I’m raising a son who suffers from fetal alcohol spectrum disorder (FASD). He was adopted by us when he was 1 year old, and we received an official diagnosis for the disorder when he was 3. It has left his brain permanently damaged, and our daily life is an uphill climb with him. What people rarely see (unless they spend significant time with us) is the impulsive, illogical, obsessive, and sometimes violent behavior my son displays over nearly everything.
A few years ago, I discovered firsthand just how misinformed this world can be when it comes to understanding his special needs. It was the last game of my son’s first year playing tackle football. The temperature at game time was a brisk 25 degrees. The sun was up, but slow to melt the frost that fell in the early morning hours that day. October weather in Indiana can swing from 80 degrees to 20 degree in a matter of hours. My son stood on the sideline shivering, crying, snot running down his upper lip, and looking as if he were close to death.
I stood on the opposite sideline, frustrated.
I reflected back on the night before, when I was digging out knit caps and gloves in preparation for his game. The evening weatherman said that the next morning would be brisk and cold. He even went as far as to say, “If your son or daughter is playing soccer, football, or fall baseball, you will want to dress them warm!”
But that night, my son had argued with me; resisted my care for his well-being. He told me that he didn’t need to wear gloves, because NONE OF THE OTHER KIDS WOULD BE WEARING THEM. He shook his head and told me that football players are supposed to be tough and that wearing a knit cap would make him look like a sissy.
Big talk until he got out of the car the next morning and joined his teammates (who, by the way, were all wearing knit caps and gloves). He almost immediately started to shiver. I didn’t budge. In the real world, I thought to myself, he would have to learn logical consequences for his choices. I let this play out for a few minutes.
Now, because I know my son and his behavior, I knew this was going to happen. So the night before, I quietly packed his cap and gloves in the car along with our lawn chairs and blankets. But he didn’t know this (and neither did the other parents at the game).
So as he stood on the sidelines shivering, some of the parents nearby gave me nasty looks. Others tried to remedy the situation by getting involved, but I politely asked them not to. I’m sure I was labeled as a terrible father that day. Later that afternoon, I received an email from his coach saying, “Next time we have a game with those temperatures, please make sure to properly dress your son.” He then explained his personal strategy for making sure his son was dressed for chilly game-time temperatures.
And that’s when it hit me — this world will never understand how or why I parent my special-needs son the way I do, and that’s okay! Many would look at that experience and consider it normal 10-year-old behavior, but it was the farthest thing from it.
While other children may argue with their parents, push buttons, stomp their feet, and demand their own way, my son makes it a campaign. He battles us to sometimes violent levels and refuses to listen to logic, even when logic is causing his ears and finger tips to turn blue and go numb.
Because he suffers from FASD, his brain is always at a simmer, always nearing the point of meltdown. Looking at him the wrong way, speaking abruptly to him, or pushing his buttons could cause him to boil over. We have to stay extremely structured in our schedule. That’s why we do or say some things that seem harsh or overboard.
You see, when you live with a child who has brain damage or has gone through significant trauma, you can’t leave an ounce of what you say up for interpretation. My son will fill in the blanks, and many times that equals disaster or very bad choices. I have to be blunt and to the point with every answer. I know I sound harsh. I know I sound unforgiving or intolerant. But my point must be crystal clear with my child. I stick to a strict schedule with him. Bedtime is always the same. So are trivial things like brushing teeth, household chores, and homework. Without a routine, my son will melt down.
Most parents of children with normal brains usually have to give gentle reminders to their children. Even if they mess up and forget, a gentle reminder or two usually does the trick. Not so with my child. If I gently remind him, he won’t get it, or he’ll move into a 2-hour tantrum. If I resort to doing the task myself, he’ll never learn nor come back to the task in his mind. I have to bluntly state my expectations and be ready with a consequence if he fails to do what was asked of him.
In his mind, he believes he is right and I am wrong all the time. Not only that, he can be extremely manipulative. This is a result of the disconnect in his brain. If he can get you to buy into his story — to believe that I just didn’t want to give him gloves and a hat for the freezing temperatures — he wins, and quite frankly, you lose. He doesn’t necessarily mean to do this, but his brain has been damaged. He isn’t thinking logically and, although I reassure him and show him that moms and dads always take care of their children and are there for them, he reaches for someone else. Many times, it’s a stranger or a person (like a coach or teacher) that he barely knows. Allowing others to bail my kid out does not teach him logical consequences.
We’ve custom-designed boundaries because the only way he’ll learn how to live in a real world when he’s older is through the structure I keep in place. Within his mind, there is deep fear and anxiety that even he does not understand. This usually manifests itself through impulsive choices, and sometimes, obsessive-compulsive outbursts.
When you parent normal children, with normal brains, who pull normal child-like stunts, you often fail to understand that parents like me have to remain vigilant around the clock. My wife and I cannot take our foot off the gas for one moment. We have to read labels for ingredients many never give a second thought to. We have to ask questions at doctor’s appointments that most parents never have to ask. We have to mentally and physically prepare for something as simple as a trip to the grocery store. We have to make sure our son is following the same routine day after day after day.
It can take the life out of us.
While normal children can go off routine during vacation or the weekend, ours cannot. The consequences of this could take days or weeks to undo. I don’t expect most people to understand the way I parent my special-needs son, but I am asking for respect and a little less judgment. Until a person walks in the shoes of a parent with a child who has special needs, they will never understand the reasons why we parent the way we do.
Oh, and I mentioned earlier that I secretly packed his knit cap and gloves, knowing what was coming. After allowing him to live with his consequence for a while, and refusing to let others bail him out, I walked over, reminded him that I was his parent, and that moms and dads always take care of their children, then handed him his cap and gloves.More On