Hackles

I know that I have written several times in the past about how annoyed I get when people stare at my children. I’m not going to do that today, and in fact, am trying to wrap my mind around a new thought pattern for the stares based on this post by Diary of a Mom. But, I am going to write about the comments that are sometimes made about my children – mostly because I find them incredibly insensitive and rude.

I don’t mind comments or questions from children. In fact, I welcome the opportunity to help them see that my children are not so different from other children. It’s the comments of adults that often make the hair stand up on the back of my neck.

The comments run the gamut from:
• What’s wrong with her?
• Why won’t she just walk?
• Why does he make those funny noises?
• His legs look strange.
• Her hair would look so much better if you let it grow out.
• How did she mess up her eye?
To:
• Why in the world would you want to adopt a kid like that?
• Do you run a group home?
• What’s he going to do when you aren’t around anymore?
• She doesn’t have much of a future, does she?
And my all time favorite:
• She goes to a real school?

How would these people like it if I asked rude questions about their family member? I bet their hackles would rise even more than mine do. What I don’t know is how to react to the questions and comments. Should I choose the high road as described by Diary of a Mom, or are comments even less acceptable than the stares.

What do you think? And what do you do when someone makes a rude or insensitive comment about your child?

Shame on Dr. Phil

Most of my readers already know how I feel about pity. Not much angers me more than people who feel sorry for my children, or anyone for that matter, with disabilities. However, there is one aspect of pity that does anger me more - when people pity me or other parents BECAUSE we have children with disabilities. And Dr. Phil McGraw of the Dr. Phil show is someone who does that frequently.

Several years back, Dr. Phil did a show about a family with three children who are deafblind. The entire focus of the show was about how difficult the girls' lives were and what saints the parents were. Now Dr. Phil has gone and done it again.

On April 13th of this year, his show titled "Deadly Consequences' aired. That particular show presented the idea that parents should be able to euthanize their children who have intellectual disabilities. Here's a short synopsis of the show:

The show centered on Annette Corriveau, who has two adult children who have a progressive genetic condition called Sanfilippo syndrome. The show opened with a brief introduction of Corriveau, followed by an interview of her conducted by one of the producers. Over the course of the opening which took more than half of the segment, viewers were shown and/or told the following:

•Video of Corriveau's two children from typical childhood to recent pictures as adults with disabilities;
•Depiction of intellectual and physical disabilities developed as a result of the condition;
•Discussion of the changes in their appearance as they got older, implying that their “not normal” appearance is tragic;
•The fact that Corriveau institutionalized both children when they were young.
•Video of one of Corriveau’s visits: she reported visiting them every two months, but doesn't touch them, because they don't react to her.

The second guest in the segment was attorney Geoffrey Fieger, who defended Jack Kevorkian, the assisted suicide and euthanasia advocate who claimed to have assisted the deaths of about 130 people. According to the New England Journal of Medicine, over two-thirds of Kevorkian’s victims were people with disabilities who were not terminally ill. During this recent segment, Fieger argued that a health care guardian’s right to consent to or refuse medical treatment should be extended to include active euthanasia such as a lethal injection. He asserted that what Corriveau wants is perfectly reasonable and merciful and that existing law against this is stupid.

On May29th, thirty disability rights organizations, led by Not Dead Yet, issued a letter to Dr. Phil criticizing the April 13th segment. A portion of that letter is shown below:

"This program was a horrific assault on people with intellectual and developmental disabilities. By conveying social acceptance and approval of active euthanasia of individuals with disabilities by their family members, the segment threatens their very lives. People with disabilities are reportedly twice as likely to be abused as their nondisabled peers. It is grossly irresponsible that the Dr. Phil Show aired a segment that further promotes any form of violence against a group already subject to discrimination, ridicule and gross devaluation. The idea that people with disabilities are “better off dead” is deeply offensive and cannot be tolerated."


The organizations supporting the letter have called for a public apology for the “Deadly Consequences” segment and for equal time to to be given to individuals with intellectual disabilities and organizations advocating their equal rights.

What are your thoughts? Is that enough? Do you think Dr. Phil will respond? I'm thinking not...

The Mutilation Continues

Back in 2007, I wrote about Ashley a young girl from Seattle who had decisions made for her that forever altered the course of her life. The pictures to the right, courtesy of The Guardian, show Ashley in 2007 and again in 2011.

