Friday, May 30, 2008

Thankful Thursday

Yes, yes, I know - it's Friday, not Thursday. Having Monday off this week has thrown my whole schedule off. But regardless of the day of the week, I am still thankful...

  • that those frozen Weight Watcher's pizzas taste as good as they do

  • that Ashley is finally recovering from the very nasty cold she had last weekend

  • for the striking red-headed woodpecker who perches in the big maple tree right outside my window and serves as my alarm clock every morning

  • that I was able to talk to my beautiful 19 year old niece on the phone last night. Well actually, I listened while she talked, but it was still a great time.

  • that Corey was accepted as a teen volunteer (volunteen, as his nametag says) at our local library for the summer

  • for Visine and non-red eyes despite the massive pollen problems we have had this Spring

  • for parents like Vickie Beatty who fight the long battles for accessibility.

  • that I was able to experience the brilliant humor of Harvey Korman. May he rest in peace.

  • for how much better food tastes when it is cooked on the grill

  • that when shoe shopping, I find a shoe I really like the looks of, AND, it fits like a glove when I try it on

Thursday, May 29, 2008

Brett's video

Here is the video of Brett - the young man I wrote about this morning. Thank you, Esbee, for finding this for me!!!

Self-Advocacy Supreme

Brett Branford is a young man with piercing, intelligent brown eyes. He has a smile that wraps itself around everyone in his universe, and the joy that seems inherent in him is transfused into others.

Brett auditioned for So You Think You Can Dance, and was featured on the show last night.. As he stood in line in the cold Salt Lake City weather, he jumped around and did some karate moves to keep warm. When it was finally his turn to take the stage, the other people who had been standing in line with him stood up, high fived with him, and yelled words of encouragement.

Brett said ‘Cue the music’, and started his dance routine, a routine that contained a strong flavor of martial arts and an energy that made me tired just watching. When his audition was over, the head judge, Nigel Lythgoe, “You want honesty, right?” Brett nodded and said “Yes”. Nigel went on to say “You are a really good mover and have excellent musicality. If you were in a club, you would do brilliantly and all the women there would want to dance with you. But, you’re just not good enough for this competition.” The other two judges agreed, but told Brett that he should keep dancing and not give up. The other competitors waiting in the auditorium for their auditions stood and cheered – louder than I’ve heard any cheering since this season’s auditions began.

Just before he left the stage, Brett asked to say one more thing “real quick”, in his words. Without waiting for an answer, he said “I wanted to be here to prove that people with disabilities can have a normal life and can live it.” The crowd cheered even louder than before!

Brett has Down Syndrome. He is a global ambassador for the Special Olympics, and in his mother’s words, is a self-taught advocate. And based on my short glimpse into his life, I believe he is one of the finest self-advocates I have ever seen. He was articulate, more so than some of the other non-disabled competitors. He radiated passion and intelligence, and his grace and style had everyone in the auditorium smiling. The pride his mother felt glimmered in her tears as she watched her son making a difference and touching people’s lives. And he was a damn fine dancer!

As Brett and his mother walked away from the audition location, Brett’s final words were “It’s not about winning or losing, it’s about having fun.” It was obvious that Brett was having fun, and in my eyes, he is indeed a winner.

And once again, thanks to the producers and judges of So You Think You Can Dance. I hope others will follow your example of respect for the talents inherent in all people.

Wednesday, May 28, 2008

Color Me Happy

Several leading child welfare groups Tuesday urged an overhaul of federal laws dealing with transracial adoption, arguing that black children in foster care are ill-served by a "colorblind" approach meant to encourage their adoption by white families. In fact, some of the largest adoption advocacy organizations (North American Council on Adoptable Children, the Child Welfare League of America, the Dave Thomas Foundation for Adoption and the National Association of Black Social Workers) are requesting that another look be taken at adoption of African American children into White families. I don’t think I agree with their statements.

Yes, more minority adoptive families need to be recruited, and yes, money needs to be spent on this effort. Yes, transracial adoptive families need training and counseling, not just before a child of another race is placed in their family, but as an ongoing program. Yes, White families need to be sensitive to the cultural past and present of their minority children, and yes, they should take an active stance to make sure the child maintains ties to that culture. But no, children, no matter what their race, should not languish in foster care waiting for the ‘perfect’ family to adopt them.

Of my four children, three are adopted. I am Caucasian, as is my birth son. Ashley is of Italian heritage. Jessica is Latino, and Corey is Native American. Ashley, Jessica and Corey had negative experiences in foster care. Abuse, both physical and sexual – exposure to drugs and alcohol – lack of services to address their special needs – these are just a small sampling of what they experienced in foster care. Had their social workers been holding out for the perfect family (2 parent, same race), all three may have still been in foster care, or worse yet, institutionalized. My family may not be perfect in some people’s eyes, but my children have all flourished and have grown into remarkable young men and women.

