The Tooth Fairy, Evil Gnomes, the Coach and the Cheerleader

Today is Halloween, a celebration with which I have a real love/hate relationship. I have never liked celebrating spooky, evil spirits, and I don’t like having kids ‘beg’ candy from strangers. I do, however, like the dressing in costumes, and especially enjoy the creativity as the costumes get better and better each year. (One of my favorites is watching the Today Show on Halloween morning – always great costumes!).

My kids always dressed in costume for Halloween when they were younger, but I wouldn’t allow evil or scary costumes. And, instead of trick or treating door to door, we would always go to the Harvest Festival held at church. But today I started wondering if I could choose a costume for some of the significant people in Ashley’s life, what would those costumes be?

Amy was easy – she would be the tooth fairy. The tooth fairy works on a reward system, something to which my kids have always responded, but the tooth fairy rewards are easy to earn. Kids don’t have to do anything special, but rather just do what they do best – grow up. The tooth fairy doesn’t favor one child over another – she is a magical creature that loves each child for who they uniquely are – no discrimination, just one snaggle-toothed child after another.

My 17 year old son, Chip, would dress as a coach. He has spent his life coaching his dear sister, Ashley. He was the one who taught her to burp like a boy, ‘moon’ people, eat Cheetos, and make zerberts on his tummy. He draws out the best in Ashley, and is by her side whenever she needs a hug or a kiss. He encourages her to do the things others would say she can’t do. He is her big brother and her life coach!

Alex, Ashley’s speech therapist, would be a cheerleader in a bright uniform waving her pom poms to celebrate Ashley’s every success. There is no reward better for Ashley than praise and acknowledgement of her unique abilities. Alex recognized that from the first moment she began working with Ashley, and as a result, their relationship is rooted in mutual love and respect.

I couldn’t think of any costume better for Ashley’s teacher, Mrs. Artis, than that of a teacher. Mrs. Artis is one of those gems that children find along the way of their educational paths, and Ashley is very blessed to have her this year. Mrs. Artis is open to trying new things, recognizes each child’s uniqueness and tailors her teaching to those unique qualities. She is kind and patient, encouraging and loving. She is the teacher that as adults we always remember and always wish we could go back and thank years later.

Jonathan, the attorney who has fought many battles to ensure Ashley’s rights are respected, would be costumed as a knight. In my mind’s eye, he is always riding fiercely into battle on his mighty steed, ready to do whatever he must to win the rights of the fair Ashley. He is strong and committed with a heart full of compassion. Justice is his code of chivalry, and knowledge is his weapon.

I’ll leave to your imagination the group of people who would costumed as evil gnomes though anyone with a child receiving special education services from their school district would probably not have to imagine long.

And as for me, I think I will dress up as a very tired but extremely happy mother!

Wow, Part 2

The November issue of Richmond Magazine is out and contains one of my blog entries! I mentioned this in early October, and said I would post the blog entry link for those folks who didn't have access to the magazine.

The magazine's story focuses on adoption because November is National Adoption Month. Two families were interviewed about their adoption experiences, and my family's experiences were detailed in my blog entry titled Am I Selfish? I don't have access to my family's picture that appears in the magazine unfortunately.

And as I mentioned in my post last week titled, Needing A Brighter Future, I urge you all to consider whether you have room in your heart and your life for a child waiting for adoption. For more information, one of the best sites I have found is ADOPTUSKIDS, sponsored by the Department of Health and Human Services.

Also, don't forget to check out A Home For The Holidays - The Dave Thomas Foundation for Adoption and Children's Action Network are pleased to present the ninth annual "A Home for the Holidays" television special on CBS December 21, 2007 at 8 p.m. EST / PST (7 p.m. CST / MST)!

Tuberous

One of the tools Ashley uses during her speech therapy sessions is a Mr. Potato Head toy. With all his different, colorful body parts, the opportunities for both receptive and expressive language are many. However, Ashley had her own agenda in last week’s therapy session with Mr. Potato Head.

Instead of putting Mr. P. together in the traditional fashion – you know, eyes where eyes are supposed to go, arms coming out of the side of his ‘body’, feet on the bottom, mouth on the lower front, etc., all Ashley wanted to do was stick different sets of eyes in every hole on the brown spud. She wanted no parts of arms, legs, hats, mouths, ears or mustaches. It was eyes everywhere.

Sometimes trying to figure out how her creative mind works is difficult. By channeling Mr. Potato Head into a vegetable with many eyes, was she making a statement about her own vision impairments? (For new reader, Ashley is totally blind in her left eye, and her clinical vision measurement in her right eye is 20/2000. She can focus at about an inch in front of that eye.) Does she wish she could stick in some more eyes – eyes which would help her see better? Or was she just making a joke – you know about potatoes having “eyes”? Either scenario is quite possible with Ash.

All the talk about Mr. Potato Head did make me start to look around the Internet to see if I could purchase just eyes for him. While I didn’t find anyone who was selling just the eyes, I found lots and lots of different accessory kits for the dapper spud, and I learned a lot about Mr. P’s life.

Did you know Mr. Potato Head has his own website? Check it out and find out everything you ever wanted to know about his origins. Also, Mr. Potato Head was the first toy ever advertised on TV – I didn’t know that. Mr. Potato Head has also been a drug smuggler, a racist statue, a balloon in a parade and the subject of a comic strip, and is the star of many YouTube videos. Here is just one…. And finally, I found a really good joke about the tuber:

Why is Mr. Potato Head the perfect man?
He’s tan, he’s cute and if he looks at another woman, you can rearrange his face!

And here I was thinking Mr. Potato Head was JUST a toy…

Needing a Brighter Future

I heard a story this morning as I was driving to work that reminded me once again why I was led to adoption. The story was about 12 year old Jordan. When Jordan was 10 years old, and had been in the foster care system for many years, he was featured on a public service announcement about foster children. Jordan said, “I'm 10 and I really hope I'm adopted by the time I'm 11." Patrick and Patty Smith saw that announcement, and decided to adopt Jordan, who by that time had already been in a dozen different foster homes. The Smiths, along with Jordan, built their dream house, and Jordan finally had a permanent home – until the fires came.

