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?

One

I may be way out in left field with this post, but it sometimes seems to me that some parents of children with disabilities seem jealous that their child is not ‘as disabled’ as their friend’s child.

There grows in communities groups of parents who have children with disabilities. These groups may grow out of shared hospital experiences or shared school experiences or maybe just through word of mouth from one family to another. And the adults in the groups come together for support and to share their stories that usually only others in similar situations will understand. More often than not, the children represented by these groups have very similar disabilities – parents of children with deafblindness, parents of children with Down Syndrome, or parents of children with trachs, for example. But what if you are the parent of a child that just doesn’t quite fit the same description of other children in one of the groups? What do you do and where do you find your support?

What I have seen several times is that the parent might slightly exaggerate their child’s disability. Or, the parent will accumulate the trappings (high tech wheelchairs, special vans, etc) that might admit them to their group of choice. They will pattern their daily experiences (“Mary was up four times last night, and I am so exhausted today”), after the others in the group to which they wish to belong. They will adjust their lives to place more focus on their child and that child’s disability if doing so will admit them to the group.

Here’s an example without using real names, of course:

Sue is a young 30-something parent of a little girl with CP. On one of her visits to the hospital, she met another parent, a parent of a child whose survival depends on a trach, tube feeding, and constant suctioning. That other parent talked about her friends, other parents who shared a similar life and who got together regularly for birthday parties, lunches, and other such outings. Sue, feeling a little isolated in her life, exaggerated the level of her daughter’s issues just a bit to wrangle an invitation to the next group meeting. And from there, the exaggerations continued, but she was admitted to the group.

It saddens me that parents might feel a need to do this. It saddens me that we parents of children with disabilities isolate ourselves with others in similar situations just to find the support we need. We talk about inclusion all the time, and all the while, we often unknowingly are excluding.

I know it’s difficult for true inclusion to work, and I know that there are many, many facets to inclusion. I know I may never see it fully bloom in my lifetime, but that doesn’t stop me from dreaming about it. I suggest we try to envision the inclusive world we all desire while at the same time finding the support we need. I fully realize that it is much easier to bond with another parent whose child is on a trach if my child is on a trach. But let’s try setting aside the specifics of disability and concentrate on the specifics of humanity – regardless of ability.

We may not be able to change the world as one, but if each of us makes small inroads, I have to believe that one day the world will change and be universally accepting.

Hope For The Future

The belief in the inner beauty of each and every human being is at the heart of L’Arche…and at the heart of being human… We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.

-Jean Vanier, Becoming Human



I believe my biggest fear in life is what is going to happen after my death – happen to Ashley.

Ashley has made great strides in her short life. Doctors said she wouldn’t live – then said she wouldn’t walk – then said she would never communicate. From infancy, they recommended institutionalization. As my regular readers know, those doctors were very, very wrong. But, Ashley will need support throughout her life.

Just as Helen Keller needed assistance, so will Ashley. So, my challenge is figuring out how to ensure that assistance even after I am no longer able to provide it myself.

My experience with run-of-the-mill group homes is not good. Even under the best of situations, I don’t know of any group homes that are equipped or knowledgeable enough to support a person with deafblindness. My oldest son has tossed around the idea of establishing a group home, a group home done right, when he graduates from college. But that idea is mingled with a lot of other dreams he has, so I can’t count on that happening. And, I often feel that it is selfish of me to expect him to continue to care for his sister after I am gone. I know without a doubt that no one could care for her better, and I do pray that even if he chooses not to be her lifelong caregiver that he will at least stay very close to her.

I was offered a glimmer of hope last week when I read an article about L’Arche, a group that enables people with and without disabilities to share their lives in communities of faith and friendship. I’ve visited their website and like what I see there. I plan to explore this option a lot more, but I’m interested if any of you know of or have heard anything about L’Arche.

I know Ashley is just 14 years old, but the time to start planning for the future is now, not later, in my humble opinion.

Yet Another Adoption Tragedy

Arkansas has three times as many children needing foster care and adoption than it has available families to take them in.

