Understanding Medications

please share! Dr. DiFazio is the Director of Pediatric Neurosciences at Shady Grove Adventist Hospital and a Board Certified Pediatrician and Neurologist, with subspecialty qualification in Child Neurology. Dr. DiFazio is a former Army physician, and he spent most of his time in the military at Walter Reed Army Medical Center. While at Walter Reed, Dr. DiFazio served as the Director of the Comprehensive Spasticity Clinic as well as the Chief of the Child and Adolescent Neurology Service. He has lived in Montgomery County, MD for 12 years, and he is committed to bringing comprehensive neurologic care to his community. Washington DC "Top Doctor", 2008, 2009, 2010, 2011 Community Support Services, Inc.is pleased to present a special guest presentation on Understanding Medications for Individuals with Developmental Disabilities Understanding Medications for Individuals with Developmental Disabilities by Dr. Marc DiFazio Parents and caregivers - how many times have you wondered if you are giving your child the most appropriate medication? It's a challenging task as we try to balance: behavior concerns encourage language development avoid unnecessary weight gain, lethargy control seizures keep up with the latest developments Please come hear Dr. Marc DiFazio address these and other issues. When: Wednesday, May 30, 2012 7:00pm Where: Community Support Services 9075 Comprint Court, Gaithersburg, MD 20877 301.926.2300 Please contact Sue Hartung at thehartungs@comcast.net or call 301.869.7986 for more information. 9075 Comprint Court Gaithersburg, Maryland 20877

First Annual Cheetah-Thon!

Support the Montgomery Cheetahs! 1st Annual ‘Cheetah-thon’ to Raise Funds for Program Rockville, MD, May 12, 2012— Montgomery Cheetahs hockey players, their families, friends, and supporters will be on the ice Saturday, May 12, 2012 as part of the fundraising skate and cheer event known as the “Cheetah-thon.” The 1st Annual Cheetah-thon will be held from 5:00–7:00 p.m. at the Rockville Ice Arena, 50 Southlawn Court, Rockville, MD 20850. Montgomery Special Hockey is an adaptive ice hockey program for children and adults with developmental disabilities. In addition to physical hockey skills, the program emphasizes the development of desirable individual characteristics such as dependability, self-reliance, concentration, willingness to share and personal accountability. The game of hockey is used to develop within each player the characteristics that will help the player to be more successful both inside and outside a hockey environment. Support from this program comes from the community. Middle and High School aged mentors take to the ice each practice to offer one-on-one assistance to Cheetah athletes. The Montgomery Cheetahs hockey program began in 2006 in Rockville, MD to serve children that could not succeed in regular youth leagues. It grew quickly from 15 players their first season to more than 60 players who are currently in the program. Cheetah players have disabilities that span the entire range of the autism spectrum, Down’s Syndrome, and other neuro-muscular disabilities, and they range in age from 4 years to 22 years old. The Cheetahs practice weekly from September through May at Cabin John Ice Rink in Montgomery County, Maryland. Each fall the Cheetahs take part in the Frankenfest Hockey Tournament, hosted by their sister program, the New Jersey Daredevils. Then, each spring, the Cheetahs participate in the annual USA Hockey Disabled Festival. The Cheetahs are a member program of the American Special Hockey Association which represents more than 50 special hockey clubs across the United States. The Montgomery Cheetahs also provide non-disabled young men and women the opportunity to experience volunteerism and act as mentors to the athletes. The mentors assist the coaches during practices by helping to teach skating and hockey skills and providing positive feedback and encouragement. They build working relationships with the Cheetahs, they get to know and understand children with disabilities and forge bonds with them based on a common interest in hockey. The Cheetahs have over 90 active mentors who support the program and have logged in over 800 hours of their time so far this year. The “Cheetah-thon” is the first major fundraiser for the Montgomery Special Hockey Club. All proceeds raised will go toward the purchase of ice time and equipment for the growing program. The Cheetahs are a completely volunteer organization, and all of the money raised by the Cheetahs goes to programming. No one is paid and there are no salaries paid or other costs that do not promote the mission of the team. Expenses keep growing, and this year costs for ice alone exceeded $20,000. This event is open to skaters and non-skaters alike. Participants are encouraged to bring their friends and families to skate with the Cheetahs and their fans or to show support by making a gift to the organization. There will also be prizes for top fundraisers. In addition to sponsoring skaters, supporters can purchase refreshments and raffle tickets, and of course, cheer on the participants. For immediate release Contact: Sean Twombly 202-744-5780 501(c)(3) non-profit organization / Federal ID #20-5979889

The Good Life

As Scott finishes his last year of formal schooling, I think back to how our journey began in what used to be the small autism community. When Scott was little, around 3 years old, it seemed like we knew every other family with an autistic preschooler in Montgomery County. (Of course, that was back in the days when no one really liked to diagnose young children with the "A" word.)

