ABOARD's Autism Connection of PA 

Fall Conference 2013

BRAINSTORMS:  

AUTISM SPECTRUM DISORDERS AND 

CO-OCCURRING CONDITIONS

Friday, November 8, 2013

8:30 a.m. - 4:00 p.m.

Hilton Garden Inn

Pittsburgh/Southpointe

1000 Corporate Drive
Canonsburg, PA 15317

REGISTRATION INFORMATION

Fee includes lunch, refreshments and handouts

Parent, Family Member, Student, or Individual with ASD - $65

Professional (without credits) - $95

Professional (including credits) - $145

Presenters: 

Judith Miller, Ph.D.

Clinical Psychologist, The Children's Hospital of Philadelphia Center for Autism Research (CAR)

Assistant Professor at the University of Pennsylvania, Perelman School of Medicine

Scott Faber, M.D.

Developmental Pediatrician, The Hospital at The Children's Institute

Miya Asato, M.D.

Program Director, Neurodevelopmental Disabilities Residency Program, Children's Hospital of Pittsburgh of UPMC

Associate Director, Child Neurology Residency Program, Children's Hospital of Pittsburgh of UPMC

Co-director, LEND Program of Pittsburgh

Assistant Professor, Pediatrics and Psychiatry, University of Pittsburgh School of Medicine

Jessica Kettel, M.D.

Assistant Professor, Psychiatry, University of Pittsburgh School of Medicine

Medical Director, John Merck Child & Adolescent Outpatient Clinic, Center for Autism and Developmental Disorders, Western Psychiatric Institute and Clinic of UPMC

Assistant Professor, Psychiatry, University of Pittsburgh School of Medicine

Carol Utay, Ed.D.

Executive Director of Total Learning Centers

This conference will outline the most common co-occurring conditions in individuals with Autism Spectrum Disorders, including intellectual disabilities, anxiety, tics, attentional issues, epilepsy (seizures), and the pathophysiology affecting gastrointestinal tract and brain functioning. Audience members will learn about both the overlap and distinguishing features of these disorders in relation to autism in order to better differentiate between them. This will lead to intervention plans that better target the true underlying difficulties of the individual.

Register at :

http://www.aboard.memberlodge.com/Default.aspx?pageId=260524&eventId=737837&EventViewMode=EventDetails

THE LION KING - AUTISM - FRIENDLY PERFORMANCE!!!

The Pittsburgh Cultural Trust is proud to partner with Disney Theatrical Productions for this very special performance of Disney’s The Lion King. This presentation will be a sensory-friendly performance that allows families with members on the Autism spectrum to experience a regular Broadway production with several alterations that meet the needs of the audience. Pittsburgh will be the third city to offer this type of program, and The Pittsburgh Cultural Trust remains committed to making theater and the arts accessible to all audiences.

http://www.trustarts.org/visit/pages/autism-friendly-performance/

WHEN

Saturday, September 21 2:00pm

WHERE

Benedum Center
237 Seventh Street, Pittsburgh, PA 15222

WHAT

Special Autism-Friendly Performance of Disney’s THE LION KING

• In consideration of the needs of the audience, this theater experience will be slightly altered including setting the house lights at half, cutting the strobe lights and softening intense sounds. You will enjoy a Broadway theater experience in a judgment free environment.
• Specially trained volunteers will work the show to provide audience support.

TICKET INFORMATION

We are also proud to offer special prices to allow all patrons a chance to see a Broadway show with their family and friends. Please note that only members of the community who have a family member or friend on the autistic spectrum or with another intellectual disability will be permitted to purchase tickets to this performance.

• Orchestra & Director's Circle Tickets: $49
• First Tier: $39
• Second Tier: $19

Only members of the community who have a family member or friend on the Autism spectrum or in need of a sensory-friendly environment may purchase tickets to this performance. We do welcome family and friends to experience the show together. A number of questions must be answered at point of purchased to complete the ticket transaction.
To purchase tickets, you must first fill out form.

 VISIT THIS LINK FOR FORM http://trustarts.culturaldistrict.org/event/5779#tab=registration

MORE INFORMATION

• Social Story (PDF)
• Media coverage
• Autism Theater Initiative History

Special thanks to Autism Connection of PA for their contributions in support of this event. Please visit www.autismofpa.org for more information about autism and related conditions.
Special thanks to the Jack Buncher Foundation for their support.

THANK YOU FOR ANOTHER SUCCESSFUL HIGHMARK WALK FOR A HEALTHY COMMUNITY!!!

 

 Thanks to the generosity of so many we beat our goal from last year and our WPAL team raised over $600.00 for ABOARD Autism Connection!

 

 

It was a beautiful day in the city as we walked the North Shore with hundreds of people to support our local Human Services organizations!

