Saturday, August 30, 2008

I'm In Anchorage! (click to read the article)

Too much! I ended up in the Anchorage Daily News with a blurb from my HuffPo piece on Sarah Palin yesterday. Someone get me a sweater! Who says I never get to leave CT? BTW, doesn't Anchorage look beautiful in that photo?

Friday, August 29, 2008

My latest on HuffPo:

"Gov. Palin: Is Not Taking Maternity Leave a Conservative Value? Click HERE. Why not mix it up on a Friday afternoon before a long weekend?

McCain Chooses VP Runningmate: Governor Sarah Palin of Alaska! Interesting...

Pro-Life, Member of the NRA. Staunch conservative and former Miss Alaska runner up. Is she supposed to pull in disgruntled Clinton voters? We've had a female VP candidate a couple of decades ago. This isn't new or fresh. Although she's young at 44 and certainly a newcomer to many Americans, myself included. She's the mother of 5 children, the youngest of whom has Down syndrome. Stay tuned!

I do have a question for my conservative readers. Gov. Palin has five children, quite young. How do you feel about them basically losing a mother for four years, if McCain/Palin is elected?

Another question: Her baby has Down Syndrome. Could you leave your special needs child for a dream job? From an article: The governor said she won't take a maternity leave but will bring Trig with her to work. Her spokesperson later clarified, at Palin's request, that the governor will take time off for medical appointments, physical therapy and whatever Trig needs.

Thursday, August 28, 2008

The Girls' First Day of School. So Why am I so Fried?

The girls started school today. Seems like they each had a good day. The don't/can't tell me about their day verbally. Even Miss G. who is quite verbal, struggles to tell me about her day. I can tell by their smiles, their walk and their demeanors.

I had a full day to myself today. I tried to do a month's worth of work in 5 hours. I pretty much screwed up everything I touched - even the things I didn't touch. I stayed up too late last night watching the Democratic convention. I'll stay up too late tonight watching Obama give his speech. At 6:00am I was taking pee samples - in the semi-darkness, which was requirement for this test. At 8:15am I was on the road for my run (Thompson Twins and Morrissey in my ears on my Stiletto.) Played offense and defense on the blogs. Worried about the kids' day. Pulled weeds. Do you notice that no where have I mentioned writing? That starts next week. Tomorrow I'll screw up more things. Joy.

Tuesday, August 26, 2008

School starts in just two days! I'm eager to return to a routine. It's so hard for the girls to have a lot of downtime - and we've had 3+ weeks of it since ESY ended. The weather is perfect for back to school - almost crisp! I hope it lasts awhile, although I'm sure we'll have Indian summer too.

I'm pretty relaxed this year - it's our third year in the district. I've been pretty vocal about how happy I am in this school district. We've had so many moves and changes over the years. It's wonderful to feel like an "old-timer!" I'm finally feeling settled after what seems like a lifetime of upheaval.

I know each of the girls' SPED teachers - I know 2 of the 3 paras (not sure who Bella has yet. Tomorrow is her open house.)

Our new house is so much easier for the buses - remember our other house in this town - where people would blow PAST the bus and almost ram into it as it stopped on that very busy street? Here, I can see the bus chugging up from the breakfast table and walk the kids right out! I'm letting Mia and Gianna walk themselves from the door to the bus, trying to remember they are growing older and are quite capable! Bella? I'm still holding her hand, she's my baby!

It's wonderful to have a "pit-free" stomach. The only butterflies around are in my backyard, not my stomach. Hooray!


Mom, Guard Your Daughter

From the prestigious New England Journal of Medicine:

Despite great expectations and promising results of clinical trials, we still lack sufficient evidence of an effective vaccine against cervical cancer. Several strains of human papillomavirus (HPV) can cause cervical cancer, and two vaccines directed against the currently most important oncogenic strains (i.e., the HPV-16 and HPV-18 serotypes) have been developed. That is the good news. The bad news is that the overall effect of the vaccines on cervical cancer remains unknown.

