Political Advocacy: Giving my son a voice

22 05 2010

About a year and a half ago my husband went back to school and we found ourselves needing to purchase private insurance.  It never occurred to me that my son who has autism would be denied on that basis– but, he was–by more companies that I can count. I got mad and started the fight for change.

I made phone calls, sent emails, crashed meetings where I knew my elected officials were going to be, wrote letters to the editor, and spoke out whenever I could find someone who would listen. I emailed all my friends and family members asking them to write letters asking for insurance reform… I fought for my kid! 

As proposed reform laws moved to the back burner in my home State, I moved on to advocating on a Federal level. I told my story over and over again. I watched, read and researched. I followed the progress of Healthcare Reform through House and Senate continuing to make calls, send emails asking for a YES vote…

One evening in March  I got a call from Organizing for America asking that my son and I stand with my Congressman as he announced his support of healthcare reform and promised a yes-vote. We were there when our efforts paid off. We were able to thank him in person for his support– for helping our son.

There are lots of things to advocate for– laws, funding; big-ticket, high-profile, high impact needs– and, ones that improve the lives of future generations as well as day to day needs our children have for normalcy– accomodations at the YMCA, IEPs, reasonable volume at the movies… The more we educate our communities and our Nation the lower the stigma and higher the accomodations.

We need to learn how to effectively advocate so that our time and our efforts have maximum effect. Here are a few tips to get you started:

1. Be polite. Your attitude will transfer to the cause you are advocating for. Remember that the person you’re talking to is usually not the person who is going to cast the vote and you want that person to give your cause a favorable slant when speaking with the vote-caster. Practice the Golden Rule.

2. Do your research! Know what you’re talking about before you dial. Back up your claims with statistics– and use them. I’ve always found it helpful to have a cheat-sheet in front of me.

3. Ask questions– How does Senator/Congressman/Mayor/Councilman so-and-so feel about (insert your cause here)? How are they planning to vote? Why or why not? Follow up their comments with your views.

4. Be honest. If you don’t know– say you don’t know and promise to find out– then get back to your public official.  This is actually a good thing because it gives you an excuse to call or write back.

5. Tell your story– it shouldn’t be a play-by-play– keep to the outline version.  Politicians needs examples of real people who benefit from the law being passed– or repealed. They are people like us– parents, business people, community members, vets, customers…

6. Know who you’re talking to. What is their history? Do they have kids? How have they voted on similar issues? Use the similarities between you and them as a hook. If they can relate they are more likely take up your cause.

7. Offer to help. I’ve always believed that if I’m going to ask someone to do something for me, I must be willing to help them get it done– and, support them when they put themselves on the line for us.

8. Be Persistent! Any changes, progress or set-back is a good excuse to make contact again.

9. Double Dip. Do it all– call, fax, write, email, get an appointment, cast your votes on Facebook’s Visible Vote, sign polls, contact organizations associated with your cause (Organizing for America, Autism Votes, etc.)

10. Build relationships. Get to know your official and his/her staff– and, let them get to know you. Volunteer, go to public and private events, send birthday cards– be creative.

Although it varies by person/office– generally speaking, a personal visit has the most weight followed by a snail-mail hand written letter, then phone call, then email or fax. You can– and should– ask the staff member you talk to what works best for them.

To get an appointment all you have to do is ask for one. It’s really pretty easy– call the scheduler in their office and set it up.  You can meet with your elected official at their local office during a home visit– or at their government office. Typically summer time is “downtime” and therefore the best chance to chat. When you do get an appointment– Be respectful of their time– if they spent an hour with each of us they wouldn’t have time to cast votes or see their kids.

Don’t allow yourself to be intimidated. Our elected officials are people like us whose power is that which we gave them. When you think of these people like that, it’s easy to talk to them. 

I sometimes take my son along when I go on visits or attend rallys and, I do believe that he needs to grow up understanding the power of the common man’s voice. He needs to understand the value of his vote. He needs to learn to ask for what he needs. However, parents must weigh privacy against impact and education. Many private citizens have had their lives torn apart by becoming involved. Personally, we haven’t had any negative experiences as a result of our very public involvement and for that I’m thankful– but, it’s important for each person/family to consider this potential downfall.

