Looks like it's all going to work out just fine ...
HB 1150 Is Approved by the Pennsylvania House
(Harrisburg, PA - July 2, 2008) Last night, House Bill 1150, the autism insurance reform bill, was passed by the Pennsylvania House with at vote of 203-0. The bill had been returned to the House after being amended and passed by the PA Senate. The bill will now go back to the Senate floor for final passage.
From PA House Speaker Dennis O’Brien,
“I am proud to report that the House of Representatives today made a several small but fundamental improvements to House Bill 1150 that will strengthen its scope of mandated coverage for autism services. I can now say in confidence that House Bill 1150 is the best autism insurance reform bill in the country.
This success was made possible by the tireless efforts of hundreds of autism advocates from across the state and beyond who made their voices heard here in Harrisburg.
With your full support, I offered an amendment to include in this legislation precise definitions of mandated care. These definitions ensure than the bill will cover essential autism services, including those to prevent regression.
The House heard your voices, and accepted my amendment unanimously. In accordance with my agreement with Senate leaders, the Senate is expected to concur with my amendment and send the bill to the Governor Rendell for his signature in the next few days.
Thank you all – this bill was a long time in coming, and we could not have done it without your support
-Denny
Read the full text of the bill and read continuing updates at www.autismvotes.org/pennsylvania.
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Here's the latest on HB 1150. Please take action and stay tuned!
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Last evening the Pennsylvania Senate Appropriations Committee passed the autism insurance reform bill, 26-0, with the support of bill sponsor Senator Jane Orie. The Leadership of the Senate pledged a vote on the bill on the Senate floor on Sunday evening.
The vote was unanimous, with the Democrats enthusiastically joining the GOP majority, and the bill now moving forward, if signed into law, would be the strongest autism insurance mandate yet achieved in the nation.
The Pennsylvania bill provides $36,000 a year for Applied Behavior Analysis and other necessary treatments up to age 21, with no lifetime cap. It also creates a first ever, under Pennsylvania law, expedited appeals procedure for denied claims, as a safeguard to ensure the law is followed. The bill also turns the existing state welfare program for autism into a statutory requirement, to ensure that those who receive government provided services can continue to do so, while allowing for the development of a private sector delivery system with insurance reimbursement, offering families an alternative to coverage through Medicaid.
The Pennsylvania bill ends discrimination for individuals with autism, and provides them the same medical necessity standards as afforded individuals with cancer, diabetes, and the common cold, allowing individuals with autism to be treated as all others are in the private insurance market.
Individuals with autism deserve the same quality of care that all individuals with chronic and severe health conditions receive.
We have the utmost respect for Speaker of the House Dennis O’Brien. Speaker O’Brien has dedicated his career to improving the lives of individuals with autism. There would be no bill at all without Speaker O’Brien’s passionate leadership for these many years. We trust his judgment as to how the House should respond to the Senate bill.
Please call your own Senator and ask them to support HB 1150. Remind them of how important this is to your family.
For more information on HB 1150 and the latest developments in the Pennsylvania legislature, please stay tuned to www.autismvotes.org/pennsylvania .
Elizabeth Emken
Vice President of Government Relations
Autism Speaks
Sunday, June 29, 2008
Wednesday, June 25, 2008
Autism: What to do?
Another incident involving a child with autism being removed from a public location hit the news this morning.
According to ABC’s Good Morning America:
An American Eagle flight about to take off from the Raleigh-Durham, N.C., airport was turned back to its gate on Monday to remove two passengers.
The culprits? An upset, autistic toddler and his mother.
By all accounts, two-year-old Jarret Farrell wasn't a happy traveler. But his mother, Janice Farrell, who said she tried everything to calm her son, believes there was no reason for the airline to kick them off the plane.
The airline disagrees, saying they were removed primarily because Janice Farrell kept her carry-on bag on the floor in front of her seat, but that Jarret's behavior added to the tense situation.
According to ABC’s Good Morning America:
An American Eagle flight about to take off from the Raleigh-Durham, N.C., airport was turned back to its gate on Monday to remove two passengers.
The culprits? An upset, autistic toddler and his mother.
By all accounts, two-year-old Jarret Farrell wasn't a happy traveler. But his mother, Janice Farrell, who said she tried everything to calm her son, believes there was no reason for the airline to kick them off the plane.
The airline disagrees, saying they were removed primarily because Janice Farrell kept her carry-on bag on the floor in front of her seat, but that Jarret's behavior added to the tense situation.
The child had been crying and screaming uncontrollably, to the point where the child's well being was in question," American Airlines, the parent company of American Eagle, said in a statement. "Though, ultimately, the parent's violation of FAA regulations was the cause for removal, both situations contributed to an uncomfortable and potentially unsafe atmosphere for our passengers and crew."
You can watch the video here.
Jack has been on many flights in his lifetime. Overall I would say he’s a fairly good traveler, although it can be stressful. For example, there was the time that Jack and I were flying back to Texas from Boston last year. We were sitting next to a very nice business traveler … who Jack promptly threw up all over. The man couldn’t have been nicer about it. The flight attendant was horrified.
When Jack was younger, Andy used to shoot daggers at me with his eyes when I held Jack on my lap instead of having him properly strapped in. I’ve received reprimands from flight attendants about this as well. I’ve always felt completely torn. Safety versus severe meltdown. It seems so simple when you type those words. Safety trumps all of course. Experiencing them is another thing altogether. Disturbing other passengers, being removed from the flight, being scratched and having my hair pulled by my out-of-control son.
Not good…
Of course, when Andy would swoop in and take over, Jack sat next to him with his seat belt securely fastened and his tray in the upright and locked position.
Sigh..