How will the vaccine affect preadolescent girls, given that the only trials conducted in this cohort have been on the immune response?

Vaccinated women may feel protected from cervical cancer and may be less likely than unvaccinated women to pursue screening.

How will the vaccine affect other oncogenic strains of HPV? If HPV-16 and HPV-18 are effectively suppressed, will there be selective pressure on the remaining strains of HPV? Other strains may emerge as significant oncogenic serotypes.

So why has the AAP made Merck billions by adding this unproven vaccine to it's "recommended" (meaning the doc is going to give it to your daughter unless you put up a stink) schedule? Click HERE for the full article.

Monday, August 25, 2008

When Did Measles and Chicken Pox Go From Entertainment to Epidemic? (From

Vaccine_record_2"Most any child can have the mumps
Or even German measles
So here's a record of my health
From Chicken Pox to sneezles!"

Click on the photo to view it in full size. Use the "%" to scale it to fit your screen.

By Kim Stagliano

This poem is from the vaccine record sheet of a 30-something Age of Autism reader, as kept by her mother starting in 1969. Take a good look at this darling sheet of paper. Then read her mother's notations.

We're reading the media alerts on "measles epidemics" that loom because of non-vaccinating parents. Remember when these diseases were featured on sitcoms?

Arthur_chicken_poz_2 Leave it To Beaver: Beaver Gets the Chicken Pox

Friends: The One with the Chicken Pox


Arthur's Chicken Pox

The Brady Bunch: Is there a Doctor in the House?

Were kids dying of measles in America when Leave it to Beaver was airing? How about Arthur the Aardvark and his sister DW contracting Chicken Pox? Did PBS, the station that brought you Mr. Rogers and Elmo, mean to scare children with an episode about a deadly disease or simply explain to them that they too could manage the itch and discomfort of the Chicken Pox. Just last week, I heard a Frank Sinatra song called, "Ev'rything happens to me," where he sings, "I've had the measles and the mumps." When did measles and chicken pox go from entertainment fodder to epidemic fear? And who's behind it? Everything Happens to Me Lyrics

Why ramp up the fear level of childhood diseases right now? Is it for back to school doctor's visits, so as to increase uptake? The media is in a frenzy with dire epidemic warnings, much like the color coded terror alerts that popped up everytime the current administration needed a voter boost before the 2004 election. Using fear to sell a product is as old as Cleopatra's eyeliner (which was made from lead.) Let's not be blinded by the technique.

Kim Stagliano is Managing Editor of Age of Autism.

Sunday, August 24, 2008

Back to School Week? Good Luck!

My girls start school on Thursday. Good luck to you and yours as the 2009 school year begins. Are you nervous? I'm excited for my kids. I think they each have a good year ahead of them. Two in middle school! How did that happen?

Friday, August 22, 2008

Michelle O'Neil - you own the UGLY SUIT!

Tell your husband to run for it! You just won the ugly suit, using my usual contest method, pick a random number, count down on comments and see where I land.

Send me your address woman. NorthEast Ohio is about to get a thrill. Wear it to Mentor Headlands Beach! Cruise The Rock and Roll Hall of Fame in it! They'll think you've stolen a costume from Cyndi Lauper! Take in a Tribe Game - tell them you're from the tribe known as "Ugh!" I don't recommend going to a Brown's game in it. The Dawg Pound will eat you alive.

I'll look forward to its blogging future.

Wednesday, August 20, 2008

Remember THIS Beautiful Kid? Double mastectomy at age 36. God bless her. Pay attention to your breasts. Big, small, hardly there at all, pay attention.

Monday, August 18, 2008

Win Kim Stagliano's Ugly Bathing Suit

(You don't have to wear it. Just win it, blog your own contest for it and join the Bloggerhood of the Traveling Hideous Bathing Suit.)

