Friday, October 29, 2010

Your Future Awaits


Eighteen years ago today, your birth mother brought you into this world. Six years ago, your family brought you to me.

Those six years have not always been easy, but I believe that along the way you have learned what a loving family is like. You have been given wings and been allowed to stretch them. You have experimented with life in a safe environment, and are forming your path for the future.

The first twelve years of your life were lived in a way that shouldn't have been. But you amaze me with your resilience and your willingness to move forward when others in the same situation would have stood still.

Your future is waiting, and I pray you will remember the lessons of these last six years. Never lose your compassionate heart - never compromise the things in which you believe - try not to choose the wrong path that others in your past chose for you.

Stay strong - believe in yourself - and always, always keep love in your heart.

Happy Birthday, Corey!
Corey's Mom

Thursday, October 28, 2010

Twenty Years of Joy and More To Come!


Twenty years ago today, at 11:40 PM, my life changed. A dream that began growing in my heart at a young age took flight, and I gave birth to the most incredible son in the world.

He and I have been through a lot together. From the day of his birth when his father was being arrested for behaviors not befitting a new parent – to the difficult times while I learned to be a single parent – to having to share his mother with four adopted siblings, some of whom caused and continue to cause great stress in both his life and mine – to the many joys we have shared – he has stood strong.

He is a good man, in the truest sense of the word good. He is caring and loving and committed. He fights for his sibling’s rights all the while keeping an eye to the future and the rights of all that are oppressed.

He wants to make the world a better place, and I know beyond any doubt that he will. The good he will do in the future is already written on his heart, and I believe that the positive difference he makes will be felt by many.

He is my heart, my love, my son. I am so proud of you, my dear Chip, proud of all you have accomplished and of all you are yet to accomplish. No mother could ask for more than you have given me.

I love you – Happy Birthday!
Chip's Mom

Wednesday, October 27, 2010

Special Exposure Wednesday

After lunch last Saturday, the kids and I decided to look for Halloween masks that everyone could wear while handing out candy. My kids are too old for trick-or-treating, but they still love the costumes.

We searched long and hard, but finally the PERFECT solution for my three sons was found. In all the history of Halloween, NEVER has there been a set of three masks so perfectly suited for my three 'stooges'!!



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, October 26, 2010

Worth Watching

I'm having a YouTube sort of day...so today I decided to share two of my favorite videos with you.

The first video was made by Joey Mazzariono, head writer at Sesame Street for his adopted daughter Segi from Ethiopia.

The little girl seemed quite unhappy with her hair when she compared it to the sunshine blonde of her favorite doll, Barbie.

"She was going through this phase where she really wanted like the long, blonde hair. ... She would look at Barbies and really want the hair, "said Mazzariono in an interview to an entertainment daily.

The video shows the muppet wearing different hairstyles like braids and cornrows, singing about how she loves her hair and does not need to go to a beauty salon. The whole idea was to educate little girls to like themselves as they are, according to Mazzariono. A lot of Afro-American girls can now identify themselves with Segi.



The second video features Johnny Knoxville, the lead actor in JackAss 3D. Now, who would have thought I would ever like someone like that, especially in a movie like that!

This clip shares footage of Mr. Knoxville's movie, The Ringer, and also features Eddie Barbanell. Eddie Barbanell has Down Syndrome, and in this video, he and Mr. Knoxville talk about the use of the R-Word. Just for the record, the movie, The Ringer, is endorsed by the Special Olympics. Don't be like me and make an assumption about the movie from just reading a synopsis of the plot. The movie is a jewel about inclusion.

Monday, October 25, 2010

Amsterdam International

A fellow writer, Dana Nieder, has taken the essay called Welcome To Holland and added the dose of reality all parents of children with special needs need. She has given me permission to repost her essay, Amsterdam International, here.

Dana is an amazing writer and an amazing parent. After reading this repost, please visit her blog regularly. You will NOT be disappointed.

AMSTERDAM INTERNATIONAL

To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010

Friday, October 22, 2010

Oodles of Ologists


In the last couple of weeks, we've been to a neurologist, a rheumatologist, a nephrologist, and an urologist. I'm really tired of ologists...

But a lot of good has come out of all those visits.

