It’s a mild September afternoon in Central Indiana where we live. My family and I have spent the past hour watching my oldest son play football on his 7th grade team. Another game, another victory. This team is so good it’s scary.
As the clock tics down to the final seconds, we make our way down to the sideline to say hello to our sweaty, dirty mess of a child. He loves the game. Especially the hard-hitting aspect of it. The sun has gone down and it’s nearing 8 PM. He sees us waiting by the track and excitedly jogs over to us.
“Hey Mom, Dad, can I go to Steak ‘n’ Shake with the team? Everybody’s going and I want to go.”
“Not tonight buddy, it’s bedtime,” my wife replies matter-of-factly. “You need to come home and shower and head to bed.”
“Why?” he replies with an irritated look on his face.
“You know why buddy. Dad will be over to pick you up outside of the school in a minute.”
He argues for a minute but we stand our ground. We have to. Every night is the same, even on the weekends. At 7:30 PM we begin the routine. By 8 PM lights are out. It’s structured, it’s consistent, it’s almost without fail.
As I walk away from my son and head to the car, I catch a glimpse of a few moms standing nearby. Without even looking directly at them, I can feel their stares. I can feel their judgmental looks. They can’t believe we won’t let him go out with the rest of the team. By now, I’m sure their sons have given notice of our decision. Our son isn’t helping the situation.
I know this, because I’m used to this. After more than a decade of parenting children with special needs, I’ve grown accustomed to the stares, whispers, and gossip. I used to get annoyed, even angry at them. Now, after more times than I can count, I know why they stare at us with unbelieving thoughts. They don’t understand our situation or why I parent my special needs child the way I do. My son experienced brain damage caused by drug and alcohol exposure before he came to live with us. More than a decade ago, we brought him into our home as a foster care placement, and then he was adopted a few years after that.
As a result of drug and alcohol exposure, the executive functioning portion of his brain is absent. His brain is always on overload and there is very little reasoning, if any. Logic and patience is trumped by irrational thinking and impulsiveness. Because of this, he must follow a solid schedule. A routine. A format. It’s almost night and day from the schedule or pattern of a child with normal functionality. A child who’s mother took all of her prenatal vitamins, and did not drink a drop of alcohol or abuse her body while her child was in utero.
So, I understand their misunderstanding. While I don’t owe anyone an explanation, here’s my logic …
1. It’s not strict, it’s structured.
My parenting is often chalked up to being strict, or unwilling to bend. But, it’s actually something different than that. It’s structure. Structure is built on purpose, intention, and logical reasoning. We have a very clear reason why our child follows a structured schedule. His body, his brain, only thrives when he knows what to expect. When time is left open, or a blank in the daytime routine is not filled in, he feels out of control and chaos ensues.
2. I have to be consistent.
The only way he grows within the structure is through consistency. One of the most valuable pieces of advice we received from a medical expert, who specializes in diagnosing and treating fetal alcohol spectrum disorder, was: “Repeat, repeat, repeat. Every single day must match the one previous. When he knows what to expect, his mind will be at ease and his body at peace.” We’ve never wavered. Again, this looks strict and unreasonable on the outside, but internally, we are achieving health and well-being.
3. I’m working on a bigger picture.
My vision supersedes the here and now. That’s one of the biggest things parents of normal functioning children misunderstand. I have to look past the present and into the future. Not only that, but I have to focus on a bigger picture. One that includes helping my child function in society, make wise choices, and navigate a sometimes tricky world that can be all-consuming. There will be a day (even now so) where my child will have to make choices apart from me. I will fail him if I drill down on one pixel of the picture of life, as opposed to the bigger picture of the world he lives in. The real world. I’m not raising a child, I’m raising a future adult. One I hope and pray is able to relate to and live in this society as normal as possible.
I don’t expect every single person who reads this to empathize, understand, and relate to what I’m saying. I’m just asking for a little less judgment and a little more compassion for my real-life situation. If you can choose that path, it helps me help my child succeed.
Originally published on Babble