Strolling The Web

Here are a few things that caught my eye this week on my Internet meanderings...

You've probably heard already about the Judge Rotenberg Center and its use of shock therapy on children. In this video, one of the center's lawyers is interviewed by Anderson Cooper:



***************************************

Did you realize that Goodwill Industries, one of the leading employers of people with disabilities, doesn't even pay minimum wage? I didn't, and in fact, I had high hopes that Goodwill might be an employer for one of my children in the future. Now I don't know....

***************************************

Apple announced it new iOS 6 operating system this week and with it comes some very important accessbility features for students with disabilities and anyone with vision or hearing impairments.

***************************************

Misty Cargill, a 30 year old woman with intellectual disabilities, died while waiting for a kidney transplant. Though the hospital said she didn't have the mental capacity to make an informed decisions about a transplant, Tim Shriver, chairman of the Special Olympics, writes "Lurking below the surface is the more likely reason for denial: Someone determines that people with intellectual disabilities are inferior, human beings of lesser value, the last priority." I agree wholeheartedly with his statement and as a parent of children with intellectual disabilities, it scares the hell out of me.

***************************************

And finally, get out your tissues. Jess, at Diary of a Mom, wrote this very poignant blog post for all parents of children with disabilities. It is, as is most of her writing, magnificent.

***************************************

Have a great weekend, everyone!

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...

Hello, My Name Is....

An incredible Dad that I know through Facebook published a picture yesterday of a business card he ordered for his severely disabled daughter. Here it is:



We've all dealt with the stares from people who don't understand or are curious about our children with significant needs. According to this dad, Roy:

"The card does two things. There's an icebreaker to remove that awkward feeling when people first meet a disabled person and an easy and private way to learn all they want to know. The website also gives them several ways to stay in touch."

And he provides an example from something he personally experienced:

"At the grocery store there were two young girls who were quite curious about Emma. The mother, however, was embarrassed by her daughters and tried to quiet them. I gave them the card and that's all it took for mom to get on board too."

What do you think of this idea? I'm liking it...a lot. Do you think it might help educate and raise awareness? Would you be comfortable handing out such a card to strangers?

Noticed!

I'm very excited! My other blog, www.ustooplease.com, has been noticed by one of my town's local TV news station, and I have been asked to be a regular contributor to their community news section!

Of course, there is no compensation involved other than seeing my name as a byline, but still it's very exciting.

Here's my first article (which was also posted on www.ustooplease.com):

Virginia Museum of Fine Arts - Accessibility Review

We Proclaim...

Please take a moment to read the piece below, and then visit the ADAPT blog, Defending Our Freedom. Also, at the end of this piece is a short video about ADAPT.

A DISABLED MANIFESTO
By John R. Woodward, M.S.W. Center for Independent Living of North Florida, Inc

We proclaim that we are born free and equal human beings; that our disabilities are limitations only, and that our identity does not derive from being disabled.

We proclaim that we have the same value as people who are not disabled, and we reject any scheme of labeling or classifying us that encourages people to think of us as having diminished value.

We reject the idea that institutions must be created to"care" for us, and proclaim that these institutions have been used to "manage" us in ways that non-disabled people are not expected to accept. We particularly denounce institutions whose purpose is to punish us for being disabled, or to confine us for the convenience of others.

We reject the notion that we need "experts," to tell ushow to live, especially experts from the able-bodied world. We are not diagnoses in need of a cure or cases to be closed. We are human, with human dreams and ambitions.

We deny that images of disability are appropriatemetaphors for incompetence, stupidity, ugliness or weakness.

We are aware that as people with disabilities, we have been considered objects of charity and we have been considered commodities. We are neither. We reject charitable enterprises that exploit our lifestyle to titillate others, and which propose to establish the rules by which we must live without our participation. We also reject businesses that use us as "warm bodies" to provide a passive market for their services, again laying down rules by which we must live for their profit. We recognize that the lines between charities and businesses are blurred in the disability industry, and we do not accept services from either if their essential function is to exploit us.