Ashley's seizures are slightly more controlled. She started on a new medication and had an old one removed. The new med seems to be doing a good job, and she's not even up to full dose on it yet. In addition to fewer seizures, she also seems to feel much better which makes her happier. Score one for the neurologist.

Ronnie saw a new nephrologist and reports are good. His kidney disease is stable - not better but not worse either. The doctor thought Ronnie looked very healthy and is encouraged that we can keep a kidney transplant at bay for quite a while longer. Score one for the nephrologist.

Ronnie also saw his urologist. The bladder surgery he had last summer has improved his overall health, and is no longer a contributing factor to his kidney disease. Score one for the urologist.

My rheumatologist has tweaked my lupus and rheumatoid arthitis medications a bit, and I can already see a little positive change. Score one for the rheumatologist.

Okay, so maybe ologists aren't so bad after all!!

Thursday, October 21, 2010

Made My Day!

YES, YES, YES, YES!! There is hope....

State-run institutions will soon be a relic of the past in Georgia under a landmark settlement reached Tuesday that could serve as a model for similar efforts in other states, Justice Department officials said.



(Built in 1842, Central State Hospital was Georgia's first psychiatric hospital, chartered by the legislature in 1837.)

Wednesday, October 20, 2010

Special Exposure Wednesday

My beautiful Ashley....



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, October 19, 2010

Where Am I?


I used to travel a lot for work and I always had recurring nightmares about being in a strange city, walking around, and getting horribly lost. Those nightmares would keep me from exploring some really fantastic places, and now I regret that. If only IPhones and IPads and such had been around then...

Google has announced two new apps, specifically targeted for people who are blind and who must find their way around a city. Think GPS for the walking crowd...

The apps are called WalkyTalky and Intersection Explorer.

WalkyTalky reads out not only the directions as you walk, but also the intersecting streets that you pass by. Not only will it help with your bearings, but it'll give you a greater understanding of the city—the next time someone mentions meeting on Maple Street, for example, you may well remember passing it previously.

Intersection Explorer isn't quite as useful, but I imagine it would help steel my nerves about my upcoming journey before even leaving the house. You can virtually walk through Google Maps, with the app reading out the directions of the proposed journey ahead.

It's great that someone was thinking about the Blind when these apps were developed, but honestly, I think everyone, disabled or not, could benefit.

Now let me go talk to the only two people in my house who have an Idevice - my two teenage sons - and see if they can download the apps!

Monday, October 18, 2010

Welcome Back


I'm a strong believer in open adoptions. Unfortunately with the children I have adopted from the foster care system, maintaining a relationship with birth parents doesn't usually happen. The only birth parent that I have been able to have somewhat of a relationship with is Ashley's birth mother.

Several years after bringing Ashley home, I was really driven to see if I could locate her birthmother. I'm not sure exactly why - maybe because I was so proud of the beautiful child Ashley was that I wanted to let her birth mother share in that joy.

With the help of an adoption document that wasn't fully redacted, and with Detective Internet, I found the person I believed to be Ashley's birth mother. I wrote her a letter and included a picture of Ashley. I didn't pressure her to contact me back, but I hoped she would.

Two years passed before I received an email from her. Then there were a few phone calls and then we became Facebook friends. None of this is to imply we were close or even had much of a relationship, but it was a tentative connection that was important to me.

I learned that Ashley had two younger siblings, children who like Ashley, were adopted by a family headed to Delaware. I was disappointed that Social Services had not contacted me about the siblings, but such was the fate that was determined.

Then Ashley's birth mother dropped out of touch again. Another couple of years passed, and just today, she showed up again on Facebook. We've commented to each other, and I hope we can continue to do so.

I learned that she is engaged and has a 9 month old son. She seems very happy, and I sincerely hope her life is headed in the direction she wants it to head in.

And I sincerely hope that we can meet one day. I would still like for her to see Ashley, and most importantly, I would like to thank her for the gift she gave me almost 14 years ago - the most wonderful gift in the world, my darling daughter.

Friday, October 15, 2010

October is Spina Bifida Awareness Month


In honor of my wonderful new son, Ronnie, I am pleased to share the following spina bifida awareness information:

Did you know that birth defects occur in 7 out of every 10,000 live births in the U.S.? And Spina Bifida is the most common permanently disabling birth defect? In honor of October being Spina Bifida Awareness Month, the Spina Bifida Association is asking folks to take a few minutes today and get involved in the awareness month by educating loved ones.

