Autism BR

As soon as Debra Harris heard the diagnosis confirming her son’s autism, she opened her cell phone and started calling. She has been getting and sharing information about autism ever since. She is the co-founder of the Elijah Foundation which focuses on education of parents of children with autism with usable strategies to work with their children. Debra is able to explain to all parents, parents of typical children and parents with children with autism, the clash between parents and school districts in achieving an equitable and just education for all children. We discuss real, understandable issues that have surfaced recently and thoughts for the future. Clearly Debra Harris is in the forefront of the discussion about the restructuring of our educational system.

The city council of Santa Monica withheld funds from their school district because the city council was uncomfortable with all the non-disclosure agreements that the school district was requiring to settle special education lawsuits. What are non-disclosure agreements (gag orders) and who do they help and who do they harm? Three experienced special education advocates join me in conversation: Ellie Goldberg, advocate, author and legislative chair of the Massachusetts PTA; Pat Howey, advocate and nationally known special needs presenter at WrightsLaw seminars; and Katy Franklin, advocate and a leading voice towards revising the San Francisco Unified School District’s educational practices towards children with extra needs. They explore the Santa Monica case and discuss actions by other school districts that not only harm the children the school districts are entrusted to teach, but cause all taxpayers to pay more to compensate for their school districts improper education strategies. All this, in light of current special education enrollment at 10–12 % and rising rapidly, due to epidemics of allergies and autism. As I listened to this show I developed a feeling of unease. I always thought that school district administrative personnel were working with the best interests of educating the child. I now question the validity of that feeling. I think all of us should explore if the administrators in our school districts have lost touch with that goal. This is a difficult issue to visit. We all want to trust. We all want to believe. To gag or not gag, that is the question.

In 1992 during the early days of the autism epidemic, Sally Colletti tried to register her son with autism in kindergarten at her local elementary school in New York. The teachers in the district went on strike, taking a stance against being forced to teach “those” children. When her son was in the third grade Sally was informed of an action against her son that was so out of bounds that Sally was required to agree to a gag order in order to effect a settlement. It was at that moment that Sally decided that the next day was going to be her son’s first day with home schooling. This forceful advocate for special need’s children tells me about her journey and what she learned in her two year experiment with home schooling, and then what happened after the home schooling ended and her son returned to public school. A “drafted” journey, Sally Colletti—her experiment with home schooling.

There are several converging factors that are driving the acquisition of software systems by schools to assist with the development and management of individual education plans. Costs to administer individual educations plans can never be overlooked, and it takes a lot of time to record, file, and manage student information. When the information is stored manually and put in a file cabinet, it is lost from view, no one sees it, no one can analyze it, and no one can see if the services and teaching agreed to in those plans are being carried out in a timely manner. With a computer driven system all information can be viewed at will. All compliance deadlines can be scheduled and not forgotten. With the expansion of individual education plans for all, a good computerized management system becomes mandatory because of high cost of record keeping manually. Learning Tools International has been marketing a system to keep track of individual education plans, GoalView since 1999. This is an internet-based system. The President of LTI, Cathy Zier joins me to share what GoalView does and what motivates the people behind GoalView. To some school districts, the notion of computer-based management systems for individual education plans is new. Whenever new systems are set up, it creates concern among staff and parents. Cathy demystifies the process and shares what we can get from a system like GoalView.

When you feel a school systems is not meeting your child’s needs what do you do? Tammy Glaser came to that conclusion and choose to home school her child with autism and later, her typical child. Many of us may view home schooling as an option that is not on the table. Concern with the work load and fear that we won’t do it right puts people off. Tammy Glaser tells Senior Dad Stan Goldberg what it is like to home school, what supports are in place, and how home schooling will not work for everyone, all the while encouraging parents to learn from her journey. Tammy Glaser- Home school coach

For some reason the issue of inclusion seems to invoke strong passions. Everyone views it differently. Add in the prescription for a least restrictive environment, and wow that gets everyone really churning. You can just see everyone in the room tighten their backs as they set their positions in stone. Walking blindly into this loaded mine field, Senior Dad Stan Goldberg meets educator Paula Kluth, a fifteen year veteran of special education. Paula has helped schools and school districts transition from exclusion to inclusion. She has held workshops to broaden the understanding of both parents and educators on the benefits of inclusion. The discussion moves through the hot topics and then on to some common ground when discussing the positive benefits of inclusion (it’s not just that it can be less expensive for a school district). Paula Kluth- Everyone is Included

