This Is My Autism: Carrying It All

Cathy Jameson is one of my favorite writers and one of my favorite autism moms – she’s been featured on this site many times (here, here, and here). Over the years, her writing has brought me hope, strength, comfort, support, and encouragement. I am thrilled that she has written something again for me for Autism Awareness Month, sharing this story from years ago for this month’s This Is My Autism series. What this piece highlights to me more than anything is the resilience of autism parents, and how their unbreakable spirits and hope for their children really make all the difference. No matter what else we autism parents are carrying (and it is a lot), we will always carry our children when they need us. Ronan is lucky to have such an amazing mom, and once again Cathy has inspired me.

I’d do anything to give my son’s autism diagnosis back. His autism isn’t the kind that the nightly news likes to talk about. In fact, not many mainstream news sources care to talk about the deficits, the struggles, or the strains he deals with because of autism. Focusing only on stories that highlight the positives of autism, and I use that term positive loosely, Ronan’s story will never go viral. If it ever was told like those feel-good stories are, I don’t know if people would be able to handle it.

Ronan has seizures. He can’t talk. On top of all that, he a laundry list of medical issues that interfere with his development and weigh him down. He’s got more going against him than for him. I’m thankful that others recognize the form of autism reality that my son lives and wish to share it, including here on Holistically Whole. Joanna doesn’t mince words. I don’t either. Autism is hard. It can be painful – both physically and emotionally. While it can be manageable, there’s no guarantee it’ll stay that way. One day could be perfect with the next day a complete disaster. I root for the good days, but we’ve had our fair share of disasters,

like this day from a few years ago:

One of the hardest days we had was at the end of a neighborhood holiday party last fall. Ronan decided he was not going to get in the car to return home when it was time to leave. Seeing as we get in and out of the car several times a day and several days a week, Ronan had numerous opportunities to test his new behavior of “let’s not getting into the car when Mommy wants me to.” For this particular outing, I’d brought a friend to help me tote all of the kids to a neighbor’s house. I was grateful she’d come with us. In the beginning, everyone did really well. When it was time to wrap things up, I ushered my typical kids to the car with their goodie bags. The host and hostess, an older couple, walked Ronan and me to the car and then watched me attempt to get Ronan in it. I was mortified that not only was Ronan purposefully doing everything opposite of what I was asking him, but I had a growing audience of “What in the hell is going on?” bystanders.

Cathy, do you need something?

Is he okay?

Can I help you?

Gosh, are you alright??

As much as I wanted to scream, “No, No, No, and NO!” I kept a poker face and mumbled to Ronan, “This isn’t safe, and you’re embarrassing me. Get in the car, now!” He refused. His grip on the car door molding tightened. Ronan’s legs locked and there was no bending them. At that point, my muscles started to ache. Then, they started to burn. Ronan began to curl his legs around mine and made his grip tighter. He was hanging on the car for support with his upper body and half pulling me down to the floor mats with his lower limbs. I was pinned in a very odd and painful position. Since he’d never done this much resisting before, I had to come up with a solution to this bizarre situation before we both got hurt. Fearing I would fall, and knowing that the older couple continued to watch my hell unfold, I told myself to not cry (yet). Just then, sweat began to bead on my forehead. I just wanted to get us home safely. My friend was already in the car in the passenger seat so I whispered to her, “Get the keys. Take the others home. I’ll meet you there. Please, and now!”

With lightning speed, I manipulated Ronan’s arms and legs off of the car and off of me. Getting him to the ground in a standing position, I grabbed his hand. He was stunned. I was mortified. “Go, just go,” I said to my friend as I waved her out the driveway. I started walking away from the bewildered couple who now stood speechless and frozen in their spots. They’ve known us prior to Ronan’s vaccine injury problems but they hadn’t seen us in a while. Ronan clearly was not the quiet, aloof little kid they remembered. Wondering if we’d ever be invited to another shindig, I turned and thanked them again for the treats they gave to my kids. With the fakest smile I could make before the tears exploded through my eyeballs I said, “You know what? I think we’re just going to walk home. Thanks for the treats. We’ll catch up again soon.” Then, I quickly turned around and lead Ronan down their gravel driveway.

The gentleman offered, “But Cathy, you live so far away. I could put you two in the back of the truck…drive you home…”
I waved, smiled a painful smile and said, “I think Ronan needs to walk this off. We’re okay.”

As soon as my foot hit the street, and I felt that I was far enough away from the house, tears streamed down my face.

I looked at Ronan—he was sweaty, red faced, with wild eyes and hair rumpled. I was angry. Oh, I was so angry! We’d had a pleasant visit. It really wasn’t that long, 30 minutes at the most. Why did the last minute of the get together turn into crazyland? All Ronan had to do was get in the car so he could go back home to his comfort zone. I didn’t understand why getting that had become such a huge demand and why he so adamantly refused to do it.

As we walked, Ronan and I held hands quietly. It wasn’t so much a peaceful hand hold like you’d see a mother and young son strolling around the neighborhood. It was more of a firm grip to keep Ronan from darting off toward the lake around the bend in the road. Along the way, Ronan kicked every dirt pile he saw. He also tried to run ahead and wiggle free. He didn’t seem to care that I was right there next to him struggling to understand what had just happened.

