sign the pledge, sign your group up as supporters, get a shirt and join the fun! It's not too late, you have almost a week!

Tuesday, March 24, 2009

Final Exit Network + Ableism = Danger

Because I object to expressions of ableism I have been asked why? What's the big deal that people don't respect or value disability? What harm really comes from it?

Where do I begin to answer this???

Every societal barrier people with disabilities face from lack of physical accessibility to seclusion and exclusion from the benefits other people routinely expect (education, jobs, community living, etc)stem from this--at best this leads to lack of respect and access, played out to its worst, it is dangerous. And no, I am not exagerating.

Final Exit Network: A Georgia-based organization, apparently with branches all over who believe in assisted suicide for all. Their methods include a bag over the head and someone to hold (?down) your hands in case you change your mind.

Disgusting and really creepy.

They do lots of spin about death with dignity and by their definition dignity means control and ease--not perserverance, not self-lessness, not heroism, not bravery, not goodness--just control. They do lots of spin about dying pain-free as if pain can't be managed in people who are dying--which it usually can (I am a nurse who works in chronic care. I have done lots of end-of-life care and very few people die in pain, AND we don't ever resort to killing anyone. Of course if for some reason you want people to die who aren't terminally ill, I suppose you would have to...)

Ableism: The belief that disability renders life not worth living and people who have disabilities less valuable than others.

Ableism can be so strong that parents will help their child die rather than help them live with a disability. (As a parent, I can't even picture this, but here is the story. Now, maybe this guy was so miserable or so unable to deal with life that his parents would have helped him kill himself at some point anyway, but it seems to be about disability, doesn't it?)

And the scary part is that when people with disabilities run into temporary issues that make their expression of their wishes difficult, OTHERS may take matters into their own hands--because the message that death is better than disability has been so well marketed.

This quote from C.S. Lewis comes to mind:

Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience

(Quote from here:

Monday, March 23, 2009

Some Hot Links

Well, my attempts at scheduling a post completely didn't work--I actually posted between posts somehow... but I am trying again because I just want to know how. Below are some awesome things to check out.

A great article from a parent-advocate.

Here is my sad little poetry day poem. It's a haiku... So you decide, does correct syllable count and mention of season actually turn words into poetry?

Winter walls withhold
identities never claimed-
invisible lives.

I think not!

Now go read this:

A moving poem.

A fascinating concept for idea gathering and community building.

I haven't signed on to rubysbequest yet, but I will this week. I hope you join me, it's one of those things that without lots of participation will not be very representative (or probably diverse...)

An article for Brain Injury Awareness Month from someone who knows.

Have a great day.

Sunday, March 22, 2009

Fighting Without a Club

An article from the AP on Media Dis&Dat yesterday said that there has been more fighting at the Corpus Christi State School in Texas in the last few days. I hope they knew this was going to happen and I hope they are doing something SUBSTANTIVE to prevent even more.

This continued fighting is totally predictable. That facility has developed a culture of violence and a little news exposure isn't going to fix it.

Residents have been rewarded for fighting--perhaps in a concrete sense, but certainly with attention and cameraderie. They will miss those rewards and if they don't get them they will amplify their behaviors to get them.

They need a plan to address this and dedicated, round-the-clock implementation of that plan by people intent on and capable of leading.

A few missing staff will not be enough to change an overriding tolerance of harsh or physical expression--among the staff or the residents. Leadership and everyone below them has to be dedicated to change--because frankly, in the break room, staff are most likely saying things like, "Yeah, they say they want change and we have extra staff and extra help, but as soon as the heat is off it will be back to business as usual."

Why? Because they have heard about change before...and things might actually have changed for a while, but after a while attention would turn to other things, money would go to other projects, blah, blah, blah... and the old way would come back.

Why do I know this? Because it's the same everywhere. "From now on..." is often a very short lived proposition.

There probably is a handful of believers on staff who are hungry for change, but they never had power--formal or informal--and, more than likely, they still don't. They will need to be supported. And protected--people who are willing to incite violence and take pictures are a pretty brazen bunch.

And the organization need to bring in help. They need experts in culture change and they need to increase their oversight drastically in ways that fit with the culture they wish to change to.

Culture change is an extraordinarily difficult process and the larger the organization involved, the harder it is to accomplish. And most organizations that undertake culture change have time to build the change they need. These institutions need it NOW. They may find that the only way to change the culture for so large a group of residents and staff is to break them into smaller groupings. That is what they are finding in eldercare.

