A Rare Day of Punctuated Progress
There are two speeds of progress in autism: gradualism – which moves very slow but steady, and punctuated progress –where gradualism is interrupted by times of back to back steps forward - spurts of progress that occur over the course of just a few hours or just a few days. In watching my son progress through the various stages of development I have seen mostly gradualism – a slow and steady progressive change in behavior, social interaction, communication and intellect. For me it seemed like almost every step forward in my son’s autism moved slowly – tiny moments that added up over years to make one big change. Rarely have I witnessed the punctuated progress type of changes, but it just so happens that yesterday was one of those days. Although each event only lasted a moment they jumped out at me with great force. The power of such a day was tremendous. Each time it occurred I had to convince myself that yes, that really did just happen.
It started out as just another “normal” day as I took my son, Matt, shopping to multiple stores in search of a birthday gift for his dad. But at each one I was caught off guard by some small moment with tremendous meaning - each moment so powerful that it stopped me dead in my tracks and caused me to stare in wonder.
Matt lives on his own in a small apartment specifically for the elderly and the handicapped. He has moderate to severe autism and is mostly non-verbal. Matt has only been transitioning now for a few months and is still learning the ropes of independent living, but his progress has been astounding, one of leaps and bounds.
When I arrived at my son’s apartment yesterday I was greeted by smiles and high excitement. He gestured me to look at the camera in his hands. “Are we taking pictures today?” I asked. “umm” he struggled with his words as he took the SD card out and held it up. “Oh. Are we getting pictures made?” I asked. “Yes!” he exclaimed, happy that I understood. He then directed me to follow him to his bedroom where he took a photo album box down from his shelf. “I need my favorites”. He stated as he pulled one of the albums from the box and handed it to me. There, neatly organized in one of his flip albums, were pictures of the Virginia Tech campus. I noticed several of the sleeves were empty. Matt wanted to fill them. “OK, we can get the ones you want today – no problem.” He put his photos away and started turning off lights – the signal that he was ready to go. I could see he was very pleased with our interaction and smiled greatly.
As he went to grab his coat I noticed he had not taken out his trash yet. Three bags sat next to his back door. “Do you want some help or would you rather do it on your own?” I asked, expecting him to tell me he could do it himself – he doesn’t ask for help because it’s a matter of pride. Being a 28 year old man, Matt takes great pride in doing things himself. Sometimes I can tell he needs help so I just jump in and do what he needs. I try to not make a big deal out of it so his pride isn’t hurt and usually he is pleased that I do. If it’s something he wants to do on his own he just gives a simple, “No thanks” and we move on. But he doesn’t ask for help….he just doesn’t. When I asked him if he needed help with his trash he looked at me, waved his hands toward the back door, struggled with the words for a moment and then stated, “I could use your help.” His statement caught me off guard. I smiled and grabbed a bag and together we walked to the trash container out back. As we walked my mind was busy processing the fact that my son had just asked for my help. This time it was me who was smiling greatly.
When we returned to his apartment he grabbed his keys and started to usher me toward the front door. “Matt, did you brush your teeth?” I asked, knowing that brushing is a very hard habit to instill – it has been all his life. A look of “uh oh” came over his face and he immediately headed for his bathroom to brush. We’re still working on it . . . someday he will do this without prodding…..someday.
As I waited I glanced around his apartment. I noted everything was in its place. Each room was kept clean and organized and I marveled at how well he was able to take care of his apartment. When he emerged several minutes later he gave me an exaggerated smile to show off those pearly whites. “They look great!” I remarked as he opened the front door and held open the screen door for me to go first. He smiled, turned, locked his door and away we went to begin our shopping adventure.
Today was a shopping trip specifically to get his daddy a birthday present and Matt was in high spirits. So you can imagine my surprise when I asked him where he wanted to go first and his reply was “GameStop”.
“Really? GameStop?” I asked, taken back by his choice. Something wasn’t quite right evidently because his face dropped as if I had hurt him with my reply. I waited a few minutes to see if he would clue me in. No such luck.
“Matt, I’m not mad, just surprised. We are going where you want to go and you get to pick. Don’t worry.” I said, trying to bring him back from a perceived assault. “Oh, OK.” He replied, a small smile returning to his face. “Are you getting a game?” I asked, trying to direct him back to why were going there. “Ummm… Ok” he replied, sounding a bit disappointed. Something was off but I wasn’t sure just what. Something was up, something about the video game store and I was racking my brain trying to make a connection. We arrived at the GameStop where we parted ways for a short bit, him entering the store to buy a new game and me heading to the Starbuck’s next door.
I returned to my Jeep and slowly sipped my coffee as I watched him look around at the various game choices. I called my husband and told him of the previous interaction, about my voice and how it must have seemed harsh without me realizing it. I was bouncing off ideas of what could be up when Matt opened the door and climbed in. He had purchased a racing game I had never heard of .. . definitely an impulse buy. No way was that why he wanted to go here today. That’s when it hit me. I had promised my son that in February he could get a used PS3 from the video gamestore. We had to save the money first - that plan had been made 2 months ago. It hit me that our shopping day just happened to fall on February 1. No wonder he wanted to hit the GameStop first – it wasn’t a game he really wanted. I asked Matt if he wanted to get his long-awaited-for, used PS3 today. A look of relief and joy washed over his face. Yep, that was it alright – the real reason we had to come here first. But he couldn’t tell me and he couldn’t just make such a purchase without confirmation. It was up to me to acknowledge it was Ok and I had not remembered until just that moment. Yes, sometimes I drop the ball….
