Updated Winter/2012
My monkey boys were born on Valentine's Day, and were nothing like their sister.They were angry babies. They were born 4 weeks early and slept, mostly, until their due date. On their due date they awoke and didn't sleep much again until they were 2.
There were developmental delays and all sorts of concerns about them. So we saw a few doctors, including one pediatric neurologist.
It was Wednesday, April 13, 2006. I was at work, going merrily on my way through the day, when the neurologist called and said my twin boys something called Fragile X Syndrome. I grabbed a pen and wrote it down. I don’t remember everything he said but that’s why we take notes, right? I wrote down
Speech delay
Language delay
Motor skill delay
Learning problems
Geneticist
And I scribbled away until it dawned on me that
I was sitting at my desk in front of a computer. With internet access. It was 2006 and nobody was Googling yet, so I went to Yahoo and typed in
"Fragile X Syndrome." Up popped a list of
sites that mention it, and the top one was the National Fragile X Foundation. That seemed like the
smartest place to start, so I clicked.
Damn the internet, by the way. It’s way too easy to get information on there. Tons and tons of information, faster than your brain can process it.
Because right smack on the home page it said “Fragile X Syndrome is the leading inherited cause of mental retardation.”
(It doesn’t say that anymore. Thank God. Now the phrase you’ll see/hear/read most often is “Fragile X Syndrome is the most common inherited cause of intellectual impairment and the most common known genetic cause of autism.”)
I packed up my things and calmly shut down my computer. I very nearly ran from my work building, praying all the while I wouldn't pass anyone in the halls that I knew, because I was starting to hyperventilate with the effort to not scream and burst into tears before I got to the parking lot. I barely made it.
We spent the next few weeks feeling numb and not talking to many people about it. We slowly processed the news, letting bits of information trickle into our minds, as much as we could handle at a time, while we tried to live our normal lives.
There wasn’t time to curl up and cry, though. There wasn’t time to grieve. They were 14 months old already, and early intervention is of the essence. We got started with occupational and speech evaluations and therapy right away. It was, and is, like being in a tornado of information. It's hard to know what to grab ahold of, and what to let fly on by.
People with special needs are raised so differently now, than when I was young. Society has come a long way in realizing that they are PEOPLE – no less important than people without disabilities, and they deserve a quality education, right alongside their peers.
And as the numbers of children with autism grow, people are also realizing that those children are also a valuable resource to our world. I am so thrilled when I read, or hear about, a person with autism who suddenly found a way to communicate and shocked everyone around them by showing that he or she was not mentally impaired, after all.
Of course there is still room for improvement. My sons are taught in an autism classroom for most of the day. They belong to a typical first grade class as well, but are only there for a tiny bit of each day. They aren’t taught alongside their peers. But they are learning and growing so quickly.
When you get a diagnosis of something like Fragile X or autism, your hopes and dreams for your child seep right out the window and dissolve.
Lately, though, some of those dreams are creeping back into my mind. They've made such great progress the past couple of years, I'm daring to hope there's a chance they might lead independent lives.
