Our Autism Story: Getting to OK
I wish I could say that in our autism story my current warrior mentality has always been my default. That, when after a two-day diagnosis process, even though I knew what was to come, I wasn’t secretly wishing that life would reshuffle the cards and get easier.
That I’d only been imagining the past four years of my life. Times that I hid in closets crying, because I felt like a complete failure since my son wasn’t like the other kids. Times I had to defend his behavior, because he was my son, knowing I would never condone it otherwise.
All the days I laid awake in bed deciding if I could do life today. I was at the end of myself, and I knew it. I wanted answers. I’d waited four long years, partially because I thought what others had tried to convince me of – that he’d outgrow it. I lost precious time on wishful thinking. Then, it happened.
Our Autism Story began with: “We want to confirm a diagnosis of autism spectrum disorder. [some other stuff that I really don’t recollect] You should grieve for the son you will never have. [Grieving] is natural.” That was all I heard. Luckily, they sent home a 20-page report outlining every detail of the diagnosis. All I could do in my mind was run through everything that I did during my pregnancy. There had to be blame placed somewhere. I was desperately looking to blame me, because then I could just put this, another defeat, on the records as my being at odds with the stars, or some crap like that. I was angry!
Early Years
In 2005, autism wasn’t as well known to non-medical people as it is today. There was no autism awareness day in my hood. When I mentioned autism, I would get “Oh, there’s nothing wrong with that boy”, or blank stares. As a matter of fact, Remle was diagnosed as a part of a research study that was groundbreaking in our area at that time. It had taken me two long years of daily searching in the morning before he and his sister would wake up. And then, I would search again at night after I got them to sleep. The library only had medical books that my limited education couldn’t understand, and I had to take the kids with me when I went, so the limited time I had before a meltdown also hindered my ability to research properly.
Can you say ‘LOSER’?
Speaking with my son’s pediatrician made me feel even more like a loser, because rather than their being honest about not understanding his differences, they would rather not show their limited knowledge of the subject by making me feel like the problem was me.
So, for two long years, I was on my own trying to find answers that didn’t yet exist anywhere that I could access them. Then, by the grace of God, one night while I was researching his symptoms and behaviors, I ran across an article about Temple Grandin and learned about her autism and didn’t realize how much of an impact she would have on our Autism Story.
Autism? Was that the word that I’d been searching for? I began searching everywhere on the internet that my dial up connection would let me load about autism, but the search was very limited. Through that search, I found the Vanderbilt Kennedy Center in Nashville, TN. This is when the train started that would later shatter my life for the better, even though at the time, I didn’t know or understand this.
My past guided my emotions
You see, up until that point, I’d known disappointment very well. Why would this be any different? For the first four years of Remle’s life, I’d all but barricaded my family in the house due to the stares we would get. I was frustrated that my life just couldn’t be normal. In my mind, I was a failure as a mom.
My son’s behaviors in the home had gotten much better over time, so I convinced myself that other people had lost their minds. It was a form of denial, but I also believe it was inconvenience that led them to label me a bad parent rather than helping me. I would spend all day the day before trying to prepare him for any outing I knew we would take. I lost a lot of friends in those early years, because he couldn’t handle the change of schedule, or, in his case, leaving the house. So, we spent most of our days in diapers. It was easier that way.
The Diagnosis
So, the day of diagnosis, when I was told to grieve for the son I would never have, I felt like we were a charity case, and that my son was a lost cause. That all control was totally gone. Or, at least that’s what I felt they had said. I was not happy with that. I was not accepting that. The son that I’d prayed for was not going to be a lost cause. I would love him as he is, and not as I wanted him to be. So, I decided that I was not going to grieve. I was going to love him the same way I had been since he was born. The diagnosis did not matter, but knowing how I could help him made the difference. That one decision changed my mindset, as well as my entire life. I cannot express how the change happened, or how I was able to make warrior mama my default, other than I was not giving up on my son. He was mine and I was his, flaws and all.
The beginning of self empowerment
I was able to create a new picture using what I knew and had learned. I busted the door open, and threw open the curtains, and let the light in on the cave we’d grown comfortable with. There was a whole new world that needed to be educated, and my son needed to understand how to cope with what was out there, as did I. So, we braved that new world with autism, and we made our peace with one another. We didn’t go looking for cures, or new techniques that would change who he was because he was who he was. We took each day and made it work.
Uh…life became perfect….NOT!
Now, let’s be real, it wasn’t always beautiful. Some days we both got cut up from the wreckage and heartbreak. Especially when I thought we’d figured something out, and then realized we’d only actually uncovered the tip of the iceberg. I was going in circles, because I was in constant fight mode. I had to fight this person for this service, or for that educational goal. I walked into meetings in full armor and eye black, ready to demolish my opponents. And you know what? Remle was still losing, no matter how hard I fought. So, again, my perspective shifted.
I decided to go back to school to learn how to think critically. With the encouragement of some amazing mentors, over a ten year period, I had the honor of walking across four stages… my last stage being with a doctoral degree after having completed The REMLE Project research study. During those ten years, I was able to use my knowledge and skills with technology to help my son. We were learning together. We grew up together. I learned to see the world through his eyes, and a higher level of compassion than I had before emerged. I became a better person because of autism.
Through the Spectrum
In his sixth grade year, Remle had to be reevaluated, and he shredded his first diagnosis of Autistic Disorder with a new one: Asperger’s Syndrome. He moonwalked across the spectrum thanks to some wonderful professionals, educators, and of course, a fully militarized, ride-or-die mama. I embrace that role, because I had to be that for my son, and I encourage families everywhere to be that for their kids, too, though not with guns blazing. Rather, with the mindset that you’re willing to do anything to get done what needs to get done.
The war is what we want to win. Knowing how to handle the little battles we face is what brings about success. Those battles aren’t only with schools, and doctors. They’re in our homes, within our marriages, and our relationships with others. Even with the ones who we are at war for! That’s where our focus should be. We shouldn’t be overly stressed about things we can not be stressed over, given the resources.
Key things I’ve learned
I’ve learned through my professional and personal life that striving for simplicity where life can be simple should be the directive. This is why tech integration is near to my heart. It’s where I’m both passionate and able. Helping families automate daily life, so they can focus on what’s important to them, especially in an already stressful situation such as autism, can be a game changer. It took me years to find my voice, and to understand that Remle would one day need to learn how to use his.
Today, his voice is loud and clear, and that’s thanks to tech integration with evidence-based practices. This isn’t a commercial, or a gimmick…it’s how I’ve loved Remle, and how I get to love YOU. Yes, you! You are a part of my story too, and I hope to one day be a part of yours. You see, by taking what I know, and sharing it with you, I get to fulfill the purpose of The REMLE Project. The reason my son has changed my life – so that I can help you change yours. Let the journey continue, and hope that it will never end.
Have you found your “OK”? Share your story with us! I would love to hear about how you got to OK.