We assert our rights of self-determination in the face ofrules, eligibility criteria, regulations, customs, laws or other barriers, and we pledge not to allow any authority or institution to deprive us of our freedom of choice.

Finally, we assert that any service we need, from specialized teaching to personal care, can be provided to us in the community among our non-disabled peers. Segregated institutions are not necessary to serve us, and they have been the greatest source of our oppression, especially when they have been run by able-bodied people without our participation.

All human beings are more alike than we are different. We recognize that when we assert this belief we will find ourselves in conflict with regressive institutions and their supporters, some of whom may be disabled themselves. We do not expect thousands of years of stereotyping to dissipate quickly. We commit ourselves and those who come after us to challenge our oppression on every level until we are allowed to be fully human and assert our individuality ahead of our disability.
-------------------------

Who is ADAPT?

How To Move Past Hypocrisy

When my family goes anywhere, we usually don’t go quietly or unnoticed. We’re not Kate Plus Eight, but everyone’s attention is usually diverted, at least for a short period, to my family. And, being someone who is more comfortable not being noticed, this situation has been quite an adjustment for me.

For the most part, I’ve moved past caring too much about the stares of strangers when we shop, go to the park, go to the movies, or other community activities. But there is something that still troubles me, and I don’t know what to do about it.

Because I am a single parent, where I go, so go my children. Tonight, a memorial service is being held for the recently deceased mother of one of my co-workers. My co-worker and I have been with the same employer for over 25 years now. I am expected to be present at the service and I want to be present. What I don’t want is for my family procession to take anything away from the decorum of the ceremony. And that’s just one example.

About every two months, all my co-workers get together at a local restaurant for dinner. Families are included, and very often attend. But my family is a little different than most – okay, a lot different. My co-workers don’t understand my children and don’t know how to interact with them. In fact, some are probably uncomfortable around my children.

My children and I should not have to spend our lives only moving in social circles of families like our own. While I love every moment I spend with my friends that have children with disabilities, and I am so grateful for their support, I really don't want to impose limits on my children.

I espouse inclusion to anyone who will listen. But here are situations where I could choose inclusion for my children, and I don’t. I guess that makes me a hypocrite. But how do I move past the uncomfortable feelings for others as well as for my family to get to that state of inclusion?

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

Finding My Voice

Growing up, I was labeled a shy child. As a young adult, I usually let everyone else do the talking, and I was always uncomfortable in social situations. When I moved into the business world, the thought of having to speak in front of a group of people could make me physically sick.

The fact that I am no longer like that I owe completely to Ashley.

I knew before I ever brought Ashley home that I would have to be her ‘voice’. I would have to learn to speak in front of groups of people, often hostile groups. I would have to learn to stand up to doctors and therapists and sometimes question their decisions. I would have to learn to seek out what she needed and then be bold in getting those things. I would have to become her lifetime advocate.

Unlike when I was forced to speak in front of a group of people in my business community, I had no time to think and worry about my speech. I had no time for the jitters to take hold. Rather, Ashley needed my voice, my advocacy, and hesitating would not get her what she needed.

I was immediately thrown into fighting my local hospital when they chose to treat her like a ‘Medicaid’ baby and deny her and me the same considerations someone with expensive insurance would receive.

Less than 6 months about bringing her home, I had to begin my battle with our school district, fighting from the time Ashley was two years old and continuing even today to get her the appropriate school services. That battle took me to speaking before the school board, arguing in IEP meetings, trying to mediate our disagreements, and finally to Federal Court several times.

I’ve fought our state’s Medicaid system to provide for Ashley’s unique needs – a personal care aide who knows sign language and needs to be paid for that skill; a bathroom that was accessible and conducive to developing her self-sufficiency; and ongoing medical supplies when they wished to place limits.

I’ve stood before our state’s General Assembly, and in front of them and a few hundred other people in attendance, have told Ashley’s story. I’ve learned to lobby for people with disabilities and how to fight when their rights are ignored or violated.

In short, knowing that I need to be Ashley’s voice has helped me find my own voice. I can’t say that the jitters are gone completely, but I can say that I am no longer labeled shy, and I can say that I believe I am making a difference both for Ashley and for others.