When a parent like Katy Franklin, who has a child with autism, donates time to aid other parents, it is a gift.  Time is at a premium in her life. She is helping other parents navigate the special needs program of the San Francisco Unified School District.  Katy is a member of the Community Advisory Committee on Special Needs of the San Francisco Unified School District School Board.  The Committee sends out a newsletter twice a year from the committee to the parents of extra needs children in the district, that is distributed by the San Francisco Special Education Local Plan Area (SELPA). One issue was sent out, and then the difficulties began.  When given the second newsletter in July 2007, the SELPA manager David Wax assured the Committee that it would be translated into two languages.  This took until January 2008 but came back without any translation. A further delay was caused when the Committee was told there were “issues” with the ‘frequently asked questions’ section of the newsletter.  Katy had included the questions the Committee members are continually asked by parents in an effort to increase the knowledge of the parents.  It became an issue for SELPA because these questions and answers educated the parents on their rights in getting an equitable education for their child.   At that point, SELPA and David Wax sent a letter from a law office telling the committee that they were not allowing pages two and three to be sent out (including the question/answer section). This is a case of a government agency censoring, without authority over the Committee, but it gets worse.    Under the guise of investigating a complaint of Katy’s, SELPA sent a lawyer to Katy’s son’s school to investigate his homework and all communication between Katy and her child’s teacher.   It gives you goose bumps.   You can download the newsletter and the letter from the law office and see for yourself what SELPA doesn’t want parents to know.    After you listen to the interview that Senior Dad Stan Goldberg has with Katy Franklin please listen to the closing segment as Katy perhaps provided us with the clue for us to tease out an answer as to why some autism numbers in the SFUSD appear so out of proportion.    You can receive an email every time we post a new story to the Autism Briefing Room press this link to signup.  We won't give your email address to ANYBODY; subscribe

Do school districts lie to parents of extra needs children? Joann Collins thinks so. An extra needs advocate for over 15 years and a mother of two grown children with extra needs she has written a book about it. "Disability Deception: Lies Disability Educators Tell and How Parents Can Beat Them at Their Own Game". JoAnn Talks to Senior Dad Stan Goldberg about the book and how parents can be effective when working with schools and school districts. They talk about the shocking Autism numbers in the San Francisco schools where 1 in 48 Caucasian children are diagnosed with autism. JoAnn’s view of the current extra needs landscape will open your eyes. Warning to parents of typical children: you will be shocked to hear what your school district (country-wide) is doing in this emerging civil rights issue.

Lenny Schafer is a Mench. (Mench is a Yiddish term which means “stand up guy”.) Lenny edits an autism newsletter that is read by over 20,000 people. But that is not why I call him a mench. In 1989 Lenny’s world was falling apart. His thriving high tech business lay in ruins because of an earthquake, his marriage was falling apart, and then his son was diagnosed with autism. Professionals told Lenny there was no hope and the boy should be locked away in an institution and forgotten. Unlike 85% of the husbands whose child is diagnosed with autism, Lenny did not cut and run. He fought his wife for custody of their son and won. Lenny has devoted himself to his son ever since. Lenny believes that dirty vaccines caused his son’s autism. He has strong views on the ethics of some of our public intuitions and lawmakers, and fights to change the system through public advocacy and education in this country, which he dearly loves. I chat with Lenny about his journey, the autism issues of the day and his desire to make things better for all children who have autism, regardless of how they acquired it. Heart, soul, and compassion. A mench.

If I had to select two people to represent extra needs children I could do no better then Pat Howey and Ellie Goldberg.  Both are nationally known. Each has been an advocate for children with special needs for over 20 years.  Pat speaks at Wrightslaw presentations, training parents to be effective advocates. Ellie has a dynamic consulting practice specializing in children with chronic health conditions and healthy schools and is a board member of the Massachusetts PTA and its Legislative chair. Today we first look at what has changed in the last 20 years and then we discuss what the situation is today and what parents face in schools. The last segment of the chat gets "very political" and we face head-on some of the public health issues, what all parents need to know, and what we can all do to effect change.  Pat Howey and Ellie Goldberg leading the charge for equity and justice

John Gilmore is one of the architects of Autism United, the collaboration of several New York-area autism organizations. They recently held a fundraising walk on Long Island to fund a joint project. John tells us how it all started and how the walk came together. Cathy Moriarty is their national spokesperson and John tells us about Katie Wright’s help during the walk. Stan shares his impressions of the “Jenny on Larry King” and explains his “losing the dream syndrome”. Stan and John discuss autism organization collaborations and mergers of the future.

There is a nationwide shortage of FloorTime practitioners. Some ABA practitioners are now offering FloorTime as well. As every child with autism is different, so to is the treatment of each child. Now these practitioners have two strategies to choose from to treat a child. Katie Wright told me she uses FloorTime with her son. What is FloorTime? With the discussion of autism on such mainstream media as Larry King and Oprah it is time to explain all treatments. Two parents who use FloorTime discuss it. Katy Franklin of San Francisco and Mike Fields of Atlanta. They explain what FloorTime is and then discuss the situation with finding practitioners in different parts on the country and the combining of ABA and FloorTime at the practitioner level.