Life with Autism, New Vans, and extending the Tribe

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Summer is wrapping up and I’m starting to feel a chill in the morning air. My children and I have really been trying to milk these last days of summer. Yesterday we spent the day at a pastoral swimming pool. Honestly, it felt great to be outside snacking on some snack shack eats while immersing myself in the final days of summer. I digress.

This time of year also means back to school shopping. See these shoes here? These are my son Tristan’s Vans. There is an interesting thing about Tristan. He has a neurological development disorder. The schools have classified this as autism. He has a few defining physical characteristics. Tristan has one foot that is slightly larger than the other and a distinct gait. He has a large birthmark that covers his left leg, hypotonic muscle tone, and occasionally he has hand tremors and motor seizures. The theory from genetics is that Tristan may have a chromosomal mosaicism.

Needless to say, Tristan is very hard on his shoes. He also wants nothing more than to be an artist and an animator but due to his lack of motor coordination skills his drawing does not reflect his age. He tries so hard and has an intense desire to push himself. He commits several hours a day to drawing and has a vivid imagination.  He has an instagram feed for his drawings that I follow it’s called letsdrawtrash.

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Tristan is a morning person, and wakes up happier than anyone I know. He is up every day at seven because he has a summer job doing landscaping and weeding. I’ve spent the last few weeks waking up to him singing in the shower. One day I’m going to have to record this. It really is hysterical. Tristan has also taped little positive affirmation notes for himself on his bathroom mirror. All of this was totally his idea.

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Anyway, when I took Tristan to the Vans store we were approached by a young worker who said to Tristan, “Dude, how long have you been sporting those Vans for? You need to retire those now bro.” I totally agreed, but needless to say Tristan did not walk out with a new pair of Vans. The boy has a peculiar attachment to his shoes. He did walk out with a blue hoodie that he thinks really enhance his eyes. Our deal was before school starts he will be getting a new pair of Vans. Just a little aside, Tristan shops Vans because they support autism.

After the Vans store we went to Barnes and Noble so Tristan could get some drawing books. Tristan was terribly afraid someone was going to steal his blue hoodie. When we got to the car you should’ve seen the look on his face when I joked, “YOUR HOODIE IS GONE! SOMEONE stole it!” We laughed. All signs that we both recognize his attachment to his hoodie. He’ll probably wear that one down to nothing also.

So here’s hoping this boy has new Vans by the time school starts and that the school year is kind to him. This is just a glimpse of a life with autism or what I like to call “neurological diversity.” There are challenges, but I am inspired by autism everyday, and the great people who have come out of the woodwork whom I call “my tribe.” We just recently got new members whom I am very happy with.

JOSH

My daughter’s new husband is a drill instructor on Parris Island and mails Tristan work out shoes and books with exercises to increase his strength. Tristan is diligent about doing them. He looks up to Josh a lot. I am liking this new dynamic. Tristan has spent his life entirely surrounded by sisters. He was happy to have Josh on board.

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LUCAS

My other daughter’s boyfriend got them matching squid hats at a theme park and they walked around wearing them all day. He is a guitar player, and I love to listen to him and Tristan sing together while Lucas plays. I derive so much joy eavesdropping on their jam sessions. Lucas has also given Tristan some of his old clothes which Tristan wears diligently. Let’s face it. Lucas was really cool in school and he is teaching Tristan to be cool too.

I LOVE MY TRIBE. I have loved this journey. Would I ever trade Tristan for a healthier version of himself? I don’t know…Of course I would.  However, there are no trades. This is the Tristan I received and I’m kind of attached to this one. This is the Tristan I love.

 

 

 

 

 

 

 

 

 

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