A Tale of Two Ashleys

A Tale of Two Ashleys, Continued

A Year After the Mutilation

As I wrote back then, "She had no say in whether or not she wanted her uterus removed, her breast buds and milk glands removed and massive doses of hormones injected into her. She had no say as to whether she wanted to remain a child for the rest of her life or wanted to grow and mature like every other young girl. As her siblings grow, she will forever remain a young child. She will watch her parents grow old and will perhaps wonder why everyone around her changes but she does not. All of these decisions were made for her by her parents, parents who decided these things were in her best interest."

The debates were many and heated, and they live on today. They live on because parents are quietly also doing the same thing to their children. Both boys and girls. The parents hope no one finds out, but The Guardian in the UK did, and their articles are listed below. I urge you all to read them and express your opinions on this matter.

Rise of The Ashley Treatment Continues

Ashley Treatment on the Rise Amid Concerns from Disability Rights Groups

Entertaining????!!!

Why are we failing as a society, a society in which a child in special education is set on fire by regular education students at his/her school?

New Port Richey Student Set On Fire

How can a middle school student, and 11 year old student, ever think that is ok? What are we missing? What in society even plants such an idea into a child's brain?

The article states that the two students who set the other child on fire have disciplary records at the school. What has been done in the past? How were those displinary issues handled? Where along the way did the two students think it would be 'entertaining' to set another child on fire, a child who may not have seen the danger in the situation?

These are all rhetorical questions, but this whole thing just makes me ill...

The Don't-Care-Van

And I thought school transportation was bad.....

This past Saturday I hosted a get-together of professionals who are interested in advocating for people with disabilities, college graduate students, mentor families, and self-advocates. One of the self-advocates was a woman, Barbara, who appeared to be around 30 years old. She used a hi-tech power wheelchair and a communication board. She typed out what she wanted to say by touching a straw held in her mouth to the keyboard of the communication device. She moved her chair independently though slowly since she had only the slightest movement in one of her hands. She was funny and beautiful and had a wicked sense of humor.

She traveled to my house using a van service in our area called Care-Van. It is operated by our local bus transportation company, and its only purpose is to transport people with disabilities.

Over the years I have heard many nightmare stories about the unreliable service provided by Care-Van, and I had the chance to experience that first hand with Barbara. First, they had a tough time, so they said, finding my house to drop Barbara off. My house is probably one of the easiest houses to find in my city - truly. It is one turn off a main road, and it is easy to figure out which house in the neighborhood is mine because of the prominent wheelchair ramp. But Care-Van claimed they had a tough time finding it. I wonder if they have heard of GPS devices...

Care-Van finally did find my house, and Barbara joined in the fun. When she was dropped off, Barbara had already made arrangements to be picked up three hours later. Sounds simple, right? Apparently not.

Care-Van showed up - same driver - same wheelchair van. Barbara had already started down our ramp heading to the van when the driver appeared to tell her that he couldn't take her because his van was already full. He said he would be back in about an hour....

So Barbara had to work very hard to turn her chair around, get back in the house, and wait another hour. I personally enjoyed the extra time with Barbara, but I could tell she was anxious to get home. She explained that she had booked these travel arrangements well in advance, but that she wasn't surprised because this always happened. She couldn't begin to count the number of times she had been late for work because of Care-Van. And I have heard that from many others.

So, you've got someone, many someones, with disabilities who have a tough time finding employment in the first place, and then because a transportation company can't seem to understand scheduling and travel, the person is at risk of losing their job. And even worse than that to me is that someone like Barbara, who works very hard to have control over things in her life, things which are extremely difficult at best, and she is at the mercy of a transportation provider.

I'll say the same thing I've said about school transportation services - I know it must be a complicated task to schedule the transportation, BUT THIS IS THEIR JOB. It's what they are in business to do. And right now, they are doing a really crappy job....

Really George?

Here we go again - yet another movie and movie star who feels it necessary to make a joke at the expense of people with intellectual disabilities. Yep, it's the 'R' word AGAIN, this time in an Oscar nominated movie.

The movie is The Descendents,and the movie star is George Clooney. I know he has enough clout in the industry to demand a change in the script. Yet he didn't, so in my book that means he agreed with using the R word as a punch line.