You’ll be happy to know that I no longer cave and allow the lap-sitting thing. When we get on the plane, I strap Jack in and let him fuss. I also stick a button on his backpack that says "I'm Not Misbehaving. I Have Autism. Please Be Understanding." When I get the inevitable condescending glances, I position the backpack so they can clearly see the button.
You can watch the video here.
Jack has been on many flights in his lifetime. Overall I would say he’s a fairly good traveler, although it can be stressful. For example, there was the time that Jack and I were flying back to Texas from Boston last year. We were sitting next to a very nice business traveler … who Jack promptly threw up all over. The man couldn’t have been nicer about it. The flight attendant was horrified.
When Jack was younger, Andy used to shoot daggers at me with his eyes when I held Jack on my lap instead of having him properly strapped in. I’ve received reprimands from flight attendants about this as well. I’ve always felt completely torn. Safety versus severe meltdown. It seems so simple when you type those words. Safety trumps all of course. Experiencing them is another thing altogether. Disturbing other passengers, being removed from the flight, being scratched and having my hair pulled by my out-of-control son.
Not good…
Of course, when Andy would swoop in and take over, Jack sat next to him with his seat belt securely fastened and his tray in the upright and locked position.
Sigh..
You’ll be happy to know that I no longer cave and allow the lap-sitting thing. When we get on the plane, I strap Jack in and let him fuss. I also stick a button on his backpack that says "I'm Not Misbehaving. I Have Autism. Please Be Understanding." When I get the inevitable condescending glances, I position the backpack so they can clearly see the button.
So far we haven’t made the evening news. We’re flying to California at the end of July. I’ll keep you posted.
Tuesday, June 24, 2008
Autism: Sometimes it Really does Take a Village ... and a Little Nudge
I glanced at the Caller ID when the phone rang. It was 8:30-ish and I was attempting to answer some aging e-mails as Amy lingered, waiting for me to help her wash her hair. The call was from a friend down the street.
“What’s up?” I answered….
Sweet neighbor-friend was calling to talk to me about the Summer Snapper Swim Team (say that three times fast) that was starting the next day. She had mentioned it to me before as had a couple of other neighbor-friends. It was close, it was fun, it was good exercise … Lots of the kids in the neighborhood usually participated.
It would be a perfect summertime activity for Amy.
And I hadn’t even mentioned it to her….
When I looked over the registration form and schedule, I knew there was no way it would work. Practice at 3:45. Umm...Forget it. I’m sitting on 128 South that time of day, listening to “Talk of the Nation” on NPR, while Jack naps in the backseat.
“It would be a shame for Amy to miss out …” my sweet neighbor- friend prodded. “I’m glad to take her. And I know neighbor-friend two and neighbor-friend three would pitch in too.”
And there it was again.
Kindness.
I sighed to myself. Where would I be without it? I’ve been a recipient of it countless times since Jack was diagnosed.
I still feel a little uncomfortable giving into it. Like a walking imposition.
Warning. Avoid this woman. She might actually need something from you.
But for Amy’s sake, who am I kidding, for my sake, I’ve learned to just get over the whole pride thing. Sometimes we all need a hand.
We’ve had many over the last three beautiful, challenging years. Holding us up, helping us through …
So Amy went to Snappers today. And I smiled as I sat on 128 South listening to “Talk of the Nation” while Jack napped peacefully in the backseat.
“What’s up?” I answered….
Sweet neighbor-friend was calling to talk to me about the Summer Snapper Swim Team (say that three times fast) that was starting the next day. She had mentioned it to me before as had a couple of other neighbor-friends. It was close, it was fun, it was good exercise … Lots of the kids in the neighborhood usually participated.
It would be a perfect summertime activity for Amy.
And I hadn’t even mentioned it to her….
When I looked over the registration form and schedule, I knew there was no way it would work. Practice at 3:45. Umm...Forget it. I’m sitting on 128 South that time of day, listening to “Talk of the Nation” on NPR, while Jack naps in the backseat.
“It would be a shame for Amy to miss out …” my sweet neighbor- friend prodded. “I’m glad to take her. And I know neighbor-friend two and neighbor-friend three would pitch in too.”
And there it was again.
Kindness.
I sighed to myself. Where would I be without it? I’ve been a recipient of it countless times since Jack was diagnosed.
I still feel a little uncomfortable giving into it. Like a walking imposition.
Warning. Avoid this woman. She might actually need something from you.
But for Amy’s sake, who am I kidding, for my sake, I’ve learned to just get over the whole pride thing. Sometimes we all need a hand.
We’ve had many over the last three beautiful, challenging years. Holding us up, helping us through …
So Amy went to Snappers today. And I smiled as I sat on 128 South listening to “Talk of the Nation” while Jack napped peacefully in the backseat.
Monday, June 23, 2008
Autism: Monday Morning Advocacy
Check out the packed-out hearing room at the Texas Senate Committee on Education’s Public Hearing regarding Special Education. You can watch the live webcast here. If you can’t watch it live, it will be available via archive here.
It’s time for the State of Texas to take IDEA 2004 seriously and to stop cheating special needs kids out of the free and appropriate public education they are entitled to.
And, if you live in Pennsylvania or remotely know anyone who does, your help is desperately needed. Please take time to read the action alert below:
******
Attention Pennsylvania Autism Advocates! GREAT NEWS! On June 19, 2008, an independent panel appointed by the Healthcare Cost Containment Council (HC4) released a report in favor of HB 1150. A finding like this has not occurred in Pennsylvania in over 20 years! Last fall, Senators on the Banking & Insurance Committee asked the Council to review the bill to determine whether or not it was good for Pennsylvania, and have assured our community that a favorable result from the Independent Review Panel would spell a favorable result for HB 1150. The Independent Review Panel, consisting of national experts in the fields of health policy, economics, actuarial science, and autism treatment, concluded that services covered by HB 1150 would improve the lives of children and youth with autism and do so in a fiscally responsible, cost effective manner.