A few weeks ago, I blogged about this bathing suit (HERE)that I had bought in a blind panic for an autism event that required that I appear in public in a swimsuit. (HERE) I had a budget of zero dollars, 2 days and limited time to shop. Under the glare of the "You may view the body" lights in the dressing room of my local TJ Maxx, I deluded myself that this "thing" looked half decent. I was wrong.

I've decided that my ill conceived bathing suit purchase is simply too hideous to hide in my bureau. If those darn pants can travel through the sisterhood, why not my (unworn) swimsuit? Yes, this is the official, "Win Kim Stagliano's Ugly Bathing Suit" contest. Here are the rules:

1) If you enter, you must agree to run a contest for this suit on your own blog within a week of receiving the suit in the mail. This gives you ample time to ogle its shiteousness before sending it along to the next soon-to-be disgusted recipient. You can photograph the suit on your cat, your Harley, a tombstone - it's your call. Run the photo on your blog. Be creative. Tell your blog buddies where the contest began - and send this Lycra loser along to whoever wins your contest.

Leave a comment and an email address so I can reach you. Or email me at kim stagliano at g mail dot com, if you'd rather not leave your email address in the comments. But still leave a comment, OK!

All right, Blog Buddies - let's see who wins!

Check out the Purple Pineapple!


Since we moved to CT, I've found that parents of my daughters' typical peers have reached out to the girls and to me. It's a nice change from the "SPED" isolation I felt in Ohio. Now, it could be that I was just so overwhelmed in Ohio that I was as prickly as a cactus and not very approachable. I don't think so though. I do think I intimidated some people with my bossy Boston self.... (I know, am I ragging on Ohio again? I miss plenty about the area, including my neighbors. I don't miss cleaning four toilets. I'll never miss the schools for their complete lack of a clue on how to educate my girls, overall. Though we did have some fine teachers. There, did I dig myself out yet? Probably not. I don't care.)

One lovely Mom I've met here is named Cindy Nigro. Her sweetie daughter Madeline was in Bella's Kindergarten, 1st grade and now 2nd grade class. Cindy has taken a real interest in Bella as a person. I love that. She even gives Bella GF treats in the school treat bags. How many Mom's would do that?

Anyway, Cindy has her own business that I thought I'd share with you. Moms supporting Moms. Check out these pretty belts, accessories and maybe buy yourself a little something?

Cindy doesn't know it yet, but I'm going to approach her about making Autism Awareness Keychains using the Autism Ribbon to add to her selection. My sister in law made something similar for me several years ago - and I still have it. I envy people who can sew!

Sunday, August 17, 2008

Call 911? Call The New York Times?

This just in! Two of the three Stagliano children are napping! Napping! Sleeping in their beds in the middle of the day! Are they sick or just as tired of summer as I am?

Friday, August 15, 2008

Friday Dance Tune

My boyfriend and I snuck into a club in Boston in 1980 to see U2 - I was 16. They played this song TWICE because they ran out of material. Commence to dancing.

We have to reward the teachers for coming back to do their job?

This email really bothered me today. It's from the PTA at my daughter's school. They are trolling for donations for the teachers/staff's "Welcome Back luncheon." Let me get this straight. You just had 2+ months off. I'm running to every store in America to make sure you have enough Purell to clear the germs from the world's largest bathroom, enough tissues to soak up the Atlantic ocean and enough sharpened pencils to reach to the moon. And now you want food?

Gas costs $4 bucks a gallon. We haven't turned on the AC in two weeks, after the first electric bill in this new house, which is smaller than any house we've ever had. My kids are climbing the walls. I'm stuck to the ceiling trying to avoid them.

And now I have to FEED YOU LUNCH AS A REWARD FOR COMING BACK TO DO YOUR JOB!????? Homey don't think so!!!