The first question many have: What exactly is Spina Bifida? In short, Spina Bifida happens when the spinal column doesn't close completely.

And how many births each day are affected? Well, it's hard to believe, but eight births each day are affected by Spina Bifida or a similar birth defect of the brain and spine. If you think about it, there are currently over 65 million women in the U.S. who could become pregnant and each one of these ladies is at risk of having a baby born with Spina Bifida. So because Spina Bifida occurs during the first month of pregnancy (that's even before most women know they're pregnant!) it is that much more important to take proper precautions to help try to prevent it now.

Okay. So what type of precautions can help in prevention, you may wonder?

Although at this time there is no known cause of Spina Bifida, research has shown that if a woman takes 400 mcg of folic acid every day and before she becomes pregnant, she reduces her risk of having a baby with Spina Bifida or another neural tube defect by as much as 70%! That fact is reason enough to encourage women (and men) to get out there this month and spread awareness.

Families with a history of Spina Bifida should take extra dosages of folic acid prior to pregnancy. Hear one mom's message:



And in honor of October's Spina Bifida Awareness Month, the Spina Bifida Association will also be launching some great new online resources, including:

SB University (SBU) (www.sbuniversity.org), a new online educational program featuring taped sessions from the 2010 National Conference as well as monthly live seminars conducted by Spina Bifida medical professionals from around the country. During Awareness Month, SBU will debut new sessions each Monday.

SBTween2Teen (www.sbtween2teen.org) a new Web site for tweens and teens with Spina Bifida. Complete with blogs, videos, real stories, fact sheets, and an Ask the Expert feature, the interactive site helps tweens and teens navigate the difficult road to adulthood. There is even a social networking component run through Facebook, allowing tweens and teens to interact with one another and build peer-to-peer relationships!

Preparations, a new transition-focused Web site launching in late October allowing parents, caregivers, and clinicians to answer specific questions with regard to a child's developmental milestones. This tool can even help young adults remedy some transitional challenges.

For even more information, tips and resource, you may visit: www.spinabifidaassociation.org

And be sure to join the Spina Bifida Association on Facebook: www.facebook.com/spina.bifida.learn

Thursday, October 14, 2010

Not Again....


There’s not much I don’t love about being an adult, being a parent to many kids, being what I suppose ‘grown up’ means.

I have no problem with all the medical interventions my children need. I can change a G-tube in under a minute. I know how to give injections. I know many details about at least 25 different medications – none of which are my own.

I don’t mind doling out needed discipline. I don’t mind helping a child learn a skill – even if that helping goes on and on. I don’t mind watching baseball when I would rather be watching Dancing With The Stars.

I don’t mind paying the bills each month or growing my own vegetables or cleaning the bathroom – a lot because I have three boys in the family.

I love to cook and I always present meals in a pleasing manner on a plate. I can make a mean chocolate chip cookie – everyone, including my coworkers, loves my brownies, and my apple pie recipe won first place at our State Fair one year.

I have a few problems killing bugs, but as long as I have enough bug spray in which to drown them, I am ok. I can change a plug on the vacuum cleaner cord, and caulk a bathtub. I get the oil changed in my vehicle every 3000 miles, and I can sew curtains and clothes.

I decorate our home for every season, and I grow enough herbs to last a year and to share with others. I know how to get almost any stain out of clothing, and I know that bleach is one of a mother’s best friends.

But there is one ‘grown up’ task I abhor. It comes around every single week no matter how much I try to avoid it, and it consumes way too much of my time. GROCERY SHOPPING.

I don’t mind planning meals or listing the things I need to purchase. It’s the actual act of going to the store, walking the aisles, picking things from the shelves and putting them in my cart, taking them out of the cart and putting them on the conveyor belt, watching the cashier scan my items, being asked if I have any coupons, watching the bagger put things in bags, taking them to my car, loading them in my car, taking them out of the car and stacking them on the counter, putting everything away, and THEN STARTING ALL OVER AGAIN IN JUST 7 SHORT DAYS.

With six people in the family, grocery shopping and the resultant tasks can easily take 2 hours. That’s two hours I could have been reading – or playing with Ashley – or stroking the cat – or watching the fish swim in their tank – or ironing clothes – or going out to eat – or most importantly, sleeping.