Disability Doesn't Equate With Inability

That statement in the title of this post was made by Nancy Starnes, director of external affairs for the Washington-based National Organization on Disability upon hearing that a statue honoring Helen Keller would be placed in the U.S. Capitol's National Statuary Hall.

According to the Alabama Governor's office, a statue commemorating Keller's 1887 communication breakthrough (her "w-a-t-e-r" moment) will be the first statue in the Capitol of a person with a disability, as well as the first of a child.

Also according to the Governor of Alabama, the statue will show there are "no limits to what people can accomplish".

Hear, hear!

Check out the full story on CNN.

Today I am thankful for the adoption support group I will attend this evening.

"Gotta Love This State I Live In", she said sarcastically

I love living in the South. And I've always loved many of the things my home state has to offer. Then something like this comes along and sends my blood pressure off the charts...

Hopes For Group Home Dashed

A community service board in Northern Virginia dropped plans to set up a group home, pictured on the right, for adults with intellectual disabilities after neighbors complained vehemently to the local board of supervisors.

The Rappahannock-Rapidan Community Services Board (RRCSB) had proposed converting a foreclosed home in a rural neighborhood into a supervised group home for a handful of adults with developmental disabilities who had no criminal backgrounds.

Members of the neighborhood voiced concern that a group home would lead to decreased property values, compromised neighborhood safety, a violation of neighborhood covenants, lost insurance coverage, and safety problems for the residents with disabilities.

This newspaper editorial was excellent however.

I just cannot believe this cr*p happens. OK, yes I can, but I don't want to believe it.

Yet Another Abercrombie 'Look' Issue

This time, it involves a Muslim teen...

Abercrombie and Fitch at it again

News - Both Good and Bad

Electric Cars Present Hazard for the Blind

I would love to own an electric car – some little sporty model that got zillions of miles to the gallon of gas. But, because I am the mother of a child who is blind, my concern for her safety outweighs my desire for a ‘green’ vehicle.

Electric cars are quiet. So quiet that my daughter would not hear one coming as she was trying to cross a street. But the Nissan Leaf, a concept car, seems to be addressing that issue. Blade Runner is one of my favorite movies, and with the Leaf, I can feel like I am in the movie!


Repulsive New Movie and the Bus that Endorses It

Another movie along the lines of Tropic Thunder is being released. I Hope They Serve Beer In Hell will be known for such offensive taglines as “deaf girls can’t hear you coming”, “blind girls can’t see you coming”, and “strippers will not tolerate disrespect (just kidding)”.

However, even worse than the movie is the fact that the Chicago Transit Authority prominently displayed these tag lines on their buses. Once it was brought to their attention, the CTA removed the signs, but come on, how could anyone at CTA think it was ok in the first place?


Nokia Makes Texting Easier for the Blind

Ashley will be very glad to hear about this! Nokia is testing a cell-phone application that will provide Braille transcription for a cell phone text message. The application is already available for download, and Nokia wants feedback.

Ignorance At Its Best

My buddy, Esbee, over at the Life in Forsyth blog, emailed me to let me know about one of her blog posts that she thought might interest me. Her comments in the mail definitely piqued my curiosity. She said she was still ‘sad’, two days after the event she detailed in her blog.

I immediately went to read her posting, and while I understand ‘sad’, what I was when I read it was ‘angry’. I moved a little closer to ‘sad’ the more I thought about it though. Sad that even in this day and age so much ignorance still exists about people with disabilities – sad that people have no trouble sharing their ignorant views, even if their views might emotionally harm someone, especially a child.

Take a few moments and read Esbee’s post and let me know what you feel. Then come back and let met share one of my weekend encounters. I’d also like to know your thoughts about that.

Sunday afternoon, Chip, Ashley and I went to a local bookstore – one of the big ones with a name you would recognize. Chip had selected his books for purchase, and I was pushing Ashley in her wheelchair through the aisles while waiting for Chip to pay.

As I went down one of the aisles, a young African American girl – probably about 14, the same age as Ashley – turned and stared at Ashley. It wasn’t just a short stare – those kind I have learned to ignore most of the time. This girl stared as we approached her – as we passed within 12 inches of her – and then turned and continued to stare as we started to pass by. This was a stare I just couldn’t ignore.

