Tuesday, January 16, 2007

Pinning Our Hope On The Stars

Many of you have emailed me that you noticed some of the stars at the Golden Globes wearing the blue puzzle piece pin from Autism Speaks. Yes, we are the red ribbon cause of a new millenium. It's great to see autism awareness blossom. And didn't that blue compliment Alec Baldwin's blue eyes well?

With 1 in 166 kids diagnosed today you'll be seeing plenty of autistic kids around you. And these kids will be adults in 10, 15, 20 years. Think about 1 in 166 adults who might not be able to join the workforce and who will rely on social security and what that could mean for your taxes, your own retirement, the work force you need to hire, your employees who will be struggling to care for aging parents and autistic adult children. Can you hear the alarm bells clanging away?

I've had relatives and friends ask how they can help. Where can they donate? What can they do? Well, if you can't move into my house and watch the kids while I call in the IOU Mark gave me for my 40th - a trip to Paris, you can still help. Offer to sit for an hour so Mom can get her hair done. Pop a Starbucks gift certificate into your neighbor with the autistic boy's mailbox. We need the coffee. Donate to an autism organization.

Autism Speaks (www.autismspeaks.org) is doing a phenomenal job of raising awareness. And they have a huge staff of talented people working with them. You can't beat having the head of NBC at the top of your charity for publicity. OK, maybe Oprah could top Bob Wright for generating good press, but not until Autism takes over Africa.... (Oops, sorry, got a little Snarky there.)

The National Autism Association (www.nationalautismassociation.org) NAA is working toward immediate treatments for our kids and providing cash dollars to families in need. Their helping hand grant assists single parents raising an autistic child. Word is, we have a scary high divorce rate in the autism world. The stress can lead to drinking, marital wandering and even excessive blogging. NAA is run by a small group of parents like me. Wild eyed, sleep deprived type "A's" who are determined to find answers. Another wonderful group is in Massachusetts called Active Healing. They work with kids on the spectrum and kids with learning differences. You can find them (and the very handsome Sarge Goodchild) at www.activehealing.org. Sarge was the first professional to give me hope for my kids.

One day I hope to be able to take that trip to Paris because my kids are so far along that I can leave them with a sitter or family member for an entire week.

18 comments:

mcewen said...

So no 'logo' for website for less superpowered / technically challenged / financially strapped persons as yet then?
More power to you and 'AS'/
Cheers dears

Kim Stagliano said...

McEwen, you know how your "translate" on your blog? Could you do that for me? Do you mean the little people like us! LOL? My logo would offend most people.... ;)

KS

Kim Stagliano said...

McE, did I fix it?

Anonymous said...

KS: "Think about 1 in 166 adults who might not be able to join the workforce and who will rely on social security and what that could mean for your taxes, your own retirement, the work force you need to hire, your employees who will be struggling to care for aging parents and autistic adult children."

The 1 in 166 (the high end of the CDC estimate) is for ALL ASD's. Is there some reason to think that the vast majority, which do not meet the diagnostic criteria for autism, but rather PDD-NOS or Asperger's, are really to be feared as you've described?

-george

Anonymous said...

Why would anyone hired an autistic person after they have heard so many horrific tales of how animalistic they are, what with the poop smearing, and how they are toxic train wrecks (quoting Lisa Ackerman about her son)? The majority about 2/3 of the 1 in 166 are not "classic autistics" and even so "classic autistics" can grow up and make plenty of money, see: Temple Grandin.

All your talk about how expensive and economy destroying autistics are just serves to make it harder for them to have a decent life. Why don't you think about what the fallout of your writing is for a change?

Allison said...

anonymous,
Obviously you do not "get" the humor that Kim uses. She is a great assest to us parents who desperately need to laugh. My son is not high functioning nor is he asperger's, he has Autism. It is an extreme challenge as a parent without exaggeration. We ache for our children every day because we see their pain when trying to convey their basic needs. If they could express themselves like you are able to that would be all we needed. But we have children that need us to speak for them. Kim is a fantastic mother and everything she does is to make sure life will be better for her children. While using humor to get by.

No one can deny that those on the moderate to severe end of the spectrum are very different from those in the high functioning arena. My son's good days are completely related to his physical health. It is a neurobiological disorder that needs to be addressed. Sure the brain works differently, but WHY does it work differently. Genes do not explain the whole picture, nor does it explain why autism in some form is everywhere now. The "no epidemic" sayers must be blind. There is a clear difference between MR and Autism. Maybe a few extra "slightly strange" people are being diagnosed as Aspergers, but the kids I see can't have a conversation, make friends or understand danger, but they can figure out any lock, learn to read, and are the most loving children around.

Kim keep doing what you are doing. There will always be some who criticize and try to make you feel guilty. Rise above those remarks and listen to your heart, it has taken you to all of the right places.

Kim Stagliano said...

"Hello, Mom? It's Kim. Do I have a sister named Allison that you never told me about?"

Thanks, Allison.

Allison said...

Sisters of the heart and camaraderie. That's been CJ's gift to me. People I would not have known or ever come into contact with bless me with their kindness, friendship and laughter daily.

You are more than welcome.

Michelle O'Neil said...

Keep writing your truth Kim!

I'm picturing you in Paris. It's gonna happen.

Believe it!

Kim Stagliano said...

Thanks, Michelle. Do you think I'll be able to navigate Le Louvre with my walker?? :)

Anonymous said...

Allison: "Obviously you do not "get" the humor that Kim uses. She is a great assest to us parents who desperately need to laugh."

