A Message of Thanks and Praise for TCC from our Director

Our Director Pam Clendenen with fellow graduate Bernita Townes.

Our Director Pam Clendenen with fellow graduate Bernita Townes.

At my core I have always considered myself an educator. Whether working as a speech pathologist or a camp director, working with individuals with special needs and their families has always been my passion.

I was excited and terrified when, after serving as Camp Director for 9 years, FACT offered me a full-time position as their Executive Director. I felt I had the enthusiasm, creativity, and people skills required, but I had reservations about my ability to oversee fundraising, budgeting, and grant writing. As the E.D., could I rise to meet the responsibility of managing a public trust? Obviously, I let my passion conquer my doubt and took the position in 2006 (mostly because I didn’t know what I didn’t know). Fortunately, I discovered the Academy for Non-Profit Excellence at TCC. This incredible, high-quality program (offered by the Tidewater Community College Workforce Development Program) was made possible by a grant from the Hampton Roads Community Foundation- a remarkable organization that works specifically for local charities.

During my first four years as the E.D., I had no year-round staff at all. What I did have was determination and a goal. The classes and networking offered by the Academy were truly a lifeline for me. From board development and employment law- to branding, marketing, and data analysis- the Academy was there teaching me the skills I needed in order to be successful with my career endeavor. They reassured me that as long as I had the dedication and a willingness to learn, our organization and the families we serve would be in good hands.

The Academy offers a Certification in Non-Profit Management once course completion is satisfied, but obtaining this was never my primary goal. At the time, my only goal was to survive and to be an asset to FACT. Oftentimes, I took more classes than were required, simply because they were that effective for me. In fact, these courses were so effective, that I chose to repeat a few of them as the needs of FACT evolved. With my mind being so focused on my goals for FACT, I was pleasantly surprised yesterday when Lisa Peterson presented me with my framed Certification of Non-Profit Management. She even added a little “Pomp and Circumstance”- nice touch.

I will continue to take classes at the Academy, despite having earned my certificate. In fact, I am registered for two more classes this semester. I urge my staff (yes, I have two staff now!) and board members to attend as well. I encourage anyone who is interested or involved in the non-profit world to at least check out the amazing array of courses offered; there truly is something for everyone. Regardless of your organization’s size or budget, national organizations and grass roots start-ups will benefit immeasurably. You will feel empowered to go out and do the important work of helping others.

Driving home from class today, I was reflecting on FACT’s growth, my own professional growth, and how the academy is directly responsible for so much of both. I want to thank all of my supportive classmates over the years, and especially Lisa Peterson and Mark Block from TCC, their predecessors Lillian Bailey and Vicki Parker, and the generous forward thinking folks at Hampton Roads Community Foundation (HRCF)-including Deborah DiCroce, Sally Hartman, Debbi Steiger, and Kay Stine. They lift us up so we can lift others.

To find out more about the HRCF, please visit: http://www.hamptonroadscf.org/

Gonnawannaswishagin update

bballOnce again, our friends with autism have risen to the challenge.  Each week our coaches and volunteers help our young athletes gain skills and confidence.  Best of all, everyone is getting a great day’s exercise.  Keep up the great work everyone. We’re proud of you!

WOD an Event

Last Sunday we had the privilege of meeting an amazing community of athletes.  Men and women of every age, size, and ability participated in a Workout Of the Day at Crossfit Takeover to benefit Camp Gonnawannagoagin’.  The Cave Mama’s, Deb Feinman and Amy Volk, are two incredibly motivated and compassionate parents of camp volunteer peer buddies.  These wonderful women value the experience that their children have had at our camp and wanted to give back.  With the support of Crossfit Takeover coaches and co-owners, Ryan and Andy, the WOD for Autism was a huge success raising more than $1,800 for camper scholarships this summer!  To check out the action click here.

DSM-5

You may remember the hype. Almost one year ago, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was published. Unless you are in the field, it may not ring a bell. However, what you most likely DO remember are the thought-provoking (yet incredibly uninformative) news headlines that read something along the lines of, “Autism Diagnosis Reduced by a Third!” No, unfortunately, there was no overnight cure for autism or even a sudden dramatic decrease of those who are affected by it. What happened was a change in diagnostic criteria, and I’m going to tell you why this matters while sparing you a ton of reading. You’re welcome.

