Sunday, November 29, 2009

Heroes of Autism Video

I'm not sure (yet) who within our community made this video. It's really nice - thank you. And thank you to all of the heroes in the autism community who fight for our kids - and yours. Whether they have autism, or not.

Tuesday, November 24, 2009

Fire teddy bears By Kim Stagliano

Your pretty red house is on fire. You're on the second floor with your kids. The stairs are gone. You call the fire department. They tell you they don't go to red houses. They assure you that your house is not on fire, it's just your imagination. They hang up on you. Then they disconnect your phone lines. Smoke is choking your children, flames licking their feet. Do you throw them out the 2nd story window or let them burn to death having been told your house is not on fire? You may choose to let your kids burn to death. Good on ya. Get out of my way, though. I'm throwing my girls to safety.

That's my response to the Chicago Tribune accusing us of performing "uncontrolled studies" on our kids. (Our medical doctors are thorough and safe, by the way.) The AAP and mainstream medical doctors have abandoned our sick kids. They offer us nothing. Do they really expect us to let our children suffer? And why does it bother journalists like Trine Tsouderos and Pat Callahan that some of us are improving our children's lives?

Who on earth would tear down progress for so many kids and moreover, why?

Kim Stagliano is Managing Editor for Age of Autism.

I deleted the comment thread - I don't need any wolves in sheep's clothing co-opting my posts for their own gain. Nor do I need anon commenters bashing my readers.

Saturday, November 21, 2009

Blind eye Chicago Trib Wants Autistic Kids to Remain Sick

From The Chicago Tribune is running another series of articles stating that "risky" treatments are of little use to children/people with autism (HERE). (Meanwhile, the American Academy of Pediatrics, in their backyard, will tell parents to use powerful psychiatric drugs with little to know knowledge of how they work or their long term effects on kids. Talk about risky.) We'll be sharing more info with you about the interview process these journalists followed and what did and did not make their final article. In the meantime, we invite you to send Patrician Callahan (, Trine Tsouderos ( and Editor Gerould Kern ( a polite email sharing how treatments have improved your child's life. When you send you email, include a copy in our comments, please.

We beg to differ with the slant the Tribune is taking. Children can make tremendous progress and we will share stories with you from our recovery category. Start with this little girl, who is using speech for the first time. If you ever figure out why people with autism are NOT supposed to see improvement or, God forbid, recover, let us know. The anger, skepticism and outright denial of medical care for autism is stunning.

From August, 12, 2009 (HERE) : Yesterday, we told you about the 2009 National Autism Association Conference in Florida this November. The video below is a gorgeous advertisement for why you should attend the conference. This beautiful, nine year old child was non-verbal until just weeks ago.

Her Mom has attended every National Autism Association Conference. Because this child is Aly Fournier, daughter of NAA President Wendy Fournier. The video is called "Aly's Letters." Just see if you can stop smiling while you watch this.

From Wendy on 7/24/09: Friends, I have a miracle to share with you! It's all about Hopeism. My daughter Aly is 9 years old and severely injured by her vaccines - diagnosis: Autism. She has never had functional language. I have a recording on my computer of her saying Mama when she was about 11 months old. I haven't heard it since. The last 7 years have been more difficult than I can say, but many of you don't need an explanation, you're living it.

When Aly was diagnosed, I hit the ground running. I soaked up everything I could about autism, vaccine injury, therapies, biomedical treatments, attended conferences, asked a million questions, talked to doctors and other parents, spent sleepness nights searching Pubmed. I was absolutely convinced that she would be perfectly fine and recovered by First Grade.

First grade came and went, she'll be a 4th grader this fall. She's been making slow progress over the last couple of years, but painfully slow and no big "Wows". She's finally potty trained which I am extremely grateful for! She's sleeping through the night, with rare exceptions. She's using picture exchange to make very basic requests, but is still unable to tell us how she feels, or if something hurts.

This past winter was so hard. I looked at her one day and really saw her. It hit me like a truck how sick she is, and I started grieving for everything that's been stolen from her and our family. The holidays, dreaded birthdays that simply mark the passage of another year without recovery, the joy of having friends, going to the movies, being able to play outside without the worry of her running into the street, and family vacations? Not even a possibility.

Enough of that, I'll get to the good stuff. This past week, my non-verbal little girl started SAYING letters. Looking at them, pointing to them, and getting the sounds to come out of her mouth. She's never been able to do anything like this before. It's AMAZING! I've been hesitant to even say anything about it because I'm so terrified that it will go away. But I need to share this with all of you who have been fighting so long. When Aly's 9th birthday came and went, I was beginning to wonder if she would ever be able to find her voice. And now she has! Hope has been dumped all over me and I'm filled with excitement about what's to come!

