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Imagine a Boy Lost in a Sea of People - featured September 20, 2010

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Imagine a Boy Lost in a Sea of People

By: Renée Beauregard
Founder, XXYY Project

Imagine a boy who can be lost in a sea of people but everyone knows who he is. What is the reason he is lost? He is lost because he has not been properly diagnosed. Why does everyone know who he is? They know him because he confounds everyone who deals with him. He is “that case” that few people understand. He is that boy who is “autistic-like” (but not quite). He either acts out a great deal or he is too quiet. He is the boy who disappears and is found in the closet, the bushes or under the desk. He is the boy who is “that close” to losing his IEP status because he is making progress - but then he stalls or regresses. He is the boy in class that has the most outrageous stories to tell. He is the boy who is both sensory-seeking and sensory avoidant. He has trouble regulating his volume when he speaks. He may do exceptionally well one day, and lose all of that knowledge the next day. He is the boy whose parents are now homeschooling him because the school didn’t have a category that fit him or enough support to manage him. He has no friends even though he tries very hard to have them. He can hardly ever remember a person’s name. He may have some inappropriate behaviors.

Boys with XXYY Syndrome are usually in contact with many doctors, therapists, psychologists, behavior specialists, speech therapists, teachers, aides, principals, deans and so many others before anyone realizes genetic testing is needed. Instead, they are diagnosed in pieces. Early in life, they may have a simple diagnosis of developmental delay that requires physical therapy. Then, they receive a speech delay diagnosis. If they begin to have behavior issues, they receive many diagnoses for that. Then they have learning disability. Sometimes they receive a diagnosis of PDD during early school years. What they don’t have is their real diagnosis: XXYY Syndrome, which encompasses many of these.

Speech, occupational and physical therapists are in a very unique position to help direct parents to obtaining the right diagnosis. The reason is because every boy with XXYY Syndrome has speech delays and most will also come in contact with an occupational and physical therapist before he is ever diagnosed with XXYY. Helping a family to obtain the right diagnosis sets the boy on a path to obtain the right medical and behavioral interventions.

Everyone who comes into contact with a boy who displays these symptoms should make a referral for genetic testing to look for XXYY Syndrome or other X & Y chromosome variations.

The XXYY Project helps parents and caretakers of boys and men with XXYY Syndrome. We offer support, grants to obtain medical help through a specialty clinic, annual symposia to educate families, sibling support and all of the knowledge we have about raising a boy with XXYY Syndrome.

This Month's Featured Author and Organization: Renée Beauregard and the XXYY Project

Renée Beauregard is the founder of the XXYY Project, which is the only international organization serving families of boys and men with XXYY Syndrome exclusively. Renée is a volunteer for the organization and is also a nonprofit consultant specializing in marketing and communications. Renée is the parent of an adult with XXYY Syndrome and has helped to develop the clinic that serves boys and men with XXYY and has been involved in research projects related to the syndrome.

Please support our contributing authors and organizations and visit XXYY Project

Tags: Article XXYY 24 September 2010 Newsletter OT SLP PT