Sam has always been an amazingly sweet, aware, and conscientious kid. When he was 2 days old, he spent a crazy unusual amount of time awake because he just wanted to stare at the world around him. I could tell, even then that he was just taking it all in. By about 6 weeks old, Sam didn't want to be held when falling asleep. I would try to cuddle with him, but even as a tiny baby, he did not appreciate it. When he was a toddler, I began noticing that he had some funny quirks. For the most part, he hated getting his hands dirty (which I expected a toddler would enjoy). And by hated, I mean that he would often throw large fits or be unable to continue the activity if his hands got something on them. Noises, especially sudden noises, were hard for him. He also had to have things a certain way: If he put his jacket on, it needed to be zipped and his hood needed to be on his head. If he tried to do something and made a mistake, he had a very difficult time recovering and would usually just give up. There were things that became a normal part of our every day lives that he needed for consistency and comfort. I didn't think much of any of this. It all seemed manageable and normal. And we believed he really was the easiest, most self-contained child.
As time grew on, I saw Sam in relation to other children his age and began to notice that those children didn't share his "quirks" or "sensitivities." Other kids didn't cover their ears the entire time they were in a public bathroom, asking over and over if the toilet is going to be loud or crying, terrified if the hand dryer went off before I could warn about it. Other kids could sit through the somewhat crowded and noisy story time at the library without completely losing it after 5 minutes and begging to go home. Other kids didn't spend an hour or more a day driving cars over "bumps" in the carpet, over and over the bumps. Again and again. We put him in tumbling classes and while other children did the activities and listened to the teachers, Sam would have meltdown after meltdown, screaming most of the entire class. The second time around, he had the same teachers, and they remembered Sam. He was "that" kid. Then came his baseball class which just ended recently. While other kids were running and trying to catch the ball, Sam spent one entire class covering his ears, afraid the coach would blow his whistle again.
No matter what I did to try to help him, it seemed like Sam was not going to ever get past these difficulties. After a while, I became discouraged and realized that this might actually be something he needed outside help with.
I asked Sam's pediatrician about seeing an Occupational Therapist who may be able to help me with some of the concerns I had about Sam. I needed to know if my concerns were warranted or if I was just being an overprotective mother and making something out of nothing. His pediatrician fed into my fears as she told me that she felt like Sam was just fine and that we probably didn't need to go that route with him. So I left it alone for a while. It was always there, sitting in the back of my mind, and every time another meltdown happened, I would feel terribly hopeless.
Then this last summer, I spent some time with my family in Myrtle Beach. My sister Meagan, whose oldest daughter was diagnosed with Autism and then subsequently diagnosed with Turner's syndrome, has been around the block as far as Occupational Therapy is concerned. During one conversation I had with her, she encouraged me to get Sam evaluated. She had seen him interact with his world for a week and she felt like he could benefit from some of the processes her daughter had gone through. She later told me that she was nervous to say something, since you never know how that will be received, but it was actually incredibly validating for me to have that conversation with her.
During Emerson's next well-check, I went back to their pediatrician and told her I would like (read: I was demanding) a referral to an Occupational Therapist for Sam. She referred me and we began the process.
Leading up to the first appointment, I had an incredible amount of anxiety. I just knew that we would get there and she would look at me and say, "I really don't know what you are so worried about. Sam is a good kid and you are just crazy to think there's a problem here." I lost some sleep the night before because my anxiety was so high.
But then we got there. Sam's therapist, Cindy, brought us back to a room full of toys, a swing, and a small stair case. Sam busied himself playing with some toys while Cindy and I talked. As she began asking me about Sam's behavior, I felt my anxiety start to fade away. It seemed like every question she asked was completely about Sam. Every potential struggle she mentioned seemed to fit our normal, day-to-day life to a "T." I felt like for the first time, someone really understood my life. When Sam tried to get onto the pendulum swing the first time, it moved out from underneath him and he came over to me whining that he couldn't do it. Cindy turned to me and said, "Does he always give up that easily?" To which I replied an enthusiastic "Yes." She just smiled, started writing some stuff down and said, "Ok, we can work on that, too."
Since that first appointment, we have been back to see Cindy 4 times. Each time she gives us more tools to use at home with Sam in helping him deal with his world.
I have learned that the struggle Sam deals with is called "Sensory Processing Disorder" or SPD. It's really hard for me as a mother to think my child struggles with a "disorder" of any kind. But in some ways, it is nice to have a name for his challenges and a reason for some of the things he does. Since learning more about this disorder, I have become even more aware and compassionate towards Sam's needs. What I saw a unfortunate "quirks" before, I now see as sensory processing difficulties.
I'm so glad to have learned about all of this now so that Sam doesn't have to struggle with it alone. Now I know that if he is getting overwhelmed, it isn't just because he wants to be obstinate or whiny, he is dealing with something that's incredibly difficult for his brain to process. When he doesn't want to play with shaving cream, there is a reason. It's not just because it's messy. It's also scary because his brain registers it as being painful and overwhelming.
I'm so excited to know more, now, of how to help him through moments like this. It's also amazing to me how excited I get about his small accomplishments. The other day, he played with cooked spaghetti, something he would never have done before because it would stick to his hands. He was really nervous about it at first, but eventually, he played with it and actually had fun.
It's incredibly validating to be able to go to his therapist and say, "He played with cooked spaghetti!" and have her get just as excited as I am about it.
We still have a ways to go and from what I understand, SPD is something Sam will always deal with. He will always be more sensitive to outside stimulation than other people around him. But hopefully because we are working with him now, he will have a much easier time managing it all.
I'm hoping to continue blogging about my process with Sam's diagnosis and the various things we do to help him. It's hard to stay motivated about our home program because progress is usually very slow but hopefully by putting this out there, I will continue to be motivated and do what I need to do to give Sam the best chance I can.
We love our Sam boy more than words could ever express. He is sensitive, kind, caring, loving, and unashamedly emotional. I love that he feels with his whole heart and connects so strongly to his world and those he loves. He has so many gifts and talents and the world is lucky to have him in it. This is just one thing that makes living a "normal" life harder for him, but it's definitely not what makes him who he is. I can't wait to see the person he becomes and I'm excited to be able to help him on that journey.
 |
| In his favorite jacket, zipped up, and with his hood on. :) |