IN OTHER WORDS, THE INDEPENDENT PANEL REVIEWED THE EVIDENCE AND DETERMINED THAT HB 1150 IS A GOOD IDEA FOR PENNSYLVANIA!
IT'S RALLY TIME!
Join us at the State Capitol in Harrisburg on Wednesday, June 25, 2008 from 11am -1pm to celebrate this historic event! Plan to stay afterwards to meet your Senators and give them this great news regarding HB 1150. Your physical presence is EXTREMELY important and will reinforce our desire to see this important legislation become law NOW! More information is forthcoming next week, so pack your bags now, stay tuned for more information but get ready to join us in Harrisburg! WEAR SOMETHING RED! We will have round stickers with the rally message on them for you to put on your shoulder.
We need a MINIMUM of 1000 people across the state of PA to celebrate with us and show our gratitude toward Senator White and the Banking & Insurance Committee Members at the Capitol.
Start prepping your employers that you might need a vacation day, or two, and set up carpools to get this done for your child. Start thinking about who can help you with childcare, if needed.
In the meantime, we want Senator Don White to arrive at his office on Monday morning to a voice mailbox full of positive, happy, enthusiastic and thankful messages - so over the weekend - MAKE SOME NOISE!
Here's How YOU Can Help!
1. CALL SENATE LEADERSHIP! ASK THEM TO DO WHAT THEY CAN TO PROMPT SWIFT PASSAGE OF HB 1150. Tell these Senators that an independent panel of national experts concluded that HB 1150 would improve the lives of children and youth with autism in a fiscally responsible, cost effective manner. Tell them that you want a vote on HB 1150 in June!
Senator Dominic Pileggi*717-787-4712 (Harrisburg Office) OR 610-565-9100 (For Constituents!)
Senator Joe Scarnati*717-787-7084 (Harrisburg Office) OR 814-726-7201 (For Constituents)
*NOTE: If you are their constituents, be sure to let them know you are counting on them to make this happen!
2. CALL ALL SENATORS ON THE BANKING & INSURANCE COMMITTEE!
Don White, 724-357-0151, District 41 – Indiana County
Bob Regola, 724-600-7002, District 39 – Westmoreland County
Michael Stack, 215-281-2539, District 5 – Philadelphia County
Gibson Armstrong, 717-397-1309, District 13 – Lancaster County
Jake Corman, 814-355-0477, District 34 – Corman County
Stewart Greenleaf, 215-657-7700, District 12 – Bucks/Montgomery
John Pippy, 412-262-2260, District 37 – Allegheny/Washington
John Rafferty, 610-831-8830, District 44 – Berks Montgomery
Robert Robbins, 724-588-1323, District 50 – Crawford/Lawrence
Lisa Boscola, 610-868-8667, District 18 – LeHigh/Monroe
Robert Mellow, 570-489-0336, District 22 – Lackawanna
Christine Tartaglioni, 215-533-0440, District 2 – Philadelphia
Anthony Williams, 215-492-2980, District 8 – Delaware/Philadelphia
The message is the same: ASK THEM TO DO WHAT THEY CAN TO PROMPT SWIFT PASSAGE OF HB 1150. Tell these Senators that an independent panel of national experts concluded that HB 1150 would improve the lives of children and youth with autism in a fiscally responsible, cost effective manner. Tell them that you want a vote on HB 1150 in June! If you are a constituent in these districts, please let them know that when you call.
Please stay tuned!
With everyone's focus, Pennsylvania WILL become the next state to join the club of a growing number of states across the country standing up for their kids and saying we want coverage for the treatments and therapies that our children need and deserve!
For more information on HB 1150, go to www.autismvotes.org/pennsylvania!
HAPPY DIALING! WE'LL SEE YOU ON WEDNESDAY AT THE RALLY!
Jim Bouder & Shelley Hendrix, Director of State Advocacy Relations, Autism Speaks
******
We’ll walk, we’ll run, we’ll speak, we’ll call …
We’ll do all we can to make things better for those dealing with the challenges of autism.
Thank you readers for doing anything you can to spread the word.
It’s time for the State of Texas to take IDEA 2004 seriously and to stop cheating special needs kids out of the free and appropriate public education they are entitled to.
And, if you live in Pennsylvania or remotely know anyone who does, your help is desperately needed. Please take time to read the action alert below:
******
Attention Pennsylvania Autism Advocates! GREAT NEWS! On June 19, 2008, an independent panel appointed by the Healthcare Cost Containment Council (HC4) released a report in favor of HB 1150. A finding like this has not occurred in Pennsylvania in over 20 years! Last fall, Senators on the Banking & Insurance Committee asked the Council to review the bill to determine whether or not it was good for Pennsylvania, and have assured our community that a favorable result from the Independent Review Panel would spell a favorable result for HB 1150. The Independent Review Panel, consisting of national experts in the fields of health policy, economics, actuarial science, and autism treatment, concluded that services covered by HB 1150 would improve the lives of children and youth with autism and do so in a fiscally responsible, cost effective manner.
IN OTHER WORDS, THE INDEPENDENT PANEL REVIEWED THE EVIDENCE AND DETERMINED THAT HB 1150 IS A GOOD IDEA FOR PENNSYLVANIA!
IT'S RALLY TIME!
Join us at the State Capitol in Harrisburg on Wednesday, June 25, 2008 from 11am -1pm to celebrate this historic event! Plan to stay afterwards to meet your Senators and give them this great news regarding HB 1150. Your physical presence is EXTREMELY important and will reinforce our desire to see this important legislation become law NOW! More information is forthcoming next week, so pack your bags now, stay tuned for more information but get ready to join us in Harrisburg! WEAR SOMETHING RED! We will have round stickers with the rally message on them for you to put on your shoulder.
