Carson turns 13 years old tomorrow. This makes me the father of two teens now as his older brother, Beckett, turned 14 in May.
Carson is not much for celebrating these sorts of things. In fact, he can’t come up with one thing he wants for his birthday. It says a lot about him. He’s just not into a whole lot of material things, aside from his iPad. He loves puzzles and games but seems to lack the cognitive ability to express his wants and desires. If we hand him a magazine or brochure, he will circle some items, but I think he does it just to satisfy us. I truly doubt he wants a Disney blowup pool that he no longer fits in after all.
While we will figure out ways to make his special day unique without causing him anxiety, birthdays provide all parents an opportunity to reflect on their kid. In Carson’s case, I always come back to my supreme pride.
It may sound crazy because he’s my son, but I think Carson has been the most influential person in my life. My parents, of course, top the list as their commitment, love and support have been boundless from the beginning. However, I give Carson credit for changing me forever.
Autism presents itself uniquely in each kid, confirming the term “spectrum” is apt. The traits of each special needs individual can vary greatly. Carson is nonverbal and has horrible social anxiety that results in concerning behavior extremes. Some days are better than others. To be honest, we have been having a lot of rough days lately. Pam and I are living in a state of bewilderment as we try to find ways to help Carson function. He seems of late to be in turmoil, especially in school. There are more good days than bad days, I think, but it’s far closer a margin than we wish. We know he has a team of teachers and special educators who want the best and have proven their genuine commitments.
As we navigate some uncertain times with him, Carson’s gifts to me, and I like to think my son and wife, are patience, perspective and gratitude. He has come so far and overcome so much. I will never underestimate him because he proves us wrong whenever we do. However, I also do not want to burden him with the same expectations we have his for neurotypical older brother. It would be unfair. His life will be different, but I know Carson will write a wonderful story.
One of the reasons I write this column is to document he and his brother’s lives for them. One day – probably after I am gone — they will read these columns with an appreciation because most of what’s included on a weekly basis they will forget. I selfishly write it for a similar reason – to remind me of what we have gone through together every step of the way.
Through this column’s 14 years, honesty has been the goal through the good and the bad. I hope it never comes across as boasting because it’s not intended to be. It’s just an open diary of sorts, and I learn something new every day about parenting.
Autism is not the parenting journey I would have picked if given a choice. Nobody would intentionally choose this difficult life. Naturally, I do have moments of anger and pity at times, but there’s never regret. My frustrations, at times, arise more over my own inability and shortcomings to always help Carson. It’s never about him. There are many instances in life when choices are not ours to make because of the difficulties of our individual journey. I believe God made the decision to put Autism in our lives through Carson. The fact he was adopted at birth only deepens our faith he’s with us for a reason.
On our bad days, I occasionally reflect about what Carson’s life will be like without Pam and me. He has our heart and our focus. We are as committed to him today as we were when we walked out of that rural hospital in Wilkes-Barre, Pa. in November of 2009. We sensed something different about him from the beginning when compared to his brother who was born 19 months earlier in West Chester, Pa. Some signs were presented even if we didn’t understand what they meant.
I knew next to nothing about Autism and the special needs world back then. I have learned a ton along the way and our teacher has been our kid. The best lesson I have taken from Carson is the importance of living day to day. Each morning represents a new start. It’s how he seems to approach his life and I admire and emulate that. It requires flexibility on his family’s part.
Let’s take Tuesday morning for example. It was the day after Halloween and he was not right. He would not get out of bed for school. He was awake but he would not do anything. It was frustrating me because we were running late. All the tricks that typically work to get him jumpstarted were unsuccessful. It was as if he was sick, which he said was not the case. He just didn’t want to get moving and go to school. He was exhausted.
Pam and I ultimately decided forcing this issue would not result in a productive day at school. The challenges seen in school have already been worrisome and we opted to give him a personal day at home. The day off came with an acknowledgement it was a special occasion. The next day he got up for school without any trouble. I was proud of us for being flexible with him but then upset later with him when he had some terrible and poor behaviors at school. The day sums up life with him. It’s a journey for certain but it all centers on pride because he has overcome more in his young life than anyone I know.