Here is the exact dialogue exchange as taken from the book on which the movie is based, and the movie lines are almost exactly the same:

"Stop it," I yell. "Stop touching each other."

"Whoa," Sid says. "Maybe that's why your wife cheated on you if you're so against touching."

I snap my head around to face him. "Do you get hit a lot?"

He shrugs, "I've had my share."

I face my daughter, "You know you're dating a complete retard. You know that, don't you?"

"My brother's retarded, man." Sid says. "Don't use it in a derogatory way."

"Oh." I don't say anything more hoping he'll interpret my silence as an apology.

"Psych," he says and now kicks the back of my seat. "I don't have a retarded brother!" His little trick is giving him a great amount of amusement. "Speaking of the retarded," he says, "do you ever feel bad for wishing a retarded person or an old person or a disabled person would hurry up? Sometimes I wait for them to cross the street and I'm like, 'Come on already!' but then I feel bad.

So needless to say, I will not be seeing this movie and I will be encouraging others to not see it. I'm sure it has already made a gazillion dollars and may probably win an Oscar, but it won't make my $7.50, and neither will any future movie in which Mr. Clooney participates.

I'm really, really tired of this.

I Want The Truth

I got the call from the school nurse at 2:15pm Friday. They told me Jessica was on her way to the hospital in an ambulance. And here's the reason they gave me:

Jessica was late getting to school on Friday. Once there she was very, very, very sleepy - so sleepy that she fell asleep in the restroom, and started choking at lunch because she fell asleep while eating. The teacher had a rough time rousing her. During one of her awake periods, Jessica said she had gone to the dentist that morning and the dentist gave her medicine.

Thing is - Jessica did not have a dentist appointment, and to top it off, Jessica doesn't make up stories. Never has. Never tells a lie. Her brain is just not wired that way. Her teachers in elementary and middle school found it impossible for her to concoct a story for reading class even when she was given the start of the story. She has never engaged in imaginative play. She does, however, repeat verbatim things that people tell her.

I was told that Jessica's group home manager was following the ambulance to the hospital, and I told the school I was headed there also. Since I was at work downtown, it would take me about 20 minutes to get to the hospital. When I arrived, there was no group home staff anywhere to be found, and no one had been there.

Jessica was indeed sleepy. She barely opened her eyes to tell me hi and then she nodded off again. Usually a person that requires four strong men to hold her down for a blood draw, she didn't even whimper when the nurse stuck her. This definitely was not Jessica....

I continued to try tracking down the group home manager. We needed answers to questions about how Jessica's previous night had gone, what had happened before school, and if anyone else at the group home was sick. But I couldn't get her. Finally a strange man popped into the room and said he was a group home staff member. But, he had no answers to our questions.

The ER doc had a cat scan done. I was worried that Jessica's shunt may be failing, although her symptoms really didn't support that. The cat scan agreed - it was not a shunt issue. Fortunately, the ER doc astutely ordered a tox screen - a test to check just what Jessica may have been given or ingested.

Apparently, she was either given too much of her meds, or she was given meds that belonged to another group home resident. But the group home staff refused to accept that. They said she was fine and they had no idea what the doctor was talking about.

Jessica was finally discharged, and I have left a message for the director of the company to contact me. Although I am sure there is no written record of the extra meds, just the fact that someone told Jessica to say she went to the dentist convinces me that the person knew something wrong had occurred.

I'm not sure where all this is going to go, but I will keep you posted...

Light My Fire

OK, I'm about to step back on my soapbox again. Let's talk a bit about the sexist attitudes of some restaurant owners and in addition, the complete disregard for wheelchair users at those same restaurants.

My younger kids were back in school today, but I had another day before having to go back to work. Chip is still on college break, so he and I decided to try a new restaurant near where we live. The name of the restaurant is Halligan's, and the one near us is actually the second one of these restaurants. The first Halligan's opened in our city's downtown area back in 2008, but the one we visited opened just a month ago.

The Halligan's website states that they, "capture the essence and mystique of what it truly means to be in the fire service. The restaurant is a virtual museum and tribute to past and present firefighters of all jurisdictions. We have accomplished this by creating an atmosphere that is comfortable to all members of the fire service as well as an awe inspiring ambience for the general public."