I think it is time to set aside race as an issue in raising happy, healthy children. Training, counseling and sensitivity are definitely needed, but so are permanent homes – regardless of the color of one’s skin, regardless of the texture of one’s hair, regardless of the shape of one’s eyes, and regardless of one’s abilities or lack thereof.

Here are links to two of the articles which appeared on the news yesterday:

MSNBC Article

CNN Article

Tuesday, May 27, 2008

The Tribe Has Spoken

Alex Barton is 5 years old. Last week he was voted out of his kindergarten class because his fellow students felt he was "disgusting" and "annoying". The classroom teacher suggested the vote - the school prinicpal supported the teacher.

Sound unbelievable? Unfortunately, you and I know it is quite believable. Here is a link to a newspaper story:

St. Lucie teacher has students vote on whether 5-year-old can stay in class and make sure you read some of the comments left on the newspaper article ... talk about disgusting and annoying ...

And many, many disability bloggers are writing about this issue. The best, in my opinion, and one which has links to many other blogs is here:

Odd One Out

You will find suggestions for expressing your feelings about all this on the Odd One Out blog. I strongly suggest you do express yourself. Tomorrow it could be your child or mine...

Monday, May 26, 2008

The Miniature Earth

My son, Chip, told me about a website that he found very interesting. When I visited it myself, I understood his interest. The Miniature Earth Project asks the question, "If we could turn the population of earth into a small community of 100 people and keep the same proportions that we have today, what would it look like?"

Also from the website, "The idea of reducing the world’s population to a community of only 100 people is very useful and important. It makes us easily understand the differences in the world.

There are many types of reports that use the Earth’s population reduced to 100 people, especially in the Internet. Ideas like this should be more often shared, especially nowadays when the world seems to be in need of dialogue and understanding among different cultures, in a way that it has never been before.
The text that originated this webmovie was published on May 29, 1990 with the title “State of the Village Report”, and it was written by Donella Meadows, who passed away in February 2000. Nowadays Sustainability Institute, through Donella’s Foundation, carries on her ideas and projects."

A visit to the website will be well worth your time. One of the facts I found most interesting was that out of 100 people, 9 would be disabled. That means almost 10% of the earth's population is disabled? If so, we the members and advocates of that community should have the power to make some major changes for the better.

Friday, May 23, 2008

Blind Dancer

Since Dancing with the Stars and American Idol have ended their seasons, my newest reality show obsession is So You Think You Can Dance. It’s almost a combination of DWTS and AI. Instead of trying to make dancers out of people who have never danced before, SYTYCD starts with real dancers – at least once they pare down the auditions to the best of the bunch. And like AI, only one person wins at the end. The dancers featured in the show are serious about their trade. The ones who make it to the final shows are incredible athletes and wonderful dancers. But one of the young people auditioning last night made the judges and viewers think twice about what it means to be a real dancer.

I don’t remember the young woman’s name, but she was easy to spot in the audition line because of her white cane. She was blind. Diagnosed with retinitis pigmentosa, she had gradually been losing her sight, and was now at the point where she needed either a cane or a sighted guide. Yet she was going to try out for So You Think You Can Dance.

She was escorted to the stage by her sighted guide. She was built like a dancer. She moved like a dancer. She had the determined look of a dancer. And, she danced her audition routine relatively well. She didn’t have quite the refined technique of some of the other dancers, but there was no doubt she had participated in dance instruction and she danced with all the feelings rooted in her heart from the tauntings of the differences of her youth. I was very interested in how the judges would talk to her after her audition.

The judges, Nigel Lythgoe, Mary Murphy and Mia Michaels, all have an extensive background in some aspect of dance. They know what they are talking about and they can recognize talent easily. But they can also be very abrasive to the contestants at times, especially if the contestant is different or really a bad dancer. So I expected the worst after the young blind woman’s dance. But the worst didn’t happen.

The judges were very quiet for a moment, obviously moved by the passion of the young dancer. You could almost see their brains at work trying to figure out what to say. And the first things they all said were dance critiques and nothing else. They set aside the young woman’s differences, and focused on her dance skills, and I believe this is exactly what the young woman wanted. After explaining to her that her skills needed more refinement before she could be considered for the show (and I believe they were accurate in their assessments), you could tell they had more questions – questions about her blindness and her desire to dance despite her disability. They asked those questions in a very sincere and sensitive manner. I had no feelings that they were patronizing her, no feelings that pity was foremost in their minds. They were curious – they asked questions – and they were obviously moved by her passionate answers.

