Seven years ago today, Sawyer was taking part in his final assessment at Vanderbilt Kennedy Center in Nashville as part of a study on autism in toddlers.
It’s crazy to think back over our journey with autism. When I think about the frustrated toddler who could only grunt or whine to communicate with us, and then look at the boy he is today with an expansive vocabulary who passes as “normal” to so many, it blows my mind.
Eight years ago, I didn’t know if I’d ever be able to hold a conversation with my son. While every other 2 year old I knew was running around, babbling with their families and having playdates with other kids, Sawyer was trapped in his own little world. He didn’t talk, he didn’t seem to want to play with anyone outside of our immediate family, and his fine motor skills were seriously lacking. My ex-husband and I made the decision to put Sawyer into a hard-core therapy program as part of a study on autism in toddlers, and it made a world of difference for Sawyer and for us.
Sawyer’s tutors and therapy team were incredible; I credit them with helping him to learn to communicate so well early on. We used a combination of PECS, sign language, and speech, until he was finally able to talk to us without assistance of cards or gestures. We also learned different methods for helping Sawyer understand his feelings and calm down when he got upset, and it has helped immensely during meltdowns over the years; just a couple of nights ago, Sawyer got very close to having a meltdown at his basketball game, and I used some of the techniques we learned from Sawyer’s therapy team to get him through it and talk him down. (One of the best ways to get Sawyer to calm down when he’s overstimulated is to gently hold his face in my hands and talk quietly, so he’s forced to focus on me and listen to my words. This helps him to tune out the noises or other stimuli that bother him, and the soothing tone of my voice helps him feel comforted and safe.)
In the autism community, there is a lot of debate over which therapies are “right” for those on the spectrum. When I chose ABA therapy, I knew a little about it but learned a lot more as Sawyer began his treatment. Some people think ABA therapy is cruel- that it is harmful and mean because it “punishes” the autistic child for behavior that is soothing/natural to them. I don’t agree with this statement; I was present for all of Sawyer’s therapy sessions and never saw or heard anything that would be harmful. I wasn’t in the same room for all of the sessions, but I was always nearby and I know for a fact that nothing Sawyer’s tutors ever did was harmful. ABA therapy is designed to reward good behavior with positive reinforcement, which is actually something a lot of people do with children, whether they’re on the spectrum or not. All ABA does is teach kids better ways to deal with their emotions and communicate. For instance, when Sawyer would get upset and scream, his tutors would ignore him until he communicated using words or his cards/signs, and then when he used a word or a card/sign to communicate, they showered him with praise. “Oh, that’s good pointing! Thank you!” or “Yes, you can have your cup! Nice asking!” If he became aggressive, they would gently redirect him to sit in the corner or by himself until he calmed down, saying things like “No, we don’t hit” or “When you calm down and use a nice voice, we can read the book.” I’ve heard a lot of horror stories over the years about therapists who handled children aggressively or talked too harshly to a child, but this was never the case with Sawyer’s team- and we dealt with a LOT of tutors during the three years he received services in Kentucky. Maybe we were lucky, but I tend to believe that most therapists genuinely love the kids they work with and want to help them.
Seven years ago, sitting there watching Sawyer interact with the tutors behind the two-way glass, I was amazed at how much progress he had made in such a short time. The first time we had sat behind that glass, Sawyer was unable to follow simple directions or requests, like “Roll the toy car” or “Can you give the baby doll her bottle?” He wanted nothing to do with the specialists giving the test, and he seemed to be oblivious to almost everything around him. This time, he was not only following directions and commands, but also using language to show preferences for other toys in the containers, and even picking at the tutors by playing peek-a-boo around the legs of the table at one point. In just two years, the baby who preferred to play by himself and wouldn’t respond to his name or simple commands had blossomed into a happy, playful little boy. We still had a long way to go, but I was so proud of him, and so grateful for his team and their evident love and passion for their career. I had no idea if he would always continue to progress at the rate he had been, and the thought of the future always made me feel a lot of anxiety for the unknown, but I did feel comforted to know that Sawyer could progress.
Today, Sawyer has progressed so much that many people who meet him for the first time don’t even realize he’s autistic, and are usually surprised to find out he’s on the spectrum because he seems to function so “normally”. I am quick to tell them that Sawyer definitely has his struggles, but yes, we are very proud of how hard he’s worked to get to where he is now, and I make sure tell him that often. After his near meltdown at the basketball game the other night, I told him how proud I was of him for trying so hard to fight through it. He wanted so badly to stay and play the game with his team, and he did it; that’s a huge accomplishment for the boy who just a couple of years ago used to have to leave basketball games for his cousin in the second or third quarter because the buzzer and noise of the gym was just too loud for him. I told him “You’ve worked so hard to be able to handle situations like that, and I am SO proud of you, buddy!” The smile on his face said it all; he is proud of himself, too.
Of course, there is always the fear of regression; when Sawyer was a baby, he started saying “Mama” at around 6 months old, but then stopped and didn’t say it again until after he was a year old. Every time he has learned a new skill, in the back of my mind there is always the worry that he’ll lose it at some point. Regression is common in kids with autism, and it’s kinda terrifying, honestly. What if he regresses back to the point where he can’t handle being in the gym for games anymore, or things like pep assemblies at school cause him to melt down? What if, at some point, he just stops talking anymore? It sounds crazy, but it has happened; it’s not as rare as one might think. A few years ago, I saw a documentary that followed a teenager with autism through his high school years and into life beyond graduation. During high school, he was a little socially awkward, but he had friends and made good grades, and functioned pretty normally alongside kids his age. However, almost as soon as he left high school, he started to regress and eventually spent most of his days as a 20-year-old man who liked to watch Disney movies on repeat and play with his massive collection of stuffed animals. He was 20, but acted and functioned more like a child of about 8 or 9 years old. Thinking about it makes me sad, because I want Sawyer to be able to grow up and live a fairly normal life. He’s only 10, but he talks about possibly getting married and having kids of his own one day when he grows up, and I pray that will be possible for him. If not, it would be hard, but we would deal with it.
In our family, we tend to take things one step at a time. I don’t dwell on the future a lot anymore, because I know that planning for the future is complicated as a special needs family. Of course, the girls and I have talked about certain “what if” scenarios, but we don’t know what the future looks like yet, and it will be hard to picture it until we’re much closer to it, if that makes sense. So for now, we will mostly just take life day by day, and live in the “now”, and be grateful for where we are today. And today Sawyer is doing pretty damn awesome. ♥