Further, the website introduces the owner as a current county firefighter, someone with 20 years of service who decided in 2008 to open his first restaurant. Sounds like a good plan if you believe the rumors often heard of firefighters being great cooks. And the food we had at lunch today was really good, some of the best I have had recently. I just wish two other very important aspects of the restaurant were not so bad.

First, what do I mean about sexist? Well, if I were a female firefighter I believe I would have a problem with the female serving staff dressing in barely-cover-the-butt khaki skirts. Everyone working in the restaurant dresses in an interpretation of firefighter uniforms. Everyone that is not female wears khaki pants, blue teeshirts, and red suspenders. But if you are female, you wear the microskirt, a tight teeshirt and the red suspenders. Yes, it's a bar, but still, the owner doesn't have his male servers in tight pants and even tighter teeshirts. Again, if I were a female firefighter, I don't think I would choose to support the restaurant.

Secondly, there was a complete disregard for the accommodation of wheelchair users. Every, and I mean EVERY table in the place was a high bar-style table. Absolutely impossible for a wheelchair user to sit at and eat or drink. I asked the server about the tables, and she said that the owner "didn't think about that until some patrons showed up in wheelchairs."

Really...you've been a firefighter for 20 years...a firefighter that more than likely had to help people with disabilities over the years, and you didn't think about that when opening your restaurant??? Or just discount the fact that you are a firefighter. How can anyone open any sort of establishment these days and not think about people with disabilities? It boggles the mind.

And one more question - did the building inspector not notice the lack of accessibility, or is it not their job to notice such things?

So Halligan's, dress your servers appropriately and remember that not everyone can lift themselves into a three foot high stool. You know, looking at your picture, Mr. Owner, and seeing you in the restaurant today, you might yourself be looking at disability in the near future. What then? Will you finally provide a welcoming establishment for all people?

Doctor? I Wonder...

MALPRACTICE - failure of a professional person, as a physician or lawyer, to render proper services through reprehensible ignorance or negligence or through criminal intent, especially when injury or loss follows.

Brooke, the daughter of one of my best friends, recently switched from having a G-tube to having a GJ-tube. For several months, Brooke had been experiencing a great deal of pain whenever she was fed. The doctors did a lot of testing but couldn't come up with a reason for the pain. Their solution was to switch to the GJ-tube.

It sounded like an ok idea, and Brooke does have much less pain using it over the G-tube. But, it comes with a major problem - it gets clogged a LOT. And unlike with a G-tube, a parent or caregiver can't change it. Changing the GJ-rube requires a trip to the hospital or medical office for a radiologist to change it and make sure it is positioned correctly.

Seeing as the tube gets clogged almost weekly, that is a huge headache, and not to mention, lots of time off from work for Brooke's Mom (unpaid time off which for a single mom is devastating.) But if it makes life better for Brooke, her mom is all for it.

So what's the problem? Well, this past Sunday, the tube became clogged again. But a call to the GI doc provided bad news. He and the radiologist were not going to come in on Sunday to change the tube, and Brooke would just have to wait until Monday. But since ALL Brooke's nutrition and fluids are given via that tube, that meant she would quickly become dehydrated or Brooke's mom would have to use the G-tube part and cause Brooke to experience the pain again.

To say this infuriated Brooke's Mom and the rest of us who know and love this lovely little family would be an understatement. If a doctor chooses to treat children with significant needs, and further if that doctor is the one who recommended the GJ-tube, then his job is 24/7. If he wants time off, he makes arrangements for other doctors to back him up. I still find it almost incomprehensible that this happened.

We parents of children with significant medical needs must rely on the medical community to keep our children alive and healthy. So much is beyond our control, and that is a horrible feeling just knowing that we can't make it better.

I, for one, consider this malpractice...just saying....

Tell Me What's Right While Doing What's Wrong

Ahh, high school. Those years when teachers and staff try to mold young minds for the challenges of the future. A time of showing the difference between right and wrong. A time to hopefully build some compassion, some sense of justice, and to learn to live together peacefully.

Yea right...

