Jack wanders. Unless he’s eating with the family around the kitchen island or he’s stationed on the couch in the den in front of Impractical Jokers, he likes to walk around the house. We call it “doing his loop”. He walks from the kitchen, through the dinning room, to the living room and then back to the kitchen. Occasionally, he’ll stop and acknowledge one of us with a little pat on the head, but mostly he just walks slowly from room to room. If someone rings the doorbell and makes the dogs go nuts, Jack will react by hopping up on one leg and speeding up his pace. And, if he notices the commercials on the TV have ended, he might take a break from walking and find his way back onto the couch.
Sometimes when Jack is wandering, he goes off route and heads upstairs and it takes us a minute to find him (our boy can walk up stairs unassisted, but is not able to walk down stairs without a hand). Last week I was busy doing something very important – like a puzzle or watching Dateline – when I realized that Jack wasn’t in the den where I had left him. I did the loop and didn’t see him, so I raced upstairs. I found him in our master bathroom checking himself out in the mirror. He had a big smile on his face and a Visa bill in his hand.
“JackO, what do you have there? I need to pay that dude. Go put it back where you found it.”
Jack smiled and walked right past me. I followed him and watched as he made his way into the office and laid the bill down right in the center of my desk.
Why am I sharing this? Because it’s amazing!!! It’s been ten years since Jack has followed a two part command. It’s proof of progress.
There’s more.
The other night I had some ladies over. We were all in the kitchen enjoying cocktails and catching up. I gave Jack his nighttime medication and then walked him to the bathroom to sit him on the toilet. I closed the bathroom door and returned to my friends. I was planning on giving him a couple of minutes, but may have gotten a little distracted. I was knee deep in a fascinating conversation about teenage angst, when I looked over to the doorway and there was my son. He had gotten himself up off the toilet, opened the bathroom door and found us. His pants were around his ankles, but he had pulled up his diaper. Such a gentleman – knowing there were ladies in the house.
Again – this may not sound like a big deal. It is. Huge.
Need another example?
I picked up Jack from school the other day and we were doing our usual routine of listening to music and chatting (one sided) about our day. Jack seemed bored with me and started looking for something to do. First he turned on the interior light, then he opened his window.
“Jack, your driving me nuts. Turn off that light.”
He looked at me, smiled, reached over and turned off the light.
“Wow! Jack, now close the window.”
Window closed.
The whole way home I was in shock. Did he really just listen to me? Did he just follow a command — and then another?
We pulled into the driveway, I got out of the car and I went around to open Jack’s door. I reached down, gave him a kiss on the cheek and told him how proud I was of him, “Jack, now can you unbuckle your seatbelt?”
He didn’t miss a beat. He reached over and clicked the button. Proof of progress.
That’s right folks. Progress doesn’t always follow a straight line for our boy, but lately he has been shooting ahead steadily – Jack is amazing.
But we already know that.
Love, Proud Mama
Simply awesome. Go get ‘em, Jack!
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Thanks Andy. I hope you can meet JackO some day!
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Way to go Jack! You are amazing Jack…not to mention your wonderful family❤️
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Thanks Cindy. Our family is our biggest duct tape!
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Reading this made my day!
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Thank you – I love being in touch!!
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Amazing! I love hearing stories about these ALD boys and heir progress. I wish Dalton could be here and we could be swapping stories, but I still love hearing all the others just the same. We will beat this monster of a disease. Love you! Tell him to keep up the good work! This whole family is an inspiration 😇
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I wish Dalton could me here too. I bet that he and Jack would have a blast together – joking around and listening to music!!
Love you sister!!!
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Tears of joy, of course. Still, you made me cry.
Uncle Dan
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Wow.
He followed a two-part command.
Ten years for me since I learnt to draw on the Right Side of the Brain.
Ten years since I worked on my dream book – as another Disability Blogger said about active citizenship – important things in life take personal investment.
Another two part command.
Money what makes the world go around and facilitates other exchanges.
And, Jack, you are so very very good at exchanges.
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Hooray for progress! That is great news!
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