Welcome to Tall-Tale World (on XXYY Syndrome) by Renee Beauregard – Guest Post

Today I’m excited to present Guest Blogger, Renee Beauregard. Renée is the mom of an adult with XXYY Syndrome and another teenage son. She owns a business called CommUlinks of Colorado, which provides consulting to nonprofit organizations. Renée is one of the founders of XXYY Project (www.xxyysyndrome.org) and she has been involved in the steering committee of the National Organization to End the Waiting Lists (www.noewait.net). In her not-so-spare time, she advocates for people with disabilities on issues impacting her son.

Enjoy!

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Many parents of children with disabilities have read that tear-jerking story written by a parent of a child with special needs called “Welcome to Holland.”

But I live in Tall-Tale World. My son, you see, has a rare genetic disorder called XXYY Syndrome. (I swear he does! Really! It’s a real thing!). Not only do boys and men with XXYY Syndrome tend to tell tall tales, but they are also extremely tall because of the syndrome.

Tall-Tale world is a very interesting place to live, and in some ways I guess you could say it has been a saving grace because it has been the cause of many laughs in our family. It’s not always funny though, and it really tries parents who don’t know which reality is real.

Ever since my son finished speech therapy and was really able to express himself, he has been telling stories. The stories are tapes in his head that play over and over and finally become real to him. There was his “friend,” Drew, who went off to Iraq and never came home – except when he did come home, then the story was that Drew was disabled in the war. There were the many times when the teachers asked me how my exotic vacation was, asking me questions about what it was like in that far away land we visited (not). My son is an adult now and his stories are more elaborate. Sometimes he has fought off some bully at the light rail station. Sometimes he is certain he is dying. Sometimes he has a new group of “friends” who are taking him to a far away city. In tall-tale world, he is close friends with police officers who he calls regularly just to check in. He is also magically able to contact long-lost friends and relatives to get information on where they have been and what they have been doing.

My favorite tall-tale happened when we were at a Special Olympics event and my son was flirting with some young ladies who were volunteers. He told the young ladies that every girl he dates gets to use his credit card to buy anything they want. They were sufficiently impressed and all the while I stood back grinning and waiting to ask him for his credit card that does not exist.

When my son was in school, the tall-tale issue became extremely difficult because getting to the truth about what happened often took days or even weeks to pry out. It really isn’t that he intends to lie, he just really cannot tell if the tapes in his head are true or not. Those tapes are fueled by fears and imagination. Sometimes the tall-tales are fueled heavily by an extreme desire on his part to fit in.

No amount of “discipline” ever got to the truth. Only endless questioning from many angles with corroboration of facts from others actually got to the truth. I never imagined I would become such a sleuth! I reached the point when I knew better when something was a tall-tale or the truth by the number of times he would say “Mom, I swear!” Also, the angrier he got by the questioning, the more I knew he was telling a tall-tale. Now that my son is an adult, I tell him about the tall-tales he told as a child. He laughs about them a lot.

I guess if there is a moral to this story, it is that some people with disabilities have differences in the executive functioning part of their brain that cause them to believe the tapes that run through their thoughts. The tapes are vivid and feel very real to them. As parents, we have to learn how to cope with these tales and understand fully that when we consider our children to be “liars,” rather than realizing why they tell tall tales, we can seriously make matters worse. If we address the underlying needs they have to interact with people and allay their fears, we can often reduce the amount of tall-tales they tell. But it first all comes from understanding who they are and why they tell the tales.

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Please visit Renee and learn more about XXYY Syndrome! Have a great weekend.

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