What high school should not be, in my opinion, is preaching with a "do what I say not what I do" attitude. Yet it happens in ways both small and large. We have high school coaches videotaping naked girls in the locker rooms. We have female teachers having sex with young male students. We have school personnel being arrested for embezzlement. And we have this - arguably not as significant as the other things I just listed, but still showing a careless regard for both the law and the rights of others:



Mr. school employee/door repairman, you took the last handicapped-accessible parking space. No, you did not have the handicapped placard that gives you the right to park there. But yes, it was right in front of the building where you had to fix a sticky door. And yes, it saved you from toting your bag of tools (no bigger than a student's backpack) across the parking lot. But it meant my child had to get out of my car and into his wheelchair in that busy parking lot.

Thanks for making his life more difficult and less safe. And thanks for the wonderful message you sent to the other students at school. I'm sure that those students won't feel much remorse when they park in a handicapped spot. You showed them today that it is alright...

The Clock Is Ticking

It’s the end of the first week back at school, and for the three of my children still in the public school system, almost everything has gone very well. But, the one thing that hasn’t gone well is very very not well.

In my town, high school starts at 8:45 am. The past two years, Ronnie and Ashley went to the same high school and were picked up by the same accessible bus. The bus driver knew my family well, and understood that as a single parent, getting to work on time was important. He changed his route schedule just a bit to pick Ronnie and Ashley up first. That allowed me to get to work on time. Not so this year….

The problems started the Friday before school was scheduled to start. As I always do, I called transportation to verify that I still had the correct bus numbers and schedules. Ronnie moved to a new high school this year, so I was dealing with two bus numbers and schedules.

When I called, the transportation office gave me the bus number and pickup time for Ashley – bus number 1980 and pickup at 8:16 am. That was going to be a problem by preventing me arriving at work by 8:30 am. But, I figured I would let the transportation issues settle in the first week, and then I would make my request for an earlier pickup.

Next, I asked for Ronnie’s bus information. “Ronnie who?”, they said. Even though his IEP denotes special transportation with pickup and drop off at home, there was no record of that need. I tried to reason – I called the school teacher and principal – I got angry – and then I drew a line in the sand. Ronnie would not be at school the first day unless someone picked him up.

Perhaps as retribution for that line in the sand, on Monday (Labor Day) I got a call saying bus 300 would pick him up at 8:20 am. Again, that’s a problem for me getting to work on time, but again, I decided to let things ride for the first week.

Here’s how the first week went:

Tuesday – Ashley picked up at 8:30am, 14 minutes late. Ronnie picked up at 8:55 am, 35 minutes late and 10 minutes past the start of school. Once he arrived at the school, I estimate he was about 30 minutes late for school.

Wednesday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:50 am, 30 minutes late, and again, late for school.

Thursday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:45 am, 30 minutes late and again, late for school.

I’ve called and emailed and whined and begged and been professional all the while. The only response I get from transportation is that they are discussing to see if there are any other options.

Well, school district, here’s an option – you are not providing services as outlined in Ronnie’s IEP since he is late getting to school each day. I feel a state Department of Education complaint brewing, and compensatory time building.

Yet Another Disrespectful Movie

I really hadn’t planned on going to see the new movie with Ryan Reynolds and Jason Bateman titled, “The Change-Up.” To me it looks like just another silly switching bodies type of movie and after Freaky Friday, I think I have had my fill of that. But there is another even bigger reason I won’t see it.

Just like the movie Tropic Thunder, The Change-Up attempts to get laughs at the expense of people with disabilities. In one exchange early in the movie, Reynolds’ character asks Bateman’s character about his young twins. “Why can’t they talk yet? Are they retarded or something?” he says. Reynolds follows up with, “the one on the left looks a little Downsy.”

The Special Olympics organization is calling for an apology from Universal Pictures. The ARC is calling for an apology, and the disability community is up in arms and expressing their distaste on blogs and social networking sites.

It is long past time for this disrespect to stop. Even if we all boycott the movie, it probably won’t be noticed because it is generally a stinker of a movie. But, if you have a way to express your outrage – if you are offended – if you want movie executives to stop trying to get laughs at the expense of those we love, I urge you to let your opinion be heard.

Disappointed

I checked Facebook Sunday night just before going to bed and was surprised to see a status update for one of our local news stations. It said something to the effect of “join us tonight at 11pm to hear about what Virginia should do to the developmentally disabled in the state.”

Whoa!!! That got my attention, and I was determined to stay awake until 11pm to hear what was said. Unfortunately, tiredness took over and I didn’t make the broadcast.