As the young woman was escorted off the stage by her sighted guide, disappointment could obviously be seen on her face, but so could determination and pride. This young woman accomplished was she set out to do. She was treated like every other contestant, and she left with constructive criticism received and her head held high.

I applaud the judges for they actions, and I applaud the young woman for not letting go of her dreams.

Thursday, May 22, 2008

Thankful Thursday

Today I am thankful...

  • for men who still wear well-tailored suits

  • for a glass of iced tea with an orange slice in it

  • that Amy, Ashley, Corey and I were able to finish the 5K race last weekend

  • for days that I can work from home and save on gas for my car

  • for my alarm clock that gently wakes me in the morning with soft music rather than an annoying loud buzz

  • when I can pull out some of last summer's clothes and they still fit

  • for dinner on the patio

  • that Senator Ted Kennedy felt well enough to leave the hospital and even wants to go sailing this weekend

  • for the first grilled hotdog of the summer season - and for everyone one after that

  • for the easier evenings that come with the approach of the school year's end

Money Woes?

As a follow-up to yesterday's blog post, my friend, Jane, shared this news item about making money accessible to people with blindness. Apparently, Jimmy Barrett, a morning radio news personality at one of our local radio stations made the issue his Question Of The Day, and took a poll on how his listeners felt. The lead-in to the poll was:

Is This a Fair Accommodation For The Blind?

A U.S. Appeals Court has ruled that the U.S. Mint needs to make our paper currency more friendly for the blind. The Euro for example comes in different sizes depending on denominations. It also includes a foil seal that a blind person can feel for additional information on the bill. The court is not suggesting that we go back and redo all of our old currency, but they want a plan put together for the future. I wonder what might be next? There are all sorts of areas where we still don't have special signage for the blind. The grocery store, retail merchants. What about using a debit card? How far can we go for those who have sight issues? It's my Question of the Day.

And here are the poll results:


15.85 % - Make the bills for different denominations different sizes.
14.63 % - Make bills with Braille.
69.51 % - It's too expensive to fix. You can't make accommodations for everyone.

Do these numbers surprise anyone? How do they make you feel? Do you agree or disagree?

Wednesday, May 21, 2008

It's Long Overdue

Paper money unfair to blind
Federal appeals court says Treasury Department is violating the law by keeping dollars the same size and feel.

( -- A federal appeals court ruled Tuesday that the U.S. Treasury Department is violating the law by failing to design and issue currency that is readily distinguishable to blind and visually impaired people.

The U.S. Court of Appeals for the District of Columbia Circuit upheld a 2006 district court ruling that could force the United States to redesign its money so blind people can distinguish between values.

Suggested solutions include making bills different sizes, including raised markings or using foil printing which is a method of hot stamping that is tactically discernable.

Judge Judith Rogers, in a ruling on a suit by the American Council of the Blind, wrote that the Treasury Department's failure to design and issue paper currency that is readily distinguishable to the visually impaired violates the Rehabilitation Act's guarantee of "meaningful access."

The Rehabilitation Act of 1973 was originally designed to extend civil rights to disabled individuals and provide them a full opportunity to participate in American society.

Rogers also wrote that Treasury Secretary Henry Paulson has not met his burden to show why changing the money would impose an undue burden.

"A large majority of other currency systems have accommodated the visually impaired, and the Secretary does not explain why U.S. currency should be any different," Rogers wrote in her ruling.

The euro, for example, is one currency designed to be more readily identifiable. Each banknote has a predominant color and large numbers to make them easier to see. Also, the larger the denomination of the euro, the larger the banknote.

"We are very pleased with the ruling," said a spokeswoman for the American Council of the Blind. "We are hopeful that the Treasury Department will now get busy and come up with a plan to make paper money more readily identifiable for the visually impaired people all over the world."

The Treasury Department has been working to improve the nation's paper currency, according to Jennifer Zuccarelli, a spokeswoman for the Treasury.

"Most recently the Bureau of Engraving and Printing contracted with a research firm to conduct a comprehensive study to gather additional data, research and analysis for development of methods to help the blind and visually impaired," Zuccarelli said in an e-mail to "The results of this study will be available by early 2009, and the Bureau will take that information under consideration when they transition in new production equipment in both printing facilities in the following years."

However, Paul Schroeder, vice president for programs and policy for American Foundation for the Blind, a nonprofit group based in New York, said he "would not be surprised" if the Treasury Department appealed the court's decision.

While Schroeder said it would be feasible to address this challenge, whatever solution is ultimately found must "work within a very substantial infrastructure" of U.S. currency.

The suit was originally filed in 2002 by the American Council of the Blind and two individuals with visual impairments, Patrick Sheehan and Otis Stephens.

The appeals court ruled 2-1, with Judge A. Raymond Randolph dissenting. Judge Thomas Griffith joined Rogers in voting to uphold the lower court ruling.

