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Aug 14 2014

After 10 Years, Finally a Diagnosis For My Son

By at 11:46 am

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My son Joey is turning 10 this fall. His development has been anything but normal.

Since Joey was 18 months old, we have seen countless professionals who have attempted to evaluate and diagnose him. None of the doctors, therapists, psychologists, or teachers were ever able to satisfactorily define Joey’s behavior. I often wondered if he was autistic, but that didn’t totally fit. He also exhibits a lot of Asperger’s characteristics, but again, not a complete match.

Allow me a moment to give you an idea of what I’m talking about:

Age 1. We noticed that he wasn’t talking, clapping, or imitating us like he should. The speech therapy and evaluations began.

Age 2. He learned every letter and number in one day. He’d point to them repeatedly, asking me to identify. Within 24 hours when asked to point to a specific letter or number, he did it with 100% accuracy.

Age 3. He literally taught himself how to read. He still could not speak (his sounds were only vowel sounds, completely unintelligible). He would point to words, asking us to identify them. He carried around a large plastic bag full of plastic and magnet letters. When he wanted something he would spell it out with the letters.

Age 4. At this point he could speak. He memorized the entire calendar, not only the 2008 calendar, but the calendars ranging from 2000 to 2012. When given a date, he could tell you the day of the week. He was never wrong.

Age 5. He read at a third- or fourth-grade level. He could also do four-digit math in his head. When someone told Joey his or her birth date and year, he could instantly figure out how old that person was.

Age 6. He created and memorized our complete family tree on Ancestry.com; he knew when everyone was born, died, etc.

Age 7. He memorized all of the U.S. presidents. He didn’t memorize just the dates, he memorized everything he could get his hands on. It was so impressive that word got out, and he ended up appearing on “The Today Show.”

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Age 8. He memorized a map of the United States and could draw it from memory.

Age 9. Currently, he’s obsessed with the show “Cosmos” and everything to do with Neil deGrasse Tyson. He draws cosmic calendars and makes sophisticated calculations related to this in all of his spare time.

Obviously one sentence per year doesn’t come close to describing the ups and downs we’ve had, but I think it gives you an idea of his extraordinary abilities.

But he struggles socially. He’s come really far, but there were years where the mere thought of a play date was enough for me to break out in hives. He always preferred to interact with adults, who shared his interests and understood him. When kids don’t do what they are supposed to, or follow the rules, it really bothers him. Sometimes he gets so obsessed with things that he can’t move on from talking about them.

This past school year, we hit a new obstacle. All of a sudden, my brilliant kiddo was struggling big time with reading comprehension. Obviously he could read and remember anything concrete. But when it came to anything abstract or higher level thinking (like a main idea or inferencing), he really couldn’t do it. He had a C in reading all year. We hired a tutor to help, but his teacher and the school administration pretty much freaked out that he might fail the standardized test.

In order to get to the bottom of his issues, we requested that the school psychologist do a full battery of evaluations. We needed to know, once and for all, what was going on. If he was autistic or on the so-called spectrum, at least now we could get him the services he needed. As the date for the evaluation results meeting approached, I was a wreck. I was certain I’d hear the words I’ve been terrified to hear for years. I prepared my husband, my parents, and myself the best I could.

The school psychologist started the examination by building a rapport with Joey. They talked about his favorite movies, his baby sister, and how he wants to be a movie director when he grows up. While discussing “Star Wars,” the school psychologist told him that she loved Yoda. In his best Yoda voice, Joey replied, “Yoda your favorite character is!”

Some of the test results were astounding. His memory tested in the 99.9 percentile. His spelling was at a ninth-grade level. His math at a sixth-grade level. Some of the other test results were equally as astounding, but for a different reason. When it came to Joey being able to make inferences from text, his scores were extraordinarily low. It was clear that his deficiency was in language processing.

After the school psychologist finished her 20-minute explanation of Joey’s academic test scores, I asked her, with a lump in my throat, if she had done any Autism spectrum evaluations.

“No,” she said, “I didn’t see any need. He was appropriate with me. He made eye contact. He even made an appropriate joke about Yoda when we first met. I would have done that test if I thought it was on the radar, but honestly, it’s not.”

“Well what do you think this is?” I asked.

“Honestly,” she said, “It’s my professional opinion that Joey is a savant.”

A savant? I didn’t even know that it was possible to be a savant without being mentally challenged. But it all made sense. In that one moment I realized that it doesn’t matter what Joey has or what Joey is.

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Joey is a kid–a kid with some really cool gifts. You can’t have the gifts he has without some challenges, but it doesn’t mean something is wrong with him. Now we know what to do to help him. We hired a language therapist to help him with his deficits. We can continue to encourage (and be amazed by) his interests. We’ll help him learn how to handle it when other kids don’t follow the rules. I’ll work on seeing the whole picture, and not fixate on one issue.

Joey is a sweetheart. He adores his family, specifically his baby sister. He is sensitive. He is bright. He’s going to be just fine. We are all going to be just fine.

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