I didn't intentionally leave it out the other day…or if I did it was subconscious. When I was blogging about my struggles with Mordecai I was focusing on his educational needs and how I could meet them, not what the root of the problem is. And to be honest, I've spent years trying to "protect" him. I don't want him to be seen as "that boy with FAS"…. But the reality is he was diagnosed at age 2 1/2 with Static Encephalopathy Alcohol Exposed. In plain English, that means: permanent brain damage due to alcohol exposure…in older language he would have been diagnosed with "Fetal Alcohol Effects" as opposed to full-blow "Fetal Alcohol Syndrome". They have since updated the terminology even more and now put it all under the umbrella term: Fetal Alcohol Spectrum Disorder. He was evaluated down in Seattle by the experts in the field. These doctors know more about FAS than anyone in the world.
Unfortunately, being an expert in FAS or FASD doesn't mean they know how to teach him. It's a bizarre world inside Mordecai's brain, I'm sure. Somedays are good. He has self-control. He remembers things. Schoolwork comes together…more often than not though, he's struggling to retrieve the right word, he can't remember how letter sounds go together to form words, and his anger and rage get the best of him….he's always half a pace behind…
Behind Jubilee, who is two months younger. Behind Hezekiah, who is a year and a half younger…and on many days, behind Tucker, who's three years younger. It didn't used to bother Mordecai, but as he gets older I'm pretty sure he notices these differences more and more. He can't read his Cub Scout book and rarely has the mental endurance or patience to finish the requirements for a badge…
Day after day, Mordecai struggles to keep up through a fog…I appreciate all the resources you blog readers gave to me when I blogged about Mordecai last week…one quote I read from one of those blogs was something like: a baby with FASD will grow up to be a kid with FASD who will grow up to be an adult with FASD. And that statement, no matter how true it is, makes me sad. I want him to outgrow it. I want him to have a healthy brain and a fair shot at life.
But life of course, isn't fair.
No one really knows how to help these kids…if I knew of a program that worked specifically with kids with alcohol damage, I'd have him there in a minute…
Instead we wait.
Wait for someone to come up with a great, new program that works.
Wait for him to finally "catch on" to reading.
Wait for him to remember the difference between "breakfast" and "lunch".
Wait for him to learn the difference between "13" and "31".
Wait. Wait. Wait.
And hope that someday, by some miracle, he is a successful, happy adult.