Either way, few arrests won't be enough to make the difference they need.

And unless they enact sweeping changes now, more fights and more injuries are all they can really expect.

Easter Eggs and Activism

It's funny, but I have noticed many times that when I talk with folks about disability rights issues some people--parents of children who have disabilities-- can't get away from me fast enough. And the other day I was talking to my friend in Texas and she finds the same thing.

People don't actually stick their fingers in their ears and say, "La, la, la, I can't hear you," but sometimes I think they want to.

Some of them feel overwhelmed thinking about legislative issues, others fear being immersed in controversy and work, some say they will work on those issues when their children are older, and others say they just want to think about happier things...

One of my hopes in life is to tap this unrealized source of disability support. I keep e-lists for systems activists and a separate list for people who want me to keep it 'lite' for them and I do. I send less, explain more and ask for less, but it is really difficult.

I want to say to these people that the 'pardon me, I seem to be standing under your foot' advocacy method has never changed anything, for anyone, ever.

I want to tell them that the only way to justice is THROUGH their fear and that the dread is always worse than the job itself.

I want to tell them that taking a stand and facing down controversy is the path to peace.

I want to tell them that they will not be alone, there are lots of folks to stand with...

And most of all I want to tell them that we need them.

We need Easter Egg Hunts AND activism. Scrapbooking get-togethers AND visits to legislators, moms' nights out AND and an eye on the systems that affect us.

If we could engage everyone we could change our culture and create a world that would nurture everyone without overwhelming any of us.

So, who has some ideas for me?

Picture from here.

Friday, March 20, 2009

Say It Isn't So, Mr. President

Actually, I know it is so... Last night on Jay Leno the President of the United States bemoaned his poor bowling skill saying that "it was as if he were in Special Olympics or something."


And sensing there had been a gaffe his staff stated to somebody that the President really respects Special Olympics.

Sigh again...

See, here's the deal Mr. President,

I know it was off hand and unintentional. I know you nearly never make disparaging remarks about races, genders, creeds, sexual orientations or other differences. I know that you support people with disabilities in many, many ways. And you never talk about diversity without including those with disabilities.

And that's the point.

Ableism is so ingrained in our society that even our FRIENDS don't recognize it.

It's not that this was the worst gaffe in the world, and heaven knows it wasn't the worst we've ever heard--nor will it be the last, I'm sure.

It does, however, have more.... cachet... shall we say, coming from the president.

I am only speaking for myself when I say this, I am willing to forgive, but I do have something to ask:

Do something about this that matters.

There are a ton of opportunities this month alone to take a stand that could turn this negative moment into something that makes things better in our culture for people with disabilities.

Leverage this error into opportunity. Please.

Tomorrow is 3/21, World Down Syndrome Day, a day to celebrate Down syndrome, (also know as Trisomy 21.)

Too soon?

That's ok, there's plenty more:

3/31 is Spread the Word to End the Word day--a day to unite to ask for respectful language about disability--specifically to teach about the hurtful effect of "the R-word." It is sponsored by Special Olympics and there are cool t-shirts!

There are bills coming before congress soon with the power to build new possibility for those with disabilities like the Community Choice Act (scheduled for 3/24 last I heard), the CLASS Act... and others.

The president of the AUCD gave testimony before the HELP committee yesterday about the value of the University Centers of Excellence on Disability and the Leadership Education in Neurodevelopmental (and related) Disabilities programs that they run.

And that's just what I can come up in my bleary early morning state.

Make a statement, not an apology to a program--great though it is--make a statement that brings recognition and respect to people with disabilities.

Help the disability community by turning this stumbling block into a stepping stone (or better yet, a ramp!)

Picture from here.

Saturday, March 14, 2009

More about Institutions

The conversations going on around the troubles in institutions in Texas this week have interested me.

One of my best friends lives in Texas and has spent the better part of this week calling her legislators about this issue. One of the legislative staffers implied to her that the whole "fight club" occurence wasn't that serious because the victims had been evaluated and didn't appear injured.

My friend stopped for a moment and then said, "If people with disabilities were seen as equal this would not even be discussed. We would just be upset about the bad thing that had happened to our friend or our neighbor."

The staffer had to agree.

In another conversation I had this week someone pointed out that abuse can occur in smaller settings as well. And this, of course is true. But when people live in neighborhoods, go to schools and restaurants and miniature golf courses with everyone else, abuse can be noticed. Being seen and being known are protective.

