I woke up on this first day of 2019 after a restless night of tossing and turning. I knew our ABA tech would be there to begin therapy at ten and I was exhausted after a long night of study to do just the job she would be coming to do. As I opened one eye I could feel the exhaustion setting in as I pushed my eyes open to see him standing there in a urine soaked hoodie and a drooping pull up. My first words this morning were “Aiden, go potty” as I put on my warmest robe and struggled to focus my eyes. I helped to clean him up and grabbed a coffee (that i knew i would forget and not finish) and walked around the kitchen as I listened to the sound of the keurig until the final sputter alerting me to the beginning of my day.
As I waited for the final ten minutes for the Technician to arrive I set my coffee on the kitchen counter and ascended the stairs where I found Aiden in our room watching our television and I layed back down and covered his frozen feet with the heated blanket and cuddled with him trying to keep him put knowing he was cold even if he didn’t realize it. I cuddled him and engaged with his videos repeating his favorite things as he surfed, ” dell inspiron” I said noting the look of joy across his face. “Intel” “Windows 10 toshiba” “Tally HO!” I said excitedly as he put his thumb in his mouth and closed his eyes. All the excited was just a bit too much and I have learned that when he gets overly happy or feels any emotion to a level he can not regulate he will close his eyes. Just then I heard a knock at the door and that ended our pleasant interaction and he was forced to exit the warm cacoon I had created for him. The world was waiting for our conformity once again.
Once therapy began I settled in on the couch to finish the forty hour training that had manipulated the past few days of my existance and let out a sigh of relief as I finished the final exam that discharged me from it’s stresses. I stood there watching the tech work with my son from two sets of eyes. One of the parent and one of a tech. What she was doing was now no longer a mystery to me and admittedly there are aspects of this therapeutic approach that I agree and others that leave me less than enthralled. I tilted my head to the side and my state of deep contemplation must have evident as our tech just looked at me and said, “you forgot your coffee in the living room”. “Oh crap” I picked up the cold coffee cup taking note of the way the cream had settled on the top in a circular pattern and just laughed inside. I dumped the whole cup of coffee down the drain and went up to dress.
A messy bun and a pair of faded black yoga pants. As I brushed my teeth I began to question how long it had been since aiden had been out of the house for something other than therapy and remembered that today was a 1/2 off all clothing sale at the local salvation army (aidens favorite store) and the kids were in serious need of new pants as they seem to have grown a whole foot since Christmas vacation began despite my passionate requests that they stop growing and stay this age forever .
As therapy came to a close my husband came to me and said, “what do you think about taking a trip to an indoor water park?” Knowing that aiden loves water and this would fill another 48 hours of time on this long two week school break I jumped at the opportunity so at the dining room table as our therapist was finishing up her data and session notes we booked our reservation for the next night and began to tell Aiden “Stay dry and we can go to salvation army” at which he said “WES!” and quickly brushed the front of his pants as a sign that he was still dry and he immediately scurried to put on his shoes and his coat.(Its amazing what this kid can do when he is motivated.
We loaded the kiddos up in the car and immediately i regretted that neither my phone nor the ipad was charged as I knew we had two stops to make before heading to aidens destination. We pulled up at walmart and parked in the handicap spot as david ran into the store. We never go together, me and the kids usually sit in the car as aiden cannot make it through the store. He ends up melting down everytime. its always a scene I try to avoid. As I sat in the car i picked up my phone just to pass the time and next thing I knew aiden was climbing over the seat and snatched the phone out of my hand. I let him play with it until I saw my husband approaching with his purchase and as I told him, “Aiden give momma the iphone please” he turned to the window pulling the phone further away from my grasp. So I tried another approach that sometimes worked “1…2…3… Give it to me” and he remained closed off as he began I push me away with his feet. At this, I unbuckled my seatbelt, and said, “Aiden give me the iPhone’ as I pushed his legs to the right to protect myself from being kicked and limiting his range of motion and snatched it from him. Its not aggressive, I don’t even get angry. Its a calculated behavior management technique I learned through experience. If you keep his legs straight and try to just hold him at the ankles he still has his full torso range of motion and I am more likely to be bit. But if you turn his legs to the side he has less range of motion at the waste and if I am at the right angle it doesn’t take much force to move his legs.
Once we arrived to salvation army, Aiden, arms flapping from exitement, ran through the doors and straight to the back of the store to see what old Laptop computers he could play with. This is a new behavior for him as his current obessions with Dvds is seeming to take a backseat to his obession with Laptop sticker logos. He loves the Intel and windows sticker that adorn the space near the mouse pad. After David caught up with him he took the boys as I began to scour the racks for pants for the kids. I could hear aidens moans and excited screams from across the store and smiled everytime. After about 15 minutes we all had our treasures and began to get in line. Aiden was holding a pile of 7 DVDs and we told him he could get four. David told me to divert his attention as he re shelved 3 of them so I directed Aiden back to the electronics portion of the store. As we made our way back to our place in line aiden ran to a table where more dvds were and there was a man standing there and before I could even register it he darted over and aggressively grabbed a the mans hands trying to pry his dvds out of his hands. The man in reaction pulled them back as any person would do I’m sure in shock. Within 2 tenths of a second I had both of Aidens hands in mine and i was saying, “No, Aiden, Thats not nice. We dont steal things from people… Aiden Say sorry” Without a sincerity in his voice or a look in the mans direction aide said “sowy”. The man, after having about 20 seconds to evaluate the child before him I’m sure saw the “circumstance” and said, “Its okay buddy you can hold this one”. I never looked up once. I’m not really sure what it is in these situations I never look at the other individual involved. Not sure if its fear, not sure if its my way of de-personifying the individual in the situation or if its just my way of keeping myself from crying.
As we approached david in line i said “David Aiden and I are going to wait in the car”. I was done, the fun was over. David insisted I stay and asked why I was so insistent on leaving. I explained in short terms what had transpired but he insisted that we stay. we stood in line the person behind was was staring quietly noting his idiosyncratic behaviors, his strange vocalizations and the chewey around his neck. When it was our turn to pay Aiden began reaching around the computer monitor to touch the keyboard and I had to physically restrain him from doing so and on our way out he darted toward the cashier box and I had to grab him and bear hug him tightly while in one swift movement turning him toward the door.
As we placed our treasures in the trunk and got into our seats, Aiden still holding his four DVDs, david said “That wasnt even fun” “I know, our outings are just behavior management” I replied feeling sad that he had to expereince this. He is not used to it. He works a lot and its usually me which is why even my groceries are ordered online.
After all of this I fixed aidens favorite meal to make sure he ate well and let him roam. And tonight as i got him cleaned up and ready for bed he asked for tickles and giggled and laughed. He kept trying to get me to lay with him but tonight that just wasnt to be. I needed just a few hours before bed to prepare to travel with autism after our aba session in the morning.
There are those that say I am “obsessed with autism” that I “need to find something else to focus on” it is to those people I say, “autism dictates every moment of my life. It tells me where I can go, when I can go and what aisles I can go down. It fills my schedule with therapies and my minds with worry. It fills my social life with disconnect and ‘they dont get its’ Autism has me in fear wondering if he was 16 and I was not there what would have happened when he aggressively took that dvd out of that mans hand”. But then tomorrow when I wake up to, forget my coffee once again. to aba therapy and yet another outing with autism in tow I will take his hand and we will have to face this once more despite the fear and uncertainty of what WILL happen this time but just like tonight tomorrow as the front door closes and the lock turns and we are safe again from the world everything will be okay again and its those moments that I look forward to the most. The small calm in the storm in the safe place we have created free from expectation and judgment.