If you’ve known me for any length of time, you know that my kids are my world. They’re everything to me. When I was asked as a child what I wanted to be when I grew up, I said, “A mom.” Like most things in the world, those idealized plans we have as children aren’t as simple or as care-free as we think.
It started with the miscarriages, I miscarried over and over. At some points, I was on birth control just because we couldn’t handle the stress of it as a couple.
So, when I finally got pregnant and stayed pregnant, it seemed like the tough times were over…and then I threw up every day of the pregnancy and started having contractions at 28 weeks. With bedrest, I made it to 37 weeks and then…then it would be easy and like what you read in the books. B was born with an air pocket in her lung and a collapsed lung. They were able to resolve it in the NICU in a few days, and we took her home.
But, then, it was going to be easy, right? I’d be able to find my answers in all those books I had. I’d be that mom I wanted to be when I was a kid.
B had so many weird little allergic type reactions and she was sick–all the time–she was sick over two dozen times in the first two years of her life. But then she started talking when I was pregnant with T, and it felt like I was finally fitting on the pages of my parenting books…and then she stopped talking and the words just disappeared. They slipped away and other milestones followed.
I was given a baby scrapbook at one of my baby showers, and I didn’t know what to do with it. One of her sicknesses reverted her back to crawling again. Her first words were gone. She seemed not to care who I was or if I was in the room. She never pointed–she would just shove our hands at what she wanted. There was never any eye contact. She wouldn’t react when we called her name. One of the scariest things was that her response to pain was nonexistent at times.
We were living outside the parenting books…reading them just made me cry.
A month after T was born, I convinced my husband we should see the doctor about her hearing–but it was more than that–I knew it was more than that.
On March 8th of 2003, the doctor told us he thought she had regressive Autism. It changed everything. It hurt, and it helped. Nothing was the same, but everything made sense. It felt like the start of a different life…and it was.
Later, my son was diagnosed with Asperger’s and both kids got secondary diagnoses of Sensory Integration Dysfunction.
Thanks to therapists, doctors, diets, teachers, interventions, family–and a whole lot of work from us and from the kids, my kids are both extremely high-functioning and mainstreamed in school. Most people will never know they were once diagnosed with things that ripped our hearts out.
B loves math and likes to Skype with friends about Minecraft. She’s sweet, beautiful, and laughs at corny jokes. She has a friend who refers to B as “her best friend.”
T has been reading at a 12th grade reading level since 3rd grade–likes to know everything about everything, and he, too, is obsessed with Minecraft. He’s charming and treats our furniture like a jungle gym. He is the most literal child you’ll ever meet and half of his sentences are the word “Dude.”
Ultimately, our story is a story of hope. After the crying and the loss and the confusion, we got up and got to work. My parenting experience has never been in the standard books. We celebrated when B relearned words and could put her feet in sand. We celebrated when T stopped wearing earphones and gloves.
I’m not at all the mom I thought I’d be as a kid. I’m the mom who learned home therapy and married the dad who built a therapy room for his kids. I’m the mom who cooked gluten-free and dairy-free for four years. My husband is the dad who once stayed in a job he didn’t always like because the medical benefits for therapy were good. I’m the mom who jumped at the chance to write something for a book about being a mom to kids on the spectrum. I’m the mom who bawled while reading through journals and through every revision.
When I heard that my story “When Ladybugs Roar” had been chosen as a finalist–I felt everything I’d always wanted to feel as both a writer and a mom. I’ve never been so proud of being a writer and a mom. So, I’m that mom…and my story is found in the section of the book under the category of “Hope and Expectations.”
Tags: Aspergers, Autism, Chicken Soup for the Soul, Hope, Parenting
This is a great post. I relate in so many ways. We struggled with infertility and pregnancy complications, and my son has ADHD and a sensory processing disorder, not autism, but there are many overlaps with high-functioning autism. I know what you mean about living “outside the parenting books.” I’m so glad your kids have made so much progress. Like your kids, my guy is doing well in school and is making progress on managing his behavior at home. (And is also addicted to Minecraft!) Congrats on your story being selected!
You know, Aspergers and ADHD with a sensory processing disorder thrown in probably look very similar because T gets hyper and manic–we keep it in check by giving him caffeine–which I picked up from an ADHD website as a common trick for them. He totally chills out with a stimulant like caffeine (and probably would with Ritalin too.)
Thanks! I got the email notifying me I’d been selected while out to lunch with my husband. I actually squealed and jumped around. I’ve never been that purely excited about a publishing experience. And it felt like there wasn’t a single downside in the end.
Thanks for sharing your story. My oldest is moderate on the spectrum and every day is a surprise.
Bless your heart, that does sound like a very long row to hoe, as my dad would say. I know we flounder around a lot with “just” A-Boy.
Thanks much for sharing this
What a beautiful post. I have three on the spectrum, from severe to barely impacted. My oldest is studying animation in college, and aside from a few exacerbations of auditory sensitivity, she’s doing great. My youngest boy will start chef school next year, and my oldest is trying out a residential program until we can get on top of his outbursts. I love them so. 🙂