Two hours a week – 104 hours a year – and if one lives to, let’s say 85 years old, over 6000 hours in a lifetime.

I know we have to eat, but I am ready for the Jetson’s approach to meals – touch a button and up pops your food.

If anyone would like to psychoanalyze me to figure out why I dislike grocery shopping so much, please feel free. Maybe some answers would help me…

Wednesday, October 13, 2010

Special Exposure Wednesday

Ronnie has learned how to take pictures with his new IPhone. He took this one of himself using an app called Hipstamatic. It is an app that can apply various effects to photos. So, is it Ronnie sticking his tongue out or is it Hipstamatic??



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, October 12, 2010

Showed You!


The instructional assistant for a student labeled (incorrectly) as 'severe and profound' cut her finger last Wednesday. The student signed 'help' and 'nurse' and then led the instructional assistant by the hand to the school clinic.

No big deal, right?

Wrong - it was a very big deal.

That student, my Ashley, who has been told over and over again that her communication is very limited, who has been told by an orientation and mobility instructor that her only traveling option was to use a sighted guide and not a cane, and who has been described as living in her own little world, oblivious to all that is around her, did something very important.

Of course, I have known about her ability to care, her compassion, her reasoning skills, and her ability to travel as a blind child for too many years to count.

Maybe now everyone will believe me when I tell them of Ashley's abilities and potential.

Monday, October 11, 2010

Brotherly Love

Sunday was pumpkin day for my punkins! It was also a day of brotherly love - big brothers helping a younger brother and sister!









Friday, October 8, 2010

Turning Wrong Into Right


This week has been an historic week for people with disabilities. Today, President Obama will sign into law the Twenty First Century Communications and Video Accessibility Act, and earlier this week, he signed the Rosa’s Law bill.

The Twenty First Century Communications and Video Accessibility Act will ensure that Web sites and makers of consumer electronics consider the vision- and hearing-impaired, who have been left behind as more communications tools move to the Web.

Here is a link to a Washington Post article that provides more details.

Also signed this week by the President was Rosa’s Law. Rosa's Law changes references in many Federal statutes that currently refer to "mental retardation" to refer, instead, to "intellectual disability".

Senator Barbara Mikulski said this when introducing the bill to the Senate with bipartisan support last November: “This bill is driven by a passion for social justice and a compassion for the human condition. We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me in a step further. Help sponsor the legislation that I offer on a bipartisan basis. Help me pass the law and know that each and every one of us makes a difference. When we work together, we can make change.”

I’m sure that not all Americans will agree with these two laws, and may even question their importance when war and famine and other horrible situations exist. But to people with disabilities and those that love them, this is wrong being made right.

A big thank you to everyone who worked to see these bills become law.

Thursday, October 7, 2010

Monica and David

October is Down Syndrome Awareness Month. In honor of that, HBO will be airing a documentary titled, "Monica and David."

The documentary chronicles the first year of married life for a couple, both of whom are diagnosed with Down Syndrome. Here is a press release that was posted on the Hope House website about the documentary. And here is the website devoted to the show.

My favorite line in the press release, and the thing that will have me tuning in as well as recording the show is one made by Monica's mother, “As parents, we want people to look upon our children with special needs like anyone else. We want them to be treated with respect and with dignity… And yet, because we want to protect them so much, we are typically the first ones who treat them poorly by subconsciously denying them their rights to have a normal life.”



The show will debut on October 14th at 8:00 PM. Write it on your calendars - set your Tivos - and then let's share our comments!

Wednesday, October 6, 2010

Special Exposure Wednesday

Baby's first steps!!! When Ronnie joined our family almost 7 months ago, he came with a walker and a wheelchair. He didn't have the strength in his legs to stand though.

First his physical therapist tried traditional AFOs (ankle foot orthotics), but they still did not provide enough support for his hips and legs.

The solution was to order full braces, which we picked up last week. And tonight at therapy, he took his first steps!!

The braces and the walker still need a few adjustments, but I predict my handsome boy will be dancing the night away at the school dances this year!



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, October 5, 2010

Seizures - 1 Medication - 0


In the last 10 days, Ashley has had an MRI under anesthesia to check for tumors on her brain stem and spine, and she had her 6 month checkup with the neurologist. She and I have both been very busy trying to figure out why we are seeing an increase in the number of seizures she has each day.

