As a Thinking Mom, my days are consumed by therapies, new ideas, protocols and ways to recover my son. It’s become second nature. I wake up and instinctively dive into an ocean of errands and responsibilities. I don’t blink. I don’t flinch. I don’t sweat. I don’t wait. This is all great when it comes to getting things done, but I recently realized that there are people who are deeply affected by my actions. Those people who take a step back when they see me coming, or stop mid-sentence because I had an idea and need to point it out at that moment, or perhaps internalize their joy because they see that I’m having a bad day. These are the people who suffer along with me in silence. These people are our children.
When my son suffered his first seizure, my daughter witnessed the entire thing. She sobbed as she watched her mother fall apart and collapse to the ground. She sobbed as the ambulance pulled out of the driveway and she wondered if she would ever see her baby brother again. She sobbed as her terrified grandparents tried to make sense of what had just happened. She sobbed. By the second seizure, my older son had joined her in this terrifying experience. They sobbed together as this traumatic experience took its toll on our family.
TRAUMA- “A serious injury or shock to the body, as from violence or an accident.”
My kids were traumatized. Seeing their little brother’s blue face and limp body and the terror on my face scarred them for life. My daughter had resorted to covering her ears and hiding behind furniture whenever her little brother looked “off”. My son began to question what death was. They were forever altered.
I never imagined that I would ever consider myself a neglectful parent. The word neglect seems so harsh. Me? Neglect my children’s needs? Never. However, when you have a child with special needs, you find yourself catering to their every whim. Sometimes it’s because you are trying to make up for the fact that they suffer so much. Sometimes. it’s simply because they need you, truly NEED you. By the time you realize that half of your day is gone, your NT kids have been fending for themselves all day. I’ve neglected them and feel horrible about it. I apologize, they forgive me, and we move on while we all feel the weight of what is happening.
Another parental no-no is to be unfair. If I had one cookie left, I’d break it into 3 equal pieces right? WRONG!! If that is the last gluten free cookie, guess who gets it? After all, the other 2 kids have other options for a snack. UGGHHHHH!!!!!! I feel the guilt raising every hair on my body as I speak of it. Unfairness comes in many forms. A birthday party that we cannot attend because their little brother is screaming that day, or maybe a lacrosse game I can’t make it to because it’s important that I take their little brother to therapy. Sometimes I have to say no to sleepovers or play dates because Nicky just isn’t feeling well. Maybe it’s that they can’t go on the big rides because Nick wants to go on the bumper cars over and over and over again. Perhaps it’s a missed opportunity to go to Dairy Queen because Nicky “can’t have that”. The list goes on and on.
My kids were forced to grow up too fast. They knew how to make a sandwich for themselves, get up and be ready for the bus without assistance and well……even wipe their brother’s butt if need be. They are each little adults trapped in a child’s body.
Ok….so now that you feel like complete crap about yourself (as I do on most days), wipe away the tears, pick yourself up and think of the positives. These siblings have attained a tremendous amount of knowledge. They are aware of what healthy foods they put into their bodies, are familiar with medical terms most of my adult friends don’t know, are always aware of their surroundings, keep track of what their little brother can and can’t eat or do, and know the dangers of vaccines. Their children will be better off due to this knowledge.
They are also compassionate. While most kids their age are concerned about how the world revolves around them (ahhhh childhood), our children truly care about others. They have learned that kindness, tolerance and love are more important than their own need for satisfaction.
They are helpful. My kids never fail to amaze me. Just when you think you’ve hit your limit, one of them comes along to save the day. “Let’s go on the trampoline Nicky. Mommy needs to finish cooking.” Or maybe, “I’ll help you solve that level on Mario Bros”, just as you see that your ASD child is about to have a meltdown. My favorite one is, “I’ll stay with Nicky while you run to the supermarket mommy.” They have become my little helpers. Not the cutesie “pour the chocolate chips into the bowl” kind of helper, but more like the “I don’t have to hire a maid, chef and nanny” kind of helpers. The kind of helpers that help you maintain your sanity.
They are mature. My daughter is physically very mature and doesn’t look like your average 12 year old. However, it’s the way she thinks and reacts to things that make her mature. The way they become selfless and understanding of why things are the way they are. They know how to prioritize and keep things on track. Don’t get me wrong, their rooms are a disaster, their sporting equipment is scattered about the house, and their dirty dishes may stay on the table BUT, when the shit hits the fan, I’d rather that my 10 and 12 year old be there to back me up than just about anyone else.
Autism certainly takes its toll on all of us. We all fall victim to depression, anger and fear, but it’s how we cope and handle it that truly matters. Our children have the ability to rise to the occasion. They are aware of how unfair life can be, yet they are ready to fight against that unfairness. They possess a strength that most of us can only wish for.
THEY are our future!!!!!
THEY are our hope !!!!!
THEY are Thinking Kids !!!!!!!!
…….and I am so very proud of them <3