The Smiths, all three of them, lost them dream home to the California wildfires. Jordan, because his new family knew he had never really had anything to call his own, let him grab a few things as they were fleeing the fire. But lost in the fire were Jordan’s birth certificates – both his original one and the one from after his adoption, listing his new parents and his new name – and his “Book of Jordan”, information and documents from the time he spent in foster care. But what wasn’t lost in that fire, and what can’t be destroyed, is the love this new family shares. According to Patty Smith, "Jordan just keeps telling us, 'It'll be OK, Mom. It'll be OK.' He's been through this before." "Jordan has been the best thing that's ever happened to us," Patrick said. "... He's been the world to us, and helped us out through a lot of stuff. He's holding us together through this."

Jordan is one of the lucky ones – a child languishing in foster care who finally found his family – a child who can look to the future with confidence that he is in a very special way connected to others. That connectedness is what the rest of the children still in foster care long for desperately.

As a child growing up, I remember the family tree project from elementary school that fascinated me so much as I added in aunts, uncles and many grands and great grands. I remember the anticipation of holidays and knowing I would soon be in the company of my many cousins, cousins just waiting to make new memories with me. I looked forward to high school graduation, knowing my family would be there, would be proudly standing and clapping for me, and would probably have a party waiting afterwards. When in college, I knew that I always had a home to come back to, a place to spend winter and spring breaks, a place to plan my after-college future. And as an adult, I have absolutely loved sharing my children with their grandparents and other relatives. Children in foster care don’t have these things, and it is, in my opinion, heartbreaking.

I urge each and every one of you to examine your lives and try to find a place in your family for a child in foster care. Teenagers, especially, need homes. They know the clocks defining their futures are ticking, and those futures hold little promise. Help become the glue that provides the connectedness these kids are so desperately seeking. Give them brighter futures and help them rewrite their pasts with a new family’s history.

I can guarantee two things if you consider this challenge. First, it won’t be easy. In fact, it may be very, very difficult for everyone involved. Second, it will be worth it, and your lives and the life of a child will change for the better. Make a difference…please.

Dear School District,

You’ve been in the news a lot this past week, and for once the spin is not too bad. Seems there is a little girl in one of your elementary schools, an elementary school in perhaps the most affluent part of the county, who has a rare muscular disorder. Exposure to UV rays of the sun can make her disease worse. According to this little girl’s mother who asked for your help, you decided to build a canopy over the school’s playground so the little girl could join her classmates outside. In the mother’s words, you, school district, said “We would do this for any child. Our public school systems are here to accommodate the needs of all children.” Really? Did you say that?

I’ll come back to your purported statement in a minute, but right now, let’s talk about this playground canopy a little more. Seems it cost $24,000. Sounds like a lot of money for just a canopy, but considering where the school is located and the cost of housing in that area ($500K and up), $24,000 doesn’t sound so bad. Of course, some of the families living in that area would disagree with me, but so far I haven’t seen anything reported about other ways those families feel the $24,000 should have been spent. Some of those dissenting families have expressed concern over the looks of the canopy. Seems they don’t think it fits in well with their expensive bricks and brass. But I’m sure as the trees grow around the playground, the canopy will seem less an eyesore to them. And, according to on poll taken on a local radio station today, over 80% of listeners supported the building of the canopy. It's been quite a while since you've seen spin as good as that, I imagine.

Now, back to your statement about accommodating the needs of all children. I am very happy to hear that, and truly hope it will extend to all areas of your educational mission. In fact, your mission statement, published on your website, does indeed support your accommodation philosophy:

Mission Statement
We believe that:
• we can teach every child
• every child can learn
• knowledge is power
• student success requires a shared responsibility by students, teachers,
parents, and community
• every child deserves respect
• every child is unique and has a right to be
• every child can contribute to society
• children will meet our expectations
• given the knowledge and opportunity, children can shape their own futures
• the process of schooling must change to be effective in the 21st century

Our mission is to provide a nationally recognized educational program and staff to develop 21st-century citizens who can achieve full development of their potential and, as critical thinkers and lifelong learners, exhibit through their character and values a commitment to their community and the nation, as well as personal integrity which will enable them to meet the challenges of change.

So, just for the record, can I now expect you to accommodate my daughter’s needs? You know, the one who’s educational plan calls for a sign language assistant for the ENTIRE SCHOOL DAY and for whom you are only providing such support for part of the school day, and the one who was left ALONE in the classroom yesterday while everyone else went to the pep rally – ALONE as in no one, not staff, teacher, or even another student was with her – you know, my daughter who is deafblind and epileptic. Should I expect this new accommodating philosophy for ALL CHILDREN to begin today? Just wondering…..

Thankful Thursday

Today's Thankful Thursday list comes from guest blogger, Lynnette. Lynnette is Brooke's mom. For frequent readers, you may remember my posts about Brooke here, here, here and here. I'm happy to report that Brooke is home from the hospital, and she and her mom are happily settling back into the routines of their lives.

Lynnette wrote me this morning and told me that my Thankful Thursday posts really helped her through the last few very difficult months. And today, she wants to share her own list...

• Good friends like you who help keep me focused on the positive through difficult times


• Waking up during the night and checking on my child, only to find her sleeping peacefully!


• Fall weather!


• Rain - finally!


• Great kids like Brooke and Ashley who inspire me to be a better person each day


• A weekly dose of Grey's Anatomy


• My favorite dancer on Dancing with the Stars - (Maks)


• That the weekend is just a day away and I can have my child and my house all to myself!

And Lynnette's closing words about Brooke and all they have been through...

"The glass is definitely half full (rather than half empty) and I am just so happy to have Brooke home! Caring for her is a joy - teaching her is an even greater joy - and loving her is my greatest joy of all."

Welcome home, Lynnette and Brooke! I love you both and can't wait to see you again soon!

Prevent Bullying

October 22-27 is National Bullying Prevention Awareness week. The best collection of resources for parents, children and school districts can be found at attorney Peter Wright's website. Even if you think your child is not a victim of bullying, or is not a bully, a visit to the Wrightslaw site will be a real eye-opener.

Crazy Tuesday

This week is spirit week at Ashley's school. Each day has a different theme - Monday was pajama day, Tuesday was crazy day, and Wednesday was dress up day. Thursday and Friday are yet to come...