My Congressman, John Boccieri,  is up for re-election. Our family is volunteering and donating to his re-election campaign. It’s important to us to keep this man who, despite personal threats, voted for our son to get insurance.  It’s important to us to have representation who “gets it”.  Whether we had gone to Washington to stand with him as he made his announcement of support for healthcare reform, we would be supporting our Congressman because thanks to John Boccieri, my son will have insurance on October 1, 2010.

As parents we have a powerful, passionate voice– one that knows the daily struggles, one that knows our children’s needs. Let your voice be heard!





Federal Funding for Autism Research

3 04 2010

One in every 110 children has autism. One in 70 boys is affected. There are almost 750,000 children in the United States who test somewhere on the autism spectrum.

In FY 2008, Federal spending on autism research was just $177 Million and is expected to increase to $282 million in FY09 due to $89 million in one-time stimulus funds…   That’s less than $40.00 per person with autism in the United States. 

Federal Funding for Defense Research in FY2009: $6,692 Million

“During his campaign, President Obama committed to $1 billion of annual federal spending on autism by 2012. In October, he identified autism as one of his administration’s top three public health priorities. This new prevalence data must compel Congress to take action to fulfill the President’s promise in the upcoming FY 2011 budget process,” said Mark Roithmayr, President of Autism Speaks.

It’s time to write our elected officials… and hold them to their promise. http://www.usa.gov/Contact/Elected.shtml





Wearing Blue for World Autism Awareness Day

3 04 2010

Yesterday was World Autism Awareness Day (WAAD) as declared by the United Nations.

While watching the evening news, I noticed that MSNBC’s Chris Mathews was wearing an Autism Speaks puzzle piece so, I started bouncing around to see if any of the other networks were honoring this day… CNN’s John King was wearing blue but, his guest, Governor Strickland of Ohio was in red… On Fox Sheppard was in pink.

My family all wore blue, my Facebook friends wore blue and  the sky was even blue… but, the press (with the notable exception of Chris Mathews) didn’t acknowledge WAAD. And, I couldn’t find a single special on the topic.

It’s sad that this epidemic is a footnote– or rare news story– when 1 in 70 boys born today– 1 in 110 children– have autism. Surely they don’t think it’ll just go away if they ignore it…

Remember Swine Flu? Bird Flu? Just plain old regular flu? The numbers weren’t anywhere as high as autism’s and they led the news… funding for research and development of vaccines was astronomical but, the Epidemic that is Autism is relegated to a single line in the news casts if mentioned at all.

Don’t get me wrong– I appreciate any positive mention of accomplishment or discovery but, I wish that the attention given to comparatively minor outbreaks would be given to this disorder– and the boy who has autism that is dancing in my kitchen as I write.

When the 1 in 110 is enters the workforce or applies for government assistance they will notice… it will be the lead story… I hope it’s not too late for this generation of children with autism.

I challenge you to write a letter to the editor of your local paper, post a blog, write your elected officials and/or tell your Facebook friends what autism is, how it impacts those you love. Let’s talk about autism– let’s demand the attention this epidemic deserves!

The inclusion of behavioral health services and ending of  “pre-existing conditions” in the new Healthcare law are a really good start– and very appreciated by my family.

 As our Country moves on to Education reform let us advocate for increased and improved education for children with autism. Let’s insist that colleges  provide supports needed for those with autism to succeed. We, the people, the grassroots advocates for our children–can make a difference.





New Healthcare Law: GREAT for autism

2 04 2010

April is Autism Awareness Month and a time to talk about issues that Americans with autism and their families must face. Awkward social and language skills, sensory disintegration, misunderstandings perpetuated by movies like “Rainman,” parents’ guilt for wanting a cure that would change our children and the stigma of “imperfection” is only part of it– insurance companies discriminate against those with autism in a real and deliberate way.

Healthcare reform is personal for our family because our son has autism.