So, when I got up very early Monday morning, I checked Facebook again, and sure enough there was another update from that news station that said “We ran a story tonight on what Virginia should do to the developmentally disabled. State officials are collecting public comments on this issue through August 15th. Comments can be submitted by e-mail to…”

The more I thought about how that was worded, and the more I worried about the content, the angrier I got. So the first thing I did after getting ready for work and getting the kids moving was to check the actual website for the news station to find out what Virginia was going to “do” to the developmentally disabled.

Apparently, other people had issues with the words and by the time I got to the station and back to Facebook, the wording had been changed. All reference to “do to the developmentally disabled’ had been changed to “care for the developmentally disabled.” The content of the story referenced a survey being conducted by one of the state agencies that support people with disabilities.

I’m really disappointed that the news station (WTVR) made such egregious statements even though they were corrected later. This is a station that advertises itself as the most honored station in Central Virginia. Perhaps they are, but these comments were dishonorable at best.

Just Go Another Way, Why Don't You?

Do you think I can't see the disgusted look on your face?

Or the impatient drumming of your fingers on the steering wheel?

Do you really think that gunning your motor is impressing anyone?

Or that the way you inch forward over and over again will make us all move faster?

If five minutes is going to make you really late for wherever you are headed, why don't you just turn around and go another way?

I know you live in my neighborhood because I see your car at the same time every morning. Haven't you figured out that the bus that picks up two of my children arrives at exactly the same time each morning?

It takes more than a few minutes for my children to get on the school bus. The aide must get off the bus, open the door to the wheelchair ramp, lower the ramp, help my son back his wheelchair onto the ramp, buckle the safetly strap around him, raise the ramp, shut the door and secure it.

Then the aide must make her way back onto the bus while I help my blind daughter find her way to the bus steps. The aide stands at the top, takes my daughter's backpack, then reaches out to help my daughter get on the bus.

Then after everyone is seated and secured, the bus can move.

And you, very impatient, rude person can speed up, just to get more frustrated when the bus has to stop again.

I'm really glad that you are not one of my co-workers, because if you act that way when two children with disabilities are boarding the bus for school, I can just imagine what an a** you are in the office.

Get The Story Straight

It's been a crazy few days for Ronnie. Ronnie has a friend (a girl) - I'll call her Friend Girl for this post - who is rather troubled. Friend Girl is in a foster situation although she is 18 years old. I know almost nothing about her except that she is Deaf, and she was placed in a therapeutic foster home in Virginia from Texas.

Friend Girl has attended a couple of the same events as Ronnie. She also came to Ronnie's birthday party. Ronnie and Friend Girl are in school together, and both are fluent signers.

The middle of last week, Ronnie got some desperate text messages from Friend Girl saying she hated her foster mom and had run away. She said she wanted me to be her mom, and Ronnie, bless his heart, said he would be happy to share me with her.

I urged Friend Girl (through texts) to go back home or to go to a friend's house. She kept wanting to come to our house, but I told her that wasn't possible.

Several days later, and after involvement by social workers and the police, Friend Girl ends up in the mental health crisis unit for our county. The worker there calls me and said Friend Girl wanted to come stay with us. I explained to the worker why that wasn't possible, and I suggested that she get some intensive help somewhere. The worker agreed, and left to try to convince Friend Girl to go to the hospital.

We heard nothing for a day, and then we got some phone calls via an interpreter for Friend Girl. She was indeed in the Mental Health Crisis Unit at St. Mary's Hospital, and she wanted Ronnie to visit her.

I was willing to take him, and asked the on duty nurse if that would be possible. She said no, visitors had to be at least 18 years old. Then a little while later, I get a phone call from the hospital saying that the doctor had given special permission for Ronnie to visit. So after dinner, we loaded up his wheelchair and headed to the hospital.

We were buzzed into the foyer of the unit (there is a lot of security on a psych ward), but were then told we could not visit. I argued my case, asking why first we were told we could and then we were told we couldn't. The nurse on duty at that time said nothing but "I'm sorry, you can't come in."

You know, I can understand not being allowed to visit, and I was surprised that we were told we could. But I'm really not happy that they played with the emotions of two children. Ronnie has been worried sick about Friend Girl, and to believe he would be able to see her and then denied that gift was a horrible blow to him.