"Cure" talk was big among parents in 1994, just like it is today. It was just the beginning of the "Cure Autism Now!" movement, the "Defeat Autism Now" movement, leading to Autism Speaks, Autism Awareness Month, Light it up Blue, Walk Now for Autism, etc etc. Those of us looking to help our children were faced with a series of methods, some promising "cure". I remember vividly going to a session with Dr. Lovaas at the Twinbrook Crowne Plaza, where he insisted that parents needed to do 40 hours/week in home programs, and it must be started before age 4, to receive any benefit from applied behavioral analysis training at all. Cures ranged from special diets, megavitamins, chelation therapy, auditory integration training, secretin, in-home Lovaas therapy, Son Rise therapy, and I can't remember what-all else. We didn't do any of it. We placed our hope and trust in a good solid education, and I think it paid off. Can't say he's "cured," though.


And of course, for there to be a "cure," there had to be a "cause." Thankfully, we moved away from the "refrigerator mother" theory. In short order we had the folks who claimed the MMR vaccine caused autism, then the people who blamed the thimerisol in other vaccines. Now, horror of horrors, there is a study out that blames women who were FAT during their pregnancies!

So, I've come to my own conclusion about what causes autism: IT'S JUST ONE OF THOSE THINGS. One of those random acts of fate. Unknowable by us non-scientists. If they ever figure it out, for sure, I'm sure they will let us know. In the meantime, how about we focus on the kids that are here now. Let's give them appropriate schooling, good health care, appropriate adult programming, employment, and housing options. But please, how about less talk on causes and cures and more focus on helping our children, adults, and families live a good, happy, productive and fulfilling life.

Greencastle Elementary Overcrowds PEP Classes-On Purpose!

Greencastle Elementary Overcrowds PEP Classes-On Purpose!

The Tragedy in Kensington

MCPS and Vulnerable Families

A tragedy recently occurred in Kensington, Maryland. Local media reported that Margaret Jensvold, a psychiatrist, murdered her son Benjamin (who was reportedly diagnosed with Apersger's Syndrome) and then committed suicide. Dr. Jensvold's ex-husband told the Gazette:

Benjamin had complained he was picked on and bullied at Hoover Middle School, but Montgomery County Public Schools would not cover the expense of sending Benjamin to Ivymount, something Barnhard said could have led to Jensvold’s breakdown.
“She was frustrated and devastated by what was happening with the school system and the rejection of the assistance that she needed to get Ben into Ivymount,” he said. “She couldn’t bear to see him face the pain and the torture and the torment that he received [at Hoover].”


An article in the Washington Post contained a similar, sad story:

Bob Baum, who represented Jensvold in her divorce, said his client was constantly fighting with the public school system over her son’s education.

“She had just this list of horror stories about how they would have IEP meetings and they wouldn’t invite her. If she would come to a meeting, they wouldn’t let her talk,” Baum said. “There’s probably nothing more frustrating in her life than dealing with Montgomery County public schools.”


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This tragedy has hit way too close to home for many reasons. Fifteen years ago, I saw Dr. Jensvold, who helped me manage the post-traumatic stress of our own dispute and due process hearing with MCPS over our son's placement. Luckily, back in 1995, we prevailed, and our son with autism was subsequently enrolled at Ivymount School, where he spent the next 14 years. But the stresses back in 1995 didn't have anything to do with the fact that our son had autism: it was a direct result of shitty treatment by the MCPS administrators who had never laid eyes on our child.

Instead of helping us, MCPS threw obstacles in our path, denied information to us, denied listed IEP services to our son, lied to us, lied to the hearing examiner, and finally admitted that they "knew at the time when they didn't have staff that they would not be able to provide the services" that our child needed.

The hellish treatment that MCPS put our family through, and has put other families through for the past 15 years has been the direct cause of my determination to be an advocate for other families embroiled in the same nightmare, and played a large part in both my husband's and my decision to run for Board of Education. I have known and represented too many families that MCPS has pushed to the breaking point, and can say with first hand knowledge that some of those families have been irretrievably broken. Families of children with severe disabilities are vulnerable, and you can't predict how they will react if they are kicked when they are down. Our family reacted by fighting back. Unfortunately Dr. Jensvold reacted in a tragic, tragic way.

During my 15 years of advocacy for special education families, I would have to say that the overwhelming majority of folks working in special education are kind, caring, and want to do the right thing. But the decisions aren't always made by people in special education, or even people who have first-hand knowledge of the child. The MCPS budget director, for example, has on multiple occasions stated that he views special education litigation against families as a deterrent to keep other families from requesting what their children need. And certainly long-timers remember when MCPS's senior attorney went to a national conference and mocked Montgomery County special education children and families.

It only takes a few mean-spirited people, or people more interested in getting the next promotion up the MCPS ladder than in serving disabled children, to cause damage to families that will take years to heal. Unfortunately, this Kensington family won't get that chance. Dr. Jensvold was ultimately responsible for her own actions, but let's not deny the role that this family's disputes with MCPS may have played.

