Raising children is no joke and raising children with special needs is a full-fledged sitcom – a dark, dark, dark, twisted, punch you in the gut comedic saga.
Like most parents of children with special needs I find myself living in the future and fearing the unknown. At the same time I call on those tranquil peaceful spa-like moments when all is right in the world and I am reminded of a simple mantra to stay in the present…just stay in the present (namaste).
At times, the fears are too frightening to consider. The questions in my head pile high reaching the capacity of my skull, “will our son be able to live on his own?” “Will he have meaningful friendships?” “Who will care for our daughter when I need care myself?” “Will she be safe?” “How will I afford the level of care these two adults might need?” Olivia, stay in the present damn it!
Nearly eleven years ago we had our daughter, Ryan. Upon seeing her squished, blueish-grey face, and floppy body I knew instantly that she was a child who will require a lifetime of special care.
Nearly six years ago we had our son Cruz. He entered the world in a slightly less traumatic fashion (after all, he was nine pounds). However, over the next few years we learned that he struggles with speaking, processing language, and exhibits autistic-like behaviors. He also requires special services and care.
Nestled in the middle of our oldest and youngest children is our son Mateo. In the community of mental health and educational specialists he would be considered “neurotypical.” He is able to care for his seven-year-old needs independently and demonstrates the capabilities to care for himself into adulthood. But wedged somewhere in those pile of questions is yet another question that bridges the gap between future and present.
“Who in this house is actually the one with special needs?”
Certainly, anyone who has raised a neurotypical 7-year-old boy would agree these kids have their own developmental ecosystem. The thoughts, feelings, language, and behaviors that emerge from Mateo are a source of parental pride and parental fear at the same time. I have begun to consider him as requiring as much, if not more, special attention than our other two children. In fact, if we are being honest, on most days he is the one that challenges my mothering skills, calls on my patience, and demands me to examine his relationship and responsibilities to his brother and sister.
The uncomfortable and raw truth is that when we die Mateo will need to care for his sister and brother in some capacity and this is difficult for me to admit. As their mother I know the tireless challenges of caring for another and I want Mateo to be the man he is intended to be without these challenges. However, his reality and manhood will be shaped by developing empathy for his brother, sister, and others like them. We are tasked with shaping Mateo into a brother who doesn’t “have to,” but “wants to” care for his siblings in a manner most do not need to undertake. So, how do I navigate the “this is not fair” seven-year-old foot stomping moments when his sister doesn’t have to pick up a spill or when his brother gets one extra treat because he was able to form the words to make the request?
I explain it to him. Even if the concept is over his head, I do my best to help him understand the “whys” of things.
I listen to him.I let him express his anger and validate his feelings of unfairness and frustration. I buffer the responsibility he feels for his brother and sister. I can see this seven-year-old shaping into an unintended caretaker and it both warms and breaks my heart.
He is supported and encouraged to find paths that make him happy. Sports. Friends. Hobbies all his own. But, there are also “fine lines” all around my house that I navigate on a daily basis. There are moments when I do need all hands-on deck, including little seven-year-old dirty fingered hands and I weigh the impact of my requests.
So, who is the one with special needs? In our house it’s all of us.
I am as desperate for Mateo to learn essential life skills as I am for Cruz and Ryan to learn their own. For Mateo, his lessons will prepare him for the uncertain futures of his two siblings I will delicately hand off to him.
As for me? Yes, absolutely I have special needs. I believe we all do. We are all strong and resilient until we find ourselves in moments of vulnerability. That is what binds us and forces us to recognize we are more similar than we are different. I believe the act of inclusion, whether it is in our communities, schools, or in our own homes, is an act of compassion and ultimately conveys a message we all need - “you and I are the same and I see you."
As I forge ahead into our uncertain future I am reminded stay present damn it, stay present!