The Shortest Vacation Ever

Going to Jackson Hole, Wyoming was probably the biggest mistake I have made. Luka really doesn’t like being outdoors. He tolerates it, but he doesn’t like the heat, hates bugs, and dislikes being dirty or sticky. Being in Jackson, you have mountains, water, sun, bugs, rocks, and the big one.. overstimulation. He was actually great up until Wednesday. We got to Jackson on Sunday.

Sunday:
He was a great little trooper waiting for the plane. We got there 2 hours early because I knew it would be hard to get luggage, a curious toddler, and my crippled self through security and down to our terminal. Let me just say, it was very hard. We were able to get help to our terminal and to our seats which I cannot be more thankful for.

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We did have to change clothes on the plane because he spilled orange juice everywhere. I didnt bother going to the bathroom on the plane so I just stripped him of his shirt and shorts right there on the plane. To make it more awkward, he kept saying quite loudly, “Nekka, Nekka, Nekka” which in Luka speak means ‘Naked, Naked, Naked’. All of the passengers clearly understood him and looked at us. Am I the only one who thinks he looks big here?

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First meltdown. His shorts got wet.

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Monday:
Went canoeing with Leah‘s sister. Special thanks to Leah who took this picture for me while I was watching Luka’s cartoons at the cabin. (Im addicted, it’s quite sad) We basically spent the whole day canoeing and there is literally about 30 pictures of Luka in a canoe. One picture is plenty.

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Tuesday:

My favorite picture, which will be framed, and put in his graduation slideshow. He looks adorable in jeans. He looks like he is 5 – everyone kept telling me that. I swear, it is those trendy little jeans.

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We went on a wagon ride and Luka had his cowboy hat, and pistol to protect us from the Indians.

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Wednesday:

The dreaded Wednesday. I didnt know it would be dreaded yet, but looking back, oh what a horrible day. Surprisingly, and strangely, Lucas was fine up until Wednesday. On Wednesday I woke up to a seizing two-year-old, and did everything to protect, calm, and stop him. Because we would be outdoors, I opted to put on his epilepsy helmet. It was on for about an hour at breakfast. It was immediately flung off his head when we got outside. *Click* I took a picture. Because this face you see below, was the face that signaled he was done. He started jolting which he has been doing ever more frequently when he is overstimulated, he started crying, he started screaming, he started hitting, he started throwing, he started biting, slapping, smacking, yelling, spiting, seizing, kicking, jolting. Frankly, I didnt know what to do. I was trying to hold him in lap which has resulted in a grand assortment of rainbow bruises and a cracked plaster cast. Once he had his blanket and lovey though, he just stopped immediately. Those things to him mean the world. It means he is safe, protected, and loved. We did leave this day, right after this. He is still jolting, was almost kicked off the plane, but he’s better now that he’s home.

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Leah’s nephew, Easton, who is seen running in front of Luka in the Teepee picture, has autism. He is 5 years old and Luka does the same thing that Easton does. ie: Jumping, flapping, no eye contact, little communication, repeats phrases, fixates on something. Maybe its just me, worrying about something that may not be there. But I feel like Luka is characteristic of an autistic disorder. Maybe I don’t notice it enough because he has been going to therapy and maybe the therapy has helped him to mask certain behaviors. Epilepsy and Autism are extremely common together too.
Maybe I am overreacting, but I do know, that when Luka goes in for developmental screening in a few weeks you can be sure that this topic will be mentioned.

I leave you this picture of him when he got home to have a bath, and put on new monkey pajamas.

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– Joseph

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About Joseph

18 year old dad raising a special needs 2 year old, while struggling with Dravet Syndrome.
This entry was posted in epilepsy, family, kids, toddler, travel and tagged , , , , . Bookmark the permalink.

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