I cried for a few more minutes and then wiped my tears. Crying wasn’t going to solve anything, and clearly I needed to rework how I was approaching the everyday task of getting in the car and into the car seat. Before long, Ronan grew tired. At about the ¾ mile mark of our two-mile walk home, Ronan literally couldn’t lift his legs. He started to shuffle like my Grampa used to walk right before he died. Ronan shuffled, paused and forced his leg ahead of him. It was more of a swinging the leg around to make it come forward motion, something I’d never seen him do before. He was straining to make it down the street and we still had quite a ways to go. Still upset, I looked at Ronan and asked him to say sorry. He signed sorry and then signed crying.

“Yes, Mommy was crying. I’m sorry it’s so hard for you to do this but you’ve got to listen and help Mommy, too.”

At this point, Ronan couldn’t take another step.

I scooped Ronan up and put him on my back. I now had a large, lumpy and loopy kid on my back. It felt like I was carrying 50 pounds of Jell-o as Ronan could barely hold on to me. I wasn’t surprised. He’d used up all his strength in our car seat go-round. It took a lot of coordination and balance on my part to keep him propped safely on my back. I knew I better take advantage of how limp he was and get him home as quickly as I could. I could walk faster with him on my back than with the two of us shuffling down the road. With Ronan as my backpack I felt him release a big, heavy sigh, so I started off again slowly but steadily.

Then, it began to rain.

For the next mile my eyes welled up. Why is this so hard? Why is it now physically demanding? Is this going to be the new trend with Ronan now that he knows he’s gained some strength? Is this part of his “normal” development? I worried more about how I was going to manage Ronan with my other kids if he continued these types of behaviors. I still have a toddler underfoot who needs me to pick her up and tote her around, too. How was I going to safely transport her with Ronan if he had another episode? I tried to sort out the thoughts flooding my head. I prayed this was just a phase Ronan was going through, like when a toddler or preschooler tries to push his parents’ buttons just to see how far he can get.

Once we were at the end of our driveway, I let Ronan slide off my back. I once again grabbed his hand. Thankfully he was too tired to kick at the rocks and the pine cones he saw on the ground. Trudging up our driveway so slowly, I knew he’d crash again as soon as we got into the house. We walked in and were greeted with four nervous but excited children.

The children!

They witnessed the struggle. The siblings could hear me strain. They could imagine the pain. Oh, my children! I asked Ronan to sign sorry to his siblings and then plopped him on the couch. Our friend tended to Ronan while I group hugged the others. How I wish I could make this easier for them, too.

Over time the seatbelt buckling has become easier. It took brainstorming and a few trials to create that ease, but Ronan understands the process and is greatly praised for cooperating. But, because those hard days can and do pop up, when Ronan isn’t always spot on superstar getting into and out of the car, we continue to try, try again…

Oh, how we continue to try!

I’m happy to say that Ronan, now at a whopping 86 pounds, has a much better attitude about getting into and out of the car. I don’t need to carry him on my back as much as I used to because he’s better at getting himself where he needs to be now. It took time and practice and changing attitudes – both of ours – to get to that point. He and I have come so far from those early days. Those early days were exhausting! It still can be exhausting for both of us, but no matter what the day brings, my focus is on helping to make things better.

I see other parents make that their goal and appreciate being able to hear their stories. Our stories are similar: equally sad and happy. Knowing that, we help each other to work through a pain, a pain no one else fully understands. When that pain goes away, we strive to look for something else. We look for something hopeful and happy to celebrate. When that something amazing happens, even if it’s something they should’ve perfected years ago, we celebrate those little things like we’ve never celebrating before.

No matter the pain and no matter how much work it takes, these beautiful children of ours have pushed us to do our best and to be our best. They have unknowingly made us stronger. They’ve also made us wiser. Their stories have brought us together. Forever connected, we cling to each other to get us through whatever disaster pops up. Even so, if I could drop that diagnosis, I would. Autism does not define my son. Instead of making his life easier, it’s brought hardship and struggle. I don’t believe any parent wishes that for any child.

As difficult as some parts of life with autism has been, I would actually keep a few things I’ve picked up along the way – the people, the support, and the encouragement to keep going. On the very challenging days that do creep up, I couldn’t do what I need to for Ronan without the people, the support, or the encouragement we’ve gotten. In the form of a kind word, a quick hug, or an understanding look mid-meltdown, that recognition can go a long way. For that, I will be forever grateful.

Cathy Jameson is passionate writer and autism advocate. She is the mother of five children, including Ronan who has autism and severe medical issues. She is a regular contributor to Age of Autism and The Autism File Magazine, she contributed a chapter to Autism Beyond the Spectrum, and she has written for numerous parenting, holistic wellness, and health publications. She also blogs at CathyJameson.org about Ronan, autism, and parenting a special needs child with typical siblings in the hopes that sharing her experiences will help other families in similar situations.