We need a MINIMUM of 1000 people across the state of PA to celebrate with us and show our gratitude toward Senator White and the Banking & Insurance Committee Members at the Capitol.
Start prepping your employers that you might need a vacation day, or two, and set up carpools to get this done for your child. Start thinking about who can help you with childcare, if needed.
In the meantime, we want Senator Don White to arrive at his office on Monday morning to a voice mailbox full of positive, happy, enthusiastic and thankful messages - so over the weekend - MAKE SOME NOISE!
Here's How YOU Can Help!
1. CALL SENATE LEADERSHIP! ASK THEM TO DO WHAT THEY CAN TO PROMPT SWIFT PASSAGE OF HB 1150. Tell these Senators that an independent panel of national experts concluded that HB 1150 would improve the lives of children and youth with autism in a fiscally responsible, cost effective manner. Tell them that you want a vote on HB 1150 in June!
Senator Dominic Pileggi*717-787-4712 (Harrisburg Office) OR 610-565-9100 (For Constituents!)
Senator Joe Scarnati*717-787-7084 (Harrisburg Office) OR 814-726-7201 (For Constituents)
*NOTE: If you are their constituents, be sure to let them know you are counting on them to make this happen!
2. CALL ALL SENATORS ON THE BANKING & INSURANCE COMMITTEE!
Don White, 724-357-0151, District 41 – Indiana County
Bob Regola, 724-600-7002, District 39 – Westmoreland County
Michael Stack, 215-281-2539, District 5 – Philadelphia County
Gibson Armstrong, 717-397-1309, District 13 – Lancaster County
Jake Corman, 814-355-0477, District 34 – Corman County
Stewart Greenleaf, 215-657-7700, District 12 – Bucks/Montgomery
John Pippy, 412-262-2260, District 37 – Allegheny/Washington
John Rafferty, 610-831-8830, District 44 – Berks Montgomery
Robert Robbins, 724-588-1323, District 50 – Crawford/Lawrence
Lisa Boscola, 610-868-8667, District 18 – LeHigh/Monroe
Robert Mellow, 570-489-0336, District 22 – Lackawanna
Christine Tartaglioni, 215-533-0440, District 2 – Philadelphia
Anthony Williams, 215-492-2980, District 8 – Delaware/Philadelphia
The message is the same: ASK THEM TO DO WHAT THEY CAN TO PROMPT SWIFT PASSAGE OF HB 1150. Tell these Senators that an independent panel of national experts concluded that HB 1150 would improve the lives of children and youth with autism in a fiscally responsible, cost effective manner. Tell them that you want a vote on HB 1150 in June! If you are a constituent in these districts, please let them know that when you call.
Please stay tuned!
With everyone's focus, Pennsylvania WILL become the next state to join the club of a growing number of states across the country standing up for their kids and saying we want coverage for the treatments and therapies that our children need and deserve!
For more information on HB 1150, go to www.autismvotes.org/pennsylvania!
HAPPY DIALING! WE'LL SEE YOU ON WEDNESDAY AT THE RALLY!
Jim Bouder & Shelley Hendrix, Director of State Advocacy Relations, Autism Speaks
******
We’ll walk, we’ll run, we’ll speak, we’ll call …
We’ll do all we can to make things better for those dealing with the challenges of autism.
Thank you readers for doing anything you can to spread the word.
Friday, June 20, 2008
Autism: Educating our Educators
Here in Massachusetts there is currently legislation under consideration that would require special education teachers to be trained in the use of augmentative and alternative communication.
S 278 states ….that all special education and regular education teachers who apply for Massachusetts Educator certification or re-certification on or after January 1, 2008, shall receive training and preparation in the use of augmentative and alternative communication for students who are nonverbal or who have limited speech as a requirement for such certification or recertification.
Such training and preparation shall include coursework in augmentative and alternative communication and practical experience in the classroom with children that utilize augmentative and alternative communication, including but not limited to children with Autism Spectrum Disorder, acquired brain injury, cerebral palsy and other disabilities that result in limited or no verbal abilities (speech).
Makes perfect sense to me.
Many special education teachers have the best of intentions. Without proper training, however, they are destined to fall short in educating our children.
For Gabriel Poirier, these shortcomings proved tragic. According to The Montreal Gazette, in the early afternoon of April 17, Gabriel began to disturb his classmates at École Marie Rivier in St. Jean sur Richelieu with loud noises. The school specializes in teaching children with developmental difficulties.
His teachers gave him two warnings to calm down. When Gabriel continued to misbehave, one teacher took him to the corner of the classroom and rolled him in a weighted blanket, which is sometimes used to calm autistic children.
The heavy blanket was tightly wrapped around the 3-foot, 11-inch Gabriel at least four times, pinning his arms to his sides, the coroner's report said. With only the tips of his toes peeking out, the boy was left on his stomach, his head completely covered, for more than 20 minutes.
Gabriel eventually stopped making noise. The teacher went to check on him, turning him on his back. The boy appeared "listless and blue in the face," the coroner's report said.
The teacher called 911 and the school nurse tried to resuscitate Gabriel. He was already in a deep coma, however, and died the next day at Montreal's Ste. Justine Hospital.
The coroner's report cited suffocation as the probable cause of death.
"He was a very gentle boy," Gilles Poirier, Gabriel's father, said at a news conference yesterday in Montreal.
When own son Jack was three, our Texas school district insisted on fully-including him in a classroom of typical peers. Inclusion is a powerful thing; however, my son Jack is on the severe end of the spectrum and is essentially non-verbal. Our school district refused to provide Jack with an aide in the classroom, leaving him to flounder. (The old warm body approach, just in case you haven’t run across it before.)
For me, this was not just an issue about Jack being able to learn in this environment. On an even more basic level, it was a safety issue.
