Sisters

To my sisters on this journey; Amy, Nikki, Amy, Stacy, Gina, Christina, Michelle, Lisa, Cindy, Carey, Jackie, Georgia, Sherry, Heather, Joanna, Anne, Amanda, Rhonda, Amy, Margaret, Nicole, Lin, Cheri, Jami, Vickie, Kathy and countless more...

Sisters

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience…experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist' s offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we sisters keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

Hey look, a post!

Wowzers, long time no blog. I did not fall off the planet, although many of my friends may think that I have. The past two months have been totally crazy. First we had the Walk for Autism. We raised about $28,000!!!!!!! Fantastic, considering it was our first year. I was beyond thrilled with the way the day turned out.

Then, just five days after the walk I had a hysterectomy. I know, unexpected, right? Well, I'd had some inklings for awhile that something was wrong with my "girl parts" but I didn't realize how bad it was till everything was removed & examined. I won't go into gory detail, but let's just suffice it to say that only 3 weeks post-op and I am already feeling significantly better.

In there we also had Knitter's Day Out, where I taught two classes (fantastic experience!), the Big Sock came to Uncommon Threads, Beastie lost THREE teeth, Medium child got a new car (a Honda Civic), Homecoming came & went, we finally sold the Excursion and I cast on about 8 new projects and completed maybe two. A pretty typical two month period.

I'm finally feeling like myself again and more regular blog postings should be happening from here on out again. Meanwhile, here are a few pretties to keep you guessing...

Amazing Race will feature contestant with Aspergers

Meet the teams on new season of 'The Amazing Race'

By DERRIK J. LANG (AP) – Sep 9, 2009

LOS ANGELES — One team will have a leg up on the competition in the upcoming season of "The Amazing Race."
Two of the Harlem Globetrotters are among the 12 teams starring in the 15th edition of the CBS reality show, which premieres Sept. 27. Nathaniel "The Big Easy" Lofton, 28, from New Orleans , and Herbert "Flight Time" Lang, 32, from Brinkley , Ark. , believe their experience will help them dominate this season's course, which spans eight countries in 21 days.
"I've been to about 65 countries around the world," said Lang. "I definitely think that gives us a little bit of an advantage when we're traveling to different countries, as far as knowing how to interact with different cultures, managing our money and communicating with taxi drivers and whoever else we need to help us get from Point A to Point B."
Justin Kanew, 30, and Zev Glassenberg, 26, best friends from Los Angeles who met while working as camp counselors at Camp Greylock in Becket, Mass., are more excited about the journey than the possibility of winning the show's $1 million grand prize. Glassenberg has Asperger's syndrome, a milder form of autism.
"I don't think the fact that I have Asperger's will hinder me," Glassenberg said. "I do tend to think outside of the box, so it might help us. It'll be weird going into these social situations around the world. I might not take it all in right away, but I know I'm racing, so I'll probably get past it really fast."
Other teams include Maria Ho, 26, and Tiffany Michelle, 25, who are professional poker players.
"It's obviously different from competition at the poker table," said Ho, who came in 11th place at this year's World Series of Poker in Las Vegas . "It's outdoorsy. This is physical and mental, but we will definitely be applying whatever skills we have as gamers to this competition and push ourselves in different ways that we're not used to doing."
Among the teams who are romantically linked: a feisty engaged couple from Boston; grade-school sweethearts from San Diego; a dating couple from San Francisco who met online; married yoga instructors from Encino, Calif.; dating aspiring country singers; and a former Miss America and her husband.
"They are now suddenly putting their relationship under a microscope," said host Phil Keoghan. "I personally wouldn't want to do that, but teams do, and audiences love to watch it, and there are a number of teams on this season that are coming to the race to test their relationship, and it sounds like some of them might get quite testy in the process."
For the first time, one team will be booted at the start of the trek, and racers will have to tackle the Switchback, a new twist that sends teams back to one of the series' most challenging "roadblocks." Executive producer Bertram van Munster said the racers will set off from the Los Angeles River , then first head to Tokyo to complete several zany tasks.
"Have you ever seen Japanese tourists following a tour guide with a little flag?" said van Munster. "Well, our contestants are going to be the tour leaders. Each team is going to have to run a group of 20 tourists through the center of Tokyo as fast as they can. Whoever brings their entire tour group to the Pit Stop first will be the number one team."

Seaside gets $30M to pursue new autism drug

Seaside gets $30M to pursue new autism drug
September 17, 2009 — 9:04am ET | By John Carroll
http://www.fiercebiotech.com/story/seaside-gets-30m-pursue-new-autism-drug/2009-09-17

Cambridge, MA-based Seaside Therapeutics is emerging from stealth mode this morning with an announcement that it has raised $30 million to pursue mid-stage clinical trial development on new therapies for Fragile X Syndrome and autism. Founded back in 2005 and built around an early-stage program licensed in from the defunct Sention, Seaside's 22 staffers are pursuing one of the most puzzling diseases on the planet with an approach that they believe has the potential to significantly improve the lives of autistic patients and their families.

Seaside isn't your average biotech, as CEO Randall L. Carpenter, M.D., made clear in an interview with FierceBiotech. This new venture money was put up by an unnamed family investment firm that has provided the bulk of the $66 million raised to date. And the firm has committed to fund the company through to profitability, "if necessary."

"It allows us to decouple ourselves from the market," says Carpenter, who has been working with Mark Bear, a neuroscience professor at MIT, on developing these new therapies. Seaside is currently enrolling patients in two trials for Fragile X and autism. To date, says Carpenter, only one drug--the antipsychotic risperidone--has been approved for autism symptoms. And the initial efficacy endpoint that they'll be studying is the same: to improve irritability in children and adolescents who suffer from autism. But Carpenter says Seaside's therapeutic approach has the potential to do much more.