But, on Tuesday, November 4th, Arkansas voters passed by a 57% majority, a proposition stating:

BE IT ENACTED BY THE PEOPLE OF THE STATE OF ARKANSAS:
Section 1: Adoption and foster care of minors.
(a) A minor may not be adopted or placed in a foster home if the individual seeking to adopt or to serve as a foster parent is cohabiting with a sexual partner outside of a marriage which is valid under the constitution and laws of this state.

As stated in the New York Times:

The measure, which voters overwhelmingly approved and which prevents unmarried cohabitating couples from adopting or fostering children, won strong support from conservatives, exit polls found. The ban affects all unmarried couples but was written with the intent of preventing gay couples from raising children in Arkansas.

“We believe that the best place for a child to grow up is in a stable home with a married mother and father,” said Jerry Cox, president of Family Council Action Committee, which obtained 95,000 signatures to place the proposal on state ballots. “But we also believe in blunting a gay agenda that we see at work in other states with regard to marriage and adoption issues.”

Arkansas is not the first state with such a policy. Florida prohibits adoption by applicants who identify themselves as gay, Utah prevents unmarried cohabitated couples from adopting and Mississippi specifically bans same-sex couples from adopting.

My opinion on all this? I believe all children benefit from a loving home with parents who care. I believe children who are left floundering in a foster care system of substandard care when they could be in a stable, loving family present a tragic face for our nation which claims to care. I don’t care if the family is made up of a married couple, a single person, two men, two women, or two people of different races as long as that family is stable and loving and cares for their children. I also believe that the usage of the term "sexual partner outside of marriage" is particularly egregious because the government is put in the position of investigating the private lives of people who reside together.

The only losers in this whole situation are the children.

Great After School Program

My local news station ran a great story this morning about a group of New York school children learning sign language after school. I tried to find the video they ran because the children were quite charming, but I couldn't find it. I did find a written piece about the program and it is shown below. I really wish more school districts would consider this. Everytime I have heard of such a program the thing that impresses me the most is that the children love learning sign language.

New York school kids learn unique life lesson
October 29, 2008 10:06 AM


When you think of after school programs, things like sports, music and art probably come to mind.

But some children in New York City are involved in a more "hands-on" type of activity.

7th grader Stephanie Arbelaez has already used what she's learning in her after school program sign language.

"I was walking in the street and I saw this man and he was trying to get help because he was elderly and he couldn't ask for help. So I told my mom he was saying he needed help, so I told my mom and she helped him cross the street," said student Stephanie Arbelaez.

This is a different kind of after school activity once a week.

Students at St. Sebastian School in Woodside, Queens learn to sign with a volunteer sign language interpreter from the Little Angels Foundation.

On the day we visited, the kids were also working with hearing impaired young people, trying out what they've studied.

"I said, 'hi my name is Conor.' and I said, 'what's up," said student Conor Hurley

It's a chance for these children to learn something new but also something larger.

"Respect for people, all people, deaf people certainly, but all types of people. That's what this program promised to do and that's what it did," said principal Joann Dolan.

The kids started with some basic expressions, the alphabet and numbers.

But as time goes on, they're learning to say all sorts of things.

Gray is Good

One of the blogs I visit on a fairly regular basis is Ka’lalau’s Korner, written by Carl Schroeder. The tag line on the blog says “Ka’lalau’s Korner invites you to embark on your journey into Carl Schroeder’s philosophy.” Mr. Schroeder is deaf and believes that ASL and ASL only is the language of the deaf. Mr. Schroeder’s world is black and white. Anything non-ASL is gray. However, with that said, I do pop over to his blog every so often, even though I usually leave not smiling. One of his recent blog entries left me more perturbed than usual. The title of that entry is “Deaf School Bus Versus Special Ed Schoolbus.”

In his blog entry, Mr. Schroeder says “While I don't claim to have experienced as a Spec Ed student, I can only speculate from what I've read about children with cochlear implants (CI) riding on the Spec Ed schoolbus. I was also a Deaf Education teacher in a public school system that received the pupils from Spec Ed buses.” He then goes on to “compare and contrast Deaf and Spec Ed schoolbuses”.

I take issue with many of the things on his list, but the first item in the list especially irked me. At the top of his compare and contrast list is:

1.Deaf schoolbuses are full of children who communicate with each other. Spec Ed schoolbuses are full of children who are so diversely handicapped they do not communicate with each other.