How would this teacher keep track of Jack and eleven other children? How would she keep him from wandering down the hall and out of the front door of the school? When I pressed our IEP team with these questions, the teacher responded that she would just “keep some Vaseline on the doorknob …”
Huh?
We hired an attorney, but pressed with the window of early intervention’s imminent closure, we elected to redirect our funds to paying for tuition in an ABA-based preschool for kids with autism. Andy's job eventually relocated our family to Massachusetts, where our IEP team scratched their heads in dismay and prompty threw the IEP from Texas in the trash can where it belonged.
Knowledge creates understanding which then results in change. I hope that Gabriel’s story will provide inspiration to educators and administrators around the world to seek out proper training so that they can succeed in educating and protecting our beautiful children.
It's the very least we could do for sweet Gabriel...Peace to you and your family beautiful boy...
S 278 states ….that all special education and regular education teachers who apply for Massachusetts Educator certification or re-certification on or after January 1, 2008, shall receive training and preparation in the use of augmentative and alternative communication for students who are nonverbal or who have limited speech as a requirement for such certification or recertification.
Such training and preparation shall include coursework in augmentative and alternative communication and practical experience in the classroom with children that utilize augmentative and alternative communication, including but not limited to children with Autism Spectrum Disorder, acquired brain injury, cerebral palsy and other disabilities that result in limited or no verbal abilities (speech).
Makes perfect sense to me.
Many special education teachers have the best of intentions. Without proper training, however, they are destined to fall short in educating our children.
For Gabriel Poirier, these shortcomings proved tragic. According to The Montreal Gazette, in the early afternoon of April 17, Gabriel began to disturb his classmates at École Marie Rivier in St. Jean sur Richelieu with loud noises. The school specializes in teaching children with developmental difficulties.
His teachers gave him two warnings to calm down. When Gabriel continued to misbehave, one teacher took him to the corner of the classroom and rolled him in a weighted blanket, which is sometimes used to calm autistic children.
The heavy blanket was tightly wrapped around the 3-foot, 11-inch Gabriel at least four times, pinning his arms to his sides, the coroner's report said. With only the tips of his toes peeking out, the boy was left on his stomach, his head completely covered, for more than 20 minutes.
Gabriel eventually stopped making noise. The teacher went to check on him, turning him on his back. The boy appeared "listless and blue in the face," the coroner's report said.
The teacher called 911 and the school nurse tried to resuscitate Gabriel. He was already in a deep coma, however, and died the next day at Montreal's Ste. Justine Hospital.
The coroner's report cited suffocation as the probable cause of death.
"He was a very gentle boy," Gilles Poirier, Gabriel's father, said at a news conference yesterday in Montreal.
When own son Jack was three, our Texas school district insisted on fully-including him in a classroom of typical peers. Inclusion is a powerful thing; however, my son Jack is on the severe end of the spectrum and is essentially non-verbal. Our school district refused to provide Jack with an aide in the classroom, leaving him to flounder. (The old warm body approach, just in case you haven’t run across it before.)
For me, this was not just an issue about Jack being able to learn in this environment. On an even more basic level, it was a safety issue.
How would this teacher keep track of Jack and eleven other children? How would she keep him from wandering down the hall and out of the front door of the school? When I pressed our IEP team with these questions, the teacher responded that she would just “keep some Vaseline on the doorknob …”
Huh?
We hired an attorney, but pressed with the window of early intervention’s imminent closure, we elected to redirect our funds to paying for tuition in an ABA-based preschool for kids with autism. Andy's job eventually relocated our family to Massachusetts, where our IEP team scratched their heads in dismay and prompty threw the IEP from Texas in the trash can where it belonged.
Knowledge creates understanding which then results in change. I hope that Gabriel’s story will provide inspiration to educators and administrators around the world to seek out proper training so that they can succeed in educating and protecting our beautiful children.
It's the very least we could do for sweet Gabriel...Peace to you and your family beautiful boy...
Monday, June 16, 2008
The Way I Want to Remember Russert
Greatness is always built on this foundation: the ability to appear, speak and act, as the most common man
~Shams-ud-din Muhammed Hafiz
I miss you already Tim.
~Shams-ud-din Muhammed Hafiz
I miss you already Tim.
Autism: Attention Texas Readers
It's time for your voices to be heard!
******
SENATE NOTICE OF PUBLIC HEARING
COMMITTEE: Education
TIME & DATE: 9:00 AM, Monday, June 23, 2008
PLACE: E1.028 (Hearing Room)
CHAIR: Senator Florence Shapiro
The committee will hear invited and public testimony on the following charges:
Senate Interim Charge: Study the effectiveness of public school programs serving special education students, including autistic students. Specifically, consider whether special education services are adequately preparing students for post-secondary opportunities. The review should also include the availability and quality of the supports and services provided by adult services agencies for individuals with disabilities. Make recommendations for improving public school special education programs and the coordination of adult education services among state agencies.
Senate Interim Charge:
Review and make recommendations regarding best practices for programs targeted to improve the academic success of limited English-proficient students. Public testimony will be limited to 3 minutes per person.
******
If you are wondering how I feel about the subject, click here.
******
SENATE NOTICE OF PUBLIC HEARING
COMMITTEE: Education
TIME & DATE: 9:00 AM, Monday, June 23, 2008
PLACE: E1.028 (Hearing Room)
CHAIR: Senator Florence Shapiro
The committee will hear invited and public testimony on the following charges:
Senate Interim Charge: Study the effectiveness of public school programs serving special education students, including autistic students. Specifically, consider whether special education services are adequately preparing students for post-secondary opportunities. The review should also include the availability and quality of the supports and services provided by adult services agencies for individuals with disabilities. Make recommendations for improving public school special education programs and the coordination of adult education services among state agencies.