As an adult who has had many, many dealings with hospitals, I really wasn't surprised at this ineptitude. But Ronnie has not had to deal with this before, and it broke my heart to see him disappointed.

Please keep both Ronnie and Friend Girl in your prayers.

A Modicum of Sense

Well, at least the Academy of Arts and Sciences haven't completely lost their minds. I was appalled when I first heard that the TV show, Family Guy, got an Emmy nod for their song, 'Down Syndrome Girl.'

Haven't heard it? Well, here is a sampling of the lyrics:


And though her pretty face may seem a special person's wettest dream. [...]

You must impress that ultra-boomin', all consumin', poorly-groomin', Down Syndrome girl. [...]

You want to take that little whore and spin her on the dancing floor. [...]

My boy between the two of us we'll get her on the shorty bus and then you're gonna take it on a whirl.

Now go impress that super-thrilling, wish-fulfilling, YooHoo-spilling, ultra-swinging, boner-bringing, gayly-singing, dingalinging, stupefying, fortifying, as of Monday shoe lace-tying, stimulating, titillating, kitty-cat impersonating, mega-rocking, pillow talking, just a little crooked walking, poorly-pouting, poopie-sprouting, for some reason always shouting, fascinating, captivating, happiness and joy-creating, Down Syndrome girl.

According to Newsbusters.com, "The Feb. 14 Family Guy episode, which the song appeared in, sparked outrage after its premiere - most notably from former Alaska Gov. Sarah Palin who has a son with Down syndrome.

At one point in the episode, the character with Down syndrome said that her mom was "the former governor of Alaska," a clear reference to Palin and her son, Trig.

Palin quickly criticized the show for the distasteful jab at her son. "[W]hy make it tougher on the special needs community? When is enough enough? When are we going to be willing to say some things just aren't really funny?" she said on Feb. 16."

Mrs. Palin and I almost never agree on anything, but on this item we most certainly do. The song was not funny - it was offensive. And even though, as New York magazine noted, the Outstanding Original Music and Lyrics award, the category in which this song was nominated, has been "gaining a reputation as Emmy's quiet nod to First Amendment rights", this time things went too far.

Thank goodness the song did not win the Emmy.

This Great (?) Commonwealth

This is turning into a banner year here in this glorious Commonwealth in which I live. First, the state's budget is in dire straits - there's no disputing that. But our legislators, in their infinite wisdom, have decided to balance that budget by cutting health care for the poor and disabled and reducing education funding.

It probably comes as no surprise that most of the legislators are good old boys whose children are grown and healthy.

Today, however, I discovered the icing on the cake.

State Delegate Bob Marshall of Manassas says disabled children are God’s punishment to women who have aborted their first pregnancy.

Now I understand. God has spoken and His apostles are just following His commands. Or so they think.

Jerks - big stupid jerks.

****UPDATE****

In this morning's Richmond Times Dispatch newspaper, Delegate Marshall claims we misunderstood him. Too little, too late, Bob...

Facebook group calling for Mr. Marshall's resignation

Virginians Against Bob Marshall's Ignorance

Petition Calling for Delegate Marshall's Resgination

Affliction Day

This article below appeared in the Mansfield News Mirror, a Texas newspaper. Before reading it, consider the definition of 'affliction':

af·flic·tion   /əˈflɪkʃən/
–noun
1.a state of pain, distress, or grief; misery

I swear, if my school district ever wants to have an 'affliction' day, my child will not be the one that is afflicted. (Notice the non-blindfolded student laughing at the student pretending to be blind in the picture to the right.)

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Students Spend Challenging Day

The students at Mansfield High School have experienced learning on a whole new level. The past few days the students in Robyn Russell's Teen Leadership class have been preparing to have an affliction day. The students were blind, deaf or mute. They had to live one day the way a child or adult with disabilities would in an educational atmosphere.

The students were given tasks they had to complete with a partner who did not have a disability. One of the tasks was for each student to go down the hall and get a drink of water. Many of the blind students had their hands out to feel for walls and depended on their partner for guidance.

"I was very disoriented while walking through the halls," said senior Ryan Collins. "I have been walking these halls the last four years but as soon as the blindfold went on I had no idea where I was in the school."

Another activity was to color a picture of a tiger. First, the teacher asked the students to write their names on the paper. Most of them ended up being sideways or upside down. Next, they were given two markers and told to color a picture.