I asked the girl is I could help her with anything – did she have any questions? She got an angry look on her face which I admit did start to make me angry. I said, “You were staring so much at my daughter that I thought you might have some questions you would like to ask.” She made a disgusting noise and walked away.

As I went to the end of the aisle and turned back towards the cash register, the girl was angrily whining to her mother about the ‘weird lady who told her to stop staring.’ The girl’s mother was immediately irate and approached me in typical trashy talk show form and asked me what my problem was. She told me that I shouldn’t talk to her daughter, and that if I had anything to say, I should say it to her. Well, okay then.

I said, “This is my daughter, Ashley. She is 14 years old. She is deafblind, has three brain tumors, and needs this wheelchair to get around. Are they any other questions your daughter might like to ask?”

She said, “You’re a crazy b*tch and stay away from my daughter.”

I rolled Ashley away, and as they family left through the parking lot, the mother turned and used a type of sign language we all know.

Funny thing though, Ashley signed also. She signed “crazy b*tch and pointed outside the store.

Diner Part Deux

Last October, I wrote about an unexpected and wonderful experience my children and I had while having lunch at one of our favorite restaurants. Well, it seems this particular restaurant is chock full of ‘experiences’ for us because something else happened this past Saturday.

We decided to have lunch at the River City Diner again. It was quite crowded but the server was agreeable to seating us in a quiet location away from the hustle and bustle of the lunch crowd. Ashley, understandably, does much better with meals when we keep the stimulation and distractions to a minimum, especially on this particular Saturday because she wasn’t feeling her best.

As the server approached our table to take our orders, Ashley hit the side of her head with her hand. It’s something she does when she is distressed, and although it doesn’t happen often, when it does happen it can be quite disconcerting. The server stopped in her tracks, a few yards from our table, and had a look of shock and horror on her face. She recovered quickly though, and came to the table to take our drink orders.

When the server returned with our drinks and to take our food orders, she immediately apologized for her earlier actions. She said that she had a nephew with Autism, and that she should have behaved better. She convinced me that she understood such behaviors, and she seemed genuinely contrite. I told her I appreciated her apology, and then just gave her our orders.

She was quite an attentive server, a young mother she told us, and a very typical diner sort of waitress. While the reaction initially annoyed me, the result, I believe, was positive. And, I’m hoping that some of the other customers seated nearby also were aware of the exchange, and perhaps had their minds opened a bit also.

What do you think? What would your reaction have been, and would you have handled things differently? I’m really interested in your comments, because as parents of children with special needs know, this sort of situation is common.

Around the Blogosphere

Over the last week, I ran across several interesting stories on the Internet.

First, I never thought about what a hazard the new and very quiet electric cars could present to people who are blind. But apparently in the UK, someone has thought about it. Electric cars in the UK will be made to sound like noisy sports cars after concerns were raised that silent vehicles posed a danger to blind people and cyclists.

If folks have problems with that concept, perhaps we could turn the tables and put people who are blind behind the wheel of a car. That is exactly what the Colorado Center For The blind did!

And finally, since 18 month old Devin Sheppard is too young for driving school, his mother is worried that his blindness will create a major safety issue on the busy street on which they live. His mother, a woman from my home state of Virginia is trying to get drivers to slow down and be aware that her young son is blind. Her efforts included asking the transportation department to erect a sign indicating that a blind child lived on the street.

I have two signs on either end my road that state 'Deaf Child Area'. I asked to have it installed about 8 years ago, and had no problems from the transportation department in my area. But Devin's mother is finding that things have changed.

When Devin's mom contacted the Virginia Department of Transportation, a VDOT spokesperson said in 2007, at the recommendation of Virginia Board of People with Disabilities, they did away with specific signs for the blind or deaf, for example.

I sure would like to understand the reasoning behind that decision, and since the Virginia Board for People with Disabilities is housed in the office building right next to mine, I think I will pay them a visit.