Dear Parents, The PTA will be providing a welcome back luncheon for the staff this year onMonday, August 25th at 12:00 pm. In order to keep our costs to a minimum and still have a festive luncheon, the PTA will be providing sandwiches andside dishes. We are hoping that our parents may be able to donate eitherbottled water or desserts. We realize that everyone is busy getting the last bit of fun out of thesummer vacation and want you to know that we appreciate any help you areable to offer. If you are able to donate, please email us with what you will be providingby Tuesday, August 19th at: or Additionally, if you are available to help set up or serve, we could alsouse some help. You may drop off your contributions in the cafeteria between 10:30-11:30 amon the 25th. Again, thank you very much.

(PS) If you're a teacher, before you rip me, let me tell you that I bought 27 Lenox China votive holders last year as teacher/aide gifts. I treat my kids' teachers like gold, because they work so hard. This is an issue with the stinking PTA - which I'm guessing doesn't include many autism Moms.....

An Autism Mom named Barbie Hines wrote this piece for us at Age of Autism. It's a laser insight into what it's like for families with a child on the autism spectrum. It's not pretty. It's not a fairy tale. It's not sweetness and light. It's reality.

Click HERE
to leave a comment for her over at Age of Autism. We have some powerful pieces up today.

VolcanoManaging Editor's Note: Thank you to Barbie for this post. It's gutsy. So often parents of children with autism (and other disabilities) paste on a brave face and tell the world, "Everything is fine." Guess what? In an autism household, everything is not fine. There are ups and downs and all arounds that families not facing autism can't fathom. This isn't a reflection on our children, whom we love dearly, but on the harsh reality that is autism for many, most of all, for the kids.

By Barbie Hines

Bon Voyage

My husband and I recently planned a vacation for our family. We were very much in need after a particularly difficult year for our son, Jimmy, who is severely afflicted. As afflicted as my son is, he is a wonderful traveler.

In the weeks prior to our departure, we had a ‘lesson’ on Hawaii. We used a ukulele during music time. We practiced the hula dance (well, I did…Jimmy just laughed). We watched a video of surfers. We even made a vacation book, with pictures of things we would do. We showed Jimmy online photos of the house we would be renting. We bought a pop-up book about airports.

As we were watching Jimmy ride the escalator ‘just one more time’ before heading to our gate, I said to my husband, “We have lost so much to vaccine injury. We have lost money, health, happiness, friends and family, the desire to have more children and faith. But, we have not lost our family vacations – thank goodness!”

Jimmy was wonderful. The idyllic six-year-old boy, heading off on an exciting adventure. He was literally squealing with excitement as he pulled his Thomas the Tank Engine backpack on wheels through the airport. I was beaming. I sent a text to my mother and sisters, “Jimmy doin gr8!” And then we boarded the plane.

As soon as we entered the cabin, Jimmy panicked.

He jumped into my arms. He started grabbing seats, trying to push us out of the cabin. I struggled into our seats. It took every ounce of strength I had to keep Jimmy on my lap. Jimmy is 48 inches tall. I am 58 inches short. He wanted out of that cabin. He fought with all his might.

I pulled out all the tricks. I was singing his favorite songs in his ear. I tried stimming on his ‘stim’ toy. My husband ran over with the portable DVD player (my husband and daughter, Reagan, were on the other side of the plane). I tried the back rub the chiropractor taught me. I tried foot rubs, which always work during stressful times. I sprayed ‘rescue remedy’ in his mouth. I pulled out the emergency candy stash – food coloring, preservatives, the works! His anxiety only increased. After about thirty minutes, I could barely hold him. A woman sitting behind me offered to switch seats with my husband, who was standing up in his seat, watching us, with a panic-stricken look on his face. I thanked her, and my husband and daughter quickly moved behind us.

Sweat was dripping down my face. If I released my grip on Jimmy, he would get away. My arms were quivering (why did I quit working out?). My poor boy had a facial expression I had never seen on him before. He looked scared to death. His breathing was now sounding different. He wasn’t screaming anymore, just sort of gasping. My daughter stuck her chubby, little 3 year old face between the seats and scolded, “Jimbo, sshhhhh! Me playin’ Leapster!”

