There were a great many things that we were told Pheonix would likely never be able to do. We felt like as long as we gave him the opportunity to try, he at least had a chance. He attended a daycare just like every other kid who had parents who had to work full-time. The daycare accepted him without issue, knowing that he needed more attention than most toddlers. He would go in the morning and lay on his boppy pillow where the kids were playing. The other children would bring him toys and babble to him. He loved it. If I didn’t have to work, we would still go to the daycare to play. I’d stay and watch the other children interact with him. He smiled and laughed at the chaos of toddlers running around him.
Pheonix was picked up early one day a week to attend occupational and physical therapy at Children’s Hospital. Kate and Karen were his therapists and they were so creative with finding things he was interested in. He didn’t always make it easy for them. If he wasn’t getting something out of the activity that he felt was worth it, he wouldn’t do it. It required focused effort for Pheonix to coordinate muscles in his body. They went above and beyond to help Pheonix learn how to use switches for activating toys and physical exercises to improve his head control and core strength. He loved the toy where a fireman climbed up a ladder and then slid back down to the truck. He got a kick out of turning a radio on and off, abruptly playing music just to see our reaction. He used a pummel swing to help build his core strength and Kate worked hard to show Pheonix that he could use his hands to hold onto things to support his core. Belly time was best when he had a cookie or something to wiggle toward. It was hard work and some days we worried that we were expecting too much from him. Kate and Karen were willing to try just about anything despite Pheonix’s severe physical limitations. One day they told us that they were going to try something called a pony walker with Pheonix. They had been discouraged by other therapists who knew of Pheonix’s difficulties to not try things like adapted mobility, but instead focus on life skills that he would more likely be able to do. They decided to give it a try anyway, but told me it was possible that he lacked the coordination between his brain and leg muscles. They were going to try even if it took a couple sessions to help him understand how the walker works. Kate barely had the straps securing Pheonix in the pony walker on before he took off running across the therapy room, laughing pure joy like he had been waiting for this day! Every jaw in the room dropped to the floor and I burst out crying. We witnessed Pheonix walking for the first time. He didn’t need us to move. He was choosing where he was going. It is still the most memorable day in seeing Pheonix do something unexpected and incredible. The therapists didn’t even have to show him how to do it. We figured he had been seeing kids walking around him at the daycare and learned from watching them. He had just been waiting for the way that worked for him. He finally had it. We immediately applied for funding so that Pheonix could have a pony walker to use at home. He used a pony walker for several years before he grew to be so tall that he had to change to using a gait trainer. You had better have something to get Pheonix from point A to point B or he wasn’t using that walker for anything but standing. If he was motivated though, he was running! Running to the cookie jar, to get a sip of Pepsi, to chase a cat, to see how close he could get to the tv just to hear us tell him not to be so close and laugh, or try to push over the Christmas tree. He liked to use it to coast and took huge, bounding strides to glide across the hardwood floor.
You never know what someone is capable of until you give them the chance to try it. Studies are finding that observing with the intention to recreate an action activates the same areas of the brain that the individual doing the action is using. Pheonix was always watching, learning, and experiencing what he was seeing. We tried to introduce him to as many things as we could not with the expectation that he would be able to do those things too, but so that he could enjoy the things he saw around him. He may not have been able to make his body do all the things everyone else could, but by watching, his brain absorbed the experience so he felt like he could or was doing those things. He surprised us often with being able to do many of the things he learned through observation. Regardless of the ability of an individual, it is so important to immerse ourselves in learning experiences because our brains are constantly making connections. Pheonix watched others and felt like he was experiencing what he was seeing.