Tuesday, May 20, 2008

Sam I Am

We were standing in the large group of people waiting for the race to begin. I was looking around to see if I recognized anyone, which would have been unlikely given the upscale neighborhood through which the race was being held. But as I looked behind me, I was surprised and excited. There stood the dad and daughter that I had seen at the movie theatre last April. I wrote about what an impact their presence had on me that night. And here they were getting ready to join in the race.

I introduced myself – as did they – and soon it was time for the race to start. Sam, the beautiful daughter’s name, was in a wheelchair built for speed! And the look on her face said that speed was just what she wanted. She seemed to grow more excited as more people crowded around the race starting line, and as the race begun, I could almost hear her giggle.

Obviously Sam and her dad, Vince, were experienced racers. Before the first quarter mile was finished, I knew I would not be keeping up with them. And while I was disappointed, I don’t think anything in the world could have convinced Sam to slow down. So off they went, and it wasn’t until the end of the race that I saw them again. Sam’s grin could not have gotten any bigger!

While cooling down and waiting for the post-race activities to end, Sam’s mother, Barbara, came over and introduced herself. Like her beautiful daughter, her warm smile pulled me into her bright and happy eyes, and I felt as if I had been given a gift.

Once again, Sam and her family lifted my spirits, and reinvigorated my desire to have my children with significant disabilities play an active role in our community. I need reminders sometimes that community DOES mean everyone. So thank you again, Sam, Barb and Vince. You’ve appeared twice now in my life – both times unexpectedly – and twice you have strengthened me through your example. You are indeed a very special family, and I am honored to have met you.

Monday, May 19, 2008

Young Heroes

How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

It started as a school assignment. Myles and his classmates at Pocahontas Middle School – the school that Ashley attends – were studying Anne Frank. The teacher decided that her students would learn best by doing, and so put them into groups and assigned each group the task of coming up with a community service project. A successful outcome of the assignment would have the students learning that one person or a small group of people could make a positive change in their community.

I don’t know what all the student groups did, but Myles and four of his classmates decided to stage a 5K run to benefit the pediatric ward of our local Massey Cancer Center. Each of the five students knew someone whose life had been touched by cancer, and one of their schoolmates is currently battling cancer.

These five 8th graders – realize that means they are 13 and 14 years old - got necessary permits, hired police officers, secured sponsors and recruited participants for the first Wellesley 5K Fun Run. Thousands of participants signed on for the race, and the student’s original goal of raising $5000 was quickly surpassed. By the end of the race this past Saturday, the total board read $15,000+.

Ashley, Amy, Corey and I participated and even dressed up in our ‘hospital visiting’ clothes. So Princess Pink and Glam Girl were back, and this time Lady Ribbonly (Ashley) and the Pink Punk (Corey) came along also.

Besides the wonderful news that over $15,000 was raised for pediatric cancer research, I’m pleased to say that the Pink Brigade actually finished the race and WE WEREN’T LAST, and Myles and his team each received a ‘A’ for the class project!

Way to go, guys! I am so very proud of you all!

Friday, May 16, 2008

A Room with a View

Someone walked into my friend’s house the other day and said “Oh, you must have a child with medical issues.” The child was not in the same room, but there was no doubt that person was correct. While the outside of a house in which a child with significant medical issues lives may look like every other house on the block, the inside is usually completely different.

The living room and family room will often contain special seating, standers, or sometimes even a hospital bed. Syringes and tubing used for tube feedings and medicine administration can be found on the kitchen counter along with cans of Pediasure or other nutritional supplement. The bathroom may have special bath chairs, raised toilet seats, grab bars, or maybe even a lift system. The child’s bedroom will usually house the bulk of the medical equipment – special beds, nebulizers and other life-sustaining electrical appliances, wound dressings, spare G-tubes and trach supplies, and personal care supplies such as incontinence aids.

In addition to all the medical supplies, there are usually special toys and educational devices. Parents go to great lengths to provide and adapt toys that may interest their children and take their minds off all the medical procedures. In short, very little on the inside of the house looks like a typical house. But I don’t think things have to be like that.

I believe that with some creative, out-of-the-box thinking, rooms and houses could be designed to contain all the necessary medical equipment and supplies without those things taking over the inside of the house. I’m sure storage systems could be designed and built that would help parents organize the medical items, leaving children’s bedrooms looking more like a typical child’s bedroom. Just imagine how depressing it would be for you as an adult to have to look at lots and lots of medical supplies all the time when you were in your home.

So, if anyone knows of a creative thinking designer, or better yet, a design student whose opinions and ideas are still fluid and new, please let me know. I have just the house, just the child, for them to showcase their talents. No, it’s not my house. It’s for a child who could use a little more ‘child’ and a lot less ‘medical’ in her life.

