Lucas’ Story

From all outward appearances, our son Lucas is a normal seventeen-year-old young man. Most people don’t recognize him as being disabled until they see him acting inappropriately. Lucas has Fragile-X Syndrome, the most common inherited cause of autism and intellectual disabilities. The cause: one gene. This gene, called FMR1, shuts down and fails to produce a protein vital for brain development. A DNA test for Fragile X is available. This blood test is accurate and can detect carriers and fully-affected individuals. Any doctor can order the test. There is currently no cure for Fragile X, although appropriate education and medications can help maximize the potential of each child.

So for Lucas, this means that he suffers from severely limited intellectual ability, which impacts his ability to think, reason and learn. He has significant trouble communicating and also suffers from extreme anxiety if his daily routine gets disrupted in any way.

Most of you are likely familiar with the movie “Rain Man”, and this is actually a great example of what it’s like living with Lucas. His days revolve around what comes next, but especially his meals. He’s obsessed with restaurants and constantly tries to negotiate his next meal out. Throughout each and every day, he is constantly asking, “What’s for breakfast, what’s for lunch, what’s for dinner?” Although we are thrilled that he can express himself this way, it does tend to drive us all crazy.

Lucas requires constant supervision when it comes to food consumption; he simply doesn’t have an off switch. If we indulge him and let him eat all he wants, it usually doesn’t end well. One incident while visiting grandma’s house ended with him attempting to wallpaper the bathroom in a nice chips-and-salsa explosion from our favorite Mexican food restaurant.

Lucas also doesn’t understand the concept of a “choice”. If we present him with two items and ask him to choose which one he wants, he always gets extremely frustrated and doesn’t understand why he can’t have “both”.

But the most frustrating times are the circumstances we don’t understand. Sometimes things just don’t go the right way and Lucas gets spun-up into a crying tantrum, usually in public places. This always turns lots of heads since few boys of his age cry openly in public.

Through all of our challenges, there are still many blessings. We all have our favorite phrases that we call “Lukie-ism’s”. If any of us are away from Lucas for an extended time period, we miss him terribly and are reminded of his innocence, especially when we repeat our Lukie-ism’s. Some examples: Lucas’ way of saying “No Thank You” is simply “No Q”. And when we ask him to say thank you to someone, the response is almost always the full dialogue of “Thank you, your welcome”. If there is something he really doesn’t want, it’s not just a simple no; it’s usually an elongated “nooooooooooo” while he shakes his head dramatically from side-to-side. We love these little reminders of our “little-buddy”.

Even so, we are frightened to think about what the future holds for Lucas. After he leaves the current special education placement in our school district, what will fill his days? His only preferred activity is to perseverate over his child-age DVDs, constantly rewinding and playing scenes that capture some strange interest for him that we’ll never truly understand.

Even worse, if we were to die, what would Lucas’ life become and where could he possibly live? He still needs assistance with grooming, gets hysterical over visiting doctors or dentists, can’t tolerate a Band-Aid or anything stuck to his skin, can’t appropriately use a telephone, nor can he express his feelings in any way other than laughing or crying.

We continue our ongoing battle to help Lucas learn the skills he’ll need to survive in this world, but without organizations like Sunflower Hill, there is little hope for children like Lucas in the East Bay. Thank you for your interest in Sunflower Hill, and please continue your ongoing support for kids like Lucas!

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