KS: "With 1 in 166 kids diagnosed today you'll be seeing plenty of autistic kids around you. And these kids will be adults in 10, 15, 20 years. Think about 1 in 166 adults who might not be able to join the workforce and who will rely on social security and what that could mean for your taxes, your own retirement, the work force you need to hire, your employees who will be struggling to care for aging parents and autistic adult children. Can you hear the alarm bells clanging away?"

Allison; I fail to see the humor in this passage. Please enlighten us.

Kim; will you consider attempting to actually answer the question rather than simply sending out a bloggy high-five to your cheerleaders?

- The 1 in 166 (the high end of the CDC estimate) is for ALL ASD's. Is there some reason to think that the vast majority, which do not meet the diagnostic criteria for autism, but rather PDD-NOS or Asperger's, are really to be feared as you've described?

-george

Allison said...

George,
In order for humor to truely work it needs a serious side. Kim is absolutely right in saying that the people who care about "money" better start paying attention to how much it will cost when some of those 1 in 166 CAN'T enter the work force. She is talking about AUTISM not Asperger's or high enough functioning to get by in life without support. As I said if our children could express themselves enough to write some of the ND comments we would rejoice! But that is not the case and the place we choose to fight is awareness, the physical/medical implications of Autism, the connection to vaccines and becoming the voices of our children. As well as showing people the "real" side to Autism not only the side of the savants which are constantly being shown on TV and news reports as Autism. Never has Kim insulted those who have asperger's or high functioning autism just because of the label. That's a complete misinterpretation of her writing. She is bringing awareness to a very serious situation, mostly by using humor, because it is her absolute obligation to her children as it is to mine.

Laura said...

Hmm. Even if the "vast majority" of kids diagnosed today with ASD manage to go out and get a job when they're adults, that still leaves a lot of future adults with AUTISM who will not have that option. In my opinion, even letting 1 in 1000 get to adulthood without doing everything possible to help is a huge loss. And I don't think helping those with Asperger's or PDD-NOS is something to be frowned upon, either. Why would you NOT want to get out the word and do everything possible to figure out what's going on with the explosion of kids with ASDs, today?

Oh, and Kim, the only "fallout" I get from your writing is when I fall out of my chair laughing at your dead-on stories! Keep it up, and enjoy a gluten and casein-filled beignet for me when you get to Paris! :)

Erin said...

Kim I think your blog is fantastic!!

Don't "hope" to take a trip to Paris- PLAN for the trip that you will one day be able to take!

Anonymous said...

Allison: "In order for humor to truely work it needs a serious side. Kim is absolutely right in saying that the people who care about "money" better start paying attention to how much it will cost when some of those 1 in 166 CAN'T enter the work force. She is talking about AUTISM not Asperger's or high enough functioning to get by in life without support."

If you and Kim ever spend time together, will you wear t-shirts that say "I'm with statistically challenged" that point to each other? If she's talking about AUTISM, and not the whole spectrum, then the "1 in 166" does not apply.

Allison: "As I said if our children could express themselves enough to write some of the ND comments we would rejoice!"

If you're talking about the future, why are you convinced they won't? Did you sell out your kids' promise and future to someone peddling myth?

Allison: "But that is not the case and the place we choose to fight is awareness, the physical/medical implications of Autism, the connection to vaccines and becoming the voices of our children."

What vaccine connection?

Allison: "As well as showing people the "real" side to Autism not only the side of the savants which are constantly being shown on TV and news reports as Autism. Never has Kim insulted those who have asperger's or high functioning autism just because of the label."

Yes she has, anytime she's invoked the "1 in 166", which covers the whole spectrum, remember?, paired with devastation rhetoric, like:

"Can you hear the alarm bells clanging away?"

or

"But shouldn't we be looking for the spigot that is gushing out 1 in 166 children currently diagnosed so we can turn it off?"

Allison: "That's a complete misinterpretation of her writing. She is bringing awareness to a very serious situation, mostly by using humor, because it is her absolute obligation to her children as it is to mine."

Perhaps if she kept her writing to her children (and maybe yours) and ditch the "1 in 166" associations to avoid being misinterpreted as totally clueless and anti-autistic, it would help.


Laura: "Why would you NOT want to get out the word and do everything possible to figure out what's going on with the explosion of kids with ASDs, today?"

What explosion? The increase in diagnoses? Is Kim "figuring it out"?

Enough from the cheerleader crew, what do you say Kim Stagliano?

- The 1 in 166 (the high end of the CDC estimate) is for ALL ASD's. Is there some reason to think that the vast majority, which do not meet the diagnostic criteria for autism, but rather PDD-NOS or Asperger's, are really to be feared as you've described? How about the likely 22 in 10,000 classically autistic? Are they unemployable? If some face challenges in that respect, how should that situation be addressed?

Kim Stagliano said...

Good Lord, I go away for 4 days and you guys have run the blog beautifully for me without my even typing a key!

I love the smell of napalm in the morning!

Thanks to all of you for your input, output and such.

KRS

Kim Stagliano said...

I don't ask people to comment one way or another on my blog. They just comment. I appreciate the support and I don't mind the challenges either. Helps me think.

And STATS was the only math class I ever got an A in! Anon, please don't take that away!

Anonymous said...

I disagree with devastation rhetoric and autism speaks. Did you know that the president of autism speaks went on a national fundraising video and stated that she contemplated driving her autistic daughter, Jodie off the Washington bridge? She said the only reason she didn't do it was because of her "normal" child. Devastation rhetoric is dangerous to autistic people. Murderers are getting off because of the view that autism speaks portrays the disabled. They are a PROFIT organization.