'Open your heart, I am coming home'
Lyrics kind of taken out of context from Pink Floyd but hey, it works and it's playing in my brain constantly.
Going home. Home. Home. Home. In a few days, if all goes well.
Life here is lonely, isolating, pretty 'Wall'ed off.
Autism makes it lonelier.
We send home photos - amusement parks, hikes, mall rides, kids doing fun things. It's easy to give the impression that we live a charmed happy existence, free of worries, running in the fields, holding hands like people in commercials.
Those moments that we captured on photo were not lies. They don't make the complete truth either. We don't capture the ugly moments, the meltdowns, the unrelenting stress, the worries, the aggression, the fears. What purpose could that possibly serve? Keeping it real for someone maybe!
Autism takes a pretty brutal toll on all of us. Mostly my son, whose intellect and words get tied in, and he rages in frustration, unable to communicate, unable to participate in the simplest of things. He is constantly in fight or flight. The fight aint pretty. The scratches on my arms and my husband's face are evidence of that. The flight is scarier than the fight. Recently when my son is crazy upset, somehow rushing headlong into oncoming traffic seems appealing to him. Good drivers, luck and God's grace have kept him alive so far.
My daughter who has mild autism herself, struggles with social functioning, making friends (not even one friend thus far in 2 years of school) and ridiculous amounts of anxiety. My son's aggressive outbursts at me, leave her terrified and cowering. Calming her down in such scenarios is a pretty big task.
And there's me and my husband. Most of our fears are what would happen to the kids once we aren't around anymore. Most of our conversation is about therapy or meltdowns or something else related to autism. So much of our time and energy is spent combating meltdowns, calming the kids down, finding ways to help them become more independent as they grow up. Sure, all parents do this to some extent. Autism turbo charges this in a special way, draining us of every ounce of emotional and physical energy.
I am tired. I need a break. I want to go home.
Lyrics kind of taken out of context from Pink Floyd but hey, it works and it's playing in my brain constantly.
Going home. Home. Home. Home. In a few days, if all goes well.
Life here is lonely, isolating, pretty 'Wall'ed off.
Autism makes it lonelier.
We send home photos - amusement parks, hikes, mall rides, kids doing fun things. It's easy to give the impression that we live a charmed happy existence, free of worries, running in the fields, holding hands like people in commercials.
Those moments that we captured on photo were not lies. They don't make the complete truth either. We don't capture the ugly moments, the meltdowns, the unrelenting stress, the worries, the aggression, the fears. What purpose could that possibly serve? Keeping it real for someone maybe!
Autism takes a pretty brutal toll on all of us. Mostly my son, whose intellect and words get tied in, and he rages in frustration, unable to communicate, unable to participate in the simplest of things. He is constantly in fight or flight. The fight aint pretty. The scratches on my arms and my husband's face are evidence of that. The flight is scarier than the fight. Recently when my son is crazy upset, somehow rushing headlong into oncoming traffic seems appealing to him. Good drivers, luck and God's grace have kept him alive so far.
My daughter who has mild autism herself, struggles with social functioning, making friends (not even one friend thus far in 2 years of school) and ridiculous amounts of anxiety. My son's aggressive outbursts at me, leave her terrified and cowering. Calming her down in such scenarios is a pretty big task.
And there's me and my husband. Most of our fears are what would happen to the kids once we aren't around anymore. Most of our conversation is about therapy or meltdowns or something else related to autism. So much of our time and energy is spent combating meltdowns, calming the kids down, finding ways to help them become more independent as they grow up. Sure, all parents do this to some extent. Autism turbo charges this in a special way, draining us of every ounce of emotional and physical energy.
I am tired. I need a break. I want to go home.
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