I must admit I was reluctant to take Ashley to the end of our driveway yesterday morning to wait for the bus. She had on plaid shorts, a striped shirt, two different Converse shoes, and her hair was spiked with gell. I'm the type of person that has to iron everything before wearing it, and 'matching' is my mantra. So, besides worrying what my neighbors would think of me sending my child to school looking they way she did, just looking at Ashley's "crazy" outfit caused me almost physical pain. I know, that's a really strange way to be, but I have never once claimed to not be strange. Check out my post on dressing my animals for Halloween should you need further proof!

Thankfully, Amy (pictured above with Ashley) was available to meet Ashley's afternoon bus, and to help Ashley change clothes before I arrived home! Oh, and just in case you were wondering, Amy dressed up for crazy day also :)

Friday Evening Fun

Last Friday evening, I was warmly welcomed by the Down Syndrome Association of Greater Richmond. I was there to do a presentation on Virginia’s school assessment program for children with significant disabilities, but I joined everyone for dinner before the presentation.

So many things about the group impressed me. First, I was struck by how welcoming everyone was. Parents, who may be new to the world of Down Syndrome, or any disability for that matter, can really benefit from organizations such as this, but those parents are often reluctant to visit. I’ve been to group meetings myself where all the members have been friends for a long time, and as a newcomer, I felt uncomfortable – like I didn’t understand ‘the rules’. The difference between that type of organization and one like the Down Syndrome group is that new parents don’t experience those uncomfortable moments. They are made to feel part of the whole from the moment they step through the door. Those are the types of organizations who keep new parents coming back for more meetings.

Secondly, I really liked seeing parents and children together in the meeting. Families shared dinner and before that, children played and ran around the meeting room. It was like a very large family gathering. I don’t enjoy organization meetings where the children are handed off to childcare workers from the very beginning of the meeting. After dinner, and during the business part of the meeting, I understand childcare taking over. The children have more fun, and the adults can concentrate on learning and working together. But Friday night, families came together to catch up and watch their children at play. It was a lot of fun!

Finally, I was glad to see so many families with young children at the meeting. As I wrote earlier this month, new parents are often so overwhelmed with the major changes taking place in their families that they don’t join organizations. But here at the Down Syndrome Association of Greater Richmond, it appeared more parents of very young children were in attendance than families with older children. That is a very good sign for this organization and for the families that need support.

So, many thanks to the Down Syndrome Association of Greater Richmond! I enjoyed spending Friday evening with each and every one of you, and I hope you learned from my presentation.

This Madness Must Stop

First Ashley X., then Katie Thorpe, and now Olivia. This madness MUST stop! The following article appeared on the LiverpoolECho site in the UK. After reading the article, I suggest you visit the blog of Benefit Scrounging Scum - she has an excellent analysis of these issues.

Give my child a hysterectomy
Oct 9 2007 by Vicky Anderson

A LIVERPOOL mother has approached Alder Hey Children’s Hospital to see if they will perform an operation to stop her disabled nine-year-old daughter going through puberty.

Kim Walker’s request on behalf of her daughter, Olivia, who is mentally and physically disabled, echoes that of a similar case in Essex which is currently being legally assessed.

Mrs Walker, from Halewood, has contacted Alder Hey to assess the family’s options. Olivia cannot walk, talk or otherwise communicate, and has epilepsy and requires 24-hour care.

The options being assessed for Olivia include contraceptive implants, which her mother has ruled out, and a full or partial hysterectomy. Mrs Walker said: “I was thinking more of the procedure where they leave the ovaries in, but she’ll still have to go through some sort of hormonal change, so it’s like Catch 22, so I’m still thinking about it.”

The family have faced criticism from disability rights groups for contemplating the decision, but Mrs Walker said: “These are people who probably haven’t got special needs children and don’t understand what the parents go through on a day-to-day basis. I can’t see why they should have an opinion on it unless they are going through the same thing.”

(Mrs. Walker - I DO have special needs children - daughters, and I most definitely do understand what parents go through on a day-to-day basis. I do have an opinion on this matter, and what you are trying to do is WRONG.)

An Alder Hey spokesperson said the hospital had no plans to undertake the procedure, adding such an operation would not be done until all aspects of the child’s well-being had been considered and all other options exhausted.

Olivia’s dilemma follows that of Katie Thorpe, 15, who has severe cerebral palsy and whose mother Alison this week said she wanted her to have an operation to prevent her suffering the discomfort of periods. But a charity for the disabled warned it could infringe the girl’s human rights and set a “disturbing” precedent.

Miss Thorpe, of Billericay, Essex, said: “I think there needs to be choice for individuals. For my daughter this, I think, is the right decision and one we have thought long and hard about.”

Both cases mirror that of Ashley X, the nine-year-old American girl with the mental age of a three-month-old baby, who had surgery to keep her as a child.

Her parents said keeping her “frozen” as a girl would give her a better life, but the move provoked worldwide controversy.

Blondeness Takes Control

I swore I would never be someone like Paris Hilton or Brittany Spears - a person who dressed up animals. For years, I have passed by the doggie ballerina dresses and the kitty Burberry trenches. But today I was weak. I walked past the animal Halloween costumes in Target, and I became just another blonde idiot. I bought costumes for my dog and two cats. Lizzie the dog will be a pumpkin come October 31st, and Winky and Kitty Carlyle will be chickens.

Please slap me if I start to say "That's Hot" or if I make an appointment to have my head shaved.

Many Hands Blankies

So much about the story presented in the link listed below makes me smile and brings me hope for our society. It’s well worth the few minutes it will take to read it, and the entire experience is something not often seen in the media today. Karen Meyer, a reporter for the ABC affiliate in Chicago, reports on disability issues. Ms. Meyer is herself disabled, and each week reports on stories centering around the disability culture. I especially liked the story presented this week because it highlights employability of people with developmental disabilities beyond the traditional sheltered workshop approach. Make sure that in addition to reading the article that you click on the video of the newscast on the right. In that video, you will see and hear Ms. Meyer relating the story in both voice and sign, and the entire thing is also closed captioned.

Fun Quilts Offers Sewing Opportunities to People With Developmental Disabilities

Oh, and one final comment, I *love* that someone believed in the people in the video and their creative abilities. One thing I feel is often overlooked in a person with a developmental disability is their need for creative expression.