Senate Interim Charge:
Review and make recommendations regarding best practices for programs targeted to improve the academic success of limited English-proficient students. Public testimony will be limited to 3 minutes per person.
******
If you are wondering how I feel about the subject, click here.
Autism: For Miguel
Miguel needs your prayers…
And so does his mom. (She is probably cringing as she reads this, but even superwoman has her limits.)
Please send some love their way today. Read more about this beautiful boy here.
You need to know him...
Please send some love their way today. Read more about this beautiful boy here.
You need to know him...
Thursday, June 12, 2008
Autism: Should Medical Insurance Cover Autism?
Many states are debating measures to force insurance companies to help cover autism therapy. This morning, TODAY’s Natalie Morales talked to NBC’s chief medical editor, Dr. Nancy Snyderman. You can view this informative segment regarding this crucial issue HERE.
You can also participate in the viewer survey regarding this issue on the TODAY Show website HERE.
In case you are wondering how I feel, considering the fact that my hands are shaking as I type this, I'll give you three guesses, but the first two don't count. My son’s severe autism was diagnosed by a pediatric neurologist. Evidence-based treatments (those recommended by the American Academy of Pediatrics as well as the U.S. Surgeon General) prescribed by his pediatrician to treat this neurobiological disorder should absolutely be covered.
Two years and thousands upon thousands of dollars into the diagnosis, none of these treatments, with the exception of a smattering of occupational therapy, have been covered by our insurance.
Here's the reality that few Americans are privy to. When insurance companies hear even a whisper of the word autism, they have one knee-jerk reaction:
DENIED.
It’s time for the discrimination to end.
Visit Autism Votes to learn how you can help. It is imperative that individuals with autism receive the medically necessary treatments they need and deserve.
You can also participate in the viewer survey regarding this issue on the TODAY Show website HERE.
In case you are wondering how I feel, considering the fact that my hands are shaking as I type this, I'll give you three guesses, but the first two don't count. My son’s severe autism was diagnosed by a pediatric neurologist. Evidence-based treatments (those recommended by the American Academy of Pediatrics as well as the U.S. Surgeon General) prescribed by his pediatrician to treat this neurobiological disorder should absolutely be covered.
Two years and thousands upon thousands of dollars into the diagnosis, none of these treatments, with the exception of a smattering of occupational therapy, have been covered by our insurance.
Here's the reality that few Americans are privy to. When insurance companies hear even a whisper of the word autism, they have one knee-jerk reaction:
DENIED.
It’s time for the discrimination to end.
Visit Autism Votes to learn how you can help. It is imperative that individuals with autism receive the medically necessary treatments they need and deserve.
Tuesday, June 10, 2008
Autism: Autistic Myopia
You have to remember that this is a spectrum and you've got people who are quite high functioning and then you've got people who can't even begin to function and for whom we would love to have a cure to at least get them to a point where they would be able to function as well as the people in this movement.
~Thomas Insel, MD, Director, National Institute of Mental Health
I breathed a sigh of relief when I heard Dr. Insel say these words on the Good Morning America segment I was watching this morning. Deborah Roberts was reporting on the Autistic Self Advocacy Network, a non-profit group aimed at advancing autism culture and advocating for "neurodiverse" individuals. According to the GMA web site, “the group hopes to radically change the way others look at autism. Their message: Stop the search for a cure and begin celebrating autistic people for their differences.”
For me, that’s sort of like someone who is slightly nearsighted telling a blind person that they shouldn’t wish for sight.
Myopic to say the least.
The autism that we deal with is not warm and fuzzy. Unlike the majority of the members of the ASAN, Jack cannot speak, type, blog or conduct interviews with the media. His autism literally paralyzes his ability to communicate. If you are a regular reader of this blog, you are already aware that I work tirelessly advocating for IDEA compliance and funding as well as the reversal of discrimination in the insurance industry against the autism diagnosis. I firmly believe that awareness creates understanding, which then fosters change. I am committed to do all I can to make things better for those with autism today.
That said, I also work to raise funds and to push for additional, cutting-edge autism research. As I testified before the Interagency Autism Coordinating Committee last month, I want to know the biology of autism. I believe in the possibility of a breakthrough. I believe that phenotyping is needed, so that effective treatments, and cures when applicable, are available.
More than likely, my son will live many more days on this earth without me to love and protect him than with. It is my job as his mom to prepare him (as well as my neurotypical daughter) to be as independent as possible. It’s the natural course of humanity. I simply cannot celebrate the possibility that Jack could be abused or lost in the world because of his disability. Even with the best services in place, survival of the fittest is a daunting inevitability in this thing we refer to as the real world.
I believe we should celebrate the gifts of those on all locations of the spectrum and we should continue to advocate for acceptance, understanding and services. However, as my big-haired, Texas grandma would say, we shouldn’t throw the baby out with the bathwater. Jack deserves a cure for his impairments.
When I look at my children, one neurotypical, one autistic, I love them completely for who they are today. I savor their unique gifts and personalities.
And I dream of the possibilities for both of them...
I like how Hodding Carter put it:
"There are two lasting bequests we can give our children. One is roots, the other is...
...wings."
~Thomas Insel, MD, Director, National Institute of Mental Health
I breathed a sigh of relief when I heard Dr. Insel say these words on the Good Morning America segment I was watching this morning. Deborah Roberts was reporting on the Autistic Self Advocacy Network, a non-profit group aimed at advancing autism culture and advocating for "neurodiverse" individuals. According to the GMA web site, “the group hopes to radically change the way others look at autism. Their message: Stop the search for a cure and begin celebrating autistic people for their differences.”
For me, that’s sort of like someone who is slightly nearsighted telling a blind person that they shouldn’t wish for sight.
Myopic to say the least.
