Don’t tell me my special needs son “looks so normal”.
By Mike Berry
I remember the first time my son stepped up to the plate the first year he played baseball. He not only looked like a miniature major league player, he acted and performed like one. With one swing, he sent a line drive up the middle of the diamond, straight into center field. When the center fielder bobbled the ball, my son had the wits about him to chug ahead, safely into second base. The crowd of parents, including my wife and I, went wild. One father turned to me and said, “You got yourself one heck of a ball player there!”
Fast forward to the end of the game. I stood by second base, equipment bag slung over my shoulder, and waited for my son to make the choice to walk off the diamond by his own power. He scowled at me, with arms folded, not budging, just beyond the dirt of the infield. He had called me every name in the book, told me I was stupid, and shouted, “Leave me alone!” so loudly that the head coach walked over to see if everything was alright. I assured him it was.
“You played a good game buddy,” he said reassuringly to my son. “We just always like to switch it up and make sure everyone gets some playing time.”
My son held his position. His upper lip was curled, there was snot dripping from his nose, and he glared as if he wanted to kill us both.
The coach then turned to me and said, “This happens often with the boys when we first start the season. They’re disappointed when we move them from a position they love to another one. He’ll get used to it though.”
If only that were it, I thought to myself.
After weeks of my son behaving like this, and the good-hearted coach trying to reassure him unsuccessfully, I finally decided to sit down with him and explain fetal alcohol spectrum disorder (FASD). I shared that while my son looked “normal” and even acted “normal” (most of the time), he suffered from a disorder that has caused damage to his brain, specifically the part where reason and logic exist.
He looked at me cross-eyed. “Well, he looks like a normal little boy,” he said.
“I know,” I replied. “The diagnosis he has is alcohol-related neurodevelopmental disorder (ARND), which is under the umbrella of FASD.”
He looked puzzled.
I felt if I had said, “He has autism or Down syndrome,” he would have nodded immediately. Unfortunately, FASDs don’t have a voice like those special needs do.
We learned a lot from that experience with the coach and many others like it — IEP meetings, church youth groups, football, you name it. We wish we could go back and redo many encounters with folks who just didn’t understand how a kid that looked as normal as mine (charismatic, perfect smile, life of the party, eloquent) could not be normal. In retrospect, we’ve discovered a few action steps that families like ours can take with coaches, teachers, neighbors, etc. to help them better understand our children.
Share the facts.
We can’t begin to count how many IEP meetings we’ve gone into with printed material on FASDs. Our good friends over at National Organization on Fetal Alcohol Syndrome andNTI Upstream do an amazing job of providing material, even a great documentary, on the facts of FASDs. Take this content with you, especially if it’s your first meeting with your child’s school, coach, or youth pastor.
Have an honest conversation.
Carve out time to sit down and speak honestly about your child’s disorder. Begin by saying something like this:
“I need to share the reality of [name the disorder] with you. I know it’s hard to see, but he or she deals with fetal alcohol spectrum disorder. It happened when he or she was in their birth mother’s womb. It has caused [name the behavior]. Here is some literature that is very helpful in understanding. The way you can help us is by [name the helpful move that person can make].”
Obviously the conversation will be more two-sided than this, and probably longer, but these are the critical points you need to make.
Share expert perspectives on FASD.
One of our favorite FASD experts is Dr. Ira Chasnoff, a leading researcher at NTI Upstream. If you have a doctor or therapist who gets it and can be a voice for you, by all means, use their perspective when communicating with people who do not understand.
There’s a point when enough is enough! You’ve shared the facts, had the conversations, even shared blog posts and articles from doctors, clinicians and writers. But the person just won’t get it. At this point, it’s time to just move on. Pull your child from the team, stop dropping them off in that Sunday school class, or request a different teacher.
We love our son. It was hard at first to admit that he wasn’t normal, and even harder to have those conversations with him. But in spite of this, we love him and we want what’s best for him. But the same is true for the people surrounding him — his teachers, coaches, small group leaders at church, even the parents of neighborhood kids he plays with. We want the best for them, too. They’re not our enemies; they’re friends and we will do everything in our power to bring them onto the same page with us, even if they aren’t in the same boat as us.
Our over-arching goal is always to build bridges and find ways to partner. Unless and until we are pushed to the absolute limit with continual misunderstanding, we will make this our goal.
This article originally appeared on Babble. For more from Babble, try:
Photo credit: Getty Images