Improving Education for Students on the Autism Spectrum

Complete Tesimony by Staci Dadonna to the Maryland Commission on Autism

The Maryland Commission on Autism
Public Comment Presented on January 11, 2011

Good morning. My name is Staci Daddona. I am the mother of a ten-year-old boy with Asperger’s Syndrome, and the president of Partnership for Extraordinary Minds, a nonprofit in Montgomery County, Maryland dedicated to improving the educational experiences and outcomes of diploma-bound students on the autism spectrum. I appreciate the opportunity to speak to you today and I’d like to thank the Governor for his leadership in appointing the Commission, as well as all the members for their hard work on a complicated issue.
You’ve heard for more than a year, about myriad needs for individuals with autism. I recognize that the wish list is lengthy, but funding is scarce; however, I’m here to add to that wish list.

Nationally, autism dialogue is moving from early intervention to the lack of supports for adults across the autism spectrum, largely ignoring thirteen valuable years in between—the foundational years when most children are enrolled in public schools. I’m disheartened by the absence of a workgroup within this commission to identify needs and goals specifically for public education. The assumption seems to be that whatever is being done is sufficient, and that a crisis appears when the students age out of the public education system at 21.

What can/should schools be doing to make the experiences and outcomes better for students on the autism spectrum?

1. The definition of what constitutes an appropriate education must go beyond academics for these children, based on research about the core deficits including social communication and relationship development, emotional regulation, cognitive flexibility, and executive functioning. How well these deficits are remediated will have as profound an impact (if not more) on the independence of adults with autism as their academic work. And while the amount of remediation possible will be unique to each individual, these are known deficits across the spectrum and must be considered for all students on the spectrum, though to varying degrees.

Of course, school systems are required by law to provide children with special needs a “free appropriate public education... designed to meet their unique needs and prepare them for further education, employment and independent living.” But the federal courts won’t or can’t define more clearly what is "appropriate," and so it continues to be argued. And while the federal courts may be mired on the issue, states have more latitude to define it.

2. School systems must develop mandatory training for principals, teachers and staff to understand the entire spectrum of autism disorders, including PDD-NOS and Asperger’s Syndrome. This is especially important given the national mandate for inclusion. Comprehensive research has been available for more than 10 years. Additionally, systems must be required to support their principals, teachers, and staff to understand and use the research to develop relevant, timely training. An excellent starting point is the report completed in 2001 by the National Research Council: Educating Children with Autism, available free online at the National Academies Press website.

Autism is a complex and variable disorder that can look like many other diagnoses, but it requires targeted instruction and intervention strategies to appropriately address the core deficits. When school staff use ineffective strategies, they do so to the emotional and functional detriment of the child. Staff need to understand and appreciate the amount of emotional energy required by these children to merely attend to instruction in an environment that is highly stressful to them.

3. School systems need well-trained support teams that can accurately identify students across the autism spectrum and respond in a timely manner when a child’s emotional and behavioral challenges begin to consistently disrupt their education.

There is so much more to educating our children than consequencing inappropriate behavior, but this is often the only tool teachers have in their toolbox. All staff would benefit from training in positive behavior supports to directly teach students appropriate coping strategies.

4. School systems must be held accountable. How can a public system know whether its programs are effective if they are never objectively evaluated? Using available research, determine which criteria will be used to evaluate the success of students on the autism spectrum and require periodic evaluations. System-wide evaluations will help determine which staff are effective and why so their efforts can be replicated.

In conclusion, I’d like to quote State Superintendent of Schools, Nancy Grasmick, who said in a March 2010 press release announcing autism awareness month, "Early intervention and educational services are key to helping children with autism. By putting a spotlight on the disorder, we believe that more parents and families will find the resources they need." In order for families to find the resources, they first need to exist, and children across the spectrum, including those with Asperger’s Syndrome, need to be allowed to access them. Thank you.

To learn more about the Partnership for Extraordinary Minds, CLICK HERE.

Sue Katz Miller: Seven Resolutions

Sue Katz Miller's article from one year ago is important reading TODAY! Her seven suggested resolutions should be required reading for our current (and future) Board of Education! Read the whole article HERE.

School Scene: Better Schools, in a Bad Budget
By blogpop on January 13, 2010 4:07 PM
Seven Resolutions for the New Decade

by Sue Katz Miller

The end of a decade provides a crucial opportunity to "stop and think," in the immortal words of one school anti-bullying program. Every year at this time, Montgomery County Public Schools (MCPS) Superintendent Jerry Weast asks for half of the county budget for our schools. This year, huge shortfalls are predicted in the wake of the recession, and Weast has, as he does each year, threatened painful cuts designed to stimulate parent demands for full funding of his proposed schools budget.

But some of us have lost patience with what appears to be emotional manipulation in order to fund a budget heavy on central office expenses. In addition to the new decade, we have substantive reasons to step back now and take a look at where our schools are heading.

Read the whole article HERE.

(p.s. This year Jerry Weast is asking for 62.3% of the county budget!)