The autism that we deal with is not warm and fuzzy. Unlike the majority of the members of the ASAN, Jack cannot speak, type, blog or conduct interviews with the media. His autism literally paralyzes his ability to communicate. If you are a regular reader of this blog, you are already aware that I work tirelessly advocating for IDEA compliance and funding as well as the reversal of discrimination in the insurance industry against the autism diagnosis. I firmly believe that awareness creates understanding, which then fosters change. I am committed to do all I can to make things better for those with autism today.
That said, I also work to raise funds and to push for additional, cutting-edge autism research. As I testified before the Interagency Autism Coordinating Committee last month, I want to know the biology of autism. I believe in the possibility of a breakthrough. I believe that phenotyping is needed, so that effective treatments, and cures when applicable, are available.
More than likely, my son will live many more days on this earth without me to love and protect him than with. It is my job as his mom to prepare him (as well as my neurotypical daughter) to be as independent as possible. It’s the natural course of humanity. I simply cannot celebrate the possibility that Jack could be abused or lost in the world because of his disability. Even with the best services in place, survival of the fittest is a daunting inevitability in this thing we refer to as the real world.
I believe we should celebrate the gifts of those on all locations of the spectrum and we should continue to advocate for acceptance, understanding and services. However, as my big-haired, Texas grandma would say, we shouldn’t throw the baby out with the bathwater. Jack deserves a cure for his impairments.
When I look at my children, one neurotypical, one autistic, I love them completely for who they are today. I savor their unique gifts and personalities.
And I dream of the possibilities for both of them...
I like how Hodding Carter put it:
"There are two lasting bequests we can give our children. One is roots, the other is...
...wings."
Saturday, June 7, 2008
Autism: Follow the Yellow Brick Road
By now Jack and I have grown accustomed to the routine. You hear of an excellent doctor. You absolutely must get in to see them. You call to make an appointment. Wait for months and months and months. Finally get there. Sit in the lobby, clipboard on your lap, writing down medical history and group i.d.'s. Jack screams for a few moments as you wait. People stare. Follow the nurse to the back. Answer questions. Show said doctor that you are a pro at shouldering the reality of it all.
Chin up. Head home.
Jack and I had another one of those appointments this week. This particular pediatric neurologist is impossible to get into, and is world renowned for her expertise in autism. Even so, autism mom friends of mine refer to her as The Wizard. You follow the yellow brick road to get to her, but even though she’s working like crazy behind the curtain, the truth is that even she has few solutions.
Still, I wanted Jack to see her. If Jack was going to need the management of a neuro for potential seizures or other unforeseen developments, I wanted to have an ongoing relationship with The Wizard.
So I picked Jack up early from school and we made the appointment on time. We sat in the lobby with the clipboard. Jack screamed for a few minutes and then bounced up on down on the chair by the window.
And then the nurse led us back.
And we met The Wizard.
And The Wizard LOVED Jack.
Now I must confess that for some reason, Jack was really laying the charm on thick that day. He engaged with her. Looked back and forth between her, the resident and me. Gave us a beautiful, dimpled smile on cue, every few minutes.
The Wizard was completely enamored.
“This guy is different!” she declared.
She drilled me with questions, which I answered rather typically I thought. But Jack’s behavior set the tone. He loved The Wizard. He flirted with The Wizard.
“His social referencing… it’s beautiful!” she went on…
We spent well over hour with The Wizard. She mentioned the word atypical over and over as I scribbled notes on the back of a sheet of scrap paper.
“I’ve never seen a kid like this. Something else is going on here and we need to figure it out.”
Wow, that's crazy...she's seen thousands of kids on the spectrum, I thought to myself. I must confess that at that very moment, I allowed it to creep in. That provocative, luxurious sensation called
Hope.
I’ve always felt so connected to Jack. Engaged. Sometimes it's hard to for others to see, but there is a sparkle there.
Normally when Jack is being evaluated or examined, we only hear words like “challenged” or “severe.”
But The Wizard didn’t use those words. To the contrary, she recognized the sparkle right away. (Maybe that’s why she has wizard status … I’m not sure…)
As I pushed the glass door open and we walked out into the parking lot, a fistful of lab-slips in-hand, I felt a new spring in my step.
Careful, I thought to myself … Remember, the wizard really doesn’t have any answers.
But hey, if happy little bluebirds fly over the rainbow … why, oh why can’t I? At least for a bit.
I elected to savor the moment.
Jack smiled and jumped into a puddle, giggling as we headed to the car.
Chin up. Head home.
Jack and I had another one of those appointments this week. This particular pediatric neurologist is impossible to get into, and is world renowned for her expertise in autism. Even so, autism mom friends of mine refer to her as The Wizard. You follow the yellow brick road to get to her, but even though she’s working like crazy behind the curtain, the truth is that even she has few solutions.
Still, I wanted Jack to see her. If Jack was going to need the management of a neuro for potential seizures or other unforeseen developments, I wanted to have an ongoing relationship with The Wizard.
So I picked Jack up early from school and we made the appointment on time. We sat in the lobby with the clipboard. Jack screamed for a few minutes and then bounced up on down on the chair by the window.
And then the nurse led us back.
And we met The Wizard.
And The Wizard LOVED Jack.
Now I must confess that for some reason, Jack was really laying the charm on thick that day. He engaged with her. Looked back and forth between her, the resident and me. Gave us a beautiful, dimpled smile on cue, every few minutes.
The Wizard was completely enamored.
“This guy is different!” she declared.
She drilled me with questions, which I answered rather typically I thought. But Jack’s behavior set the tone. He loved The Wizard. He flirted with The Wizard.
“His social referencing… it’s beautiful!” she went on…
We spent well over hour with The Wizard. She mentioned the word atypical over and over as I scribbled notes on the back of a sheet of scrap paper.
