My youngest son Carter he lives in a social cocoon. His world is limited to school (a tiny private school that caters exclusively to children with special needs), church (again, tiny, and a very loving community that values inclusion for all), our house and his grandparents’ house, with the occasional playdate at the home of friends from school. When out and about in the city, he is always accompanied by a parent, grandparent, or one of his much older siblings.
He never balks at any of this. While he is chronologically and physically twelve years old, he functions in most ways more like a child around 5 to 8. He despises crowds and chaos and prefers to spend his time with people who know and understand him and his challenges. He’s afraid to navigate the world on his own and likes to have one of “his people” available to help, and for good reason. He has many disabilities, including mental illness and intellectual disability, but I believe the specific issue that makes the world so difficult for him is that his processing speed and working memory challenges put him in the “profoundly deficient” category (egads, I hate when they use the word deficient on evaluation reports). In the parlance of the reports we parents of special needs children spend more time studying than we’d like to admit, his abilities in those two categories are in the 0.1 percentile.
Working memory and processing speed both have to do with the ability to take in information and make sense of them efficiently and proficiently. We are all constantly manipulating information and responding to what is happening in our internal and external environments, and for most of us, unless we are in a very unusual and/or challenging situation, that manipulation of information and subsequent response is automatic, or at least very easy.
For Carter, even when he is in his own home, doing things he does every day, he must exert enormous mental energy to perform a sequence of events. While I can brush my teeth, take a shower, and dress myself all while my brain is occupied with other things, Carter must constantly attend mentally (and requires reminders from me to stay focused). All the adults who care for Carter have had to learn to make allowances for these challenges lest he become frustrated or angry because he just can’t hold several things in his mind at once.
And just imagine being in the world, equipped with a brain that needs so much time to process stimuli. When he sees a person out of context (a friend from school appears at our church, or we run into one of his teachers at the store) and he panics for a moment because he knows some social response is expected of him, but formulating that response takes a long time.
This makes virtually every situation he encounters an emotional land mine for Carter. He can usually read expectations on people’s faces and in their body language, but he can’t understand and respond to those expectations as quickly as social protocol dictates. As a sweet, eager-to-please person, this frustrates him. As a mom who understands the emotional brutality that is all too often visited on people who are perceived as different, it terrifies me.
As his mom, and also the mom of three other children who have rounded adolescence and entered early adulthood, I know that Carter won’t be comfortable living this cocooned life forever. He is going to need a more robust social life, and soon. The trouble is, while Carter doesn’t appear disabled on first meeting to most adults, other kids his age sense his differences immediately, and so far we haven’t met many who have patience for him. Mid high kids are naturally self-centered and while they may indulge a child like Carter a little bit, we’ve yet to meet a tween who is willing to truly befriend him and fully integrate him into a social group.
I don’t know the answers, only that these are questions we have begun to ask and will continue to explore in the coming years. Maybe it will be OK that Carter’s social life is populated mostly with other people who have similar challenges. Maybe Carter, his dad, and I will find ways to create a social life that is satisfying, interesting, and safe, even as he enters the age at which he will want to branch out and know a broader group of people.
For now, we continue to explore options, and enjoy having our curious, charming son at home, happy to be here long after the age at which his siblings were agitating for more freedom.
About the Author
Adrienne Jones lives in Albuquerque with her husband and children, and in the hours just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style.
Find links to almost everything she does on the internet at about.me/AdrienneJones.