Thankful Thursday

Today I am thankful...

• That a small tweak in a medication can have significant positive results


• For Stuffy’s Great Garden sub sandwich – yummm!


• That my son, Chip is making it through the Scarlet Letter for his AP English class despite all his protests about not liking the book


• That my cat, Kitty Carlyle is once again on watch detail for those pesky camel crickets that try to come into our house this time of year


• For Ashley’s teacher this year, Mrs. Artis


• That both my main home heating system and my backup home heating system passed their annual Fall checkup. Let the cold weather commence!


• For my flannel sheets that have gotten even softer with each passing year


• For Halloween candy. Halloween is still two weeks off and we have been through two extra large bags already. At least when I have to buy more for the Trick or Treaters, it should be on sale.


• That adding a second litter box seems to have solved my kitty dribbling problem


• For fat, round, very orange pumpkins

Chicken and Mashed Potatoes with a Side of Guilt

For years, 17 to be exact, I have been made to feel guilty for having the television on while my family had dinner together. I really felt it was an accomplishment to have all my children sit down as a family for dinner seven nights a week, and we continue that practice even now – regardless of whether the TV was on or not.. Our big dining table is in our great room – as is the television. So, having the television stay on just seemed a natural extension of our family life. I always make sure that family-friendly fare is being broadcast, and more times than not, the shows I choose open up lines of communication between me and my children at the dining table. But each and every one of those meals brought a modicum of guilt as a side dish.

Well yesterday I was vindicated! According to an article in the New York Times, “the family meal is what counts, TV on or off.” Researchers from the University of Minnesota found that families ate healthy with or without TV. According to the article, “While many parents worry about what their kids are eating — vegetables versus junk — a voluminous body of research suggests that the best strategy for improving a child’s diet is simply putting food on the table and sitting down together to eat it. ”

So there! When we sit down to our healthy dinner tonight, we’ll be watching something TIVO captured last night when everyone was off doing their homework, and we’ll be enjoying at least thirty minutes of family time together – this time without that serving of guilt!

What's Your Definition?

Deb*or*ah [deb-er-uh, deb-ruh]
-noun
1. mother of four children, three of whom have disabilities
2. tireless advocate for her children and others with disabilities
3. advisory board member
4. trainer
5. blogger
6. ex-police officer, current computer engineer, avid reader, gardener, hiker, beach lover, and basically normal person with typical dreams and desires

---

In the dictionary entry for my life, I wonder if I am defined totally by my children. For the past 17 years my name has changed from “Deborah” to “Chip’s Mom”, “Ashley’s Mom”, “Jessica’s Mom”, or “Corey’s Mom”. When people describe me to others, phrases such as “single mom”, “that mom with disabled kids”, “disability advocate”, “disability organization board member”, “trainer in disability issues”, and “disability blogger” are almost always used. Articles have appeared in many publications about me, but they are always written in the context of my family. My immediate circle of friends are people like me – people with a commitment to the rights of the disabled and those who have children with disabilities themselves, and most of the publications I receive in the mail have something to do with disability issues. For the majority of my life, excluding the past 17 years, was I just a work in progress, an incomplete dictionary entry?

I certainly don’t mean to imply by the statements and questions above that I am unhappy with my life as it now exists. Although the battles have been many and still continue each and every day, I am happier and more at peace with myself than at any past moment. I do feel overwhelmed at times with the insurance fights, the school battles, the medical visits and hospital stays, all of which accompany a significant lack of sleep. I wonder what it would be like to be *just* a parent of four teenagers and facing the traditional issues that come with parenting emotionally immature, know-it-all, hormone-ravaged children. I imagine a life without concerns surrounding IEP meetings – a life without extreme debt due to fighting for the legal rights of my children – a life where physical accessibility wasn’t foremost in my mind whenever I planned an outing or a vacation. I imagine a life where I might occasionally date, might meet a man that didn’t run as fast and as far as he could after meeting my children. And I imagine a life where I didn’t fear my own death – not because I am afraid of dying, but because I am afraid of dying and not being able to care for my children with disabilities. I am afraid what will become of them at that point.

But even with all those worries and battles, I see the difference I am making for both my children and for others with disabilities. All I have ever really wanted from my life was to make a difference – to repay the debt of being allowed to exist and flourish in this crazy wonderful world in which I live. I truly believe I am making a difference, and that is why I am happier than I have ever been – no matter how I am defined.

The Doctor Will See You Now

We live in a city that has many very good hospitals. One of those hospitals is a teaching hospital, and many of the doctors that my children visit were graduated from there. It’s an inner city hospital which means should you have to visit the emergency room, you may find yourself sitting next to someone who has been shot or stabbed, and you will most assuredly hear very colorful language floating through the waiting room. One statement I have heard many times is that if someone is hurt very badly or is really ill, this particular hospital is the place to go. I agree with that assessment. But being in this hospital does present at least one challenging decision making opportunity.

The very nature of a teaching hospital is that you have a lot of medical students that want to experience and learn from the patients. If you happen to be a patient that has an unusual or rare condition, one that doctors, let alone medical students, may have few chances to view, you will be swamped with visitors in white jackets during your hospital stay. Such has been my experience with Ashley’s visits.

Besides being deafblind, which in itself is a very low incidence disability, Ashley is diagnosed with juvenile xanthogranulomas. This condition presents with multiple tumors, and very, very few people in the world have been diagnosed with this. For Ashley, it meant she had tumors on her skin, under her skin, on her brain, ears, and eyes, and on other vital organs. She has had two brain tumors removed in the past, and currently has three more. She has also had her gallbladder removed due to tumors. The normal (seems an odd word to use) course of the condition is that tumors stop forming around age 3. Ashley, at age 12, still has tumors forming. She is the oldest documented person with this condition. You can imagine the number of visitors she gets when she goes to this particular hospital.

The challenge for me is weighing the value of the ‘teaching’ with the issue of privacy and Ashley’s need for recuperation. My experience has been that the doctors doing the teaching get a little miffed if I request visits be limited. During one particularly long stay at the hospital, I finally had to ask that the student visits be limited to once in the morning for 10 minutes and once in the afternoon for 10 minutes. The senior doctors did not appreciate that at all, and I think my actions ultimately had a slightly negative effect on the care that Ashley received during that hospital stay.

