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The Little Things

Do you remember the first time your child reached out to hold your hand? I do. I will never forget that day.

November 14, 2014. Paislie was 3 years, 6 months, and 4 days old. I will never forget it. Up until now, and once her regression had begun, Paislie hadn’t acknowledged that I was her mom. She didn’t look at me or for me. If I grabbed her hand to hold it there was nothing on the other end… no grip, just a limp hand that didn’t care that I was even there. But on November 14, 2014… she reached out for me and held my hand. She held my hand on her own. Not because I was trying to hold hers… but because she WANTED to hold mine. The feeling I felt at that moment hasn’t gone away. Every time I think about it I feel overwhelmed… not in a ‘this is too heavy to handle’ kind of way… but in a ‘this felt so amazing my emotions have never been so high’ sort of way. I didn’t want to let go. Every time she holds my hand or grabs for me I think about it. I remember being invisible for so long that when she finally realized I was there and that I was her mom it felt like we met for the first time. This is when our relationship truly began and when I started to get to know my daughter.

This journey can be tough. It can be lonely and scary and dirty and just plain hard. But I’m grateful. In a typical life, I may have missed the first time she held my hand. I may not have even thought about it…and those moments fly away so quickly. There are things about this journey I have a love/hate relationship with. I hate how time is slow and I love how time is slow. Autism causes us to take everything in… and I mean everything. We take data on every trip to the potty and every word spoken. We track when things happen and why they happen. We adjust our behaviors, our environment, and our schedules to accommodate and support our children’s severe needs. Nothing goes unnoticed. It is stressful and it is so very beautiful. We get to freeze moments that would usually fly by under the radar with one simple excitable feeling and then, poof… forgotten. But with Autism, it is a pinnacle… time stands still. I am forced to be present at every moment and notice every tiny thing…and for that… I am grateful. After all, most of us only get one shot at this parenting thing…and although our story is non-preferred and different from many, there are gifts.

Paislie is more than Autism. So is Jace. You see, these kids are children. They take their first steps and say their first words. They giggle when they are tickled and they give great hugs. They like toys and movies and taking car rides. There is a desire for relationships and friendships and although it is difficult to convey, they feel deeply. Their senses are more intense than ours and that means that they feel deeper. When you see a disabled individual that may be non-verbal or may not look you in the eye, don’t assume that they can’t hear and feel every word you say or fear that you feel. Their lack of response may just indicate that their brain doesn’t tell them to speak or that if they look at you the images of your face are so intense it overwhelms them. They may not be able to enter your world and meet you where you are at, but most of us are capable of entering their world and meeting them where they are at.

I used to be filled with pride before I was a parent.

“I would never let my kid do that.”

“Why would that person let their child wear that?”

“When I have kids, they will not be picky eaters… they’ll have no choice.”

“Take your loud child out of the restaurant so the rest of us can eat dinner.”

“Vaccinate your kid or stay away from mine.”

“Your child is screaming in the store… do something about it!”

You see, I thought I knew. I thought I knew how to be a ‘good” parent. I had it all together and knew better and those other parents, they were lacking… they didn’t know how to care for their children properly. When I became a parent, I’d do it better.

Well, I became a parent.

Autism was laid in our lap and before I knew it my pride and ideas of parenting went out the window. Between our personal experiences and watching dear friends of ours in the same boat struggling with their children, I was put in my place fast… and I learned quickly that I had been placed on the other line of that parenting war. My kids and my friends' kids were the ones struggling and we became the crazy looking parents.

I will challenge you. Next time one of the above scenarios plays out in front of you… think to yourself that maybe that child is wearing that because it is the only thing they will wear. The parent has possibly fought them for two years and finally gave up because it is just an outfit. Or, that their sensory issues are so strong that any other fabric hurts their body. When they won’t try that dinner and their parents don't force it, maybe the texture and taste of that food cannot be eaten without being thrown up and that tears and mood swings will follow because of the trauma trying that food creates in their brain. Maybe when that child is being loud at the restaurant, it is the family's first attempted trip to a restaurant in four years. After months of therapy working up to this, they will never know if they can step into a place for dinner without trying it out. Maybe before you refuse to befriend a non-vaccinated individual, you will hear their story first… that maybe the parent is forgoing the vaccine because of another one of their children or relatives that is vaccine injured. When that child is screaming in the store and seems too old for the cart, remember that they are maybe trying to get through a melt-down before they leave so the child doesn’t learn that screaming gets you out of a situation, but that calm, nice behavior does. Keep in mind they are most likely screaming in the first place because they hear every sound in that store from the clocks to the carts moving to chatter to the furnace all at the same volume. I’d want to scream too. My point here is that when I wasn’t here, I thought I knew… until I was here. Without Autism, I’d still be that person… the one filled with pride and no awareness. It is hard, but I am so grateful for this gift of understanding that I wouldn’t have without this journey… God and Autism have given me more empathy than I have ever had in my life.

I feel so thankful for the most valuable lessons I have learned. It isn’t always easy, but our goal in life is to always be better. God is sculpting me into the woman I am intended to be…for Him, my husband, and my children. This journey isn’t the easiest journey, but it surely isn’t the hardest either. I am blessed…beyond blessed. I pray God will continue to shape me… no matter what it takes.


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Hi, I'm Kacie Ko

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