Update – 2 weeks later: Aly is now verbally labeling all of her letters, numbers to 10, and naming about 35 objects and people - including Mommy! She has also started using her voice to request her favorite things – showers and cookies!

Lee Silsby logo 09 The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Thursday, November 19, 2009

Not Not Your Daughter's Jeans

I'm half horrified. One quarter secretly pleased. One quarter just plain depressed. I haven't tackled the laundry since we got back from Cleveland, except for the kids' clothes. So my jeans are mostly in the hamper. I'm sick to death of wearing Levi's. Day in. Day out. Bootcut. Straight leg. Boring.

Today I realized I had almost nothing to wear. My choice of clothing these days resembles the car selection in the USSR in 1970. "Do you want the black or the so dark gray it's black Trabant, Comrade?

I slunk (slink, slank, slunk, right?) into Mia and Gianna's closet and eyed a pair of tan cords from Target. Could I? Would they? Aw, hell, why not try?

They fit. A kids size 16. Whoopedoo. I have the figure of a child. But they are too short. And flared. Really hideous. So I tucked them into my Uggs, to make the sartorial statement that much more pathetic.

I need a shopping spree. Badly.

Friday, November 13, 2009

We're Off To Cleveland Again.

Tomorrow we're driving to Cleveland (500 or so miles) so we can do lab work at The Cleveland Clinic on Monday morning. We see a neurometabolic geneticist there (Dr. Natowicz) who is tops in the country and a living doll to boot. I calm down just sitting near him. First off, he's brilliant. Second, he has a twinkle in his eye and a real scientists desire to investigate plus a clinicians need to help his patients. The lab tests are so sensitive, we need to do the work there. So off we go.

Mark is going to connect with some old friends he hasn't seen them in 25! And they weren't in preschool at the time, if you get my drift.

Wednesday, November 11, 2009

Smith Island Cake

I love to bake. It's therapy. I am determined to make a Smith Island cake for Christmas. We have a houseful going to my parents' in Massachusetts. My brother and his partner and my sister and her husband and son plus two bonus family members will be together this year! My sister's stepsons, who are now men in their 20s, wanted to come to Grandma and Grandpa's too for a New England Christmas. They live in Texas, who could blame them for wanting to trade cowboy boots for Bean boots for a few days?

I learned of the Smith Island Cake in Cook's Country Magazine. It is the offiicial dessert of the State of Maryland. And I'm a crab. So it's a match made in heaven. It has a secret trick. You don't cut those thin layers. You bake 8 flat cakes using 2/3 cup of cake batter each. Ah ha!!! The frosting is ganache - easy to make and use.

So, Smith Island, here I come!

Monday, November 09, 2009

Brooke Shields Promotes Rx to Grow Eyelashes.

I saw an ad last night for this new prescription product (which to me, makes it a drug) called " Latisse ." In 4 months you can have longer lashes.

Jumping Jiminy on a stick, what crap will women fall for next and is there nothing some doctors won't sell to their patients? Brooke Shields is the spokesformermodel hardly needs more hair on her eye area, aren't the eyebrows enough?

In the meantime, the side effects include:

1) Eyelid skin darkening which MAY (ha ha!!!) be reversible. Sweet. Please consult with Bobbie Brown or Estee Lauder to make sure darkened eyelids are going to be in for the next hundred years.

2) Potential for increased brown iris pigementation which is likely permanent. Fabulous! It tursn your eyes brown. Then the idiots at Allergan can sell you BLUE contacts to make your eyes blue again.

3) Potential for hair growth on skin surfaces that come into contact with Latisse. So don't spill it on your cheeks or you'll look like Wolf-girl. (What is this shit, Rogaine for eyes?)

Here's a thought - get false eyelashes. Get a tube of Maybelline. Now, if this is a solution to a problem for women with a true medical condition, or perhaps post chemo I can kind of sort of get it. But the ad is targetting ALL women.

Monday, November 02, 2009

Dear Dingbat at William Raveis Real Estate Marketing:

"Find a home from your cell!" probably isn't the smartest email subject line you could have written to promote your new cell phone app. I am picturing inmates poring over ranches, Colonials, contemporaries. "Ah, JohnnyTheShiv, someday we'll bust outta here and I'll buy you that Cape Cod on Elm Street with the loot I stashed under the stairs at my Grandma's house."