I would like to invite Mr. Schroeder to ride to and from school with Ashley one day and see if his opinion changes.

• The boy that smiles when Ashley is boarding her school bus is communicating with her.



• The child that slides over in his seat to make room for Ashley is communicating with her.



• The little girl who reaches over to touch Ashley’s arm is communicating with her.



• When Ashley takes off her winter hat and throws it at the bus driver, she is communicating.



• When the aide on the bus cradles Ashley’s head during one of her seizures, communication is taking place.



• When the child sitting next to Ashley touches her chin after she burps (to indicate she should say Excuse Me), that child is communicating.



• When Ashley picks up the hand of another little girl on the bus who is crying as the bus pulls away from her mother, Ashley is communicating.



• When the children wave to each other at their home drop off points, they are communicating with each other.



• When Ashley kisses the bus driver’s cheek at the end of her bus ride, the communication is quite clear.

So, Mr. Schroeder, there is gray in the world and in that gray is a beautiful form of communication. Ashley is working very hard to learn and use ASL, but even without the fluency she will one day reach, she communicates quite clearly all day long – as do the other children on the ‘special ed bus’ about which you wrote, though "diversely handicapped" they may be.

The Eyes

By now I should be immune to the stares when Ashley and I are out in public. Ashley's left eye is very, very small and is a strange, cloudy green color. When I first adopted her, I would get upset when people stared at her. Sometimes people would even ask what was wrong with her, and that would make me even angrier. But, over the last 11 years, I have learned to make the best of those situations by explaining how Ashley was just like everyone else except for a few vision and hearing problems. I tried to view each question as an educational opportunity, a way to help people accept Ashley. I wasn't always successful, but there were times I was. But the staring still bothers me, especially the staring without any questions asked.

Yesterday, all the kids, Amy and I had lunch at a local restaurant. Ashley loves to go out to eat, and since our winter vacation was drawing to a close, we decided to celebrate. As we entered the restaurant, we were ushered to a large booth that was connected to another large booth. There was a short panel between the two booths, but it didn't afford much privacy. From the moment we arrived at the booth, an older woman in the adjoining booth stared unabashedly at Ashley. This older woman was having lunch with an equally-aged friend and two children who appeared to be someone's grandchildren. I could almost read the thought bubble over the women's heads - "I'm so glad my grandchildren aren't like that."

Sometimes I will force the issue and ask the staring person if they have any questions I can answer. That will usually stop the staring or open a positive dialogue. But I decided not to do that this time. I wanted our lunch to be a family affair without the intrusion of others. But I don'tknow if that was the right decision because I was uncomfortable during the entire lunch.

I tried my best to make the lunch a positive experience for my family. The wait staff person helped tremendously by assisting with all the special food requests for Ashley. And, it was so noisy in the restaurant that Ashley's happy noises didn't bother anyone. However, I hardly remember what I ate because I was so obsessed with the staring woman.

Why do I still let people's staring get to me? Shouldn't I have been able to move past all that by now? Does anyone have any strategies for dealing with the staring and comments? I haven't made any New Year's resolutions yet, but if I do, I would like to resolve to handle situations like yesterday's lunch in a more positive way.

A Capital Idea

I am finally starting to catch up on my blog reading and really liked this entry from Mommy~Dearest over at The Quirk Factor:

Why I Use a Capital A for Autism

Mommy~Dearest takes what she learned in college about the Deaf community and applies it to Autism. I vote for applying it to even more than that!

Amy bought me a plaque last weekend that shares the same sentiment. Painted beautifully on brick-colored wood is the saying, "Be original - if you're like everyone else, what do they need you for?". And, as Mommy~Dearest ends her blog entry, "There is more to life than just being neurotypical."

I hope everyone has fun this weekend celebrating their own differences!

Dreamcatchers Family Retreat

I wanted to share some photos from the Dreamcatchers Family Retreat held last week. Just a reminder, this is an annual retreat held for families in Virginia who have a family member with deafblindness. Our organization feels it is very important to provide one-on-one childcare for every child attending with their family - whether the child has deafblindness or not. By doing this, we free up the parents to benefit fully from the retreat - not to mention that childcare is a blast for kids and workers both!