"I felt lost," said Shayla Blackwell, a sophomore. "I didn't even know what I was coloring let alone what color markers I had in my hands."

The students also had to complete a workout routine. The majority felt dizzy and embarrassed. All the students believed even in the short period of time they were disabled that one of their other senses became stronger.

Affliction day gave students a small insight into the life of a disabled individual. The tasks they completed were simple to those without disabilities, but they could tell that life would be much more difficult with a handicap. The students got to experience a few of the challenges having a disability creates, but there are many more such as discrimination in employment, higher insurance and for teenagers a social status that can be difficult to overcome.

Many of the students said walking in another person's shoes is the best way to experience their life.

Chief of What?

I’ve never been a Sarah Palin fan, but I’ve got to applaud her for calling out The Obama Administration’s Chief of Staff, Rahm Emanuel (pictured to the right), when he recently scolded participants in a strategy session, calling them, “F---ing retarded.”

Mrs. Palin wrote on her Facebook page, “Just as we’d be appalled if any public figure of Rahm’s stature ever used the “N-word” or other such inappropriate language, Rahm’s slur on all God’s children with cognitive and developmental disabilities – and the people who love them – is unacceptable, and it’s heartbreaking.”

That one posting incited a firestorm in the press. Here are a few of the articles, and I hoping that again attention will be called to stopping the use of this hurtful and vile word.

Apology NOT Accepted

Emanual Deserves a Liberal Scolding

In the Offensive Spotlight

Emanuel Offensive Comment

Private Apology is Not Enough

Balancing On The Backs of The Weakest

My home state, Virginia, has a rotten record of providing services to people with disabilities. Virginia is consistently ranked between 40th and 47th out of 50 (states) on services. So, I shouldn’t be surprised by the latest state budget recommendations. But I am. I didn’t think things could get a lot worse, but I was wrong.

I understand that state budgets have been hit hard during this economic downturn. I’m a state employee and I’ve seen the cutbacks, the extra jobs we all have to take on, and the layoffs. Virginia is required by its constitution to have a balanced budget, i.e. the state cannot act like the Federal government and just go deeper and deeper into debt. So as we approach this next budget cycle, the cuts which in the past have been deep, are going right to the bone. Unfortunately, the proposals will hit people with disabilities the hardest.

Here are some examples of the proposals:

• Eliminate 200 Mental Retardation waiver slots


• Reduce the number of hours allowed for respite care from 720 annually to 240 annually


• Postpone mandated increases in annual waiver slots


• Freeze enrollment in the 5 waivers


• Reduce provider rates for waiver services by 5%


• Reduce rates and prior authorization for intensive in-home services


• Limit annual visits for physical, occupational and speech therapies.

Currently in Virginia, 5,115 individuals are waiting on the Mental Retardation Waiting List. Ashley has been waiting 5 years on the Developmental Disabilities list, and she is still in spot 329. The waiting lists will continue to grow and people who need services to become productive members of society will languish in sub-standard care. The providers, usually personal care aides, are already paid an extremely low rate. That is why families have a hard time finding and keeping good aides. And respite – let me tell you how I use my respite:

720 hours a year works out to about 13 hours a weekend, which is the way I have chosen to use mine. 2-3 hours each weekend is spent grocery shopping. Another hour is spent waiting at the pharmacy. Car maintenance consumes another 3 hours (the total for the year divided by the number of weekends). Home and yard maintenance takes another 2 hours. Then there are the errands for my other children – haircuts, school shopping tasks, clothes shopping, etc). Those will take another 2 hours. Then, because I am a state employee and our resources have been cut so drastically, I always have at least 50 hours of work to accomplish in a 40 hour work week. On the weekends, I use my respite time to do some of my work. – about another 2 hours. And, if there is anytime at all left, I treat myself to a few minutes at Starbucks.

I can make it work with 13 hours a weekend of respite. I absolutely cannot make it work if those hours are reduced to 5 for the weekend.

But here’s the icing on the cake. At the same time as this proposed dismantling of community-based supports, the current administration is continuing plans to rebuild a NEW, 75-bed, state-operated institution in Chesapeake, VA.

This all makes me sick to my stomach. Virginia's state motto is "Virginia is for Lovers." I would suggest we add "except for people with disabilities" to the end of that statement.