Thursday, May 15, 2008

Thankful Thursday

Today I am thankful...

  • That the dragon has been slain – more details soon!
    (pictured is a painting by Rogier van der Weyden, Saint George and the Dragon, 1432-1435, National Gallery of Art, Ailsa Mellon Bruce Fund - Brave Saint George, dressed in shiny armor, is trying to rescue a princess from a terrible dragon that is terrorizing her town.)

  • That today I chatted on the phone with a friend who used to be Ashley’s occupational therapist – the best therapist in the world, may I say – and got the update on her lovely family.

  • That despite my age, I don’t look too bad walking away in a snug pair of jeans

  • For slightly lower pollen numbers this week. Of course, the trade-off has been more rain, but at least my garden likes that.

  • For a very sweet Mother’s Day last Sunday – cards, jewelry and even a pie from Amy!

  • That the “David’s” are the final two in American Idol.

  • And proud that this morning while my children were sleeping, I single-handedly killed a camel cricket that was waiting in my shower

  • For Subway’s vegetable subs with honey mustard

  • That my insurance company has waived the deductible for repairing my car’s windshield after it was broken by a dump truck throwing rocks yesterday afternoon

  • That I finally figured out how to use my Video IPod.

Wednesday, May 14, 2008

A Good Time To Be In Finland

I saw this article on what I believe to be a Finnish newspaper site. Since most of the site was in Finnish, I couldn't really tell, but based on some key words in English, I think that's what it was.

World's First Sign Language Opera Premiers in Åland

The world's first opera performed in sign language premiered on Monday in the Mariehamn, the capital of the Åland Islands. Performers presented the first Finnish opera The Hunt of King Charles.

The opera is part of the national deaf cultural days organised in the Åland Islands, an autonomous province of Finland. The opera was performed in sign language, and while songs were not performed in Finnish, Finnish and Swedish texts were provided.

"Finding the right expressions was very challenging," performer Dawn Jani Birley told YLE's Sign Language News.

Finland's only regularly operating sign language theatre, Teatteri Totti, was responsible for putting on the opera.

The opera, composed by Frederik Pacius, premiered in Helsinki in 1852. The libretto by Zacharias Topelius tells of the adventures of the young King of Sweden, who arrived in Åland for a hunting trip with his entourage.

Tuesday, May 13, 2008

Sharon's Prince

I stepped out of my cultural comfort zone last Saturday by attending a ‘biker wedding’. One of my oldest and dearest friends, Sharon, was getting married for the third time. Although she had, in her words, kissed a lot of frogs, she believes she has finally found her prince. And I agree wholeheartedly with her.

Before meeting John, her prince, Sharon was a single mother of two children, one with very significant disabilities. Her son, Dustin, is diagnosed with deafblindness, intellectual disabilities, and a very severe seizure disorder. Dustin is 15 years old and quite a handsome charmer, but life was difficult at best for Sharon. But John has changed all that.

John loves and adores Dustin and the feeling is mutual. It’s not easy to capture the trust and respect of a child with disabilities like Dustin’s, and it’s not easy to find a lifemate who is willing to share in such a parenting responsibility. So regardless of the biker lifestyle Sharon’s new family will share, the most important thing they will share is love. It was impossible not to see that in everyone’s eyes during the ceremony last Saturday.

I’m so very happy for Sharon, and like another of my single parent friends said, “There’s hope for us yet!” If either of us is lucky enough to find someone like John, our lives will be very blessed.

Congratulations Sharon and John!!

Monday, May 12, 2008

Lost Then Found

We live in a society that seems to have forgotten the virtue of patience. We have drive through fast food, drive through banking, and drive through pharmacies. A great deal of our shopping is done online, and we don’t even have to spend time driving to and from the mall. We TIVO shows on television so we can watch them when it is convenient, and while watching them, we fast forward through all the commercials. We cook a lot of our food in microwaves because it is faster, and we often buy whole meals, precooked, at our local markets. We rush through schedules and plans, keeping calendars that are so full of appointments that we often can’t even read what day it is. In fact, I personally have to schedule my down-time just so I can be sure I get some. But there is one place where having patience has really paid off for me – raising my son, Corey.

I’ve written about Corey three times in the past. First I introduced you to his early life, life before he joined my family. Then I talked about his Eeyoreness, and finally I wrote about his idiosyncrasies. But now, almost three years since he joined my family, I believe Corey is changing for the better.

He seems more settled into his skin these days. He seems happier, except when teenage angst takes over as it will with any teenage boy from time to time. He is getting better grades in school. He has a girlfriend and from all reports, seems to be handling his first boy-girl relationship better than most 15 year old boys. He remembers his chores – most of the time. His personal grooming habits are improving. He seems to be sleeping better. But the one thing that told me a change has really taken place in the life of this once-lost boy is what he wrote in my Mother’s Day card.