Ashley is on four different seizure meds - Depakene, Trileptal, Keppra and Topamax. Yet she was still having 3-4 seizures a day. About a month ago those numbers went up to 6-8.

Her seizures are not usually bad - just lasting 45-60 seconds each. She seems to be able to tell when one is starting, and she will get herself to a safe position, not allowing herself to fall once the seizure gets underway. Afterwards, rarely is she sleepy. In fact, she is often in a much better mood - almost like the seizure cleared some of the fogginess from her brain.

But, she has had life=threatening seizures in the past, and with each of the not-too-severe ones she has, I think back to the times when things were really bad. So, I keep a close eye on her seizures, a close check on her meds, and schedule frequent MRIs.

The good news today is that the most recent MRI did not reveal any tumors on her spine or brain stem. She still has three on her brain, but they are not growing and don't need to be removed at present.

The news from the neurologist wasn't quite as good. Since the four current medications are allowing the seizures to become more frequent, he is adding a fifth one. It is a new medication called Vimpat. I need to do some research on it, but he listed one of the side effects as sleepiness. I'm not wild about that. I'm also not wild about her being on 5 medications...

So that's the Ashley update for now. If anyone has any experience with Vimpat, I would love to hear it.

Sunday, October 3, 2010

What Do You Do?

I've got two questions for you today. Neither of these issues are huge, just things that occupy my mind from time to time - like this past weekend!

First, how do you teach your children with special needs manners? I find myself having to prompt for a 'please' and 'thank you' from some of my children all the time. Ashley has gotten both of those things down, but not my other children.



I want their please and thank you to be spontaneous. I don't want to have to prompt.

And, how about other things? How do you teach your child with significant special needs to chew with their mouth closed, for instance - or teach your son that it is polite to hold the door for a woman, if indeed he can hold the door - or to say 'excuse me' after a burp.

Again, as with the please and thank you, I don't want to always have to prompt for good manners.

So, if anyone has some tips or things that have worked in your family, please share!

Secondly, if you have a child or children who use(s) lots of adaptive equipment - wheelchairs, walkers, braces, canes, standers, etc. - how do you keep your home from looking like an equipment showroom? Does it bother you to have all the equipment taking up lots of space in your home?

This doesn't bother me greatly - I'm not going to lose sleep over it because it means my children have the equipment they need. But just every so often, I would like my home to look a little less crowded with aluminum and plastic. I hope that doesn't make me a bad mother, maybe just an obsessive/compulsive cleaner! Or maybe, I just need to stop watching HGTV so much.

Any ideas on either of these two subjects would be greatly appreciated!

Friday, October 1, 2010

Not My Idea of Fun

In 2008, I wrote a blog post about Weston State Hospital in West Virginia, the hospital, though long closed, was bought and the owners were planning to use it for events such as “Psycho Path” dirt bike races, "Hospital of Horrors" haunting tours in October, and a "Nightmare Before Christmas" tour. They even renamed the hospital the Trans-Allegheny Lunatic Asylum.

Fast forward to 2010, and something very similar has happened.

Pennsylvania’s historic Pennhurst Center, once the focus of landmark litigation that sparked nationwide changes in treatment for people with intellectual disabilities, opened last night as a Halloween-themed haunted house attraction over the protests of disability rights advocates.

Advocates had unsuccessfully sought an injunction to prevent the opening of the “Pennhurst Asylum” show on the grounds of the property, once known as Eastern State Institution for the Feeble-Minded and Epileptic.

Even before the injunction was denied on Friday afternoon, advocates called for a boycott of the attraction, which references historic abuse and neglect of the institution’s patients and features a “registration nurse” who tells visitors what the asylum’s “doctor” has planned for them. Here is a video of what is in store for visitors:



The crumbling facility was closed in 1987 in the wake of a federal lawsuit alleging years of abuse and neglect. The suit, which spawned years of appeals and three U.S. Supreme Court rulings, alleged that residents had been beaten by nurses, strapped to beds, left naked or alone and drugged into stupors. At the time, the closure of the 600-acre facility was hailed as a civil rights victory.

Pennhurst property owner Richard Chakejian said said he and his crew are “just trying to pull off a fun, orderly event and we’re excited about that.”

Sorry, but none of this sounds like fun to me...