How do other states handle this? Have you ever asked for a similar sign and either gotten it or been turned down?

Have you seen any interesting stories this week? If so, please share!

Where?

While I was out running errands this past weekend, something struck me as strange. I didn't see any adults with disabilities. In fact, as I thought back over the many errands I have run in the past year, I realized that I almost never see an adult with disabilities in my community.

I see lots of children with disabilities, and even a few teenagers. They are usually with their parents, and never with a group of other children.

I have seen one group of adults with obvious cognitive disabilities having lunch at one of our local malls. The adults, 5 of them, were with caregivers - women who appeared to me to be group home staff. The adults didn't seem to care that they were in the community - they were just doing as their carers directed. None of the adults looked happy.

So where are the adults with disabilities? I live in a medium-sized city, a city which is the capital of our state. I am in many different stores and community locations, places like grocery stores, malls, Target, WalMart, the library, and many medical facilities. I don't know why I haven't noticed before, but this weekend it was like I woke up to the fact that there were no adults with disabilities in my community.

Why is that? Our school systems spend most of the educational time supposedly preparing our children with cognitive disabilities for as independent a life as possible. I know for a fact that our schools take the children to the mall and grocery store multiple times each school year. I am told it is to help prepare the children for adulthood.

So what's happening? Are our school systems failing in their preparation? Are our other support organizations not achieving their goals of making communities inclusive? Are parents not doing their part to prepare their children? Have the parents of the adults with cognitive disabilities passed away and the adults are now lost - unable to function in the community?

This situation saddens me and frightens me. Will society not include my children as adults? Am I doing enough - to ready my children and to ready my community?

I'm very worried.

Very Effective Self-Advocacy

Much of the outrage and conversation that surrounded the release of the movie Tropic Thunder has died down. I expect that with the current release of the movie on DVD that conversations will once again surface.

I found the following video of a young woman affiliated with the ARC of Virginia. The ARC of Virginia advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. The young woman in the video is a self-advocate, and a darn fine one.

All Shoppers Welcome? Doesn't Seem So.

Even though I knew shopping on Black Friday would be difficult for Ashley in her wheelchair, I thought it would be because of the crowds of people. However, it wasn’t the crowds (the sagging economy seems to have played a major role in keeping folks from shopping), it was the stores themselves that made the task more than a little difficult.

At Circuit City, our first stop, getting into the store was a piece of cake – nice wide wheelchair ramps, an associate standing at the door to open it for us, and an entry area that easily accommodated both wheelchairs and lots of people. But things changed as we tried to make our way through the store. The aisles at Circuit City are wide making wheelchair travel easy except on days when extra kiosks of products are placed right in the middle of the aisles. Having worked in retail many moons ago, I know the point of the intrusive kiosks is to attract attention of shoppers. What it meant for Ashley was that she couldn’t go down the aisle unless I moved the kiosk out of the way. Some I could move, and some I couldn’t. Overall, our experience in this store was not terrible. We were able to find and procure everything we wanted with just a little bit of inconvenience.

Our second stop was World Market. The shopping experience there was much, much worse than Circuit City. First, the curb cut designed to allow wheelchair access to the store had a large, square brick post right in front of it on the sidewalk. There was no way for a chair to go up the ramp and do anything but hit the post. Since I had my two sons with me, we were able to lift Ashley’s chair over the curb. Inside the store was not much better. Again, there were kiosks blocking most aisles, and the aisles themselves were so packed full of merchandise that there was no way a wheelchair could safely maneuver. I waited at the front of the store and sent my sons in search of the two items I wanted.

Best Buy was a lot like Circuit City but with more people. Target was the most accessible store with wide aisles unobstructed with extra merchandise. The associates at Target were also very helpful and willing to provide whatever assistance might be needed. And, their bathroom was the most handicapped accessible.