Inside the card which he had made for me were the words, “thank you for always being there for me. I love you.”

Yes, patience can pay off – in many wonderful and unexpected ways.

Sunday, May 11, 2008

If Only I Could Hear the Words

It’s Mother’s Day and I am feeling things that are not as warm and fuzzy as this day warrants. I have four children – four children who have made amazing strides under my mothering. My birth son is graduating from high school next year. He has a future before him that is only limited by his own dreams. The three children who have joined my family through adoption are living life is a way that never would have been possible without me. That may sound a little conceited, but it’s true. And not only are my children’s lives enriched by being in our family, my life is enriched more than I ever imagined. So why the less than positive feelings and thoughts?

The only one of my children that has even acknowledged Mother’s Day is my birth son. The other three have not. Due to her cognitive disabilities, Jessica probably doesn’t even grasp the concept of Mother’s Day. Corey, because he spent 12 years with a person who didn’t deserve the title of Mother, has probably buried all the “Happy Mother’s Day” thoughts deep in the recesses of his brain. And Ashley, the child who every day tells me in many unconventional ways how much she loves me, can’t say the words. I will never hear her sweet voice utter “Happy Mother’s Day”.

I know, I know – things could be a lot worse. At the moment, all my children are healthy and happy. Jessica’s problems with aggressive behaviors have subsided somewhat. Corey made honor roll at school, something no one ever believed possible, and Ashley is healthier than she has been in a long time. But this is my day, and if I want to whine, I believe I have the right.

How do other mothers who have children with significant disabilities get through Mother’s Day each year? I really need some pointers.

Friday, May 9, 2008


What a great idea this is...

Wounded Vets Ditch Wheelchairs for Segways


By the time Friday arrives, I am exhausted. Too much to do at work - too much to do at home - not enough sleep - a little Lupus and Rheumatoid Arthritis thrown in for good measure - and I am really dragging. Seems Ashley has a similar problem. Her exhaustion is probably due to having to work really hard at school, especially on vision activities (imagine trying to read a novel with your one good eye one inch from the page and reading one word at a time), her after-school therapies, and the fact that she still has 2-3 seizures a day.

We both love the weekends. We lay around in her bed a lot. We take naps. We turn into slugs.

But the picture above says it all. Ashley was watching the Today Show at 7:30 this morning, waiting for the bus to arrive. Of course, to see the TV screen, she must sit directly in front of the tv, about an inch from the screen. I normally sit beside her and watch fractured little snippets of Matt and Meredith. I got up to retrieve something from my bedroom, and when I came back, Ashley had fallen asleep with her head in my chair.

Yes indeed, we are both very glad that it is Friday.

Thursday, May 8, 2008

Thankful Thursday

Today I am thankful...

  • for the strong scent of honeysuckle each night as I walk through my neighborhood

  • for the lovely lunch I had today with an old friend of mine

  • that my newly-hired assistant began work this week. I'm hopeful that soon I may be able to take a day off!

  • that Maks made a guest appearance on Dancing With The Stars this week. Hubba hubba!

  • that Ashley has been well and very happy all week

  • for Boston Creme Pie

  • that I had the chance to meet and chat with a new family joining our Dreamcatchers Family Support Group. They have a remarkably special young son named Noah, and the whole family, Grandmom included, will be joining us for this year's family retreat.

  • that my son, Corey, picked out a very appropriate card to give his 'girlfriend' for her birthday. If you've read some of my other posts about Corey, you would understand why that is such a big deal.

  • for the relaxing moments I am able to spend watering my flower gardens each evening

  • that I have a door on my office and that I can close it if I need to

Wednesday, May 7, 2008

What Are You Looking At?

Many of us Mom-bloggers have written about people staring at our children with disabilities. My latest entry on the subject was this past January 1st.

My brother, also the single parent of a child with disabilities sent me the link below. It is Kevin Connolly's story. Born without legs, Kevin Connolly snaps photos of people staring at him -- turning the watchers into the watched. Check it out...

What Are You Looking At?

Tuesday, May 6, 2008

Voices that Matter

People often ask my why I blog. I fumble through some answers - "It helps to talk", or "I just enjoy writing", or "It makes be feel connected to people". None of those are very good answers however. I just have a difficult time putting into words why I choose to blog. It's certainly not because I have a wealth of spare time on my hands. Between my full-time job, my volunteer work, my duties as a single mom, and raising four children, spare time just never seems to materialize. Yet still, I somehow find time to blog five days a week.