I wonder if there are any classes for the medical students on sensitivity training and respecting a patient’s right to privacy?

The Sounds of Silence

Ann Coulter, a right wing political commentator, has once again moved into the media spotlight. In her recent remarks on Donny Deutsch's "Big Idea" CNBC show, she said essentially Jews should become Christians so they can become "perfected." The outrage of many Americans is being voiced across news outlets even as I write. I have seen Ms. Coulter on TV several times in the past month, and each time she annoys me more. Her views are NEVER my views, and I often believe she is spouting off just for the sake of getting her face on TV. She seems to really enjoy the media spotlight, and it certainly gives her ample opportunity to show off her very short skirts and spiked heels. But today, I decided to do some searching and see if she had ever lambasted people with disabilities. I didn’t uncover much, and what I did uncover was very subtle. But, I think it gives a very clear window into her level of disability awareness.

As some of you may know, Ms. Coulter had a lot to say about the United States Supreme Court decision in the PGA Tour v. Casey Martin case involving Mr. Martin’s desire to use a riding cart during PGA events. Mr. Martin has a disability. The Supreme Court found that Mr. Martin was within his rights to use a riding cart. (A very good analysis of the case can be found here). Ms. Coulter, however, feels the Supreme Court’s “arrogance knows no bounds. The Supreme Court has now presumed to tell the PGA, Jack Nicklaus and Arnold Palmer what is "essential" to the game of golf.” But her most telling comment, at least to me, was what she said about the American’s With Disabilities Act – “Justice Anthony Kennedy has described the ADA as "a milestone on the path to a more decent, tolerant, progressive society" -- which tells you about all you need to know. Also a milestone on the path to a less free society.” It’s the last part of her statement that tells me all I need to know – she believes the ADA is a milestone on the path to a less free society.

If Ms. Coulter believes Jews need ‘perfecting’, one can only imagine what she thinks about people with disabilities. I think it is well past time for the news media to stop giving air time to her. As George Duncan commented on a Diversity.Inc blog, “You should understand that Ann Coulter is a professional performer ... one-trick pony who entertains at conservative events by making deliberately obnoxious statements. The more space you give her, the more you validate her act. The best response to her is silence.”

It’s time for silence.

Thankful Thursday (on Friday)

I know - it's really Friday - but I was sick yesterday and took the whole day off from writing. So, here is this week's Thankful Thursday on Friday list. Today I am thankful...

• that after 73 days in the hospital, BROOKE IS HOME!!


• for freshly-baked, gooey chocolate chip cookies


• for James Taylor concert tickets! Amy and I are going to see him next week!


• that the weather has finally gotten cooler. Richmond set a record for heat earlier this week, and today I had to turn on the heat in my car for my morning commute.


• for home-made cinammon applesauce, made with the apples my family picked a couple of weeks ago


• that Ashley slept seven straight hours last night! We've had some rough nights this week, and she and I really needed a break from all her middle of the night partying


• for cough drops


• for my fat cat, Winky, who likes to sleep right next to my feet at night. She's better than a hot water bottle anyday!


• that my next door neighbor, Mr. Baldwin, is back home after his hospital stay last week


• that my son, Corey, has brought his failing English grade up to a 'C'

Craving Converse

As is typical in children with dual sensory impairments (deafblindness), Ashley has many issues relating to how things feel on her body. When I first adopted her, she didn't like being held or dressed, and the only time I could cut her fingernails was when she was under anesthesia. Unfortunately, she was under anesthesia frequently. She and I worked with an occupational therapist for many years, and she has gotten over a lot of her sensory defensiveness. The only issues which remain involve her wearing a hat of any kind and trying to keep shoes on her.

Ashley is a master at getting out of any style of shoe. I've tried them all, wishing the entire time that I could get her to wear some of the cute little girl shoes that are in stores. But, when she was three years old, I found a style of shoe that worked - shoes she actually liked and would keep on. Those shoes are Converse Hi-tops.

I don't know if the canvas fabric of the shoes is more comfortable to her or if the hi-tops provide extra support for her ankles. What I do know is that she really likes them, will keep them on, and loves getting new ones - and the wilder the better. Lucky for her, Converse.com offers many diffferent fabrics. She currently has 10 pairs, and we check back often to see new releases. The thing that makes me happiest is that they are reasonably priced and washable.

She may just be the next Imelda Marcus - Queen of Shoes!

My Deaf Darling

As the parent of a Deaf child, I am frequently asked why I won’t get a cochlear implant for Ashley. Most of the time the people doing the asking are parents who have already made the decision for their child, and the child has been implanted. Many, if not most, of these children with implants are in classrooms that do not allow sign language, and have teachers who will cover their mouths while speaking so the children won’t be tempted to lip read. The one and only focus for children with cochlear implants is to get them to speak and therefore make them more ‘normal’. I just don’t happen to see anything abnormal about my Deaf child, and don’t see anything that is broken and needs fixing with a cochlear implant.

I know the issue of cochlear implants is a sensitive one, especially among the Deaf community. One of the most vehement speakers against cochlear implants is Carl Schroeder from Hawaii, and one of his recent blog posts is on the Making of Hearing Supremacy. Anyone who reads his post will have no doubts where he stands on this issue. While I am not quite yet at the same level of outrage that Mr. Schroeder is, I do agree with most of his comments. As a parent, one of the most unfortunate results of cochlear implants is the reduction of classrooms specifically for Deaf children who prefer sign language.

My school district is a perfect example. When Ashley was in preschool, she was in a classroom with a teacher and aides who signed. All the children were learning sign also. I believe it was one of the happiest times in Ashley’s young life. Then as first grade rolled around, my school district made the decision to focus on children with cochlear implants. Entire classrooms were built around these children, and teachers for the hearing impaired were told they could adapt or leave their position. No longer were there classrooms for children like Ashley, Deaf children who love their language, their native language, and children who could not understand why the changes were being made. Since the time of that switchover, Ashley has yet to have an appropriate level of support in sign language.

While I do not feel the need to consider cochlear implants for Ashley, I understand why some parents do. These are caring, loving parents who want to do the best for their child. I can’t fault the intentions of most of these parents. However, I do wish more information could be shared with them before they make the decision to implant, especially a very young child. I would like for those parents to consult with Deaf adults, people who are a part of the Deaf community. I would like the parents to have the entire picture and a balance of viewpoints before making this life-altering decision.

