My amazing boy who has a “pre-existing condition”– autism– has insurance thanks to the hard work, and courage of good people like John Boccieri. I will always be thankful to him, his staff and his family for all they had to put up with because of people who didn’t understand the benefit of passing this into law. Thank you!
This means more to me then you’ll ever know…
“How do you show appreciation? Appreciation is an emotion. It’s a feeling. You can’t draw a picture of it. Why do people want everyone to act just like they do. Act like they do.
And if you don’t — If you don’t, people make the assumption that you do not feel what they feel.
And then they make the assumption– That you must not feel anything at all.”
Anything But Typical by Nora Raleigh Baskin, a Schneider Family Book Award winner, is wonderful in a confusing sort of way. It’s a story for adolescents written from the perspective of a 12-year-old on the autism spectrum. It addresses friendship, outbursts, sensory issues, family dynamics and a boy’s first crush.
It deals with bullying.
“…He is laughing more. Louder. ‘You want to know what her name is?’ he is saying. …My hair hurts. My chest is tight. ‘I bet her name is Retardo Girl,’ the boy says. No, I am thinking. Her name can’t be Retardo Girl. Can it? ‘And I bet she rides the little bus to school’ And then I figure it out. He is just being mean. When a dog gets mean and bites a person, it’s the law that they have to put that dog to sleep. This boy is being mean. He is lying. He doesn’t really know PhoenixBird. I have nothing to worry about. For some reason my head is still shaking. But I can breathe.”This isn’t a pity party or some veiled attempt to explain to neurotypicals (NTs) what it’s like to have autism– although I think it does.
“My head exploded. There was no way to stop all the molecules that started penetrating my skin. My hands flew off my body. My body flew into a million little pieces. I could smell the fresh coffee that Aunt Carol and my mother had put up for desert as we hurried out the front door. I could smell the pastries she would have put out, and I wanted one.”Anything But Typical is a story in its own right whose main character is an individual with his own history, his own likes and dislikes, his own wants, tastes and fears.
It’s given me some insight into my 10-year-old and cautioned me about making emotional demands. I wouldn’t say that Anything But Typical is a must-read– but, it’s a good read that made me think.
J has been on the Daytrana patch for about 3 years now… we put it on before he wakes up and take it off as soon as homework is done in the evening. We’ve gone up on the dosage and gone back down and generally speaking it’s been good.
Lately, however, we’ve noticed that there is a bell curve on the effectiveness of Daytrana during the day.
Not sure if there is a moral to this story but, I talked to his teacher and this is an accurate portrait of his day… so, I’m going to talk to J’s doctor and see about switching meds at Christmas Break so that if it doesn’t go well, we can go back to the tried and true-ish when school starts back up.
By the way– we have recently figured out that Band Aid brand blue no hurt antiseptic wash works great on the red-sore icky spot the patch’s adhesive leaves behind… Just thought you’d want to know.
The Republicans think my son is a wrecked car with “autism”
Mike Huckabee:
http://www.youtube.com/watch?v=GoCnxnStMpU
Sharron Angle:
http://www.youtube.com/watch?v=9M46hn8qtJI
Why in the world would any family or friend (teacher, doctor, therapist) of a child with autism vote for the Tea- GOP?!
Here is the link to write Ms. Angle a little note:
http://sharronangle.com/contact
Here is the link to contribute to Harry Reid:
https://secure.harryreid.com/ee/index.php/contribute
This woman has picked a fight with the wrong people… let’s let her know!
Today it became illegal for children with developmental disabilities to be discriminated against by health insurance companies– Yes! Mr. Biden! This IS a big F*#@%ing deal!!
But, where is the parade? Families celebrate silently and politicians who voted for it shy away from the topic unless they are defending their vote… the President has taken 6 months to start talking about it in earnest and republicans are lying about it.
Insurance companies are having tantrums and refusing to play– that gets the attention of the media. Republicans are proclaiming they will repeal healthcare reform– that gets the attention of the media.
But where are the families who benefit from this law? Why are newspapers burying the story on page 5 when full page covers were given to protests prior to passage? Why are politicians campaign websites missing the healthcare link under “issues”? The silence is deafening.
MY SON HAS INSURANCE TODAY BECAUSE OF HEALTHCARE REFORM!! Children with developmental disabilities– autism, down syndrome ( Sarah, that includes your son!)– can no longer be discriminated against! Short of a cure for autism, or truely effective treatment, the end to healthcare discrimination is the biggest thing that can be done for children with autism (Autism Speaks)! So– where’s the parade?
I call upon those who voted for this law (Sherrod Brown and John Boccieri– MY SON’S representatives)– for families who spent years fighting for this day– for teachers, doctors,therapists and advocates of children with developmental disabilities– for the media who championed this law– CELEBRATE! This IS a Big F*#@%ing Deal!!
Autism is no longer an uninsurable pre-existing condition
For well over a year we fought for the opportunity to pay for insurance for our son who has, until this month– been denied on the basis of his “pre-existing condition”. Jay has autism. He’s healthy and happy. And now… he has insurance!
I am thankful to so many who had a part in making this happen… to family and friends… to politicians and insurance companies who gave me lip service and made me angry… but, it really came down to our Congressman– John Boccieri, who took a big political chance… whose family endured threats and as recently as last week was on the front page of the NY Times with a man’s finger in his face… He voted for healthcare reform.
I don’t believe that when President Obama signed HCR he had any thought of the children with autism who were denied this often taken for granted thing– but, his signature gave my son a little piece of normalcy. For that I will always be thankful.
The Republicans have sworn to work for the repeal of HCR… This would be a huge step backwards… and, we can not allow it to happen. Vote. Stand up for those who, like Congressman Boccieri, have stood up for our kids!
Tonight, my son goes to bed with insurance. And, I can sleep knowing that what I did mattered.
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!