A flight attendant came over and said, “You will need to tell us if there is anything we can do to help. We cannot take off like this.” I replied, “I understand. Can you give us some more time?” Shortly thereafter, the pilot announced our flight would be delayed by approximately thirty minutes, and he apologized for the delay. Great, we are now “the delay”. Something new for us. My nephew may have graduated in the top 2 percent of his class this year, but could he ground a plane of 350 passengers?

After fifteen more minutes of this, I said to my husband, “I have to get off. This is not right. He is not capable of doing this today.” My husband replied, “Then we will all get off.” I sternly replied, “Oh no we won’t. I will not lose anymore. I will not. I will get a sedative from the doctor, and Jimmy and I will join you in a couple days.” With that, Jimmy broke free. He took off down the aisle. My husband took off after him. I stood in the aisle dumbfounded. I needed to run after him. I knew he would find a way off the plane. But I looked at my 3-year-old. Could I leave her sitting there alone?

A sweet, young college boy stood up. “Ma’am, go ahead. I will sit with her.” Reagan replied, “Oh, hi friend! Wanna play Leapster?” I thanked him and ran. As I ran off the plane, a flight attendant called behind me, “Hey, you cannot just exit the plane like that.” This at least brought a slight grimace to my face. Watch me!

Ahead of me I saw my husband running. Ahead of him I saw my son being held by a grandfatherly looking gentleman. Jimmy was crying on his shoulder. I yelled to my husband, “I’ll get Jimmy. Get back to Reagan.” He turned around and started to run back to the plane. I was almost at Jimmy and I heard my husband yell, “Barbie!” I turned around. He hurled a set of car keys at me.

Jimmy and I slowly started the return to our car. He was sobbing, not tantruming. He continued with this very pathetic, heartfelt sobbing. His head was in my lap on the tram ride. As I strapped him into his carseat he signed, “Sad.” “I know, Buddy. Don’t worry. I’m going to call the doctor. He will help us. You will get your vacation. I promise.”

For the next nine hours, my husband was on a plane with our daughter. We obviously didn’t plan for this separation. He was on a plane not knowing which car rental agency had our reservation or how to get to our rental house. I had all the travel documents. I had his cell phone. His wife and son were upset and away from him. He could not fix this for his family, and he hates that.

I was on my way home. Trying to drive, drink a diet coke (which I so badly wish had Jack Daniel’s in it), and see through tear filled eyes. Somehow, I managed to send another text, “Jim n Rea goin 2 Hawaii. Jimmy n I goin home. Dont call. 2 upset.” I didn’t know if I had house keys. All of Jimmy’s supplements were on their way to Hawaii. I own 7 pairs of underwear. Six were on their way to Hawaii. My mother ignored my text request and called. “Can I come over?” I replied, “Fine. But I will be on a chaise lounge drinking a manhattan and smoking. Don’t say a word about it.”

Two days later, we returned to the airport, liquid Valium in my purse. Before we left the parking lot, I gave the first dose to Jimmy. As suggested, thirty minutes later I gave another dose of Valium. Ten minutes later, Jimmy was literally staggering. He was staring at his hand and laughing.

I told the flight attendant that we needed to board first, before any other passengers. I quickly explained what happened two days prior. She said, “You can board immediately after the Premium passengers.” I looked over at the Premium peeps in their Armani suits. I told the flight attendant, “They look pretty healthy to me.” She didn’t reply. I decided to keep staring at the Premium peeps. Come on folks. Get it. Catch on. He needed to get on first. Perhaps if I stared them down, they would get it. I knew they heard my explanation. And, if my method didn’t work, the first guy was hot. Not a total waste of staring, regardless of the outcome.

The flight attendant/charm school graduate asked the Hot Guy for his boarding pass. He looked at me and said, “You first.” A hot guy with brains. Gotta love it!