 

We are looking forward to next year and have some great ideas for events to raise even more for this great local resource that helps so many families all year!

 

 

 

 

 

 

 

 

 

URGENT REQUEST! PLEASE HELP KEEP STUDENTS SAFE

URGENT MESSAGE FROM WRIGHT"S LAW!!!! Keeping All Students Safe Act (HR 1893) http://www.wrightslaw.com/nltr/13/al.0514.hr1893.htm On May 9, Congressman George Miller (D-CA), ranking member of the House Education & Workforce Committee and Congressman Gregg Harper (R-MS) introduced the Keeping All Students Safe Act, HR 1893, a bill to protect all students nationwide from restraint and seclusion.  Please CALL your members of Congress and ask them to Cosponsor and Support the Keeping All Students Safe Act, HR 1893.  Dial 202-224-3121; ask for your Representative’s Office, and then ask for the education aide.  Why should they support this Bill? The Keeping Students Safe Act will: ban restraint/seclusion except in emergencies where someone is in danger of physical harm require that parents be informed if their child was restrained/secluded on the same day that the event occurred ban restraints that impede breathing, mechanical restraints, and chemical restraints prevent restraint/seclusion from being used when less restrictive alternatives, like positive supports and de-escalation, would eliminate any danger  require that if children are placed in seclusion rooms, school staff must continuously visually observe them ban dangerous aversive practices that threaten safety; require the collection of data; and require appropriate training of staff Thanks to everyone who signed onto the letter from 200 organizations in support of the bill. Summary l HR 1893 Bill l Congressman Miller's speech l Legislative Advocacy

Instructions for Contacting Congress to Support the Bill Please call your Congressional Representatives and ask them to cosponsor the Keeping All Students Safe Act, 202-221-3121.  Ask for your Representative.  Then ask for his/her education aide. You can find your Representative on the House of Representatives website:  http://bit.ly/RepWrit You can also go to that link to send an email message directly to your Representative, but it is much better if you call.

Restraint, Seclusion, and Use of Aversives: Proposed Virginia Regulations Virginians:  Please Tell the Virginia Board of Education to Change Regulations Permitting the Use of Aversives, Prone Restraint, and Other Harmful Behavioral Practices upon Children in Private Schools. More about the Proposed Regulations. There is no reason to permit restraint that impedes breathing or impairs life, or the other practices. They are not effective and are dangerous. It is important for Virginians to share their views with the Board by sending comments to the Virginia State Board of Education at BOE@doe.virginia.gov Please get your comments in before the May 23 meeting. Get suggested comments you can make to the VA BOE. VA Special Education l Legislative Advocacy l Proposed Regulations Link to this alert on Wrightslaw: http://www.wrightslaw.com/nltr/13/al.0514.hr1893.htm

VICTORY for an individual with Autism thanks to the Pennsylvania Health Law Project

PHLP Preserves Health Services for 15-Year-Old with Autism

http://www.phlp.org/home-page/about

Earlier this month, the mother of a 15-year-old boy, “Daniel”, called PHLP after learning her son’s residential treatment provider would discharge him because of inadequate insurance coverage. Daniel receives treatment for his autism at a Residential Treatment Facility (RTF). However, when Daniel’s insurance transitioned from Medicaid to Children’s Health Insurance Program (CHIP), CHIP's coverage failed to meet all his health needs. In particular, CHIP would not cover Daniel’s level of treatment. Therefore, the facility planned to release him, even though he was not ready to be discharged from that level of medical treatment.

PHLP immediately stepped in and reviewed Daniel’s situation. We determined that the Pennsylvania Department of Public Welfare (DPW) inappropriately terminated Daniel’s Medicaid coverage. DPW should have placed Daniel in a different Medicaid coverage category rather than send his case to CHIP. A few days after PHLP’s outreach to state officials, DPW corrected its mistake, reinstated Daniel’s Medicaid benefits and he continues to receive the important health treatment he needs.

Thank you, Matthew Bent! We need solutions to bullying NOW!

I saw this amazing post tonight on Facebook under Mashable and it struck a cord for me once again. I have been trying for years to bring awareness and action to the fact that bullying and lack of support from schools has become the biggest issue facing today's kids.

I take calls and receive emails and messages on Facebook weekly from parents sharing their horrifying stories of their children being traumatized and victimized in school. The saddest part is 99% of the time the schools they attend lack in intervention. The parents are told not to worry or that things will be taken care of. They never are.

Parents have had to resort to hiring lawyers, homeschooling or moving to a new district all together to escape the torment. Parents teach their kids to stand up for themselves and when they do, they are hit with a suspension and told zero tolerance. Most of the time the child who finally strikes back has taken months, sometimes years, of torment and no one has helped them. It is their only way to make it stop. When will we wake up? When will we see what is happening?