“I’ve never seen a kid like this. Something else is going on here and we need to figure it out.”
Wow, that's crazy...she's seen thousands of kids on the spectrum, I thought to myself. I must confess that at that very moment, I allowed it to creep in. That provocative, luxurious sensation called
Hope.
I’ve always felt so connected to Jack. Engaged. Sometimes it's hard to for others to see, but there is a sparkle there.
Normally when Jack is being evaluated or examined, we only hear words like “challenged” or “severe.”
But The Wizard didn’t use those words. To the contrary, she recognized the sparkle right away. (Maybe that’s why she has wizard status … I’m not sure…)
As I pushed the glass door open and we walked out into the parking lot, a fistful of lab-slips in-hand, I felt a new spring in my step.
Careful, I thought to myself … Remember, the wizard really doesn’t have any answers.
But hey, if happy little bluebirds fly over the rainbow … why, oh why can’t I? At least for a bit.
I elected to savor the moment.
Jack smiled and jumped into a puddle, giggling as we headed to the car.
Wednesday, June 4, 2008
Autism: Historic Times in DC
Borack Obama isn’t the only one making history in DC this week.
According to the Lawrence Journal-World, U.S. Rep. Nancy Boyda, D-Topeka, Kansas, has announced that Benjamin Eric Berlin, 16, will be making history this month by serving as the first person with autism to serve in the congressional page program, which began 181 years ago in 1827.
Berlin, who attends Shawnee Heights High School, said he was looking forward to participating in the three-week program to show people in Washington “that people in Kansas aren’t just a bunch of hayfield people.”
At a news conference at the Easter Seals Capper Foundation, Berlin’s mother, Mari White, described her son as an easygoing young man whose motto since he was child has been “different is good.”Berlin has Asperger’s syndrome, which is considered a milder form of autism. People with Asperger’s syndrome usually function in the average to above average intelligence range, but often have difficulty with social skills and engage in restrictive and repetitive behavior.
Berlin attended Riverside and Deerfield schools in Lawrence before moving to Topeka. He contributed as a writer to the Lawrence Journal-World as a member of the paper’s Teen Advisory Board.He has also been through the Kansas Youth Leadership Academy, volunteered with Habitat for Humanity and the Topeka-Shawnee County Public Library, and has served as a page in the Kansas Statehouse, working for Sen. Anthony Hensley and Rep. Ann Mah, both Topeka Democrats.
He was selected for the congressional page program by a board based on an essay, extracurricular activities, character and motivation. The board included representatives from Kansas, Kansas State, Pittsburg State and Washburn universities. “Ben did not get this chance because he was autistic. Ben got the chance because he was extremely involved, mature and caring, and he demonstrated that to everyone that was around him,” Boyda said.
But Boyda said that as a page Berlin will be able to show others how people deal with disabilities.In a prepared statement, House Speaker Nancy Pelosi, D-Calif., praised the selection of Berlin.“Congress is committed to ensuring that individuals with disabilities have the opportunity to participate in this historic learning experience,” Pelosi said.
Berlin said he was looking forward to working, getting paid and seeing the sights of the nation’s capital. His primary duties will be delivering correspondence and legislative materials, and answering telephones and taking messages.His mother, White, said she was apprehensive about Berlin being away from home for so long, but thought it would be good preparation for college life in a couple of years.Berlin credited his mother for her support.
“If it weren’t for her, I would be just another bump on the log,” he said.
Virtual high-five Ben. Show ‘em how it’s done!
According to the Lawrence Journal-World, U.S. Rep. Nancy Boyda, D-Topeka, Kansas, has announced that Benjamin Eric Berlin, 16, will be making history this month by serving as the first person with autism to serve in the congressional page program, which began 181 years ago in 1827.
Berlin, who attends Shawnee Heights High School, said he was looking forward to participating in the three-week program to show people in Washington “that people in Kansas aren’t just a bunch of hayfield people.”
At a news conference at the Easter Seals Capper Foundation, Berlin’s mother, Mari White, described her son as an easygoing young man whose motto since he was child has been “different is good.”Berlin has Asperger’s syndrome, which is considered a milder form of autism. People with Asperger’s syndrome usually function in the average to above average intelligence range, but often have difficulty with social skills and engage in restrictive and repetitive behavior.
Berlin attended Riverside and Deerfield schools in Lawrence before moving to Topeka. He contributed as a writer to the Lawrence Journal-World as a member of the paper’s Teen Advisory Board.He has also been through the Kansas Youth Leadership Academy, volunteered with Habitat for Humanity and the Topeka-Shawnee County Public Library, and has served as a page in the Kansas Statehouse, working for Sen. Anthony Hensley and Rep. Ann Mah, both Topeka Democrats.
He was selected for the congressional page program by a board based on an essay, extracurricular activities, character and motivation. The board included representatives from Kansas, Kansas State, Pittsburg State and Washburn universities. “Ben did not get this chance because he was autistic. Ben got the chance because he was extremely involved, mature and caring, and he demonstrated that to everyone that was around him,” Boyda said.
But Boyda said that as a page Berlin will be able to show others how people deal with disabilities.In a prepared statement, House Speaker Nancy Pelosi, D-Calif., praised the selection of Berlin.“Congress is committed to ensuring that individuals with disabilities have the opportunity to participate in this historic learning experience,” Pelosi said.
Berlin said he was looking forward to working, getting paid and seeing the sights of the nation’s capital. His primary duties will be delivering correspondence and legislative materials, and answering telephones and taking messages.His mother, White, said she was apprehensive about Berlin being away from home for so long, but thought it would be good preparation for college life in a couple of years.Berlin credited his mother for her support.
“If it weren’t for her, I would be just another bump on the log,” he said.
Virtual high-five Ben. Show ‘em how it’s done!
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