We boarded the plane. Jimmy was nervous again. However, this time he was stoned, so it worked. We took off! Life was great for about 4 hours. Jimmy had been sleeping since take off.

Jimmy woke up and all hell broke loose. He didn’t know where he was, he was still stoned and he needed to use a bathroom badly. I ran to the bathroom with him where five people were in line. We stood there struggling for a few minutes, and I finally asked, “Can we please move to the front of the line?” A woman, whom I now call Einstein, asked, “Why?” I replied, “Because my son is scared, stoned and autistic. I don’t think I can hold him much longer, and if he wets his pants he’ll really get mad and everyone on this plane will suffer.” While I was contemplating smacking Einstein, a surfer dude came out of the other bathroom. “Ma’am, you can use this bathroom.” “Thank you!” Just then, Jimmy urinated all over me. I grabbed Surfer Dude’s arm as he walked past me. “Please, please help me. I am in seat 28A. There is an orange NorthFace backpack there. Please bring it to me.” He replied, “No problem, Dude.” Jimmy had now stripped. He doesn’t like having accidents. He insists on changing all of his clothes when it happens. Surfer Dude brought me our backpack. I dressed Jimmy, shoved a dumdum sucker in his mouth, and we made it back to our seats.

We continued to struggle a bit. I was wondering if I could give Benadryl with Valium? I decided against it. Surfer Dude walked over and asked, “Can I get you anything?” I told him to reach in my purse and grab my wallet. “PLEASE go buy me a diet coke and Jack Daniel’s. While you’re at it, buy yourself a drink.” “Wow, thanks, Dude!” From his excited response, I’m fairly certain I bought a minor a cocktail.

Surfer Dude returned with my drink (there is a God!) and handed me the change. I begged him, “Please keep the change. Buy yourself some condoms in Maui.” Laughter filled the plane and continued for several minutes.

P.S. Reagan had a wonderful vacation. She learned how to hula and loved the beach. My Jimmy learned how to ride the waves and kayak. He loved kayaking! And I confirmed with our speech therapist, kayaking would facilitate crossing midline…yippee! The flight home was perfect. Jimmy loved it as he always has in the past.

Barbie Hines is the proud mother of a 5 year old boy, Jimmy, who is afflicted with autism. Along with Reagan (Jimmy's sister) and Jimmy's adoring father, they live in a suburb of Chicago, Illinois.

Thursday, August 14, 2008

Why_cant_my_childFeingold Association Book Contest

I'm running a contest for this book from the Feingold Association over at Age of Autism. CLICK HERE to enter. The Feingold Association is all about removing artificial colors and flavors from the diet to improve behavior. And it works. The American Academy of Pediatrics even recommends this diet. (Insert eye roll here.)

Enter your name and your email address (on the email line in the comment form) in our comments section to win a copy of "Why Can't My Child Behave? Why Can't She Cope? Why Can't He Learn?" by Jane Hersey, National Director of The Feingold Association.

You can order a copy from Amazon HERE.

Remember, you have to enter at Age of Autism. I'll never keep two contests straight! ENTER HERE.

Monday, August 11, 2008

Genetics My Ass

David Kirby is now on Huffington Post writing about the ubiquitous nature of mitochondrial dysfunction after the UMDF released this:

The United Mitochondrial Disease Foundation (UMDF) today announced landmark research finding that one in every 200 people has a DNA mutation that could potentially cause a mitochondrial disease in them or their offspring. Mitochondrial disease is a devastating and often fatal disease, and mitochondrial disorders are at the core of many well known diseases and chronic illnesses, such as Alzheimer's disease, Parkinson's disease and autism spectrum disorders.


Click HERE to read David's full post.

Random House Release: Poisoned Profits


August 12, 2008
12:00 noon ET
Teri Arranga
Autism One: A Conversation of Hope
HERE to enter the Voice America site to listen.

Teri Arranga of Autism One will interview Philip and Alice Shabecoff along with Age of Autism Editor-at-Large Mark Blaxill and his wife, Elise on Tuesday, August 12 at 12 noon Eastern. Here’s a brief description of the Shabecoff’s new book, Poisoned Profits.

