Our Life With Autism

I’ve never written about Autism and its presence in our home because my son hasn’t been open to it. Since we’ve started our fundraising campaign to get him a service dog, Noah has opened up. He’s willing to put himself out there to get this animal. Our whole family is, which is more significant than you’d think.

Despite what I write about, I am extremely private. There are many aspects of my life (most) I choose not to share in a public manner. This does not affect my honesty. I am unrelentingly transparent when it comes to issues of survivorship in any capacity. But I don’t put my children on display. I give them choices about whether and how they are presented in my writing. Noah has chosen to remain unnamed and invisible. Until now.

Noah at age 3. He was my baking buddy.

Noah at age 3. He was my baking buddy.

Noah at age 9 with his Johnny Cash hair cut.

Noah at age 9 (current) with his Johnny Cash hair cut.

He reads over my shoulder when I write about him, occasionally vetoing but mostly watching my understanding of him take shape on the page. This is freeing for me. I think we have had repeat miscommunication over the years because his feelings are so intense he doesn’t believe I could grasp them. But now he sees me spell them out. Not just the feelings but the causes and my feelings and dedication and love for him. This is a great affirmation for him and reminder for me. We will get through this.

I don’t expect you to all run over and follow our GoFundMe campaign. I do want you to know there are regular updates happening there that you are welcome to read. They look inside what ASD and anxiety are like for Noah. He is struggling, but he is open in hopes that sharing may help someone else or that someone else may help him get the dog he needs.

I hope you’ll make it over there. In case that’s not your thing, here’s the latest GoFundMe update where I talk about Noah’s process of anxiety and our achievable dream.

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While Noah is sweet, concerned and empathetic, he often gets stuck in negative thought patterns. This stems from a constant low level anxiety that peaks with misunderstanding, most often in social contexts. Say he is playing a typical fighting game with imaginary swords. He and his friends are having a great time. His energy is up. His activity is up. His emotions are up.

Now imagine something unexpected happens. The fighting game is no contact and someone accidentally connects.

This is jarring for anyone. In that situation, I might take a step back to assess, but would most likely end up laughing and apologizing. Noah might do that, too. But he might also get frightened and feel there is a threat. That’s the hard part, because that low level anxiety spikes to high, and then we aren’t talking about “hey, it was an accident” anymore. The new conversation is “you are safe” and “no one wants to hurt you.”

This happened recently with a friend at school. Noah was afraid, but he made a choice in the moment to stuff that fear inside and carry on. He kept a tight lid on it until I’d packed him in the car, taken him to therapy (where he did talk about it with his therapist), and gotten him almost all the way home. But he was hungry and tired, and he couldn’t hold it in anymore. That lid popped off. The next three hours were composed of the cartwheeling aftermath of Noah not understanding play with a friend during which I repeatedly failed to get Noah to eat, drink or calm down. I ended up outside with his brother and sister while he vented inside. Eventually, he ate and was calm if not happy.

These periods of energetic anxiety are coupled with self-loathing and sadness that combine and escalate into paranoia. Noah will articulate his hate of himself repeatedly and threaten self-harm. I can’t tell you what it feels like as a mother to hear this from my child. He believes he is a failure. He hates what he is experiencing, and because he experiences it, he hates himself.

The next step in his emotional process is forecasting harm from external sources. There is no precedent. We don’t spank because we believe it is violence used to bend another’s will rather than educate and instill respect for boundaries. It rips me up when, as happened yesterday, I try to approach Noah for a hug and he starts shrieking and shifts into a defensive posture because he thinks I (or anyone else approaching) am going to hurt him. He expects me to want to. He believes he deserves to be hurt.

When he’s inside the anxiety, I can see him clawing to get out but I can’t reach him. His physical outbursts prevent any type of meaningful reassurance. The best I can do is shout to him sometimes. Most often, I end up sitting by silently or removing his siblings for safety. They see he is in pain and try to comfort him. Their witnessing feeds his shame and grows his anxiety. It’s vicious. It’s horrible.

What’s worse is that every other stranger thinks they have the solution. This leads to unwanted, unsolicited advice and implicit or explicit judgment with Noah present. I pointed to this in the campaign description. He hears it. He sees it. He receives the judgment of the self-righteous citizens who are certain he is destined for some negative fate if we don’t “beat his ass.” One man cornered him on a playground to “discipline” him by shouting at him. He waited to do this until I was busy with another child because “you weren’t taking care of it.” One woman called him a brat in a parking lot and told him he should be ashamed of himself.