Here is an article I wrote years ago. I have been trying to get the message out there with countless others, yet I do not feel we have moved ahead in any way.
http://www.examiner.com/article/bullying-can-cause-devastating-effects-and-trauma-for-kids

As I was looking through my stats this evening to see what information people were viewing most on our support blog, I noticed we had the most hits on one particular page. It is the SAMPLE BULLYING LETTER TO SUBMIT TO SCHOOL. We had a comment on this page as well that gripped me as I read the parent's powerful words. The reason is, it is not just the kids who are bullying our kids. Staff are can be just as involved and yet it seems to be something no one wants to talk about.

Our group met this month and we watched the movie Bully together. I had viewed it previously but this time it resonated more concern with me as those who surrounded me gasped and shared comments on how familiar this all was for them.

It seems many of us are shouting from the roof tops for a solution, for acknowledgement that this is a huge epidemic. Kids with special needs are even more susceptible to the damage this causes. The trauma that is a result of bullying, will have devastating effects for years to come. Many have resorted to taking their own lives to stop the pain. How can we ignore this any longer? How can we sit back and say "It is not in my community. It is not in my school."

Where is the professional help and guidance our schools need to help our kids cope and resolve issues that many times are more then they can stand? We care so much about test scores and funding for academics. How can kids learn when they do not feel safe in the building they have to report to everyday? Do we really think they can focus on facts when they are on high alert for survival.

I have so much more to share and I would love to see a real discussion begin. Those who have visited before and viewed these topics, please know you are not alone. We need to get attention to this situation so please share this link and share your stories and ideas in the comments below.

Thank you Matthew Bent for advocating for your son and millions of other children who need the schools to step up and do something to help. Enough is enough! Save our kids!



*****Update 04/22/2013

Check out the interview on the TODAY show. I am so glad to see this gaining national attention. We need to continue to send a message that this will not be tolerated and brushed under the rug anymore. We have lost too many young lives and this has devestated too many families.
http://www.advocate.com/youth/2013/04/15/watch-dad-stands-behind-bullied-son-facebook-gets-school-response

We are saddened by the recent events at the Boston Marathon today. We offer our prayers to all who are affected by this tragedy. It seems like every time we turn around there has been a horrifying situation and something else we never thought we would need to find words to talk to our kids about.

After the Newtown shootings, it took me days to decide how I would talk about the situation to my kids and how I would assure them they were safe. Especially with the media swirling with the misinformation that because the shooter has Asperger's, this somehow tied into the cause. I was so scared for both of my children returning to school but even more so because of the labeling that had started to take place against those with Autism. There were Facebook pages popping up saying that people wanted to burn someone with Autism, the media continued to stress in each report that the shooter had Asperger's. It was the most difficult conversation I ever had to have with my own child on the spectrum who already felt the world did not approve of him after years of bullying from peers and staff.

I did all I could on social media to spread awareness and share that this was not a factor of violence. Many in the community came together to get the media to retract what they were saying and how they were saying. It was irresponsible to report in the manner they did and they were putting many children and adults in danger with this ignorance.

Days later they started to retract. One by one, the media started to clarify what Autism was and wasn't and tried to fix their horrendous mistake. But, still the damage was done and I had to have the conversation with my child that he may hear or someone may say something to him about his diagnosis and the shooter. Never in my life was I prepared for such a thing. I handled it the best I could and tried to help him know how to self advocate if this occurred.

I will never forget the look on his face when I explained it. He looked at me and said, "How could anyone think I would do something like that?" I stressed that it was not personal and that people were misinformed and it was our job to tell the truth and show what that really is.

I remember thinking, what if the media was saying the shooter was tall and that was what made him do it? How scared I would be to have a target on my back for being tall and people looking at me and wondering if I was capable of such an act? I knew he was now carrying a huge weight that he did not need on top of everything else he had endured. I went back and forth about sharing this information but knew it was the right thing to do instead of someone saying something and he would not be prepared at all which could have even worse results.

There is one thing that I kept reading over and over and saw posted on Facebook again today. It helped me talk to my kids and helped me get perspective during these scary times when even as parents we are not sure what is safe anymore. I will certainly review it again as we talk about the most recent events in Boston.

 

 

We do not know why there is such hate and evil in this world and we cannot stop bad things from happening, but we can assure those we love we will be by their side and we will stand together to get through whatever may come. There is more good in the world than bad. We just need to look for it and focus on it. 

 

May the families, first responders, community and our country find peace and assurance in the fact that many are praying and mourning with those impacted by this act and during this difficult time. You will rise again and we are all here to make sure of that.