Wednesday, September 28, 2011

Autism Workshop

The Center for Autism Research and the Regional Autism Center at The Children’s Hospital of Philadelphia invite you to
Next Steps Workshop for Professionals
A workshop for professionals supporting young children newly diagnosed with an autism spectrum disorder
  • Topics include an overview of autism spectrum disorders (ASD) and accompanying conditions, how diagnoses are made, available therapies and treatments and how to decide what interventions to pursue, and tips for supporting families living with ASD
  • Presenters will include fellows in developmental and behavioral pediatrics, speech and language therapy, occupational therapy, social work, and researchers from the Center for Autism Research*
  • Participate in a discussion with a panel of parents who have made the next steps with their children
*Drs. Sarah Paterson and Gregor Kohls from the Center for Autism Research will present. Dr. Paterson is a developmental psychologist whose study investigates brain and cognitive development in the infant siblings of children with ASD. Her study hopes to pinpoint when early signs of ASD first emerge. Dr. Kohls is a psychologist whose research focuses on exploring social motivation and rewards. He currently runs the FaceStation video game intervention study and the Oxytocin treatment trial.

$45.00 per person includes Resource Binder and Continental Breakfast
$75.00 per person includes Resource Binder, Continental Breakfast, and Continuing Education Credits*

* Act 48, nursing, psychology, and social work
In order to keep costs low, lunch with NOT be provided. We ask that all participants pack and bring their lunch. Alternately, a light assortment of soups, sandwhiches, and salads are available for purchase in the 16th floor cafeteria, and there are several lunch carts in front of the 3535 building.

Price does not include parking. For directions and parking options, please visit:
Please RSVP byNovember 22nd
To Register Online, please click the blue Register Now button below.
To register by mail, please print and mail in the form on back, along with your check ($45.00 or $75.00) or money order. Checks may be made out to "The Children's Hospital of Philadelphia" with "Center for Autism Research" in the memo line.

ASD Conference For Parents of Young Adults

Elwyn and ASCEND, The Asperger & Autism Alliance, present a conference, Pathways to Independence For Young Adults with ASD.  The conference is for individuals/families with an autism spectrum disorder transitioning to adulthood or for professionals working in the field. 

Information on post secondary education options and how to evaluate them, optimizing the transition from school to employment, and practical strategies to improve organization, time management, meta cognition, self regulation, and other executive functioning skills will be presented. 

The keynote speaker at the Pathways to Independence for Young Adults with ASD will be Dr. Stephen Shore.  Also presenting is a panel of young adults transitioning into the work force, as well as a panel of representatives from post-secondary educational institutions.

This conference will be held on November 11, 2011.  Registration will begin at 8 a.m the day of the conference or you can register here online

Conference Times: 8:30 am to 4:00 pm
Held at White Manor Country Club
831 Providence Road
Malvern PA 19344

Cost: $65 w/out Continuing Education Credits
          $85 with Continuing Education Credits

The ASCEND Group is offering partial need-based scholarships on a limited basis.  One scholarship per family.  The cost for scholarship recipients is $15 for individuals with ASD or family members and $35 for educators. Download scholarship application here.

Sunday, September 25, 2011

Learning to Take The Bus

Learning to take the bus or other public transit helps all of us, even those with disabilities, access their community and the surrounding ones.  Use mass transit to go to work, go shopping, or visit friends. If you're uncertain about which bus will take you where you want to go most transit systems have someone to help you master it.  Call them to find out about travel training classes or for help determining how to get to your destination.  Schedules are available at transit hubs and other public areas.  This video is courtesy of AARP but applies to anyone who needs to get around. Even those of us who have managed to get to the ripe old age of 58 without riding the bus more than a few times. So if you're disabled, trying to cut back your carbon footprint, or just trying to make your car last longer the AARP has provided this video to help you out.

Saturday, September 24, 2011

What is Zero Tolerance? Does Your School or Community REALLY Have a Zero Tolerance Policy?

"Real zero tolerance is no concealment or silence."  This is a sentence that high school student Ellsworth Evarts IV (who has  Asperger's Syndrome) put on the back of a T-shirt. The front said "Stop bullying now. Stand up, Speak out!" Below the period of the exclamation point are red dots dripping down the T-shirt.  Ells, the T-shirt's designer and a victim of bullying in school said "The bleeding doesn't stop, even after the bullying ends."  As I read this part of the article about bullying and Asperger's, ("Aspberger's Leaves Kids Vulnerable To Bullying"  by Vinti Singh, published in the Greenwich Times September 17, 2011 issue) my heart broke for Ells and the other children profiled in the story.

Obviously these children are only the tip of the iceberg--children with disabilities are often harassed. It doesn't necessarily end with high school graduation.  They are harassed not only by 'regular ed' students but by 'more powerful' special education students. Because some students lack the verbal skills to respond the problem often escalates.

Our family found out first hand what a zero tolerance policy really meant in our school district when one of our daughters was sexually assaulted.  It meant in our district the school district would suspend a boy for a few days, but they would NOT call the police even though a crime had been committed on school property.  Selling or carrying drugs--zero tolerance, fighting, zero tolerance, but sexual assault, not such a big deal.  Something is wrong with this picture. Obviously we haven't 'come a long way baby,' especially if you happen to be disabled and female.

As we sat in the Principal's office he had the nerve to say 'Boys will be boys.'  Right to our face. I'm rarely at a loss for words.  In fact, anyone who knows me would tell you I am never at a loss for words. But there's a first time for everything and that was mine. I sat there staring at the the photos on the Principal's desk showing his son playing baseball and wondered if he'd had a daughter would his reaction have been different? Was his reaction a result of his own parenting fears? Or was he just indifferent? Lacking empathy? His reaction puzzles me to this day.