"It may allow individuals to speak, to learn normally," he explains. "It may enhance their ability to relate to the environment, be more calm and less anxious and potentially more interactive. We're seeing profound effects in our animal models; how that translates to humans is what we'll find out in the next year or two."

The company's lead therapy, STX209--which inhibits glutamate signaling in the brain--entered a Phase II clinical study in adults and adolescents with Fragile X in December 2008 and a second trial in adolescents with autism spectrum disorders was launched in March 2009. Seaside intends to expand both studies to include children as young as six years old during 2009. Data from both Phase II studies is expected in early 2010.

Read more:
http://www.fiercebiotech.com/story/seaside-gets-30m-pursue-new-autism-drug/2009-09-17#ixzz0RNRRP8Ek

Not trying to stir drama, but...

If you wanted a reason not to shop at Abercrombie & Fitch, here is a good one:

http://www.startribune.com/local/south/57918152.html

Girl: I was treated like a 'misfit' at Abercrombie & Fitch

Abercrombie & Fitch was fined $115,264 for refusing to let an Apple Valley teen help her autistic sister try on clothes.

By JAMES ELI SHIFFER and JANE FRIEDMANN, Star Tribune staff writers

Four years after Abercrombie & Fitch refused to let a teenager help her autistic sister try on clothes at its Mall of America store, state officials have fined the company $115,264 for discriminating against a disabled person.

The hefty penalty from the Minnesota Department of Human Rights pleased the Maxson family of Apple Valley, which was forced to push hard for satisfaction after the retailing giant refused to apologize for the incident and even questioned whether the girl was disabled. The fine was levied in June but made public this month.

Michael K. Browne, the department's legal affairs manager, said the size of the penalty is the largest in at least two years. The amount reflects his agency's effort to prevent future discrimination of this kind, as well as the cost of litigation forced by the "pushback" from Abercrombie & Fitch. "We don't want anything that happened in this case to repeat itself," Browne said.

Molly Maxson, then 14, was with her older sister on a back-to-school shopping trip in August 2005 when a store employee told them they couldn't both enter the fitting room because of store policy aimed at preventing shoplifting. The store refused to relent even after the sister, and later the girls' mother, explained that Molly couldn't be alone because of her disability.

The confrontation humiliated the girl, who told a psychologist hired by Abercrombie & Fitch that the incident made her feel like a "misfit."

"She was singled out and required to hear her sister and mother repeatedly ask for accommodations based on her disability, in front of a long line of customers, at a store that markets itself to young people as a purveyor of a particularly desirable 'look,'" administrative law judge Kathleen D. Sheehy declared in her ruling.

When several complaints to the company were ignored, the girl's mother, Beth Maxson of Apple Valley, took the case to the Minnesota Department of Human Rights.

The investigation encountered strong resistance from Abercrombie & Fitch. The retailer, based in New Albany, Ohio, posted $3.5 billion in sales last year and has been the target of several discrimination lawsuits. In 2004, the company agreed to pay $40 million and set up a diversity program to settle a class-action suit charging the company with discrimination in hiring and employment. The suit had accused Abercrombie & Fitch of excluding minorities from its sales floors and adopting a virtually all-white marketing campaign. The company admitted no wrongdoing but agreed to new policies to promote diversity.

In the Maxson case, the company denied that the girl suffered from a disability until the first day of an administrative law hearing in April. She was diagnosed as autistic at age 2.

In her ruling, Sheehy concluded that Abercrombie & Fitch violated the Minnesota Human Rights Act and ordered the company to pay the girl $25,000 and cover the family's attorney fees of $41,069. The company had to pay the state a $25,000 fine and cover other expenses totaling $24,194.

Abercrombie & Fitch also was ordered to post signs in its seven Minnesota store explaining that disabled individuals should seek out a sales associate if they need an exception to the company's policy allowing only one person in the fitting room at a time. The company also must provide an hour of training for all employees in Minnesota who interact with the public to make sure they understand how to help disabled customers.

A spokesman for Abercrombie & Fitch did not have an immediate response Tuesday afternoon to the state's action.

The judge found that the store policy allowed fitting room employees to accommodate disabled shoppers, but that employees interpreted that to mean people with visible handicaps.

Abercrombie & Fitch isn't challenging the findings of fact in the case, but the company has appealed the penalties and corrective measures, Browne said. Sheehy denied the company's request to lower the attorney fees, finding that Abercrombie & Fitch "transformed this case from a relatively simple matter into the expensive proceeding it has become."

In an interview Tuesday, Brittany Maxson, now 21, said that the 2005 shopping trip was supposed to be an occasion for Molly to find clothes that would allow her to fit in better with other kids at school.

"Because of her autism, she's very vulnerable," Brittany said Tuesday. "In social situations, everything is new to her. It's very unpredictable how she'll act. ... We've never left her alone, even at home. We never let her go anywhere by herself. We've always kept a close eye on her."

As the sisters went from store to store in the Mall of America, a clerk at another store also questioned the girls when they entered a fitting room together, but consented immediately when informed of the girl's disability, Brittany said. But at Abercrombie & Fitch, store employees would not budge, even after the mother called the company's customer service hotline.

In its legal battle, the company challenged the family's claim that Molly was disabled, requesting medical and school records and subjecting the girl to an interview with a forensic psychologist, her mother said. Molly told the psychologist that the incident made her feel "bad" and "scared," and that she never wanted to shop there again.

"I am a misfit at Abercrombie," she told the psychologist.

Molly's mother said she's "very thankful" that the state took the actions it did to enforce the Minnesota Human Rights Act.

"I refuse to have a belief that this law has no meaning," Beth Maxson said. "We're going to continue to move forward, hoping this never happens to anyone again."