One of my first blog-posts ever contrasted the media coverage and experiences of a man who died in a Missouri institution and a pastor who was shot in Texas the same week.

Dave Hingsburger has been running a series of posts about a woman he had seen while he was out shopping who was being abused by a caregiver. He gave her his phone number and told her to call the police. She did call the police. And him. Her Caregiver is being investigated and charged...

Had she lived in an institution, away from shops and neighbors, Dave would not have been there to notice.

Food for thought.

Friday, March 13, 2009

Timing is Everything: The Texas Institution Scandal and HR 1255

Over the last few months there has been lots and lots of exposure of problems in the institutions that "serve" people with disabilities in the state of Texas.

First came problems at the Denton School, an institution that houses several hundred children and adults with cognitive disabilities in .

Then after lots of investigation the oversight committee came to the conclusion that the large institutions that have proven more dangerous AND more expensive than smaller, community-based living situations do not need replacing, they need new names and a PR campaign...

Better lives through spin.

Then came the Iowa Turkey Farm Debacle--21 men from Texas who were found to be spending their nights in a run-down former factory and their days allegedly in indentured servitude to a turkey packing company...

And this week it turns out that the carers at Corpus Christi State School and possibly at others have allegedly been holding a "Fight Clubs" where they wake the residents at the schools in the night and stage fights between them. Allegedly the carers goad the residents, laugh at them and film them--there is investigation to whether there was gambling involved...

And this week an action alert came from NDSC that Rep. Barney Franks has introduced legisalation that will limit the ability of Protection and Advocacy agencies to bring class action suits against institutions where abuse, etc of people with disabilities has taken place....


Action Needed:

Contact your representative and ask him/her NOT to cosponsor or in any way support H.R. 1255. Call the capitol switchboard 202-224-3121 and ask for your Representative's office. (To find your Representatives go here.)

Talking points are as follows:
*This legislation is not needed and would harm individuals with disabilities.
*It would harm the efforts of parents and advocates to work for community services and support needed to live in the community.
*It would limit the efforts of lawyers to represent our constituency.

Picture from here.

Good News: The Weekend is Here

It is FINALLY true...the weekend is here AND there is a new Disability Blog Carnival up. And it looks like it has lots of good stuff.

Tomorrow morning pour yourself a cuppa and have yourself an interesting read--I will be joining you!

Tuesday, March 10, 2009

March is Brain Injury Awareness Month

Last winter I picked up my daughter after show choir practice and she told me that while they had been rehearsing a swing dance routine her partner had swung her into the air and she had landed with her head on his knees. She said that it had taken her a few minutes to figure out where she was and she still wasn't sure what had happened.

My heart jumped to my throat. I had picked her up in order to take her to her Irish Dance class. Thank goodness she told me. I realized that she should not be jumping around right after that experience.

I took her home. And to the doctor's the next morning. The doctor and then our school nurse gave me tons of literature on the new information about head injury...

Scary stuff.

She and I were told the exact opposite of what was believed about 'minor' head injuries when I was growing up--or even when I was in nursing school.

They handed me reams of the CDC's recommendations which included:
*DO NOT shake it off,
*DO NOT return to the game.
*If you have a headache DO NOT push your way through it--stop all activity (even reading or thinking) and
*DO NOT resume until you feel better. No gym, no dance, no nothing.

She tolerated only half days of school for more than a month. The school nurse and I worked out a deal: she would go to class (for a while she couldn't tolerate the bus either) when she got a headache she would go to the nurse's for a nap. Then she would return to class--after he second trip to the nurses I would pick her up.

In about 6 weeks she was getting through days without the headaches. She was miles behind on her work.

And there were mood changes.

I had never, ever told my daughter to do her homework... she had always been a motivated and responsible kid.

No more. She was angry, surly, miserable. Teachers were calling me. She was on academic probation for the first time ever.

We were terrified. She was a senior who had college plans... When her grandfather died in March I really did not know what was going to happen.

And none of this surprised her pediatrician.

Fortunately she had VERY supportive friends (who were not into bad habits which would have been very dangerous for her at that point!) She also had a very committed school who refused to let go of her.

It was a scary season.

In time it resolved--by the end of May she was much more like herself again. And now she is a freshman in college and doing fine.

This is all to say there is new information about head injury. Read it. Believe it. Follow it.

Who knows where my daughter would be now if she had gone to dance that night--or if we had not had access to up-to-date information.

I can't even think about it.

I got this video from Wheelie Catholic.

