My son’s coach meant well. He really did. His fatherly instincts told him to comfort my son and try to remedy the situation by loaning him his gloves. The temperature at game time was a brisk 30 degrees. The sun was up, but slow to melt the frost that fell in the early morning hours when it was much colder. 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, glaring at him, feeling absolutely no sympathy (I know, I know….not very connection-oriented. I admit it. But hang in there with me for a moment…).
I reflected back on the night before, when I was digging out knit caps and gloves in preparation for his game. And since I’m a college-educated person I paid attention to the evening weather report. I listened when the weather man said the next morning would be below normal. He even went as far as to say, “If your son or daughter is playing fall sports, you will want to dress them warm!”
My son argued with me. 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. Then, he obsessively walked around the house in his uniform pretending to be an NFL player who didn’t wear long sleeves in frigid temperatures. 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 tried to talk to him but he instantly blamed me, the person who cared enough to adequately prepare him for the elements.
He screamed at me, and then ran off before I could pull the cap and gloves I had packed anyway, out of my bag, and hand them to him.
Some of the parents nearby gave me nasty looks. Some even tried to get involved (eh hem…butt in!). I’m sure I was labeled as a terrible father that day. But the highlight of this experience was the email I received from his coach, later that afternoon, saying “Next time we have a game with those temperatures please make sure to properly dress your son.” He then explained his 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 9-year old behavior. It was the farthest thing from it.
Noticed But Not Understood.
What people rarely see (unless they spend significant time with us) is the impulsive, illogical, obsessive behavior my child displays over nearly everything. He suffered permanent brain damage pre-natally. He was born with drugs and alcohol in his system before he came to us through foster care. His official diagnosis is Alcohol-Related-Nuerodevelopmental-Disorder (ARND for short). This trauma has caused him to act, speak and behave in certain ways. While other children may argue with their parents, push buttons, stomp their feet and demand their own way, my son makes it a campaign, battles us to sometimes violent levels, and refuses to listen to logic. So, we’ve had to adjust the way we parent him. Here are a few things most parents won’t understand…
- “I’m concrete for a reason.” When you parent a child who 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 on point always. My yes needs to be yes, and my no needs to be no. No gray areas…black and white always! I know that sounds harsh. Trust me, when you constantly repeat yourself, over and over and over again, it can make you a little jaded. I’m trying to not sound harsh though, I promise. My words, my perspective, and my point must be crystal clear with my child. There are no ‘maybes,’ or ‘We’ll see,’ or ‘possibly’ in my vocabulary. I have to say what I mean, and mean what I say.
- “We have boundaries in place to help him bond with us, not because we’re mean.” We’ve learned that children from trauma do not respond to unclear boundaries, or lack of boundaries, the same way other children do (really though, no child does!). I bring this up because, in my child’s 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 believe that I just didn’t want to give him gloves and hat for the freezing temperatures, he wins, and quite frankly, you lose. He doesn’t mean to do this. He’s speaking from a place of fear that he doesn’t even understand. 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 something else. Many times, it’s a stranger or a person (like a coach or teacher) that he barely knows. We maintain strong boundaries because we’re trying to build a healthy bond with him. And the only way he’ll learn how to live, in-spite of his trauma, is through the structure I keep in place. Within his mind there is deep fear that even he does not understand. When things are left hanging or undefined it can cause him great anxiety. He’s also afraid that we’re going to leave him, even though we’ve been his parents for 13 years. This usually manifests itself through impulsive choices, and sometimes outbursts. I stick to a strict schedule with him to help alleviate this. Bedtime is always the same. So is wake up time, when we eat meals, when we watch TV, how long we watch it, where we place our shoes and backpacks after school, and more. We also must be the primary people who feed him, clothe him, and guide him. We are routined and structured with all of this, every single day, even on the weekends. Without it, my child can’t function.[shareable]We have boundaries in place to help him bond with us, not because we’re mean.[/shareable]
- “I have to keep going even though I’m extremely exhausted.” Parents of normal children, with normal brains, who pull normal child-like stunts, often fail to understand that we have to be vigilant around the clock. We have to read labels for ingredients you 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. Back to routine for a second…we have to make sure our child 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, mine cannot. The consequences of this could take days or weeks to undo. I don’t expect you to understand the way I parent my special-needs son, but I am asking for respect and a little less judgement. Until you walk in the shoes of a parent with a child who has special needs like mine, you will never understand the reasons why we do the things we do, and say the things we say.
- “I really am trying to build a connection with him.” Fact is, this is hard to do, but I keep working on it anyway. We haven’t bonded the same way traditional families have. It has been an uphill climb of trust-building, being pushed away, pursuing him anyway, and then being brushed aside in favor of other adults who misunderstand the big picture and try to fix things. You can understand why I am quick to ignore you and focus on my child. I focus on connection before correction with him always, but I rely on a strong connection to funnel into correction. That me become lost in translation to you, but that’s also because you don’t walk in my shoes day in and day out.
It’s What Moms And Dads Do.
In case you’re wondering, I gave him his knit cap and gloves. After a few minutes of watching him shiver and glare at me, and hearing the judgment from other not-so-well meaning parents, I walked over to the sideline where he stood, placed my hand on his shoulder, reminded him that moms and dads always take care of their children. Then I hugged him and handed his cap and gloves to him…..which he left on the field after the game and lost forever….but that’s another story :-).
Are you raising a child with special needs? Perhaps you’re an adoptive mom or dad who has gone through the same thing. Share your story with us.