The Health Care and Education Affordability Reconciliation Act benefits Americans with autism not only by putting an end to “pre-existing conditions” and, in-effect, removing the term from our language but also provides for behavioral health treatments that are proven to have significant benefits for those with autism.

According to Autism Speaks, “…behavioral health treatment is included as part of the essential health benefits package required in certain health plans. Behavioral health treatments were added to ensure that people with autism are provided with insurance coverage of medically necessary, evidence-based behavioral treatments, such as applied behavior analysis (ABA) therapy. The reconciliation bill will require the following health plans to offer at least the essential benefits package: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange.”

While some say that this law doesn’t go far enough, it goes farther than any law has gone before in ending healthcare discrimination. This benefits not only children with autism but, middle aged men with heart conditions and grandmothers with diabetes.

Over the course of the past few weeks there have been significant threats made against our elected representatives because of their support of healthcare reform. These reprehensible threats have not been limited to adults who are public figures– their children have been threatened! Congressman Boccieri’s family is at risk because he stood up for our children– for the 1 in 70 boys born today with autism who cannot get healthcare insurance.

Now it’s our turn, the millions who benefit from John Boccieri’s personal and political sacrifices, to proudly stand with him because he believes, as we do, that pro-life doesn’t end at birth.





Ten Things Every Child With Autism Wishes You Knew: Part 7; Focus On What I Can Do

11 02 2008

As I’ve mentioned before (Six times now) I recently finished reading the book “Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The full article can be found on-line and the book is available at Amazon.com. Here’s the seventh part from an article by the same name: 

Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.”  Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided.  Look for my strengths and you will find them. There is more than one “right” way to do most things.

I read a great blog this morning–  “Soccer Moms” February 6th on http://asdmommy.wordpress.com/  Check it out. C’s mom puts it so well!  (Thanks, Darcy!)

We need to pick our battles, work on encouraging and building self esteem in our children (be they autistic or not) and strengthen their skills.  Does it really matter if they score a goal? Does it matter if they are exceptional musicians or mathematicians?

What does matter is that our children are confident and complemented. What does matter is that they are loved for being themselves. What does matter is that they try.





John Edwards on Autism

18 01 2008

I spent some time looking around John Edwards’ website and in his blog section the mother of an autistic 12 year old (Austin), prouddem316 writes of Mr. Edwards: “He has looked me in the eye and said “things will change for kids like Austin” and I believe him, I do.” http://blog.johnedwards.com/user/prouddem316

I haven’t looked him in the eye. I don’t know whether to believe him or not… a debate about Autism would sure help!

I emailed Edwards’ campaign this morning and so far no form letter– points for him! :) Obama and Clinton both sent form letters referring me to their sites… OK. I don’t expect them to call me but, come ‘on… that didn’t help. I’ll wait to see what becomes of the email to Edwards.





Autism is my Giant

14 01 2008

Our minister is doing a series of sermons on Heroes of the Bible… you expect the usual– Daniel, Saul (Paul), Esther, Abraham, Moses… But who is Caleb? I’m the daughter of missionaries– was there whenever the Church doors were open… and I really couldn’t remember this guy…

Caleb was Joshua’s sidekick. (You know the wall of Jericho– Joshua and the trumpets the wall came tumbling down…) Anyway, Caleb was a good guy.  He was sent into the Promised Land with Joshua (and several others) to check it out before they went in.  Caleb came back and told the people of Israel that it was amazing! “We gotta go there! Sure, there are some giants but we can take ‘em!” To make a long story short– God approved of Caleb’s report and promised him the land they had seen.  45 years later– by now Caleb was 85– Caleb goes to Joshua and says it’s time. “I’m ready to go fight the giants and take possession of the land God promised me.” (Obviously this is paraphrased…)

Forgive me if I have taken too many liberties with the script but, each of us has a giant… be it an unhappy marriage, money issues, childhood pain– or Autism.

