Measuring progress is a big deal with Carson.
When we notice it, it’s encouraging and inspiring because it reminds us how far he has come over the years. When we experience a setback or regression, we are disappointed, but we live day-to-day and that helps us maintain an even keel.
To me, progress for our special needs son involves moving forward in growth and development. We are seeing it routinely and that’s encouraging.
When we took him to Paw Patrol Live! in Salisbury last week, Pam and I both remarked on the way home how we could never imagine the night going as smoothly as it did a couple of years ago. Advance concern and worry over the late night and unexpected behaviors, like attempting to rush the stage, would have caused us to not buy tickets.
On this particular night, he was absolutely perfect throughout. Even when we refused to buy a $30 illuminated wand, he accepted it and moved on without any trouble. When we said there were certain times he had to hold our hand, he obliged. He did exactly what we hoped. That was a night of considerable growth for him. That’s what led these thoughts about progress.
I look at it in a similar way as a post this week on the Raymond A. Wood Foundation’s Facebook page. The page is dedicated to Alex Wood, a local elementary school boy who at the age of four was found to have a brain tumor. Three years later, Alex continues to recover from brain surgery and all that comes with it, including diabetes insipidus.
Alex and Carson go to the same school and they have been taking swimming lessons together with Ms. Nancy in Ocean Pines on Saturday mornings for several months. They are buddies, each with special needs on different levels. Our family loves Alex, who is a social child who, at times, seems to prefer chatting me up about ice cream, shelling on the beach and how silly Carson is at times over swimming in the pool. He and his impressive parents have been through hell the last three years and they are continuing to wade through the recovery process.
Pam and I have had many conversations about the Wood family. It’s natural to compare challenges with our special needs kids.
Shortly after Carson was born and adopted, we knew something was different. We initially assumed it was just taking him longer than Beckett, who is 19 months older, to overcome the effects of neonatal abstinence syndrome. We eventually accepted his issues were deeper than his birth mother taking drugs while pregnant. We learned four years ago he has a rare genetic disorder called Duplication 7 (he has too much of chromosome 7) as well as Apraxia (a motor planning disability that causes him to be non-verbal).
With Alex, the Wood family was living a normal life until one day everything changed dramatically. Their son had a brain tumor that would alter his and their life forever. They were parenting a so-called normal child for four years and then life turned upside down instantly.
When life becomes particularly challenging, we often think about how other people, like the Wood family, have it so much harder than us. While our adventures have been different, I wholeheartedly can identify with a sentiment expressed on that Wood foundation page I referenced earlier.
On the occasion of Alex’s three-year tumor-free anniversary, the post read, “Fast forward to today, and while we still have our challenges, but recently we have been in a good place with his recovery. It’s a slow process of progression and regression but we focus on progress and not perfection. It has taken every single day of these last three years. EVERY. SINGLE. DAY.”
The concept of this ever-evolving process of progression and regression is on display in our world every day. Perfection is not reality. Progress and improvement is what inspires us.
For example, one morning this week, Carson threw a toy while I was driving and hit me square in the temple. He laughed about it. The fact it came after he slapped his brother on the nose for no reason made it more disturbing. When forcing him to apologize, I could tell it wasn’t sincere. There was no remorse. That’s in stark contrast to his kind hearted and caring way. Knowing that makes these random and unexpected outbursts so disturbing. That’s especially so because he has made so much incredible progress and steady improvements in all facets of life over the last year.
Fortunately, these concerning moments are few and far between these days. With Carson, I just want him to function well in daily life. I score it a big victory when we pull up to school and he’s ready to get out of the vehicle within a couple minutes. He struggles mightily with transitions. He’s insistent on finishing whatever he’s started. He does not understand the concept of time.
It’s a challenge we face multiple times daily, but it’s comforting to know there are other families dealing with similar, and oftentimes more intense, obstacles. It’s an unspoken bond.
