jeanleesworld

Finding One’s Footing, Part 1: The #Autism Mix. #WritingLife

Welcome, my fellow creatives! After well over a year of nothing but first-chapter book podcasts, it’s time I sit down with you and share what in Cripes Almighty has been going on. This will take a few posts, but hopefully you won’t mind. One doesn’t find one’s footing on the first try, after all.

Let’s walk back to a month after my last blog post.

~*~ Spring 2023 ~*~

Two days, six hours each. Two hours in the car each way.

Assessment. 

“Mom, am I stupid?”

“Mom, am I weird?”

“What’s Autistic mean?”

Photo by Polina Kovaleva on Pexels.com

Much of Life this past year has involved learning what it means to “be” Autistic. Both Biff and Bash had their turns with an assessor out in the middle of a small rural town lost among the patches of corn and woodland. Despite living near the state capital, none of those urban offices were taking new patients, considering young patients, not taking boys, not not NOT. I waited a year for that lonely, rural doctor to be available, and in early March 2023 we finally met. Hours of conversing with me, hours of conversing with the boys. And hundreds of days later, we are still processing what that assessment of “Autism Spectrum Disorder” means. In a way, it answers much when it comes to their behaviors, their fixations, their “stuckness” and reactions to certain stimuli. But it’s still tough to figure out as an adult how to help them adapt when life changes on the fly, how to respectfully question authority, how to take care of themselves. The lessons we absorbed and applied as kids…Biff and Bash just don’t do that the same way.

We’ve retooled their educational lives by moving them to new schools and trying to see what resources we can utilize to help them thrive. Before the assessment, “struggle” would have been the understatement of the year. We were dealing with teachers who didn’t believe either boy needed any extra help. Teachers were ready to simply write them off for having behavioral issues. While Bash, thankfully, has a good support system at his new school and learns how Autism impacts his behavior and coping skills, Biff’s school continues to push back because, well, Biff is extremely smart. But book-smarts and people-smarts are two very different things, and Biff does NOT understand people at all, which leads to conflicts with peers and teachers alike.

~*~

You and I have sat through this story of mine before: nothing drains the creativity from a soul like a phone call from a child’s teacher or principal. Yet even in light of their assessment, in light of victories and failures and draws upon the battlefield, there has been another weight on me, growing slowly heavier week by week.  The “grade teach parent attempt to sleep” life just…lacks its magic.

That isn’t to say parenting has no rewards, or that teaching is not worth the time. These are souls I give to and will continue to give to as long as God gives me breath. But you and I know, my friends, just how important creativity is in bringing light where life is dark. That’s how this site started in the first place: storytelling helped me pull through very dark spells of post-partum depression. Now here I am, back in that grip, telling myself there will be time when the kids are older.

Blondie, Bash, and Biff out for an explore in early 2022. It’s harder to capture this kind of photo these days.

But what do I mean when I say, “a little older”? High school will have its own slew of obligations. Do I mean college? This doesn’t even include the matter of helping Autistic sons transition into adulthood, let alone my daughter. Can my soul afford to wait that long?

And as I thought of shelving my stories for nearly ten years, I cried. Hard. A year had already passed since I wrote short fiction, four years since I worked on a novel. To wait another ten…no. It cannot be.

It MUST not be.

The hollows of me have gone dark–the fireflies have flown out into the twilight, and I cannot find them again. I know they linger in the woods just outside my door, but you know what else lingers outside my door? Mosquitos. Bats. Coyotes. Creatures of dark and danger. Creatures that make one scared to go out, scared to go looking for the important things.

That’s how it feels now, the idea of writing again. I know where I must go looking for the story, but there is so much that can go wrong with the story. Surely if I don’t start, I can’t fail. If I stay where I am, nothing will get worse.

But you and I, my fellow creatives, we know that only brings the promise of hurt, not healing. One’s body will not improve without exercise. One’s mind will not improve without reading. One’s soul will not improve without light.

What form that light takes is up to you.

For me, it is the story.

Let us see if we can find our footing, together. Perhaps a little music will help along the way from an artist I’m keen to discuss with you soon…

Read on, share on, and write on, my friends!

36 comments

  2. Wrapping you in hugs Jean. Our daughter’s partner has two autistic sons. The 12-year-old has been formally diagnosed. The 6-year-old is on a waiting list for an assessment. We’re on a learning curve too.

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    • There’s so much to take in, my friend, there really is. And it’s hard when those you care about don’t see eye to eye about Autism. Kids don’t “grow out of it,” and helping them adapt to life challenges isn’t “coddling” them. Ugh.
      Bash still talks about you, by the way. 🙂 Thank you for sticking with me through all these ups and downs, my friend!