I love my Deaf child – everything about her. I don’t feel she is broken or needs fixing. She is teaching me everyday the beauty of her language, and I will always be so grateful and so proud that she is my daughter.

Mother Gone Mad

I'm very disturbed by the number of stories like the one linked below that are popping up almost every day in the news. And what about the ones that don't make the news.

Mother Seeks Girl's Hysterectomy

Did this mother take her cue from the Ashley Treatment, or has she just gone mad? In the story, Katie's mother says "She's not going to get married and she's not going to have children...Katie is not going to become a normal adult."

Excuse me, I am not one to often use off-color language, but how the H*LL does this mother even begin to know what is normal?

Mrs Thorpe, the mother, also said her daughter would not be able to ask for help or even let people know what she was feeling. If that is true could it be because NO ONE HAS EVER ASSISTED HER IN DEVELOPING A COMMUNICATION SYSTEM!

This child has cerebral palsy and her mother wants to rip out her uterus! What if she had migraine headaches - would mumsy be wanting brain surgery?

I agree with Simone Aspis, of the UK's Disabled People's Council, "As far as we're concerned that is totally and utterly unacceptable."

Soldiers United for a Cause

As my state department of education works its way through the process of reauthorizing its special education regulations, I have begun to pay closer attention to the parents who are the strongest advocates for their children with disabilities. These are the parents who respond quickly when an email request for advocacy and support is sent. These are the parents who show up for public meetings and support group sessions. These are the parents whose names show up in the letters to the editor of our local newspapers. I could probably count the number of these parents I see and hear from frequently using just my fingers and toes.

Where are the new parents – the ones whose children have just recently been diagnosed? And where are the parents of the young adults, children who are moving into the work force, or worse, institutional care? I have a theory that might provide answers, but I hope I am wrong.

I believe the new parents are overwhelmed. Their pain is fresh – their view of the future is overwhelming. They may be so busy just providing care for their infant’s medical needs, that thoughts of school and work never enter their minds. They may still be in denial, denial which would have to evaporate as they begin to consider the future. Their lives present day to day challenges, and they do not yet have the skills to tackle those challenges head on, much less add on the additional challenge of advocacy. They are still riding rough emotional seas, and no safe port is in view.

The parents of young adults, I believe, are worn out and down. They have fought the battles for so many years, and probably have lost the majority of them, and their energy and will to keep fighting is waning. While they still want what is right and good for their older children, they are battle-scarred and just plain weary. They are perhaps disillusioned, and rightly so. It’s difficult to keep standing when you are constantly being knocked down.

The parents I see still advocating strongly are the parents of children in the middle years – third grade through ninth or tenth grade. These parents still feel they can make a difference, can change the course of a bad educational system. And I believe they are right. What we have to figure out though is how to keep the experienced parents still in the battle, and to bring the newer parents, the reinforcements, along a little quicker.

As parents of middle year children, I believe we need to continue our advocacy as we also nurture and support the newer parents and find ways to help the experienced, perhaps jaded parents. Will having to do all that in addition to continuing our own advocacy efforts be tough? Yes, indeed, it will. Will it be worth it? The answer is, in my opinion, a resounding YES.

"Fair"-ness

I often wonder why it is that some people are just normally respectful and accepting of people with disabilities, and others act as if they will ‘catch’ something if they get too close to a child in a wheelchair. My family and I visited the State Fair yesterday, and I saw many of both types of people.

Is it ignorance that causes some people to shy away? Or, were these people raised in families and environments that fostered beliefs that anything different was bad? Have some people never been around others with disabilities (a situation I find difficult to believe), and therefore they are uncomfortable and don’t know what to say and do? Or is hatred and rejection just rooted deep in their souls?

Some of the people we encountered at the fair seemed to just naturally accept people with disabilities. I never saw the moment of hesitation in their eyes, the wondering of what to say or do. I didn’t see questioning stares or attempts to figure out what was ‘wrong’ with my child in a wheelchair. The State Fair can often have its share of unique individuals – both workers and guests – so maybe people with disabilities don’t stand out as much in such an environment.

Even as I pondered all these questions, I found my own beliefs and prejudices called to order. I never would have expected the multi-tattooed, multi-pierced young adult to be one of the people who would be accepting. But he was. He held a building door open for the family in front of me, and then continued holding it for my daughter and the rest of my family. He smiled slightly as I thanked him, and then he went along his way with nary a questioning or demeaning look in his eyes. Then there was the teenager working at one of the booths. Teenagers can often be the cruelest to other children with differences, so as we approached her booth, I held my breath. At the teenager’s booth was a spinning wheel. Based on where the spin stopped, the fair guest would be asked a question, and if they got it right, would be awarded a prize. Often at such booths, the workers assume my daughter just enjoys spinning the wheel. But the teenager yesterday took the spin seriously, asked my daughter a question about hurricanes (while Amy interpreted), and then didn’t seem the least bit surprised when my daughter answered the question correctly.

Perhaps continued modeling of full inclusion by my family – we never make assumptions about one’s ability to participate in everything the family is doing – will help change a few of those people who are uncomfortable. Perhaps when they see the joy, the camaraderie, the high expectations, and the reality of inclusion as a positive force in society, there will be more people like the teenager and tattoo/pierced young man. That is one of my many dreams for my children, both those with and without disabilities.

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!

Thankful Thursday

This week I am thankful...

• That Brooke is scheduled to leave the hospital on October 11th. It’s been a long, hard almost 10 weeks in the hospital, but there is now a light at the end of the tunnel. As soon as they get home and settled into their new routine, Amy, Ashley and I will be joining them for a girls-only slumber party – wine, hot tub, Tivos of Max from Dancing With The Stars, and lots of chocolate!


• That my school district realized that they had a major problem with a bus driver and have since provided another bus with wonderful staff on it to transport Ashley from school each afternoon. Transportation management has even been calling me each day to make sure things are still running smoothly.


• For Halloween Candy!


• For the red and gold leaves that are just starting to dot my yard. In a month, I may not be as thankful for them all, but right now, they are beautiful.


