Ah summer! We’re talking flip flops, sunglasses, bike rides, hanging by the pool, staying up late, catching fire flies, and then sleeping until we wake up the next morning. Nothing better, right? But when you’re parenting kiddos with special needs, who thrive in a structured, routine-driven environment, summer can spell disaster.
I get it. I’m the parent of eight children, three of whom have major special needs that range from sensory processing needs to hyper-activity and extreme anxiety. Three of my children have been diagnosed with alcohol-related neurodevelopmental disorder, which falls under the umbrella of fetal alcohol spectrum disorders.
For most people, summer break with their children is a time to head to the pool, take big family vacations, play with other children in the neighborhood, or sleep in. It takes on an entirely different form when you’re parenting children from traumatic pasts, or with major special needs.
I flip through my Instagram early in the morning before everyone’s awake. I can’t help but feel jealous of the pictures I see. One after another it seems. Perfect families, gearing up for perfect summers, with their perfect children. Yes, I know they’re not “perfect.” Everyone has their flaws. Everyone has their shortcomings. But from my vantage point, and the uphill climb I have every day, everybody else’s situation around me looks….perfect.
It’s extremely challenging to raise children from difficult places, who often speak and behave out of their trauma. How do you keep from losing it when you’re pushed to the edge by your child on a daily basis?
We are parenting multiple children with special needs. Out of those special needs we often see extreme behavioral shifts. We find ourselves pushed to the limits, and beyond, on a weekly basis. We haven’t always been able to keep our cool and peacefully navigate the pitfalls of raising difficult children. We understand this battle all to well. It’s been a process for us, as parents, as much as it has been for our children.
It’s a decision we had to make 3 times in 4 years with one of our children. It never got easier. There were only more questions and more what-ifs. Along the way I asked the question…. “Am I a failure as a parent for making this choice?”
Not a day goes by where my mind doesn’t drift to that day. I can close my eyes right now and remember everything clearly. I’m standing in a warm office on the hillside of a residential campus in Missouri. It’s December, just a week before Christmas. I keep noticing how the barren trees on the rolling hills, surrounding us, form a murky gray color. Fitting for the circumstances. In another building, across the campus, my son is meeting the people he’ll live with for the next 15 months. It’s taking all of my strength to hold back tears.
In the midst of the overwhelming trials we’ve faced in raising a child with special needs, we believe that there is a bright future ahead for him. It’s very hard to see, at times, but when we look closer and seize the good moments, we can see it.
Five-thirty is the worst time to go to the grocery store! Every parent knows that, but I had to go. The kitchen cabinet held approximately two heals of bread and a can of beans. I had a meeting until the very minute my older kids got out of school. I raced to get my older son to and from Karate. I scrambled to pick up my younger three from their afterschool club. I arrived just in time and my sons loaded into the car laughing about their day.
Everyone knows the Holiday season can be stressful. When you’re raising a child with major food issues, the stress can be insurmountable. How do you successfully navigate a season filled with foods that your child cannot have?
One Hour Ago.
My son is an hour into a full on rage. Our family room is littered with previously folded laundry. He has tipped the piano bench over and the toy box is now teetering on the edge of the couch. With the Christmas tree clutched in his fist, he is threatening to break every ornament. My husband and I have chosen not to engage. We are sitting at the dining room table with our laptops open pretending to work. We are messaging back and forth. Encouraging one another to keep our cool. We will not intervene unless he is going to hurt himself or someone else. We glance up every so often to see his eyes darting back and forth between his mess, us and the front door. “I’ll run away!” He screams. “I’ll miss you.” I say. It’s the first word we’ve spoken since we found the cookies and candy canes jammed into the pockets of his dress pants. We have an agreement with him that if a rage like this ever happens again he will be responsible for cleaning up every last item. He will also be responsible for earning money to pay for any items that are damaged.