At first I thought it was just a problem with the principal.  It wasn't.  We went all the way up the chain of command in the school district--they refused to call the police and involve the school, my daughter, my husband and I did. Fortunately the police department and the District Attorney DID have a zero tolerance policy.

The young man was convicted in court. It was only later we found out his family was well known to the police in the area as 'problems'.  Oddly enough one of the Principal's reasons for not reacting differently was something along the lines of what an "exemplary student this boy was, what a good boy, it must have just been a misunderstanding." No way! Unfortunately, that fall day their family issues and problems spilled out and over into my family.  And his problems became part of ours. 

Our daughter made the hard decision to go to the police and to court.  It was not easy for her.  Either before or after. But she said, 'If I don't do something, who will?' My eyes teared up with pride and fear for her.  But to her credit she wanted to be sure he got counseling so it didn't happen again to someone else. That day she made me proud to be her mother.

Was this decision easier because she saw things in 'black and white, without gray areas?' I don't know.  I know I worried she would regret it, but all I could do was support her decision.  One of the hardest things to do when you have a child with disabilities is let them learn by experience instead of telling them what to do.  This tested my limits.  I wanted to hold her, protect her, keep her at home and home school her--but I didn't.  I supported her and yes, gave her those hugs, but I had to let her choose which path to take.  Was I right? Wrong? She did what she thought was right for her.  I couldn't take that power away from her. She went back to school, faced her schoolmates, and dealt with the fallout.

It was at that point in her life that my daughter became one of my heroes.  Young, in middle school, assaulted and yet still willing to put herself out there.  And not for vengeance.  But to be sure no one else got hurt and so that the perpetrator would get counseling. I don't know if I would have been as brave (or forgiving) if it had happened to me at her age. 

I also have to give credit to her friends who she told about the incident first--who encouraged her to tell us and the school.  They were REAL friends.  If you guys are reading this, you know who you are, thank you.  (Yeah, I know I thanked you before, but...once is never enough for something like this).

To be fair, one guidance counselor at the school was helpful to her and the Head of Special Education helped us navigate the Administration. But still no one considered it a police matter.  How sad that those in charge lacked the conviction to do what was right.  Sad they didn't REALLY have a zero tolerance policy against someone breaking the law on school property. And sad that once again the victim was victimized by those in charge. Victimized by the very people you trust your child to each day when they go to school.  Scary that you still have to send that child back to school and trust them.

So the next time you're at a PTA/PTO meeting and there is a discussion about zero tolerance, find out just who is REALLY protected by zero tolerance. You may be surprised to find that zero is only zero when it's easy and convenient for the school district.  And this isn't just a Special Education issue, it effects all students in the school.  Special education students are just often less able to defend themselves.  Kudos to those mentioned in The Greenwich Times article and to the author who presented the issue.

Read the full article in The Greenwich Times at:

Friday, September 23, 2011

St. Coletta of Greater Washington DC Area Holding Fundraiser

Always happy to promote organizations who are holding fundraisers, not only can you donate if you have something to auction, if you're looking for a program it gives you ideas of where to look.  Sounds like this is going to be a blast!

Wednesday, September 21, 2011

Drug Study For Fragile X Syndrome.

Are you an adolescent, adult or do you have a child with Fragile X Syndrome? Would you like to join the Researchers at Suburban Research Associates who are currently accepting participants for a study of an investigational drug in children, adolescents, and adults with Fragile X Syndrome.

During this 18-week research study of children and adults diagnosed with Fragile X Syndrome, all participants will receive either active medication or placebo (sugar) pills. 

Eligibility Requirements for Fragile X Syndrome Drug Study:

To be eligible for this study, participants must:
• Be between the ages of 12 and 25 years
• Have Fragile X Syndrome
• Not have any other significant medical conditions (e.g. heart disease, high blood pressure, lung disease, liver or kidney failure, unstable seizure disorder, thyroid disease)

To see if you are eligible for this study visit Suburban Research and fill in their questionnaire.  Also take the time to investigate Suburban Research. 

(I have no connection with anyone involved in this study, I am only offering the information so you can make your own decisions if you would be interested in taking part in it.)

Monday, September 5, 2011

Dial for Dollars--Welfare etc. Helpful Phone Numbers (For Pennsylvania Residents)

As a resident of Pennsylvania I thought I'd provide my readers with some important phone numbers that can assist you if you are disabled or are a caregiver of a child/or adult who is.  Phone numbers courtesy of the state of Pennsylvania DPW link.  If you live in a different state, check your state web site for a list of helpful numbers. 

Service Phone Number
Autism Services 1-866-539-7689
Benefits Helpline (Cash Assistance, SNAP, MA etc.) 1-800-692-7462
ChildLine (State Child Abuse Registry) 1-800-932-0313
Children's Health Helpline 1-800-986-KIDS
Disability Services 1-866-286-3636
Governor's Office 1-717-787-2500
Estate Recovery Program 1-800-528-3708
Personnel Information 1-717-787-5025
Secretary of Public Welfare 1-717-787-2600
Welfare Fraud TipLine 1-800-932-0582

One thing I'd like to remind all families of is it's always worth checking to see if you are eligible for programs you never thought you would be.  Many years after my children were young we found out we'd have been eligible for assistance when they were younger--we just didn't know it, so struggled along.  Being too proud to ask for assistance, or simply not knowing about eligibility, especially when your children need it, makes no sense (and no cents!).  I just wish I'd known!