• That Amy and I were able to get tickets to see James Taylor in concert!


• That Ashley’s cold has so far not turned into an ear infection.


• That Ashley is loving her new art class at school, and that she is so proud of her artwork.


• That my brother, by using his excellent advocacy skills, was able to convince his daughter’s school district to provide math instruction to his daughter – instruction that was listed in his daughter’s IEP but which the teacher was flat out refusing to provide.


• For corn dogs, funnel cakes and fried Pepsi (yes, you read that correctly) at the Virginia State Fair.


• That my son, Chip, made A’s and B’s on his school interim report card. He is carrying all advanced placement/honors classes and such grades are an incredible achievement!

Wow!

Richmond Magazine is going to print one of my blog entries in their November 2007 edition! I won't tell you which one because I want you to check out the magazine. A picture of my funny little family will also be included.

(After the magazine is published, I will link to the blog entry for those folks who don't have access to the magazine.)

Madame Secretary

The words are all the right ones. The voice is the voice from the top. Why then do our children have to fight for their every right to an appropriate education?

---

PRESS RELEASES
U.S. Secretary of Education Margaret Spellings Delivers Remarks at the 2007 Special Olympics Global Policy Summit in Shanghai

FOR RELEASE:
October 3, 2007 Contact: Samara Yudof or Rebecca Neale
(202) 401-1576


Leading a presidential delegation to the 2007 Special Olympics World Summer Games in Shanghai, China, U.S. Secretary of Education Margaret Spellings today delivered remarks at the Global Policy Summit on the Well-Being of People with Intellectual Disabilities. Following are her prepared remarks:

Thank you, Andrew Williams, for introducing me. It's an honor to be here with you and so many other athletes and supporters of Special Olympics. I'm also honored to be leading a global delegation of so many talented people from the worlds of sports, academia, and business.

I'd like to thank China for hosting this first-ever Global Policy Summit on the Well-Being of Students with Intellectual Disabilities. It's hard to think of a better setting for this event than the Special Olympics.

This morning, I had the honor of meeting the Team USA athletes, including golfer Jason Plante. In addition to competing here today, he is an honor-roll student, and he also plays on his high school golf team, which is among the best in the state. In Jason's opinion, "there is virtually no difference" between learning a sport and learning in school. He's absolutely right. Both take discipline, focus, practice, and high expectations. This summit is a great opportunity for all of us to work together to help more students around the world succeed and thrive as Jason has.

By celebrating the shared joy and mutual respect that sports can foster, Special Olympics have helped people around the world learn to think more in terms of capability than disability.

For example, at the first International Games in 1968, many people thought that swimming pools were dangerous places for people with disabilities. So American Red Cross lifeguards stood shoulder to shoulder around the pool to make sure all of the swimmers were safe. But they never had to jump in. All of the 325 athletes in the pool were perfectly able swimmers.

I think everyone who was there that day probably learned a valuable lesson—don't underestimate what people with disabilities can do.

Unfortunately, when it comes to education, it's taken a long time for people in my country to learn that same lesson. For many years, a lot of well-intended people have done a whole lot of standing by the edge of the pool, worrying whether students with disabilities would sink or swim.

In the late 1960s and early 1970s, when Special Olympics was just getting started, most schools in my country closed their doors to young people like the athletes who are competing here in Shanghai.

More than a million children in the U.S. were excluded from school because of their disabilities. In many states, families faced the stark choice of keeping children at home or sending them to institutions. As a result, many children with intellectual disabilities lived far from their families in conditions that no person should have to endure.

Today, we're still far from perfect. But my country has seen the kind of progress that all of us should strive for and that all of us can achieve. In the last half-century, we in the United States have shifted our national conversation. Instead of asking whether students with disabilities can learn, we are now talking about how to make sure all students achieve. Not in institutions or special facilities, but in their own neighborhood schools, right alongside their peers.

That's a dramatic change in a very short period of time. And we owe much of this progress to people like Eunice Kennedy Shriver, the founder of Special Olympics, who is a longtime champion for people with disabilities.

Just last week, President Bush signed an executive order to continue and expand the responsibility of the President's Committee for People with Intellectual Disabilities. Mrs. Shriver and her brother, President John F. Kennedy, were driving forces in creating this committee, and I'm proud to be a member today. I'm also honored to have both Mrs. Shriver and her son, Special Olympics CEO Tim Shriver, with me on President Bush's delegation to this year's summer games.

In 1962, an exhausted mother called Mrs. Shriver on the phone. She said she didn't know what to do. No summer camp would accept her child because of his disability. Mrs. Shriver told her, "You come here a month from today. I'll start my own camp.

Just like that, she started a free camp right in her own back yard. That camp for 35 kids has grown into this year's largest sporting event in the world: the Special Olympics International Games. As you've heard, nearly 7,500 athletes are competing here in Shanghai. Together, they represent more than 2.4 million people who participate in 15,000 events year-round, worldwide.

As Tim Shriver says, from its very first days, Special Olympics has sent out the message that people with disabilities "deserve the right to participate and compete, on the playing field and off." Tim, you've clearly been listening to your mom's good advice! I'm sure you also learned a thing or two from growing up with that camp in your back yard. I learned the same lessons from working at the Handy Andy grocery store when I was growing up, where several of my co-workers had intellectual disabilities. We worked hard, we got a lot done, and we had a great time together in the process.

So, how can we work to make sure that people with disabilities can participate and compete in school, just like in Special Olympics?

First of all, policymakers and educators like us must take responsibility for educating every single child, instead of picking and choosing. Second, we must think in terms of inclusion—starting with the assumption that students should learn side by side in the same classroom, whether they have disabilities or not. And finally, in addition to including students with disabilities, we must make sure they're learning, too. In other words, it's not OK to tell some kids they can finger paint while everybody else learns how to read.

"In the United States, two landmark laws have helped us put these ideas into action. The first, now known as the Individuals with Disabilities Education Act, or IDEA, was signed into law by President Gerald Ford in 1975. This law guarantees that students with disabilities have access to a free and appropriate public education. It also requires parents and teachers to develop a customized plan to meet the unique needs of every student in special education, which can mean providing help in the form of speech therapy, a classroom aide, or other kinds of assistance."

