My Child With FASD Is A Warrior!

The world often looks at a child like mine, who suffers from fetal alcohol spectrum disorder (FASD), as a hopeless case. But that couldn’t be further from the truth. He is a warrior. And he is overcoming this disorder every single day!

Cute Little Knight

My son sat slumped next to the front door in a defeated posture. 
“What’s wrong kiddo?” I said. “We’re going to church and you won’t tie my shoe for me!” he shouted back. I jumped, surprised at his response. He hadn’t asked for help. To my knowledge, he hadn’t even been sitting there that long. I crouched down next to him. I almost yelled but remembered quickly that my son’s brain doesn’t work like other children, he has FASD (Fetal Alcohol Spectrum Disorder) and his frustration level goes from 0-60 without warning. I took a breath again and asked if I could show him how to do it with one shoe and he could do it with the other shoe. “No!” he shouted again. I stood up and calmly reminded him that shouting hurts my feelings, I would be happy to help when he was ready.

I walked a distance away and waited. Half an hour went past and his facial expression changed. He took a shoe lace in each hand and with marked concentration talked himself through the steps of tying his shoe. When he was done with one shoe he looked up at me and asked with exhaustion, “Mom, will you do the other shoe?” I walked over and tied his shoe and squeezed his shoulders, “good job buddy.”

Thirty minutes is how long it took for him to be ready for the task. Thirty minutes! My brain works at a pretty quick pace. I almost never sit still for a moment. Patience is not my greatest quality. 30minutes to me is like an eternity but for my son, that’s how long it took for his brain to reregulate. I was tempted to sit and stew about the wasted time but then I looked at his sweet face contorted with frustration. I desperately wanted to scoop him up, reach into his brain and push the button for peacefulness. I wanted to bypass the block that keeps him from doing multiple step directions with ease. I can’t do that. He can’t do that. His brain is like a simmering pot. Just one small nudge on the temperature and he starts boiling. Just like that boiling pot, it takes some time for his brain to cool down and start thinking clearly again.

What I felt as I watched his face go from anger to defeat to peace to determination was sheer pride. My son is a warrior. He doesn’t let anything defeat him. He may get frustrated for a moment but he always returns to the task at hand with a resolve that rivals any other. Simple tasks have always been difficult for him but he absolutely, never quits. When the battle gets messy, he pushes forward. When the fight gets hard, he lets out a battle cry and charges toward the future.

He was the last student to read in his class. We held him back a year to give him some extra time. He loved to look at pictures in books from the time he was a baby but if he felt the pressure to read, he would throw the book down and clench his fists in frustration. Things may be harder for my son, but he is not a quitter. He kept picking that book back up and by the end of 2nd grade it clicked, he could read. He worked 10 times as hard as his peers but never gave up. Even better, he LOVES to read. He finds joy in turning each page and HE is the one who accomplished that!

When I was 13 I thought it would be cool to learn to knit. I bought knitting needles and some yarn and borrowed a book on knitting from the library. I practiced for about a day and then quit. At 16, it was the guitar. At 25, it was running. At 30, it was painting. At 35, the ukulele. Tasks have always come easy for me and when they don’t, I shake off the disappointment and try something else. For my son, most tasks are difficult, but he never gives up. FASD has changed the way his brain works but it has not ruined his life. He is amazing, he is a warrior.

Question: What truths have you discovered about your child, in-spite of a disorder like FASD? Share your story with us in the comment section below. You can leave a comment by clicking here.

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  • Kpainter

    It’s always amazing how timely your posts are … and that’s God, pure and simple. I was so frustrated this morning while my son was sitting at the kitchen table after breakfast trying to practice his sight words. We’re on week 3 and he still can’t recognize week 1 words. I’m like you, I’m a quick thinker … learning has always been so easy for me so I’m absolutely bewildered when simple concepts don’t click for others. THANK YOU for the constant reminder that their little brains aren’t wired like ours. It will come to him eventually. Does it make or break me that my son doesn’t know the difference between “and” & “the” … NO. Did I feel like that this morning? Yes. But after reading this I so badly want to drive back over to the school and give him a great big hug .. and for that I’m grateful. You always help reset my spirit and help me take a step back and look at the bigger picture. ♥

    • Kristin Berry

      Hi there! You are so welcome. On a side note: My 16 year old took forever to learn to read. She never did understand the sight words but reading eventually clicked. She still doesn’t love to read but has found that she can understand audiobooks! My 14 year old was 12 when he finally started reading and now he reads books about natural disasters, chemicals in our food, toxins in the air (strange and frightening choices i know!) But he’s doing it! Hang in there 🙂 K

      • Kpainter

        Thanks Lady!

  • Murray Coulter

    This is a very timely reminder. Our kids don’t start back to school until after Labour Day. Our younger son had a tough go in Grade 1. He is starting in a new class in a new school, better suited to his needs. I have seen a couple of different reminders over the past few days that we have remember our kids (and others people) don’t always process things in the same way or at the same speed.

    Well said.

    • Michelle Sackett McKinney

      Hope the first week of school goes great!

  • Jeanette Bousman

    Like you, our now 16 son has FAS(D). After we learned to treat the symptoms of his disorder as just that … symptoms … NOT the ‘bad boy’ behaviors everyone assumed them to be, we all started the process of healing from the hurts and stress brought on by those symptoms. Are things perfect? No! But, we are now much better at managing those symptoms and recognizing when things begin to escalate in his brain to where he can no longer cope. We are now much better at redirecting him to avoid most of those symptoms from escaping. For the first time since about 4th grade, he is in a school setting that GETS IT and wants to help him succeed. It has NOT been an easy road and there have been some huge learning blocks along the way; but, God is so faithful to give us the wisdom and resources we need when we need them. Thanks for sharing your journey!

  • Yay!!!!

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  • Laurie

    Such encouraging words. Thanks for the reminder to be patient with our kiddos.

  • I wanted to tell you. My little boy hasn’t been officially diagnosed with FASE because his birth mom never said she drank alcohol, and they wouldn’t give me a diagnosis. However, he sounds so much like your little boy. When we were discussing school this coming year (before starting it), he expressed disgruntlement again about hating school. I got upset because the last two years were such a struggle – every single day. My husband was calmly trying to discuss with him, about coming at it with a different attitude. I read this story to him (minus anything about FAS). A light came into his eyes as he recognized the same symptoms, the same struggle, everything from throwing his book down in frustration to his struggles with his shoelaces. At the end he smiled, and pointed out how your son was like him. The “warrior” idea really hits home with him. So this school year has started better. He is starting 2nd grade (held back a year) and his reading is finally making a little progress, even though it is slow. He isn’t fighting his school like he used to every day. Thank you for sharing your story.