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      • Give all your kids a big hugs from me, but especially Bash. In honour of his good memory. I have wonderful memories too of all of you. Stuck like glue, in case you were wondering. ‘Grow out of it’? hahahaha

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      • I know! I don’t like how the word “ignorant” is thrown around by people, but it feels fitting in this situation.
        And I shall give them big hugs from you. I was actually working on a small nonfiction piece about my father last month, and you came to mind again and again. I plan on sharing it here soon! xxxxxxxx

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  3. My now young adult child wasn’t diagnosed until age 17. They’re almost 20 now. It’s been difficult to learn and adjust, even with already having a diagnosis of ADHD and Anxiety. The transition from high school student to a young adult out in the world has been extremely rough!

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    • Thank you so much for sharing, Trudy. It’s bizarre to see that even with a diagnosis, folks act like because my twins “look normal,” then any internal, invisible differences are irrelevant in the midst of school or daily life. It is extremely frustrating. Hang in there! xxxxx

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  5. Sending so many hugs my friend. The diagnosis process takes it out of everyone, including the parent. I felt like a passenger, still do. But what I do know is that you have to find ways to recharge and find life. If you don’t it will drain you. You need writing. If you have a wonderful gift, it needs to be let to soar. Hang in there, if you ever need to talk, talk. Talk with anyone you trust, anyone who gets it. Stops you going crazy on this journey. There will be people there to share the load and listen. I think you have my email if you ever need anything, not that this muppet has been a bastion of good practice. One last thing,it’s hard, the system seems like it’s often against you, but on the days you get a result, progress, it’s more than worth all the pain xxxxx

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    • Yes yes yes, thank you! That’s been one of the strangest parts of all this: that Bash IS getting support, but that’s only because his negative behaviors can be more extreme. Since Biff is more mellow and reads a lot, he’s *obviously* fine. I’m trying to keep myself calm by calling this coming school year the Evidence Year: I will document all his struggles so that the teachers and assessors alike HAVE to see what we see.
      So thank you so much, my friend. You’ve been on this battlefront for a long time, so I know you understand this. We’ve got to keep fighting together! xxxxxx

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  9. My heart goes out to all of you… And I have some idea of what you’re all going through because my best friend’s son was diagnosed with autism when he was just over 2 years old, when I was looking after him for 2 days a week. I became part of his teaching team when he was 13 and unable to cope in mainstream education. He is a fine young man – though the pandemic and lockdown in particular has done a real number on his mental health.

    Sending loads of love and support your way. And yes… I can also relate to your finding that your creativity seems to have evaporated right now – and the sense of terrible loss that you feel. It was over a year before I was able to write anything creative at all – and then it was a mere trickle. When I asked the Dr if I would ever get better, he looked me in the eye and told he that he simply didn’t know. These days, of course, they know a lot more. But I was stunned and scared – and then decided that I would get better, because I had books to write. My main message is – be kind to yourself. You aren’t a machine and you have so much going on. And just know in your soul that you still have stories to tell – they’re on furlough right now. But I don’t believe you have to wait another ten years before you are able to set those stories free. Hugsxxxxxx

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    • Heavens, no wonder you felt scared! With all the uncertainty in the air, all one can feel is doom. Yet you kept fighting, bit by bit, because you knew you had to. And I’m so happy to see and hear from you and know you’re doing your best to be well!
      I absolutely needed to hear this. I am ready, ready to go for it again, but you’re right that I must forgive myself when other pieces of life must take priority. Hugs from Wisconsin across the Pond to you, my Friend! xxxxxxx

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  10. I know very little about this topic But I’m reading and I’m listening And I am praying for you and your family. I do know about a weight on your shoulders that sucks the creativity away- surprisingly quickly and for a long time.

    You are not alone

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  14. […] After veering off into some sources of inspiration these past few weeks, I wanted to return to…well, returning. Earlier, I spoke about the struggles of balancing teaching and writing, of maintaining realistic expectations as far as a creative career goes for me (and my daughter), and embarking on the latest chapter of my twins’ growth since they’ve been diagnosed with Autism Spectrum. […]

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  16. […] Life with Autism has altered the lens for Biff and Bash. Biff is still our intense learner, our student of all things mechanical and intergalactic. He still buries himself in soft, colorful stuffed animals, each one a beloved, dear friend. But he’s also discovering that scary things can also be fun–that there’s a thrill to the jumpscare, there’s a delight in surprise. He spends hours drawing haunted places, yearning to build his own. […]

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