"Strong Connections, Stronger Communities"

A story on the NBC Nightly News last night showed that full inclusion can work. Walgreens has planned to hire an 800 person workforce where at least one third of those employees have disabilities. They are currently ahead of that goal with 42% of their employees having a disability. Here is the link to the story:

http://www.msnbc.msn.com/id/19417759/

I certainly applaud Walgreens for this effort and hope they will be a model for other companies. I do have to wonder if Walgreens would be making such a strong effort were it not for the fact that the son of the senior vice president had autism. Would the company have been so progressive if no one at the top had a life touched by disability? When we move to the next level, when companies do something similar because it is the right thing to do and not just a response to a personal involvement, then real progress will have been made.

Dan the Man

Once upon a time, a man named Dan Wilkins started designing t-shirts, bumper stickers, and such. He also started writing and sharing his very enlightened views about our disability culture. I have bought many of his shirts over the years, and even had him design some special shirts. Today I thought I would share some of his work with you. I encourage everyone to consider ordering from his website (http://www.thenthdegree.com/). If nothing else, the looks you get while wearing his shirts will be priceless!!

How Does Your Garden Grow?

As I was walking through my neighborhood last night, I wondered if I could divine anything about the people who lived in the houses by studying their yards and gardens. Some things were very obvious like the yard littered with children’s toys. That, of course, told me that children lived there, and based on they types of toys, I could usually figure out if the children were boys, girls or both. I especially liked the toy-littered yards that had a small, riotous patch of flowers. I imagined the parents of the children wanted primarily to see their children’s minds and souls blooming, but at the same time wanted to share the blooms of nature with them.

The yards which were immaculately groomed – walkways edged, grass precisely mown, hedges all uniformly level – I imagined to be the yards of retired couples, people who had both the time to attend to their yards and the inclination to continue contributing to something growing since their children’s growing had taken them to homes of their own.

I then passed a yard that was nicely groomed but which still had a few weeds and untrimmed hedges erupting into colorful blooms of questionable heritage. That, I believed, was the yard of a single person or a young, childless couple. These were people practicing their nurturing skills with Mother Nature but who still found the time for dating, socializing, and people-hunting.

The very beautiful yard I passed next seemed planned out to the tiniest detail. All the flowers were white. They were planted to best show their full grandeur, and the regimentation of their placement made me imagine that everything in the homeowners life was just as rigid and controlled.

Then came my yard. I slowed my walk as I approached my yard and tried to conceive what others might perceive. My lawn, while taken care of, is not perfect. The beautiful green color comes more from weeds than actual grass, but my oldest son keeps those weeds nicely mown. I have several mulched areas (more mulch means less grass mowing) in which I plant. I like bushes and shrubs that are more free-flowing than precisely shaped (forsythia, for example). I like having flowers, trees and bushes that bloom at various times during the warm weather thus offering an ongoing display of color. And, I like lots of color. I am not a person who spends too much time making sure my flowers color coordinate. I have purples, pinks, reds, whites, yellows and many shades of green. My flowers also come in many different textures. I actually did plan that part of it.

My yard reflects my life. I revel in diversity – many colors, shapes and textures. Ashley has taught me the joy of difference, and the rest of my children have taught me the value of nurturing those differences. I hope anytime someone passes my house and yard they will pause to consider how beautiful diversity can be.

Black Jello

Comedian George Carlin said, “You know what we need – black Jello.” Think of the fun you could have if you served black Jello for dessert one evening! Something totally unexpected can add a special brightness to a day. In fact, as human beings, even though we seem to fight change, we also seem to expect and even want difference sometimes.

Each year, fashion designers struggle to come up with new and unexpected clothing designs. The runways are full of models wearing unique outfits each season. If a particular designer sticks too much to the tried and true, he or she is bashed in the fashion press.

For people fortunate to be able to afford a new car, different designs and a selection of many options and features are expected. We want to experience the OnStar lady talking to us. We want GIS systems to guide us to our destinations. Often we measure our level of success by the differences in our vehicles (think Hummer).