Yesterday, I was reading an entry from one of my favorite (an apparently one of the world's favorite) bloggers - Dooce, and I discovered she read my mind and put into words, words only a master such as she could write, why I choose to blog. In an online letter to her young daughter, Dooce wrote...

Will you resent me for this website? Absolutely. And I have spent hours and days and months of my life considering this, weighing your resentment against the good that can come from being open and honest about what it's like to be your mother, the good for you, the good for me, and the good for other women who read what I write here and walk away feeling less alone. And I have every reason to believe that one day you will look at the thousands of pages I have written about my love for you, the thousands of pages other women have written about their own children, and you're going to be so proud that we were brave enough to do this. We are an army of educated mothers who have finally stood up and said pay attention, this is important work, this is hard, frustrating work and we're not going to sit around on our hands waiting for permission to do so. We have declared that our voices matter.

So thank you, Dooce, for helping me realize that my voice does matter and that my blog may actually help someone else the way you help me with your writing.

Monday, May 5, 2008

Wax On - Wax Off

Trust – when a person with deafblindness has trust in another - complete trust and belief that the other person offers a total assurance of safety – then all things are possible. That certainty is very difficult for a deafblind person to obtain, but when she does, there is unquestioning reliance. Ashley and Amy, her intervener and friend, are at that place.

While Ashley may question Amy sometimes – as any teenager may question an adult – I know Ashley would place her life in Amy’s hands. And so, last Friday night, when Amy said she wanted to wax Ashley’s eyebrows, Ashley was very relaxed and cooperative. I’m not sure I would have been quite so cooperative had I been in the same place!

Ashley is of Italian heritage. She has beautiful thick, dark, wavy hair. Unfortunately, she is also a tad bit hairy on other parts of her body. Amy was the person who first introduced Ashley to shaving her legs and armpits, so it seems only fitting that Amy is also the person who recommended waxing. Ashley is also very beautiful, but Amy felt that Ashley’s beauty would be further enhanced if her brows were a little better shaped. And so the wax was warmed and the application began.

I’m not sure exactly what I expected, but what I didn’t expect was that Ashley would lie quietly and still on her bed while Amy applied the wax, waited for it to dry a bit, and than yanked it (and the errant hair) off in one quick swoop. After the second brow was done, Amy and I oohed and aahed over how great Ashley’s brows looked, and Ashley just kept signing ‘beautiful’.

My little girl grew up just a little more last Friday night. Not just because she had her brows shaped, but because she took a risk, placed complete trust in someone, and realized that the world can be a safe and happy place when someone loves you.

Friday, May 2, 2008

Queen of Her Castle

I mentioned in my post this past Wednesday how difficult it is to find fitness or exercise programs geared towards children with disabilities. It's also difficult to find places or people who encourage the creative side of children with disabilities. It's a task usually left up to parents or other caregivers, and that disappoints me.

I have seen some incredible works of art created by children with autism and Down Syndrome. I have seen beautiful paintings from children who are blind. And I have read some incredibly well-written poems by teenagers with developmental disabilities. But, more often than not, schools and after school programs dedicate themselves to teaching children with disabilities functional or life skills. While those things are indeed important, I believe that nurturing the ability to express one's self creatively is also important.

This is the first year Ashley has been included in a regular education art class at school, and she is loving it! She has done a remarkable job with her art creations, and she really, really enjoys her time in that class. It's something that I plan to insist on having in all her IEPs from this point forward.

(In the picture above, she is working on creating a castle - not bad for a kid who is blind, eh?)

Thursday, May 1, 2008

I Saw Jack Again

This is my entry for Blogging Against Disablism Day 2008. Blogging Against Disablism Day is an annual event in which disabled and non-disabled bloggers throughouth the world unite in the cause of equality. On My 1st, bloggers will write about their experiences, observations and thoughts about disability discrimination. Links to all the blog entries can be found on the Diary of a Goldfish blog.

I wrote two years ago about seeing Jack, others from his group home, and group home staff having lunch at the mall. Last weekend, I saw them all again, this time at WalMart. Nothing had changed - and that makes me very sad and angry as well. I want to make a difference in Jack's life, but I don't know how. Here is my original post about Jack:

Jack appeared to be finished with his lunch. The only thing in front of him on the table was crumpled paper. His blue lunch box sat a little to his left, and he was pulling the straw in and out of the Styrofoam cup which contained his soda.

Although Kevin’s lunch appeared unopened, his head lay on his right arm which was stretched across the small table at which Jack and Dorothy also sat. Dorothy, who was sitting next to Kevin, folded her lunch wrappings several times over, and then placed them into her green lunchbox with quite a ladylike flourish.

At another small table right next to Jack’s, Kevin’s and Dorothy’s, sat Rico, and two African/American women. The women were talking in a very animated fashion to each other about the problems they had both experienced earlier that day getting Jack to board to van to make the trip to the mall. Rico was quietly humming to himself, swaying almost imperceptibly from side to side.