(The picture at the top is a group of Irish dancers ready to perform. The girl on the far left in the sparkly pink dress is my daughter. This picture is pretty old actually... sigh...)

Sunday, March 08, 2009

Spread the Word to End the Word: Clinically Speaking

When my daughter who has Down syndrome was born I had a visceral reaction to the use of the word "R*tard" as a playground insult (I wrote about that here.)

You can ask my kids, I have always had an extremely low tolerance for namecalling of any kind, but THAT WORD (as my friends who are self-advocates call it) with its ability to degrade its intended victim and a whole class of people with disabilities--usually without the user even knowing it--infuriates me.

And nowadays I think the phrase needs to be re-thought and replaced in every context.

I did not always feel this way. While I knew I could not tolerate the use of THAT WORD as an insult, I was not uncomfortable with its use as clinical terminology, or in 'official' verbage. Until, through my Partners in Policymaking course, I made friends with several self-advocates.

One day over coffee one of my friends told me this story:

Seems she rode her town's city bus to work each morning and when she got on the bus the driver would make a loud remark about her going to "The R*tard Room." After months of this one of the men who also got off at her stop told the driver to stop saying it. The driver replied that it wasn't an insult, it was on the sign over the door. My friend--who doesn't read--had had no idea that that's what the sign said. From then on she cried when she had to walk under that sign and eventually she quit that job.

She couldn't believe her job gave her community permission to insult her.

Clinical Terminology:

It is time for clinicians to change their terminology. I realize teenagers need to feel they are flexing their muscles and need to say shocking things to feel heard, but clinicians need to move on!

Parents and self-advocates across the country are petitioning their governments to update terminology and join campaigns to end the r-word.

Clinicians (with some notable exceptions), on the other hand, are dragging their heels and harrumphing and wondering aloud whether such changes are necessary or wise...

Change already.


Because the people we exist to SERVE have asked us to. They assure us that those words hurt them.

That is enough of a reason.

We medical professionals are in danger at all times of abusing the status and power that our expertise gives us--here is an opportunity to remember that it was NEVER about us!

Scary Next Steps??

So, in the interest of being responsive on language issues I recently asked a few of my self-advocate friends which terms they preferred. I suggested Intellectual Disability, Cognitive Disability or Developmental Disability.

One of my friends thought 'Intellectual Disability' was code for 'stupid.' But everyone pretty much thought all of the terms were neutral. And then one of my friends dropped a bombshell on me...

"Why do you need any label at all?" she asked.

That question has been ringing in my head ever since... As a nurse NO LABELS makes me very nervous. How would I categorize? How would I treat? How would I evaluate? Where would I begin? How would I.... the questions go on and on....

Yeah, I would have to base decisions on the individual. I would have to evaluate based on the actual--to wait and see how the person actually presents. I would have to base everything on relationship...

And dang if all those don't sound like GOOD things...


So, if we make this change will further growth someday be necessary?


That's what happens in living organisms, isn't it?

Wednesday, March 04, 2009

Non Verbal Learning Disorder and Us

It was interesting to read in the new blog of Stephen Drake (of Not Dead Yet fame)about the negative experience he has had with the diagnosis and literature of NLD.

My son started on the path toward his diagnosis in pre-school. I was having a really hard time teaching him to zip his coat and asked my daughter's OT for suggestions. She watched my son struggle and gave me a bunch of suggestions and some literature about sensory processing to read. The info was a lot of help and once he was no longer facing the northern NY winters with his coat flapping I was happy.

When he went to school he demonstrated a quirky mix of really high level abilities in some areas and struggles and dysfluencies in other areas. Sometimes teachers loved him and other times he drove them to distraction. They did test him again at some point and found that he had an average IQ (turns out that was a pretty meaningless statement because the gap in his scores is so wide, but I didn't realize that was so significant at the time.)

In 4th grade formal evaluations took place. The words 'Non-Verbal Learning Disorder' were spoken for the first time. We were told a lot of test results and I was given a spiral notebook of information and strategies. When I got home and read through that notebook I was devastated. It was chock full of 'will nevers' and 'can'ts.' After stewing in it for several hours I called our developmental pediatrician (who was also a personal friend) at home. The literature made it sound like my son's prognosis held less hope than we expected for my daughter who has Down syndrome. I don't really cry much, but I was crying then.

Where the more familiar learning disabilities were characterized with (among other things) higher scores on the performance side of the IQ score and lower scores on the verbal side, in NLD the verbal scores are higher and performance scores are lower. There are difficulties with large and fine motor skills, reasoning, social fluency.