Guess what? He already is. He is a small body vibrating painfully with the ridicule that comes from expectation. People love judging a book by its cover.

The point here. Let me find it. I feel like giving up a lot. Just like Noah. The world can be a cruel, cruel place. But when I see donations come in (doesn’t matter the size), I remember that there are people out there who are willing to put curiosity before judgment. Your support is a bolster. The 24 hours like we’ve had? We’ve needed that bolster.

It’s what keeps us committed to this dream of a dog who can interrupt those moments of terror and communicate “You are safe. I’m with you.”

16 Discussion to this post

  1. Elissaveta says:

    Your sun looks adorable, especially in his Johnny Cash haircut!

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  2. stuckinscared says:

    I found myself nodding (and tearing up) through this… you could be describing my daughters emotions/anxieties/reactions. You’v done incredibly well with this piece, it’s sensitively done…a great awareness piece.
    Your Noah is lucky to have you for his Mummy 🙂 I wish you lots of luck with the campaign, I hope Noah gets his dog.

    All the best to you and yours, Kimmie x

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  3. stuckinscared says:

    Bless you… you’re welcome 🙂

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  4. Jen Patterson says:

    I wasn’t going to comment, but I am sitting here in tears too.

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  5. choff777 says:

    Thank you for sharing your Noah with the world. He is blessed to have you as his mother, champion and communicator. Life is hard, your opening up gives others permission to share their struggle. I really hope Noah gets his dog, and will keep sharing his story. And yours.

    X Jackie

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  6. […] Fiction Competition. This contest falls under the Four Paws for Noah banner and is a fundraiser for the service dog my son needs. I hope you’ll enter! You have until Jan. 31st to flash us. You didn’t expect to read it […]

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  7. Norah says:

    Thank you for sharing, and introducing us to Noah. Getting past the thoughtless judgment of others much be difficult indeed. I read a few different blogs by parents of children with autism. Each one’s experience is different, but the more we are told, the greater the understanding we can develop. I very much appreciate your open honesty. Thanks also to Noah for allowing you to share.

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  8. Thank you, Norah. It is always difficult to know what to share in these situations.

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  9. […] Submissions fees prevent our family from sinking under training and animal care costs coupled with Autism-related medical needs. Shareen (along with Charli Mills and Karrie Higgins) saying yes meant someone […]

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  10. […] “He reads over my shoulder when I write about him, occasionally vetoing but mostly watching my understanding of him take shape on the page. This is freeing for me. I think we have had repeat miscommunication over the years because his feelings are so intense he doesn’t believe I could grasp them. But now he sees me spell them out. Not just the feelings but the causes and my feelings and dedication and love for him. This is a great affirmation for him and reminder for me. We will get through this.” Our Life With Autism – The Honeyed Quill […]

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  11. Silly Mummy says:

    Lovely to learn a bit about Noah (& I love his Johnny Cash hair cut). I hope that awareness of things like ASD will keep increasing, so that others will be more likely to understand that sometimes there is more behind someone’s behaviour than you may be able to see, and respond appropriately. At the moment there is too much of an assumption that there is a ‘correct’ standard of behaviour and all children should be able to meet it and, if they don’t, they are ‘naughty’ or the parents are at fault. The fact is that not all children are the same, and not all children are able to respond to situations or behave in the same way as some other children might. That should not be a bad thing: it’s just a thing, the way it is.

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    • Shawna Ainslie says:

      I love this comment so much. It is incredibly stressful to parent in a public that doesn’t understand. I agree. Not a bad thing. Just a thing. <3

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  12. Reading this, the tears started flowing. I’ve watched a lovely couple we know, who have three sons, one of whom is autistic, struggle with this for more than thirty years. My heart reaches out to you with love and compassion. Your son is very fortunate that you are his mom.

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    • Shawna Ainslie says:

      Michelle, This comment means quite a lot to me. I’m so glad you took the time to share. I love my son and I’m happy to be his mom. There have been dark days, but he’s an amazing kiddo who just filled up my heart by having a conversation about the differences between fantasy, scifi and horror. <3

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