Here is what happened. Many psychiatrists and other like professionals were uncomfortable with there being such a broad range of standards comprised with testing “on the spectrum”; they were too vague. Therefore, a team of psychiatrists, or the DSM-5 committee, created what they considered to be clearer and more precise diagnostic criteria, hoping that these new standards would effectively translate to those who are involved with screening for autism. Categories contribute to mutual understandings and psychiatrists love categories. Lo and behold, instead of three categories of ASD symptoms, which were previously lumped into one key diagnosis, there are now two – social-communication impairment and repetitive/restricted behaviors. However, here’s the “but”, and it’s a big “but”… Now, a Social Communication Impairment without at least two repetitive/restricted behaviors (think here of the odd fascinations, awkward body movements, inflexible routines, etc.) are no longer considered autism, but are now categorized as Social Communication Disorder (SCD).

Stay with me, because this part is important. Although the DSM-5 committee recommended the contrary, many schools and health insurers are asking that children be rescreened under the new guidelines, hence losing their diagnosis. As a result, several children are losing crucial services because they are now identified as having SCD instead of ASD. Automatically one would assume that these children would simply apply for services related to SCD and begin to receive relevant methods of intervention and therapy, right? Wrong. How about this for a caveat:  SCD is a newly refined disorder and there are no formal guidelines for treatment. Talk about putting the cart before the horse, eh?

Autism Speaks wants to ensure that autism services are provided to all who need them. Currently, they are conducting a survey and study for those whose services have recently been revoked as a consequence of reevaluation under the DSM-5. Please share your DSM-5 experiences.

A good read: Why are Children Losing their Autism Diagnosis?

 

April Should be Autism Action Month

According to the Centers for Disease Control and Prevention, it is estimated that 1 in 88 children in the United States have an Autism Spectrum Disorder.  That means that as many as 1.5 million Americans today are believed to have some form of autism, including in excess of 90,000 Virginians.  At this time, autism is not a reportable health condition in Virginia, so the only data available is that provided by the Virginia Department of Education (VDOE).  In 1998 VDOE reported 1,521 children identified with ASD.  This number increased to 14,624 students as of 2012.

When I started working with children with autism nearly 20 years ago, people were not aware.  Remember that great scene in “Rain Man” when the nurse asks Charlie Babbit if his brother is “artistic”? It seems funny now, but even many medical professionals were clueless back then.  Thankfully, those days are gone and virtually everyone knows that autism exists.  So here at Families of Autistic Children in Tidewater (F.A.C.T.), I’m advocating Autism Action month. Whether you “light it up blue” for autism speaks, run a 5K, attend a seminar, make a donation, or read a book to enhance your understanding; I urge you to do something!

Super-Human Abilities

As humans, most of us have a tendency to daydream about what it would be like to be someone else or to have certain abilities. For example, so many of us moms often wish we had the ability to clone ourselves. Meanwhile, our sons are busy fantasizing about having super-hero abilities, like flying or disappearing. But what would it be like if you did have super-human abilities, like an extremely acute sense of smell or fine-tuned hearing? Furthermore, what would it be like if your abilities were considered disabilities? Think about how often we take advantage of simply existing in an everyday environment. Whenever we need to go to anywhere in particular, we typically just go. If we need to see something, we simply open our eyes and examine it. If we have to take a different path to get to a place we’ve been a dozen times before, we easily take the detour-no problem. And what about all of the smells in the air? There are tons of them around us, but the only scents we normally pick up on or are bothered by are the extreme ones. This is what we’re accustomed to; these are the types of things that make us, well…ordinary. Think about how you would cope if you weren’t ordinary.

Imagine having those super-human abilities; imagine being extraordinary. Focus on each and every detail that surrounds you and amplify everything that you can see, hear, and feel. Your brain panics because there is too much to take in visually and all of the clamorous sounds are maddening. All of your senses are jolted and your everyday environment suddenly becomes harsh and antagonistic.  While most of us cannot begin to empathize with how this must feel, this is the type of sensory overload that is persistently experienced by many of those with autism. These types of sensory integration disorders occur because of a dysfunctional sensory system, which is controlled by the brain. Sensory integration is basically how our brains instinctually choose to interpret the environment. Therefore, any type of interruption or connection error among this delicate neurological process will cause either an over or under reaction to stimuli. Thus, the brain interprets the environment dramatically more or less than it truly is, essentially granting these individuals with super-human abilities.  But their most extraordinary ability may their ability to cope when they can.

For more on sensory integration, visit this link. 

For more information on the autism-specific struggles visit this link.