Autism is my giant. I love it and hate it. I love who it has made my son and I hate that it penetrates every area of my life… I hate that it makes simple (simple for me) things so difficult for my son. I hate that when it’s time to go– it’s time to go.  The red shirt goes with the white vest. All food is white and language is difficult… I hate that my son can’t tell me what he wants to be when he grows up… 

I’m really conflicted about wanting it to go away because in some way it makes me feel like I don’t love J the way he is– but I do! I don’t want him to be somebody else– I just want it to be easier for him– and, when I’m being painfully honest; easier for me…

So, Autism is my giant– and, here I am ready to battle it! I can take it on!





Hey! Candidates– watch this before you finalize your healthcare plans!

12 01 2008

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214





Ten Things Every Child With Autism Wishes You Knew- Part 2; My Sensory Perceptions Are Disordered

12 01 2008

Here is part two of a ten part series from the new book I’m reading: Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The following is an excerpt from the article by the same name:

My sensory perceptions are disordered.  This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me.  The very environment in which I have to live often seems hostile.  I may appear withdrawn or belligerent to you but I am really just trying to defend myself.  Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute.  Dozens of people are talking at once.  The loud speaker booms today’s special.  Muzak whines from the sound system.  Cash registers beep and cough, a coffee grinder is chugging.  The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums.  My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive.  The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out; I’m too nauseous.

 Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated.  The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing.  There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion.  All this affects my vestibular sense, and now I can’t even tell where my body is in space. In the book she talks about feeling like you’re always on a roller coaster– fun for three minutes but can you imagine going through your daily routine on a roller coaster? Making coffee alone would be enough to ruin your day…

In light of Sensory Disintegration– I am so proud of my J! He handles the off-kilter-ness of his world so well!  I’d be hideous!!  (And, my husband who moans for hours over a hangnail… yikes! What would he be like?) So, J’s outbursts aren’t rebellion, manipulation or bratty-ness– they are genuine cries for help– “Get me out of here”, “End my suffering!”

There are lots of different manifestations– Hyper-sensitive (Clothes hurt, the washing machine is too loud, the light is too bright…) and Hypo-sensitive (Yearns for deep pressure, louder, brighter, harder). J is Hypo-sensitive. He likes walking barefoot in gravel and loves to wrestle. He also is a recovering headbanger.  Identify what your child is– and work with it…

I believe that J will be a productive part of society and this book– the information in it– is a stepping stone. I highly recommend it to all who live with Autism– parents, teachers, grandparents, ministers, Sunday school teachers, lifeguards at the Y… It is up to us– the guardian’s of these kids to provide the people in their lives with this information.

An article by the same name is available on-line.





Hillary Clinton Promised to Find Out What Causes Autism

8 01 2008

A couple of nights ago I had CSPAN on while drifting to sleep and a Clinton Speech in New Hampshire came on. She brought up Autism– without being asked anything about it– and promised to find out what causes it. Was I dreaming?

Can she make that promise while endorsing mandatory vaccines? Seems a bit contradictory since vaccines (Thimerasol) seem to be the most likely cause. (At least Ron Paul’s health-care plan gives us a choice on vaccinations… ) There are certainly other theories– older father, environmental causes, and heredity are just some of them. Another theory for the explosion in autism diagnosis is the expansion of the definition. In past generations, people who were high functioning might have just been considered eccentric.

I don’t have any answers and,  apart from living with an autistic child and reading everything Temple Grandin writes, I have no expertise.

While I applaud Mrs. Clinton’s ambitious promise to find out what causes Autism, I’m skeptical that she can actually do it.  And, if it matters so much to her why hasn’t she done anything as a member of Congress?Don’t they hold the purse strings?

Any politician would be fool to claim apathy towards those of us who’s lives are affected by Autism– but, what have any of these folks done? Huckabee got a $400 haircut to benefit Autism Research– big deal. Richardson actually expanded services in New Mexico. What have Edwards, Clinton, Obama, McCain, Romney, Paul, Thompson and rest of the pack done?

Hillary Clinton talks about her track record– accomplishments– what has she done for the “least of these”? Am I missing something? Has she done something that I’ve missed?

I welcome your comments and am an undecided Ohio voter. I do vote and will vote for the person who, in my view, is the strongest on the Economy and on Autism.








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