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Website of author and professional editor Rachelle M. N. Shaw. Find information about her books, her editing services, and her blog, From Mind to Paper: On Writing and Editing.

From Mind to Paper: On Writing and Editing

From Mind to Paper is a blog for writers, editors, and those interested in the English language. It covers a multitude of writing topics, from punctuation and grammar to plot development, character development, and world building. In addition to in-depth articles about various writing topics, this blog also has a number of series posts, which are currently being transformed into a nonfiction series on writing.

To the Mothers of Autistic Children

Rachelle M. N. Shaw

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Autism. With just one word, your life can be forever changed.

Today, I'm taking a break from my usual posts on writing to recognize Mother's Day. For each and every mother out there, whether you're a mother-to-be, a foster mother, a mother who adopted, or you gave birth to your own children, you deserve recognition. You are amazing women that have been through the ups and downs of parenthood, and you've experienced the joys that come with it. Each milestone makes you feel like the proudest mom in the world, and you light up inside at the first little coos, giggles, and words your mini me utters. The little pitter-patters of tiny feet racing down the hallway will likely forever remain engraved in your memory.

Parenting is no easy task, no matter what challenges your child faces. But today, I'd like to reach out to a group who hits very close to home for me. To the mothers of autistic children, I want to celebrate with you today and let you know you're not alone in this walk, no matter what stage you're at. I know you share the same sense of pride, adoration, hopes, and dreams for your little ones as everyone else does. I know, because I am one of you.

This journey is still very new to me, so to those of you who have been on this road for many years, please forgive me for the blunders I might make (and probably already have made) in writing this post. I suspect my story is nothing unique to you, nor do I expect it to be treated as such. I feel blessed to have even experienced motherhood, as I know not everyone gets to.

I was only twenty-three when I got married, but I was ready. I'd been with my husband for over six years at that point, we'd both recently graduated from college, and he'd just been offered a full-time position in another state. So we took a leap of faith and tied the knot, then moved across the country. Soon I found work too, gave birth to a beautiful baby girl at twenty-five, and almost exactly three years later, had a handsome baby boy. Both pregnancies were healthy with very few complications. They were both low risk, and I never had to endure the pain or heartache that miscarriage brings. I had done everything by the book, taken all the vitamins I was supposed to, gained just the right amount of weight, eaten healthy, and even breastfed my kids for several months.

But it wasn’t long before I noticed my son was different. I chalked it up to him being a boy, to him being more active than my daughter. But after two years of major sleeping issues, feeding issues (including him refusing to eat meat), and a nagging sensation of something being off, the possibility crept into my mind. What if this wasn’t something he would just “outgrow” as so many doctors had told me? What if there was something more to the fact that he wouldn’t always respond to his name, that he had trouble being calmed, and that he’d often throw his head back hard against the ground when he was upset?

I knew the road we were venturing down wouldn't be an easy one. Though we’d been fortunate to have fantastic doctors, my gut told me something still wasn’t right. For months, I had begged for them to do a sleep study on my son. At that point, he was waking seven or more times a night, he couldn’t breathe well, and all areas of our lives had become challenging. Finally, they agreed and ordered the test. Within a couple of days, we had the results. It was clear he had obstructive sleep apnea and needed surgery. My heart sank. I had been right. His sleeping wasn’t normal. So at just two years old, he underwent a surgery that was supposed to fix everything.

In the coming weeks, he did improve. He ate more than he had been, though he still wouldn’t eat meat. And he slept better at night on occasion…but there were still wakings. For the second time in his life, we underwent sleep training. After a few months, it was clear nothing was working. Before long, everything came back full force, including new behaviors we hadn’t seen before. While the surgery had corrected his apnea, the other problems continued. I had so many unanswered questions that went unaccounted for, and I had reached a point where I wasn’t sure what to do. Had I done something wrong? Was there something they had missed in his tests? When his speech slowed to a crawl, that’s when the thought really hit me. All the words were there, but he wasn’t using them. While other kids around his age continued to progress in their speech, he stayed behind. Even a few of his mannerisms weren’t where they should have been.

At that point, we sought out therapy. I had reached my breaking point. And after a whirlwind of doctor visits, therapists coming in and out of the house, and many, many prayers, we got our answer. We got a phone call from a highly sought after pediatric neurologist in the area, informing us that they’d had a cancellation for later that week. I vowed that no matter what it took to get there, I would do so. The day of his appointment, we received an official diagnosis of that dreaded “a” word. But it wasn’t a burden. It felt like a weight had been lifted. For us, it was the missing piece of the puzzle, the thing that helped us understand why our son had some of the issues he did and why he wasn’t progressing. It was the stepping stone that allowed us to move forward and get him the help he needed.

It’s only been a few months since we started down this path, though his diagnosis had been years in the making. We’re still very much in the crazy days of chaos, therapy visits, follow-up appointments, and even getting special plans in place for when he attends preschool in the fall. But getting that diagnosis meant everything. It meant that I had given my very best, that I had stuck with my son and fought for him during some of the hardest times of his life when he couldn’t tell us what he needed, even though I often felt completely helpless and had no clue where to start.

Having a diagnosis opened so many doors for us, but we still have a long way to go. As so many mothers of autistic children will tell you, every day is different, and every child is different. Autism comes in so many shapes and forms, and some are easier to see than others.

So to all the mothers of autistic children, thank you. You have taught me so much about what it means to be a mother. You are rock stars who have patience beyond measure. You endure stares from strangers when your child has a meltdown in the middle of the park and judgement from other mothers at the grocery store that you should never have to face. You take all the challenges life throws at you in stride, because you know that every minute with your child is something to cherish. You know that some days are better than others, that there are times when it feels like no progress is being made. But you stick with it, day after day, night after restless night, because you know there is no better gift you can give to your child than simply being there for them every step of the way. And for that, you are the most amazing mothers any child could ever ask for.