Jack, Kevin, Dorothy and Rico all wore the badge which distinguished them as people with cognitive disabilities – a fanny pack. In addition to the fanny pack, all wore clothes with no fasteners – elastic waist pants, teeshirts, and shoes with Velcro closures. Each looked rather unkempt – their hair was at least two weeks past needing a haircut; their clothes were not pressed but rather looked almost as if they had been slept in; their white crew socks were pulled up to different lengths, and in Jack’s case, were disappearing into his cheap, generic brand tennis shoes. Dorothy wore no makeup and her clothes were not of the current fashion but rather resembled clothes one’s aging grandmother might be seen wearing. Neither Jack, Kevin, Dorothy or Rico would make eye contact with anyone that passed their tables. They would not, in fact, even make eye contact with each other. All four seemed to be in their mid to late twenties or early thirties.

The two African/American women also wore a badge of sorts – an air of authority, almost like that one would find in a parent minding children, children who at the moment seemed more annoying than charming.

Although I had seen groups of people like this many times in the local malls and restaurants, and I knew that they were group home residents – group homes which served ‘clients’ with cognitive disabilities – today this group of people grabbed my attention and refused to let go. I sat and ate my lunch at a table just behind theirs, and tried to watch them without seeming to stare. And, I wanted desperately to catch Jack’s eye and smile at him. I’m not sure why that urge was so overwhelming on this particular day, but I was disappointed when I never could do that.

When the two women in charge had determined by some signal not discernable to me that lunch was over, Jack, Kevin, Dorothy and Rico were instructed to pick up anything left in front of them and put it in their lunchboxes. All four were then instructed to get up, one at a time, and throw their soda cups into the trashcans. When Jack pushed out his chair to get up before Kevin had actually returned to his seat, he was admonished by one of the women in charge. He obediently sat back down and waited for Kevin to return to the table.

Finally, when everyone’s soda cups had been disposed of, the four clients stood and waited patiently for the two women in charge to give them the signal that it was time to take a stroll through the mall.

I walked slowly behind them, again not wanting to intrude on their group, but wanting desperately to observe a while longer. I guess I expected Jack, Kevin, Dorothy and Rico to become more animated as they strolled through the mall. I thought the window dressings and other people might grab their attention. I almost expected them to head off in several different directions, their individual interests driving their feet forward. But that was not what I saw. I saw the two women in charge leading the slow-moving group, and the four clients trudging slowly behind, not seeming the least bit interested in their surroundings. They were in almost a single file line, and at the end of the line was Jack, working desperately to pull his underwear from his behind where it had apparently gotten ‘stuck’. As much as the group seemed to want to be invisible, the eyes of anyone who passed the group stared for a moment longer than is considered polite, and then were quickly averted.

After the group had made the circular trip through the mall’s lower level, the women in charge herded the four to the exit door and their waiting van. Again, I was reminded of parents getting their children loaded into the family vehicle. Jack, Kevin, Dorothy and Rico were told to put their seatbelts on. When Jack seemed to ignore that request, one of the women in charge, reached over him and buckled the seatbelt for him. Jack immediately unhooked the seat belt, and just the slightest hint of a mischievous smile crossed his lips. The woman in charge buckled him in again, and again Jack quickly unhooked the seatbelt. At this point, the woman in charge admonished Jack and said that if he did not leave his seat belt fastened, he would not get any ice cream after dinner that night. This time, there was no hint of the smile that had previously danced across Jack’s face. He sat grim-faced looking down, and no longer tried to unhook his seatbelt.

Thankful Thursday

Today I am thankful...

  • that my oldest son and I got our vegetable and herb garden planted this week. I just can't wait for some fresh veggies!

  • that my son, Corey, brought home all A's and B's on his report card. This is THE FIRST TIME EVER he has made honor roll!

  • that the chipmunks have started playing in the yard again now that the weather is warmer

  • for Edy's Peanut Butter Cup ice cream. It's not my favorite (Ben and Jerry's Chubby Hubby), but it is a very close second

  • for a day off in the middle of the work week. Yesterday was a teacher work day, and school was not in session. I also took the day off. What a treat!

  • for Lipton Iced Tea To Go - those little packets of tea mix that you can dump into a bottle of water. I especially like the peach flavor

  • when I can delete 85% of the email in my in-box (because it is junk mail and not work)

  • for my leaf blower. It is the fastest and easiest way to clean up after mowing and weed eating.

  • that there are people in the world that are passionate and committed to doing the right thing, and that they are not afraid to stand up and say so

  • for the little country gas station I found last weekend that had gas priced 10 cents lower than any other station