Even our schools embrace difference as long as it is coupled with fun. Remember Spirit Week in School? As the end of the school year and exams approach, school principals allow students to have fun with what they wear to school. There is Twin Day when two students can dress alike, Pajama Day when students get to wear their PJs to class, and Crazy Day when different colored shoes, plaids and stripes, and underwear worn on the outside of jeans show up. The students look forward all year to their Spirit Weeks.

As adults, we take vacations each year to break up the monotony of our work lives. We need something different whether it is a trip to a ski lodge, the beach, or just a week at home doing nothing. Our sanity often depends upon our throwing out the ordinary in anticipation of the non-routine, unexpected joys to be found on vacation.

In every part of our lives we seem to relish the unexpected, the joy of difference, the new, the unusual, the diversity of change – every part, that is, except our acceptance of people who are different, unique and diverse.

Why do we avert our eyes when we see someone who has both eyes closed as they walk because they are blind? Why do we cut a wide swath around a person who has cerebral palsy and walks a little crookedly? Why do we stare at an adult in a restaurant who has to have help cutting his meat because he has very limited use of his arms and hands? Why do we refuse to have a child with significant disabilities in the same classroom as her same-age peers without disabilities? Why do we lock away people who are different and say it is for their well being? We do it because we are hypocrites.

As long as change and difference are comfortable and fun, we have no problem embracing them. Differences in people make us uncomfortable, and God forbid any of us should be uncomfortable.

I am grateful for the people who don’t mind being initially uncomfortable only to find the beauty and joy in diversity. I am grateful for those who embrace difference and find the fun in it. I am grateful for the people who would eat black Jello…

Wash Your Mouth Out

How do offensive words become part of our general conversations? What is the process for a word like bitch or whore to move from something only whispered or shouted in anger to something that teenage girls use to affectionately address each other? Are the words said enough times that their shock value is diminished? Is that what has also happened with the word ‘retard’ or ‘retarded’?

Not a day goes by that I don’t hear or see the word ‘retarded’ used to describe a person (often not a person with any sort of cognitive disability) or an act that a person is performing (“that is so retarded.”). Why doesn’t that bother everyone else as much as it bothers me? I can visit almost any teenager’s Myspace.com page and somewhere on that page find the word ‘retarded’. I’ve been to several movies recently where that word was tossed around like rice thrown at the end of a wedding. Do people not feel that using the word ‘retard’ is every bit as hateful as using the word ‘nigger’? And how did the word find its way into popular jargon anyway?

It’s not just teenagers I hear using the word ‘retard’. I hear their parents and their younger brothers and sisters sprinkling their daily, general conversations with it. It offends me – it hurts me – it angers me. If I hear the word coming out of anyone’s mouth, I will be compelled to share my views with them. If I hear the word used in a movie or TV show, you can bet I will be contacting the creators of that media. I really don’t need to fight anymore battles right now, but I cannot, will not, tolerate the use of that hateful word – spoken innocently or not.

The Best Birthday Present - Friendship

Miles and Allyson made me so happy today. They came to Ashley’s birthday party – and they really wanted to come to her party. Miles is in the 7th grade at Ashley’s school. He is a talented singer and is in the choral group at the school. He was also recently in a wonderful musical production at school – Fiddler on the Roof, Jr. Miles is a very special kid. If you go to the first entry I wrote for this blog, you may read more about Miles. He is Ashley’s dancing partner and he is her friend – by choice.

Allyson is the 8th grade SCA president at Ashley’s school. She is beautiful and special and I’m sure, has a very bright future ahead of her. She is a peer helper in Ashley’s special education classroom, and like Miles, wanted to come to Ashley’s party. Allyson really seems to enjoy Ashley’s company and has learned a lot about her. That was very evident when she walked into the party with a Sponge Bob balloon and a pink tiara for Ash – both perfect gifts!

In a world where many people – both children and adults – just stare at Ashley and even seem frightened by her differences, to have two children embrace Ashley’s differences and welcome her into their world gives me hope for the future.

Thank you, Miles and Allyson! And a very special thanks to their parents also. You have raised children who are making and who will continue to make an important difference in this world!