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Monkey on My Back

Posted May 01 2011 12:00am

Thumb2.php By Cathy Jameson

Ronan is getting bigger! This may not sound like a newsworthy event, but it is for my son. He was considered failure to thrive for a few years in a row.  I can tell see he’s gone through a growth spurt because Ronan’s pants are shrinking right before my eyes! When picking him up last week, I noted that he’s also a bit rounder and a tad heavier. This is great news because even though Ronan will be eight and a half in a few weeks, he’s as short as his four-year old sister.

I’m also pleased with another accomplishment: Ronan gained some cognitive skills as he grew! That’s encouraging because while Ronan looks mostly normal, he exhibits behaviors and skills that are years younger than his chronological age.  During his toddler-like temper tantrums, or preschool-aged sneaky shenanigans, I see a typical child emerging. After he works out his aggression and frustrations, which include sensory issues, I wonder if all of Ronan will ever catch up to what I envision as the normal little boy I long to see.

The sensory issues that aggravate Ronan, especially his tactile defense when I come over to hug him, are ones that boggle my mind. Being careful how I approach Ronan when he’s had a bad day can make a very loving moment turn into a sour occasion. When I think he needs a fall-into-your-mommy’s-arms hug, I’ve been greeted with a karate-chopping random leg or arm instead. Those sensory problems always flare up at the worst times.  Those incidents happen when we’ve got a very short timeline to get somewhere like school or therapy. These are also the times I’m usually herding all of the kids into the car. Ronan must sense my need to get everyone seat belted quickly so we can get to that somewhere on time. That’s when Ronan opts to do everything except get buckled.  He becomes spider monkey boy waving his arms and legs in front of me to prevent me from getting his seatbelt fastened.  I know that Ronan knows I am trying to help him.  He usually respects that offer of help when we’re not in a rush and when he’s not had a sensory overload. But, the older Ronan gets and the more he’s aware he can push my buttons, the more he’s clued in to when I’ve reached frustration level. I hat that I have to outthink his next sensory defensive move because something so simple has become a burden.  

On those trying days, Ronan sees how much of a struggle it is for me to safely put him in his car seat to buckle him in. He hears how much of a strain it is for me to pick him up to get him from point A to point B. He’s already decided he will not be stepping foot near point B so he ignores my direction, reminders and help. Ronan later senses my sorrow as after we both lose all of our patience and what little energy we have left. Some days he continues the mental or physical struggle while other days he willingly caves to whatever demand has been placed on him. I never want him to completely lose that strong willed sense he has, but I sure do wish it would be easier for the both of us.

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 I to the car and then watched me attempt to get Ronan in.  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. My muscles started to ache. Then, they started to burn. Ronan began to curl his legs around mine never letting go of the car. 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). 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. I got him to the ground in a standing position and 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 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 awhile. Ronan clearly was not the quiet, aloof little kid they remembered. Wondering if we’d ever be invited to another shindig, I turned, 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.”  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 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 rumpled hair. 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.

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. Ronan kicked every dirt pile he saw. He 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 on our walk home. 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 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. He was straining to make it down the street and we still had quite a ways to go. 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. 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. 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 epsisode? 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. He was too tired to kick at the rocks and the pine cones he saw on the ground. He trudged 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. They 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. 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.

I haven’t seen the older couple from the neighborhood party since that incident. But, I have put Ronan on my back a few more times to carry him. Lately, it’s become one of his comfort zones, and I don’t mind the extra chance to hold my growing, gangling little boy.  On a recent trip for an eye exam, Ronan had a moment of fight or flight when we entered the doctor’s office. I quickly crouched down and directed Ronan to get on my back. As I scooped him up, I walked in the direction of the exam room before Ronan even had a chance to put his dukes up. He is one nervous little boy when he’s anywhere near a medical facility which makes for quick thinking and fast feet on my part.  For this visit, Ronan became content on my back. Even after the invasive eye exam he was happy to get resume his perch on my back.  Ronan made no indication he wanted to get down when it was time to go back to the car so he snuggled in and we started for the door. He even held on a bit better draping his arms over my shoulders at one point to support himself. Ronan can normally walk away from a doctor visit with no problems, but I loved that he chose me to be his mode of transportation to the parking lot that day.

Ronan looks for comfort several times a day. It’s a matter of how regulated his body is and if he can accept the out-stretched arms of a hug from me or not. With the new option of getting Ronan safely from point A to point B, and as long as I don’t throw out my back in the process, I’ll look for new places to bring Ronan. He’s tiptoeing into more community events and has even joined me on some errands. Ronan has made it through 12 grocery store visits, through 3 post office transactions and two hair cutting sessions for his sisters!  I keep track of how many times Ronan is successful to not only see his progress but to also remind me that just a few months ago it was impossible to bring Ronan into town for these types of activities.  During these excursions Ronan and I hold hands. It’s a wonderful feeling to reach for my son’s hand rather than grab it to prevent him from darting away from me as I’ve had to do previously.

Holding hands or scooping Ronan up to carry him are two new milestones for both of us—there’s a new level of partnership growing. As he realizes he must depend on me in new situations, I sense more than just cooperation from Ronan. He’s more aware of life outside our house and our routine; and, he is curious about it. Life isn’t just going by for Ronan like I felt he used to. I’m hoping to continue our outings in the community to build more learning moments for Ronan as well as build some confidence in me.

I don’t feel like I’m very strong physically, but I don’t mind the extra weight when Ronan rides piggy back. I feel a different sense of strength when Ronan drapes his body on my back for support. He finally loosens his tight muscles and relaxes. Sometimes, feeling the weight of all of his 52 pounds is more than I can manage. I don’t want to put Ronan back on the ground though. Because of Ronan’s needs, my hopes and his very close presence I can lift myself up mentally to push through physically. I never knew how hard and painful life would be for my little boy but I’ve learned to never, never give up on him.

Sometimes it feels like we’re only at the beginning of this journey because of the setbacks we encounter. Ronan has setbacks that not only slow us down but stop us dead in our tracks. As long as I don’t give in to my fears or let those setbacks become permanent road blocks, I think we’ll be okay.  Ronan reaches for me a little bit more now than he did before, and in those quiet moments he connects with me. Hand in hand or with him nestled on my back, I’ll walk to the ends of the Earth with Ronan to make sure his life can be just a little bit easier.

Cathy Jameson is a Contributing Editor for Age of Autism.

Posted by Age of Autism at May 29, 2011 at 6:45 AM in Cathy Jameson Permalink

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