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Challenge: Kids with Special Needs

Do me a favor and grab that blank piece of paper

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I am sure that most of us have experienced a delay of some sort in our lives. Perhaps we've heard "ladies and gentlemen I regret to inform you that your flight has been delayed." Or received an email from school letting you know that due to inclement weather the morning buses will be delayed by 2 hours. Just a delay. At some point you know it will happen, albeit late and with some inconvenience, but it happens.

In the beginning when we received the diagnosis of developmental delay for our son I thought we could catch up. After all, a delay was not never in my mind. I remember thinking that the gap between him and his peers was small; he was six months old but only three months behind. We could close that small gap, right? I remember telling a friend as long as we got him into therapy early we could catch him up. As the months went on, I could see the gap grow before my eyes.

Every well-check to the pediatrician was another punch in the gut. She would hand me the packet outlining age appropriate skills and he wasn't able to do a single thing. I despised those packets and would leave her office with tears streaming down my face. Every. Single. Time. I felt so defeated. I felt like we weren’t accomplishing enough. I felt like the goals we were meeting weren’t good enough. Every packet reminded me that he still wasn't able to do what was on the previous packet. Did I need to do more? What was I doing wrong? He was in therapy hours and hours a week and yet we were still falling behind. At age one he wasn't holding his head up. At two he couldn't sit. At four he couldn't crawl. Currently, at seven years old his gross motor skills are below a ten month old. He doesn’t verbally communicate, doesn’t eat food orally, can’t walk...the list of things he cannot do is long.

In our case, sometimes the delay really does mean never.

And it's okay.

I want you to know that eventually tears stopped splashing the white pages of the dreaded developmental packets. I stopped feeling like I was failing. Maybe because I quit looking, stopped comparing. I stopped trying to catch up. You want to know why? He is who he is. My goal is not to make him typical, my goal is to nudge him to become the best version of himself. Comparing him to who he “could” be isn’t fair. It’s not fair for me to be longing for him to be someone else. I know that there are many things that will be out of the realm of possibilities for him. No matter how many hours of therapy we do or prayers prayed there will be milestones we will never reach.

Again, that’s okay.

I would be selling him short if I sat here and listed all of the things he still can’t do, when what I really want to do is tell you how amazing he is. He is smart, silly, and the greatest joy in our life. He will tell me over and over with his communication device that he likes to read, especially when we are in the middle of a non preferred activity, hoping that his manipulation will work. When I lay on the floor next to him he’ll sweep his little arm around my neck and never let go. He’ll greet me with the sweetest smile when I reach his bed in the morning to carry him downstairs. He knows all of his colors, letters, and how to work his charm to get his way. He looks at me with his eyes that tell a story, and I am forever grateful he’s ours. I don’t want him to be anyone else. I want him to be unapologetically who he was made to be, and I will never stop helping him thrive.

If your child has the diagnosis of developmental delay and you’re looking at a developmental packet right now, I want you to do me a favor. Instead of checking off everything as no with tears blurring your vision I want you to stop. I want you to get a blank piece of paper. I want you to start writing down all of the things your child can do. I want you to write down the smile when he/she looks into your eyes. I want you to write down the squeal when you walk into the room. I want you to write down the grasp of a beaded necklace that took hours and hours of therapy to achieve. Write down the head lift for 30 seconds while on his/her tummy, or prop sitting without support for one minute. All of it. I want you to celebrate all of the can do’s. Write down every accomplishment no matter how small it may seem. I promise you, it’s not small to me.

Developmental delay may mean never but that doesn’t mean there won’t be accomplishments along the way. Achievements that aren’t on that silly packet. Throw that packet away. Grab that white sheet of paper. Write every step, scoot, grasp, and giggle down and celebrate. I’ll be here celebrating right along with you.

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