When I didn’t acknowledge the purchase of a PS3 that morning Matt could not buy it, so he bought a game – any game - instead. Tom was still on the phone so I handed the phone to Matt and told him to tell daddy what game he bought, then stated I would be right back, and headed into the store. It was time to get this right so Matt could enjoy his day. I went straight to the service counter and asked the clerk about the 3 different kinds of used and refurbished PS3s he had available. I then told him that Matt would be back in to purchase one and asked if he could show them to my son, explaining his handicap, and asking for his assistance.
The clerk was exceptionally nice and recognized Matt right off. He was more than happy to help. Back to the Jeep I went and opened the passenger side door so I could see Matt up close and personal. Matt looked at me puzzled. “They have 3 different PS3s in there and you need to pick out the one you want, OK?” Shock, surprise, and glee all swept over his face has he handed me back the phone and marched into the store. I ran the play by play to Tom over the phone as I watched. The clerk had opened 3 boxes and took out each to show to Matt who inspected each one as a connoisseur of fine gaming. A real-life interaction between my son and a store manager (a stranger) was taking place right in front of my eyes – this was a first – made possible by the clerk’s awareness of my son’s autism. Matt made his decision and purchased his favorite – the result was a smile ear to ear, a head held high, and a stride that revealed the empowerment he felt. All was right with the world again. I handed the phone back and Matt excitedly told his daddy all about his new gaming console.
Our next stop was a sporting goods store but after a quick look around Matt realized there was nothing of interest as a birthday gift and headed back toward the door. Two store clerks, a young man and a young woman, watched as we passed by and cheerfully said, “Come back soon” and “Have a nice day”. Matt blew right past them without a word, without so much as a glance in their direction. This was his usual behavior.
“Matt, remember to say ‘Thank-you’ when someone says ‘Have a nice day’” I reminded as he opened the door. Matt suddenly stopped, turned around and walked back in. “Thank you” he said cheerfully and waved good-bye, turned again and headed out the door. I looked at the clerks and smiled and gave a quick wave. They both flashed smiles so big their eyes shined, caught off guard by the young man who came back just to say thank you. As I walked out the door my head was spinning. Wow…. Matt had never done that….made it a point to turn around and say ‘thank you’. Until today he had always just moved quickly past people…. But today he turned around and made it a point to not only acknowledge their presence, but also said, ‘thank you’ and that my friends, well …. THAT was HUGE!
Our last stop was one to Wal-mart…. Matt’s favorite store. He was suddenly a man on a mission, going straight back to the briefcases and started looking them over. I showed him how to examine them for pockets and perks for carrying a computer – something his daddy really needed it for. Matt examined each and was left confused. “Matt, you have several kinds of carrying bags, don’t you? Think about the ones you have and pick one for daddy that’s easy to carry, can hold a lot and protect his stuff – just like one of your favorite bags” I said. Matt thought about this. The wheels started turning. He had bags of every shape and size and I was sure he was looking over each in his mind’s eye. It was starting to overwhelm him a bit so I suggested we take a break from the briefcases and go look at birthday cards.
It only took a moment for Matt to find the perfect card. He placed the card in the buggy, then looked at me and gestured he was headed back to the briefcases and I nodded – the ease of our silent communication always strikes me as amazing. I stayed in the card aisle looking over the cards. A few minutes later he was back and plopped his choice into the buggy. I looked at it and was a bit shocked to see his choice – a backpack made for computers, with tons of pockets, and a padded compartment for the laptop. There were cheaper ones, and there were the regular shoulder strap kinds that Tom usually carried, but Matt had decided that daddy needed to carry something better, something easier to handle, with lots of padding and lots of pockets. He had really thought this out. Again, for the fifth time in one day I was stunned. This was no impulse buy. No, this was a well researched purchased. Matt has done that type of critical analysis for purchasing something for himself before, but nothing this intense for someone else. I was impressed, to say the least. Matt then went back to the photo department and selected pictures for his album. I hung back, preferring to just watch from a different aisle as he did it all on his own . . . yep, another first. That made six…. Six leaps forward in one day.
We drove back to his apartment and as we rode we made plans for the next day I would see him. I helped him with his purchases, hugged him and he indicated he would call me later that day as usual. As I walked back to my Jeep alone I started counting the multitudes of miracles – the steps forward, the punctuated progress of one surreal day.
He initiated a conversation about his photos. He asked for help. He interacted with a stranger at GameStop. He actually told 2 strangers thank you, smiled and waved in a friendly exchange. He critically examined a product before purchase of an item intended for someone else. He selected photos and printed pictures without assistance from me.
Count them…. 6 signs of progress in one day.
It left me to wonder about how far he may go. It seems as my son settles into his new place he is becoming more aware of his environment, more eager to get the nuances of social interaction, and is getting better at not only accepting help, but asking for help. The ‘ultimate goal’ was to get him independent – and that is not just a simple move to a new place. It means being able to interact with those in his environment, handle stress, take care of himself, ask for help when needed, and step up to the challenges that arise over time – ones you don’t know are there until they present themselves. I knew that moving to a place of his own was just the beginning of a whole new adventure – independence - but wow, I had no idea just how fast he would blossom after he did so.
I feel more confident every day that Matt will be successful in his goal to live independently as I witness him blossoming in this environment. My excitement continues to expand over his progress and I find I am looking forward to the next set of miracles – after all, another set could be revealed the next time I see him.
They’re coming, you know…. More steps forward, more miracles, and more indicators that yes, my son can be independent. I just know it, and all I want now is to be able to recognize each and every one of those miracles when I see them - because every single one is something his doctors predicted he would never be able to do….