Poisoned Profits: the Toxic Assault on our Children, just released by Random House, unveils alarming facts correlating the rate of disease among America’s children with toxic environmental exposures. This book, by former New York Times environmental correspondent Philip Shabecoff and his wife Alice, is a meticulously researched, well written and easy to read no holds barred account of industrial polluters, obstructionism, and the epidemic of children’s chronic diseases, including autism. It discusses the scientific evidence, walks the reader through a typical American day to disclose the surprising places where poisons enter our lives by our own actions and by stealthy trespass, and tells the stories of families, including the Blaxills, and of communities harmed by toxic exposures, from industrial chemicals to pesticides to nuclear-contaminated water. The book ends with hope and optimism, with ways for parents to protect their children and for citizens to change the economic and political system that allows these assaults to continue.

See the Poisoned Profits website for more info and to order the book.

Sunday, August 10, 2008

It Chick Clothes for Plus Size Girls Wii Contest!

Do you write for the Tween audience? Check out this contest and tell your readers about it! It Chick Clothes are for plus sized pre-teen girls. Every girl should feel like a million bucks on the first day of school. That means having clothes that fit, feel good and are stylish. Finding a snazzy wardrobe isn't always easy for a plus-sized child. And I can only imagine what Mom goes through trying to shop for her daughter. Here's a solution and a fun contest to boot!
From the It Chick site:

We agree with Abe Lincoln and our Founding Fathers that all men are created equal. In honor of summer and independence day, we offer this: all girls are not created equal. Especially young tween girls! So let's stop pretending that every pre-teen young girl is the same size and start shopping for some adorable, popular plus size styles. We design our plus size fashions recognizing the individuality of each girl who wears them.

It Chick Clothes has launched a photo essay contest! We're giving away a Wii Fit game to the girl who submits the best picture that describes what it's like being a tween girl in America. Find out more information
here. As part of this contest, we're giving away 10% of our back to school sales (sales in the months of August and September) to Girls Inc., a national nonprofit dedicated to inspiring all girls to be stong, smart and bold. So enter the contest and shop ! Click HERE to enter.

Friday, August 08, 2008

Sooo disappointing. To err is human.

I can understand a one night stand. Not an affair. Nope.
It's Friday! Dance! (The intro is slow, then you might wish you had my funkalicious bathing suit to wear as you dance.) Listen to the lyrics. This song is fron 1979. Some things have changed. Some haven't.

I added another below. Another dance song - but the lyrics are powerful. The love that you need will never be found at home. Sadly, the situation for many young gay people.

Bronski Beat. If only I had a pair of Guess Jeans from 1983 to blog.....

Wednesday, August 06, 2008

Just Ordered!

A thousand mile journey begins with a new hybrid car! 600 miles a TANK! Hey, in CT our gas is $4.39 even today. Mark and I have evolved so much over the years. I attribute our becoming more aware of what's important in life to the kids' situation (that'll make you drop your vanity fast) and having lost a job twice in our marriage. The first time just about wiped us out. The second time was brief, thank God, but even more frightening, since we knew first hand how long it can take to get back on track, and our cushion was about as cushy as an Olsen twins' behind. Many of you helped me through that time. And I'm still grateful every day for your support.

Mark always had a company car - then he went to work for a German company and got a beautiful, sleek "dig me!" car. (When I was a 20-something hanging out in Newport RI, we used to call the guys who preened, "Dig Me's") A shiny black BMW. It purred. It growled. It turned heads. It cost a fortune....