Research shows that when schools separate students with disabilities from learning alongside their peers, their teachers and even their parents are more likely to see them as "more disabled." But when you put everyone together in the same classroom, both teachers and parents are more likely to see students with disabilities as the capable people that they are. Most importantly, the students themselves are more likely to see themselves for the capable people they are and so are their peers.

Want to know what else happens when you put everybody together? Students with and without disabilities both do better in school.

In sports terminology, you might say that thanks to IDEA, students with disabilities can get in the game. But as any athlete can tell you, access to the field will only get you so far. To reach your full potential, you need to have high expectations for yourself. And you need people around you who are dedicated to helping you achieve the highest possible goals. We've all seen many examples of that here at the Special Olympics.

When it comes to education, we can put high expectations into action but not only ensuring every child has access to the classroom, but by making sure every student learns. That's what my country's most recent education law is all about. It's called No Child Left Behind.

Families of children with disabilities are among the greatest supporters of this law. Why? First off, it requires schools to measure every child's achievement and to publish results for every student group, including students with disabilities. As a result, educators are focusing on these students more than they ever have before. They are also developing better ways to measure student achievement, and better ways to help every child achieve his or her potential.

Most importantly, No Child Left Behind is proving that if we raise our expectations, our children will rise to the challenge. As my mother used to say, nothing sells like success. In other words, once people see one student with a disability who is succeeding in school, they realize that other kids can achieve the same results.

In fact, our latest national report card confirms that No Child Left Behind is making a significant difference for children with disabilities. Results released just last week show that between 2000 and 2007, the percentage of U.S. fourth graders with disabilities who have basic math skills doubled, from 30 to 60 percent. That's 140,000 more kids with fundamental skills! In many cases, students with disabilities are outpacing their peers who do not have disabilities.

Now that we're making strong progress in K-12 schools, the next frontier is college. Especially now that higher education is becoming more and more essential for everyone in our global knowledge economy. That's why I'm pleased to announce that my department will provide 1.5 million dollars to create a Technical Assistance Center to help colleges and universities develop and expand programs for students with intellectual disabilities. By collecting and sharing information about effective coursework, supports and services, and community outreach strategies, the center will help more students enjoy a meaningful and rewarding college education.

Just like Special Olympics, we in education must always seek new adventures and challenges for what we can achieve, and for what our children can achieve. Any athlete here will tell you that is the only way to improve. And every competition here proves just how right they are.

Over the last few decades, Special Olympics has started to transform the way people around the world think about what people with disabilities can do. Together, we can work to do the same in education.

Thank you.

Color Me Happy

My school district is not big on inclusion for children with significant disabilities – not even for the ‘easy’ subjects like art and music. In elementary school, a child’s IEP may reference inclusion in art, music, and lunch, but by the time middle school rolls around, most children with significant disabilities spend their time in segregated classrooms. Their lunch is eaten either in the classroom or at a special table in the lunchroom, and physical education becomes adaptive PE, which means only the kids with significant disabilities participate. Parents can advocate for inclusion during their child’s IEP meetings, but they are often given dozens of reasons for not trying inclusion. At the most recent IEP meeting for Ashley, I insisted that she be allowed to join a regular education art class. I believe that because we had much more immediate issues to address in that IEP meeting, my request was granted so we could move on to the real fight of the day. So yesterday, Ashley went to art class for the first time – ever.

An inclusion attempt usually goes one of two ways – both of them extreme. The attempt can be a success for everyone involved, or it can be a dismal failure for the child who should be included without even a request being made. I believe inclusion cannot be successful without the proper supports in place. Yesterday’s inclusion attempt for Ashley was successful because her wonderful aide made sure the proper supports were in place.

Amy, Ashley’s aide, did everything right yesterday in art class, and as a result things went well. Amy introduced Ashley to the class just as any other child joining a new class after the start of the school year would have been introduced. She told stories about Ashley and the things that Ashley enjoys doing. She emphasized the ways in which Ashley is like the other students in the class, yet she also very matter-of-factly shared Ashley’s differences with the class. She showed the utmost respect for Ashley, the teacher and the other students, and as a result, I believe respect will be the cornerstone for everyone’s interaction for the future in the class. Amy explained how some of the art activities and materials will have to be adapted for Ashley due to her vision impairment, and she encouraged the other students to be comfortable asking questions.

When the class was over, Ashley walked proudly back to her segregated special education classroom, held her artwork out for her teacher to see, and smiled her biggest smile of the day.

The Very Beginning

“She’s not a pretty baby”, the social worker told me for the third time. “Her left eye is at least twice the size of her right. Are you sure you want to meet her?” I hid my impatience with a calm smile and nodded yes. I was ready to go and meet this baby that was available for adoption.

We drove just a short distance from the social services office, and the social worker slowed in front of a row of townhouses. They were all the same except for their different colored shutters, making them look like crayons in a Crayola box. The social worker parked her car, got out and headed towards the Raw Sienna townhouse. She knocked on the front door, and it was immediately answered by a rather large, disheveled woman. This woman, introduced to me as Linda, the foster mother, headed up a flight of stairs and we followed behind.

The room in which we stopped, a living room I assumed, was small, very cluttered with furniture, and dark because all the drapes were drawn closed. I almost tripped over a porta-crib set up in the corner of the room. We all sat down in the small, crowded room and Linda stepped to the porta-crib and lifted a baby out. Although this baby was 18 months old, she seemed more the size of a 8-9 month old baby. She was incredibly beautiful!

An unspoken rule about who was permitted to hold the baby was transmitted though the room with eye contact between the social worker and the foster mother, and the baby went to the waiting arms of the social worker. I was told this was Ashley, and that Ashley, according to the foster mother, ‘had many needs’ and would have these needs for the rest of her life. She talked further about the difficulties of caring for Ashley and how many doctor appointments she had every week. She told me Ashley wouldn’t eat and didn’t sleep well. She told me that Ashley was fussy and hadn’t met any of the developmental milestones a child her age should have already mastered. She seemed to be trying to scare me or talk me out of wanting Ashley. It didn’t work. I loved her from the moment I laid eyes on her…

Making A Statement

Whenever I am looking for that special teeshirt, I often visit CafePress. They have a great collection of disability-related shirts. Here are a few of my favorites: (you can click on any of the pictures and see a bigger image)