Parent advocates for ‘invisible disorder,’ childrens’ dreams

By Brandon Desiderio
March 14, 2012

Brian Mengini, a Schwenksville, Pa. parent and advocate for special needs children, will be holding a discussion on March 22 in the Grace Hall boardroom about sensory processing disorder (SPD).

SPD is often considered the “invisible disorder.” Those diagnosed with the disorder, unlike the deaf or blind, do receive and register information with their senses – the information that’s received, however, is interpreted in a unique way by the individual’s brain. As a result, children with SPD often react or behave abnormally, or find certain things harder to do than their classmates.

These issues are commonly presented with the affected individual, regardless of age, having observable difficulty with organizing or planning, or issues with completing everyday activities such as self-care and work. Sensory processing disorder has its roots in what used to be called sensory integration dysfunction (SID) although, unlike SID, SPD applies a larger perspective and attempts to classify it as an actual disorder rather than a discrete, or “invisible,” disorder.

On his website, Mengini differentiates SID as a “traffic jam in the brain” where some sensory information simply never arrives; in contrast, those affected by SPD aren’t overwhelmed, instead solely interpreting the sensory information differently, uniquely. Neither the ICD-10 nor the DSM-IV-TR recognize either SPD or SID as standard medical disorders, although a shocking 1 in 20 children are affected by SPD.

Providing a personal perspective, Mengini himself has a child with SPD. He and his wife launched a non-profit dance outreach program called Hope Dances shortly after his son Dominic’s diagnosis with the disorder in February of 2005. According to the non-profit’s website, Dominic’s treatment needs, as well as those of others like him, range from occupational, physical and speech therapists and behaviorists, in addition to visits to sleep centers.

The program wasn’t just initiated for his son, though: Mengini has held a passion for dance photography since the 1990s and saw the program as a way to bridge his own passion with his love for his son. Mengini sees dance as a nonjudgmental approach to helping special needs children “deal with their obstacles.”

The Mengini family also created the Dominic’s Dreams Foundation earlier this year in honor of their son and SPD children everywhere. The mission of the foundation, as the website states, is to “build a network of advocacy and support for families of children with Sensory Processing Disorder.” The site includes a thorough list of educational resources, from books to films, as well as explanations of special education law. In particular, the website focuses on Section 504, which is a civil rights law that criminalizes discrimination against an individual with a disability and grants children with disabilities the right to an equal education. It also explains the parent’s right to obtaining a Free Appropriate Public Education (FAPE) for their child under Section 504.

More information about sensory processing disorder may be found on the homepage for Dominic’s Dreams Foundation and by attending Mengini’s discussion.

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Brandon Desiderio

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