Finally, we went to Petco and 5 and Below. Petco wasn’t too bad, just laid out in a really strange way. We had to keep Ashley’s chair on the tile aisles and away from the carpeted areas, and getting to the cash register was not easy either. 5 and Below, as I expected, was almost as difficult as World Market. Lots and lots of merchandise were stacked in the store and the aisles, even without the extra merchandise, would have been very difficult to maneuver. But, one of the strangest things was that the cash register and attendant were on a raised platform. I was able to reach them, but had Ashley or anyone else in a wheelchair been trying to pay, I don’t believe the would have been able to reach the cashier. The staff at this store, seemingly seasonal high schoolers, was not the least bit helpful or accommodating.

These are tough economic times our nation is facing. I would think that stores would want to make sure anyone that wanted to shop would be able to shop. Rather, some stores like World Market and 5 and Below, are excluding 5% of the population just because no one has paid attention to details.

Do Not Disturb

Today’s post is dedicated to Lynnette. She knows why…

I really had no idea how my life was going to be turned upside down when I adopted a child with significant disabilities. I thought I did, but I was wrong.

When I first brought Ashley home, my only parenting experience had come from raising my birth son as a single parent for 5 years. And, he was a pretty easy child to raise. He had some medical issues, but absolutely nothing to compare to Ashley’s medical issues. And, he was typically developing, if not advanced. My interactions with school were typical – my interactions with medical folks were typical – my battles with insurance were few – and my life was my own. All that changed the day I brought Ashley home.

As parents of a child with significant disabilities, our lives become very open books. Doctors and nurses ask very personal questions, and they ask them over and over again. School systems demand answers and test results and access to medical records. Even our friends, at least those brazen enough, ask very personal questions about our children and about our feelings and belief systems. We usually expect those things to some degree. What isn’t usually expected, or known in the beginning, is how we will lose all semblance of privacy in our own homes.

Almost all of us of who have children with significant issues will have to have in-home help at some point. That help may come in the form of nurses and/or personal care aides, and along with those people come the managers – the service facilitators who must visit periodically to ‘check up’ on things. And since all those service providers are seldom paid what they are worth, there is a lot of turnover. And that turnover means there is a constant stream of strangers into our homes.

These strangers hear our phone answering machine messages; they know when we leave dirty dishes in the sink; they hear us yell at our other children; they put away medical supplies and in the process, see that our closets and drawers are not always neat; while working in our kitchens, they see the beer in the refrigerator or the vodka in the cabinet; they know if we haven’t folded the laundry in the dryer, and in an effort to help, they fold not just our child’s clothes, but our clothes also. Just for the record, I don’t want other people folding my underwear.

They know what kind of books and magazines we read. They know the types of movies we rent. They know our tastes in food, and may even inadvertently uncover the hidden stash of candy. They may accept packages delivered for us, and in an attempt to be helpful, may open them and view the contents. They may bring our mail into the house, seeing just how many and what types of bills we receive.

In short, they are privy to almost every single aspect of our lives – not just the life of our child they are hired to assist. And I wonder, does it have to be this way? Do we have to give up our privacy just for our children to receive the services they need? Am I out in left field here, or do others have similar concerns? I would love to hear your thoughts.

Spreading The Word

Yesterday, the support organization of which I am President, Dreamcatchers (Families Whose Lives Are Touched by Deafblindness), collaborated with another Virginia support organization, VAAPVI (Virginia Association for Parents of the Visually Impaired), for a family fun day at the University of Richmond. And although the turnout was less than expected, the setting was ideal and I think everyone who attended had a great time.

Ashley's intervener, the lovely Miss Amy, helped set up and man the Dreamcatcher tables. We had our great (donated) banner, some new brochures, and pictures of both our past annual family retreats and of Chancellor, one of our adorable Dreamcatcher children who was called back to Heaven earlier this year.



The King Family (Brian, Emily and the handsome young Noah), also one of our Dreamcatcher families, joined us to help out and spread the Dreamcatcher message to all the families and professionals in attendance. (And no, the red-headed person is NOT part of their family!)



And Noah and Ashley also managed to work in some fun for themselves! Noah enjoyed showing his Dad how to hammer nails to build a birdhouse, and Ashley made sure the fire engine had correctly spelled 'Dial 911'.



Ashley's favorite, however, was not the face painting, the balloon toss, the free food, or the clowns. Nope - her day was complete when she found the orange traffic cones!