We also had a McMansion in Ohio (really affordable, I have to say) with over 3000 square feet, 3.5 baths, gorgeous curb appeal, finished basement, 3 car garage. Now we live in the BEST house we've ever had. And I mean it. I can feel that it's our home. It's a 3 bedroom ranch. Two bathrooms, no powder room (1 less toilet for Bella to seek out!) in a pleasant neighborhood in the heart of town. It has a gorgeous kitchen, beautiful pool (such a luxury for the kids!) spa-like master bath, large bedrooms for the girls and while pretty from the curb, does not scream, "We've arrived!" Guess what. I arrived in 1963. I have no need to prove it further.
Life. Is. Good.
Come on over when the Prius arrives. We can go for a spin!

Friday, August 01, 2008

Thanks to Jess Wilson for letting me borrow this entry from her blog. Look at this photo - have you ever seen such love in a child's eyes? Billy is very sick with a rare disease. Read please. More later on how we can pitch in to help.

My friend, Scott called me yesterday. Whoa! Don't just keep reading. Click on Scott's name and read the story. Please. Pretty please. This is important, folks. This MATTERS. You click. Read the whole article. I'll wait.

"I need help, Jess."

Sometimes, life is a game of triage.

What matters most? What needs my attention most urgently? Who might literally die if I don't take five minutes to get educated and HELP.

We fight for a better life for our children.

Scott and Katy are fighting for their child's life.

We fight for awareness. We walk and hand out buttons and magnets and scream from the rooftops and we watch hours and hours of footage about autism. 1 in 144.

How many people do you know who know what SMA stands for? Yet it KILLS MORE BABIES THAN ANY OTHER GENETIC DISEASE.

We have big names. Bob and Suzanne Wright - love em or hate em, they know people. They know a LOT of people. With money. A LOT of money. And Influence. Yup, a LOT of influence. Jenny McCarthy - love her or hate her, she is VISIBLE. She's on the cover of magazines. Mike Savage (I'm not giving you the choice on this one and I sure as hell ain't linking you to him) - hate him, he talked about autism because autism is VISIBLE.

SMA isn't sexy. It's heartbreaking. It's the stuff your worst nightmares are made of. It's the stuff that no one wants to talk about because we can't bear the pain of it. But Scott and Katy and so many parents like them live that pain every day.

We HAVE TO HELP. Children cannot die on our watch when they don't have to. No one should have to live this way.

We are hurting.

They are dying.


SMA has been chosen by the National Institute of Health to be a model for translational research because it is the closest to a treatment or cure out of 300 neurological disorders. Think about that. We are this close. This flippin close.

We are all connected. SMA genetic research in the "Genomic Modulation of Inherited Genetic Diseases" project may provide novel insights into potential ways to treat SMA and 40 plus similar diseases:

  • Tay-Sachs Sandhoff

  • Parkinsons

  • Alzheimers

  • Friedreich's Ataxia

  • Spinocerebellar Ataxia Type 1

  • Spinocerebellar Ataxia Type 2/Episodic Ataxia Type 2

  • Spinocerebellar Ataxia Type 6/Spinocerebellar Ataxia Type 7

  • Deafness/Dystonia

  • Myotonic Dystrophy

  • Duchenne Muscular Dystrophy

  • Late Infantile Metachromatic Leukodystrophy

  • Late Infantile Neuronal Ceroid Lipofuscinosis

  • X-Linked Adreno-Leukodystrophy

  • Menkes

  • Types A and B Niemann-Pick Disease

  • Fragile X

  • Machado-Joseph

  • GM2A

  • Gaucher Disease

  • Sialidosis and Galactosialidosis

  • Infantile and Late-Onset forms of Neuronal Ceroid Lipofuscinosis

  • Classic Late Infantile Neuronal Ceroid Lipofuscinosis

You see Fragile X in there, right? I knew you wouldn't miss that.

They need money. $1.3 million to be exact. They need to help fund incredibly promising gene therapy research.

If beautiful, delightful Billy were your child, you'd have called me too. You'd have called anyone and everyone you know who might be able to HELP. Please, pass this on to anyone who will read it.

It takes a village, friends. And the village that I want to be a part of, no the village that I KNOW I AM A PART OF, fights for its children. All of them.