After my conversation with my friend that night I fluffed up my pink feathers and gave myself a talking to: this was not our first brush with disability, we already knew things about my son that exceeded the "will never" list that we had been given for example:
-He has always had a pretty funny sense of humor,
-We had already seen him overcome learning obstacles and then excel with the new info.
-We had already seen much progress with things like social fluency.
-We already had evidence that he drew connections between pieces of information that he had learned (though his way of expressing this often made people shake their heads!)
-My own verbal vs. performance abilities probably have a similar configuration and I am making it...

And most of all:

-He was-and is-a great kid!

We decided to use the suggestions we deemed helpful and toss out the rest of the book (I literally ripped the book apart--I did not want to take the chance that he would ever find and read it!) We decided to trust him and ourselves.

Since that time I have found a couple of books I do like about NLD: Bridging the Gap: Raising a Child with Nonverbal Learning Disorder by Rondalynn Varney Whitney and Raising NLD Superstars by Marcia Brown Rubenstein are two.

We arranged for a 504 plan for my son which was really never implemented so in 7th grade he was given an IEP. His modifications include double time for certain activities, word processing instead of handwriting (handwriting is and has always been impossible--his legibility is fine, but the motor-planning takes YEARS!), separating input from output (he can't write while listening, but he has a long working memory so he can record his notes later), and help organizing.

With these supports in place he succeeds. He does well in school, does well on standardized tests, acts in school plays, reads fantasy novels, plays video games and avoids dishes and bedmaking like every other highschool kid.

PSAT scores are back with very positive results so now we are working on learning what he will need to know how to do (like advocate!) to succeed in college...

Can he? We certainly believe so! We do not ever accept "can't" without proof anymore... actually, I only accept "can't right now" these days (and that only after a fight!)

And the only expert I believe about my son is him.

PS: Are migraines common among people with NLD, does anyone know? Everyone I know with the diagnosis has them...

See my other posts about NVLD here.

Sunday, March 01, 2009

Book Review: THAT Went Well by Terrell Harris Dougan

We enter the life of author Terrell Dougan and her sister, Irene, of the book THAT Went Well through an exciting moment in the meat department of the grocery store where Terrell ducks the chicken her sister chucks at her for inisiting on buying nutritious food... We blink a little and Terrell sits us down and 'splains it all to us, in the style of that one friend we have who always has a funny story to tell.

The author and her sister were born in the 1940s and they and their family were among the pioneers who laid the groundwork for the advances in education, community living and disability-respect that families and people with disabilities enjoy today (not that we are done evolving!) We learn about Irene's diagnosis and the common 'treatment' of the day for children with cognitive disabilities which was institutionalization, the advent of special education schooling in Utah (spearheaded by their father!)and the inception of community living options--from grouphomes (legislation and grantwriting done by the author herself) to what she calls a SAM--a self-administered model.

We hear the story of a family of loving people with successful, interesting lives who willingly walk the tumultuous path of supporting Irene with committment, warmth and humor. They take on the systems, the prejudices, the 'well-meaning' and the ups and downs of supporting someone with a disability who doesn't conform to the systems while spending a fair amount of time caring for aging parents and small children.

We hear stories of Irene, her family, her love of food, her relationships, her frustrations and behavioral challenges, her endearing quirks, her successes, the systems, helpful people, annoying people, people in-between and more. Some of the stories are hilarious and, as the mom a teen with a disability, some are heartwrenching.

This is the story of what it's like to be the sister of someone with a developmental disability. It's a strong dose of reality with an equal measure of hilarity and twinkling eyes--you feel the frustrations AND the love. And throughout it all is an unwavering belief in the community and most of all in her sister.

I enjoyed the book. I liked the firsthand view of the progress that has been made for people with disabilities in recent decades. And I LOVED Irene and Terrell's relationship--and their relationship with their community. There were chapters that absolutely thrilled me (like when the neighborhood firemen--who Irene visited often--came to her lemonade stand and made her a hit in her neighborhood.) And there were parts of the book that I admit scared me (like the repeated failures of systems to meet Irene's needs--and the amount of perpetual engagement success required...)

As a parent, there was much encouragement and there were many lessons in this book. I have asked my teenagers to read it as well. I don't know what their reaction as siblings will be, but I really want to know--I will keep you posted.

The author's website has a blog--I will be adding it to my blogroll.