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'Transitions' by a 22q Mom

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Guest post by Emily Dolton
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Man, I've been struggling with this concept of awareness. This is due mostly to a few highly effective friends who have been explaining about their heart defects first hand, or chronicling their journeys as parents daily. Today, Aidan, in his incredible way, hit upon what I need to talk about just by being him. Two days ago I was bragging about how I had all these baby seedlings that I relocated to other parts of our garden to fill things out. Today (and for the next three days) temperatures will hit above 90 with a hot breeze slamming us and making it feel like 100. Those baby seedlings, so content to be where they were prior, are now struggling in their new spots. Aidan stripped down and started watering this morning, telling me he was going to "save" the plants. And RIGHT HE WAS.

The biggest struggle in our house is behavioral issues. Aidan does not transition well from desired tasks and we weigh every change with "Just how necessary is this?" School is a necessary evil. School requires pants. It's that simple, but it isn't simple at all. Naked is cooler, less bother, and feels good. Pants bind, are hot, and are only necessary out of social convention.

Aidan would be the perfect caveman. He treats everything like a threat, scavenges for food only when he's hungry and prefers to be nude. He will sometimes answer in bird, decide to eat dinner like a puppy, or cling to you like a tiny marsupial. Much of what he feels is primal, and he would prefer to play and lay about all day rather than do any of those tasks designed by modern man.

We teach our kids how to move out of caveman stage to modern human and we focus on problem solving and critical thinking more and more every year. Recent brain scans of Aidan's brain showed that when asked questions of his critical thinking centers, his anxiety centers light up with activity, suggested we are pushing him beyond his limits quite often.

As a result, every transition is a challenge. We have risen to this challenge with intricate reward systems, countdowns, transitional reminders, visual schedules and occasionally, when our anxiety centers are flaring and our critical thinking centers are maxed out, threats and anger. "Why can't you just put your coat on and get in the car?" cries his older brother. I wish I could answer this question, especially when It was he who asked to leave.

In short, Aidan is much like a baby seedling. He has to be moved at the right moment and well watered and cared for until the transition is complete.It is hard. It is exhausting. It sometimes feels like it is not worth the effort.

And then there is the day where he steals the show at the school musical, or he crawls up in your lap takes your face in his hands and tells you you are the best parent in the whole world even when you can't believe it yourself. These are the moments you hold in your heart when you are dragging him kicking and screaming from Target, the white hot stares of other parents clicking their tongues in disapproval. These are the moments you hold on to when he lies completely still while sounds screech around him in the MRI tube and you feel you might go mad from the noise.

This is the awareness I choose to portray today.

 

#22qAwarenessDays  #22qGoogleIt #22qHero

Emily Dolton is the mom of two boys, one of whom has
22q 11.2 Deletion. She is a San Diego muralist and business
owner, board and committee member for many non-profits that help
children with special needs and a project lead with Cecily's
Closet. Emily is married to Andrew Gilbert, Senior Occupational
Therapist at San Diego Unified School District.

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