Were I to measure what I perceive to be the quality of life for my child and my family this past year —of my Nik’s progress —based on the past few months, I might indeed feel as dreary as the cold winter rain outside my window today. Nikolas has been ill a lot this autumn; he’s faced struggles which resulted in our removing him from school. He is still battling with the mysterious episodic pain which stops him in his tracks and makes my heart feel like it will shatter from frustration over my inability to make it stop —to find the cause to rid him of it once and for all.
I might also be depressed by the fact that my child cannot talk and doesn’t point to make his needs and desires known to those around him. Or the fact that he still doesn’t take any of his nutrition by mouth; he is completely dependent on his g-tube. I might be anxious about his sensory issues or his still being in diapers or any host of other things he can’t do right now.
Those are the things which throw themselves in my face each and every day. I can understand how some might feel they or their child are being held hostage —that there is some ransom which, if only they could come up with it, if only they could pay it would release their child and their family from the frustrations and heartaches faced each day. But those people who cannot see the child in front of them are missing the boat so broadly that they are in danger of drowning in the morass of their own self-pity, tears, and hand wringing.
I will be the first to admit that I occasionally indulge in all of those activities; sometimes I must simply for the release of emotions that threaten to pull me under. I must lighten my burden so I can rise above and keep moving for the sake of my child. Not some changeling who has replaced my stolen child in the dead of night —MY child who is right here with me in all his myriad moods, with his multiplicity of quirks, characteristics and disabilities each and every day.
In looking back at the year that’s passed —preparing for the newness and potential wonder of the coming year, I have been reminded of the amazing progress my son has made, the challenges he has faced and conquered, and the depth and richness he has brought to the lives of countless people each and every day. Even when I cannot see it, it is happening. All this with the help of, and sometimes in spite of, all the intervention we can afford to provide for him. In our case, that’s not a lot right now; if I won the lottery I would find a way to provide as much as possible for Nik. Alas, we have to pretty much take what his Medicaid is willing to pay for and cobble together makeshift solutions where we can. It isn’t always easy but is vastly rewarding.
If I blinked –if I didn’t take the time to review –I would have missed or taken for granted my son’s learning to walk and to stand, to sip from a straw, to remove his clothes, to zip his jacket and unsnap his pajamas. I would have missed him climbing out of his crib and ignored the marvel of motor planning and balance, coordination and sheer confidence that feat had to take.
I would have missed picking up on his uncanny ability learn the tune of songs he’s heard only a handful of times. His ability to use some of those same tunes to communicate things to a savvy listener —I need to wash my hands, I need clean pants, it’s time to brush my teeth, it’s time for medicine. I would have missed the transition of my son going from complete sensory overload —to the point of near catatonic state at the end of the school day— to my home schooled child who now knows and can tell me –using his body –what he wants. Who takes my hand in his and leads me to the armoire where he can see his shape sorter on top; he tugs my hand upward to ask for it. When I take it down and ask “Is this what you want, sweetie?” he grins and sits down on the floor to play with it —with me. It is something we always play with together and he knows it. I would have missed the complexity of his asking me to play masked in the simplicity of requesting a toy.
Or the beginning of him trying to communicate his hunger; he screams and cries and throws himself on the floor as if he is simply going to expire. It’s taken a while for me to catch on but now I can ask, “Are you hungry? Do you want to eat?” and he will growl a funny little guttural sound and lift his shirt to expose his belly —where he knows his feeding tube gets inserted and then he gets filled up. I would have missed the opportunity to teach him that he can say “Mamamamama!” when he is hungry and to know that I will come to him; he doesn’t have to thrash and fight for everything he wants. It is slow but it is progressing.
I would have missed the opportunity to see that my child has come so very, very far from mindlessly pushing buttons and keys to hear lights and music without purpose —or flitting from toy to toy to toy in a matter of mere seconds, unable to focus on any one thing long enough to understand what he can do with it, let alone complete a task —to watching with pride as he sits and plays, engrossed, in a musical book as he turns the pages and explores what the different sounds and pictures tell him. Or the ability to grasp a crayon and scribble a few lines on a page. I would have missed the significance of that development; the ability coupled with the desire to communicate something —even if it is purely for or to himself. He is communicating –a thought, a feeling, a sensation, a vision.
Or his wordless declarations of independence –of moving from diapers to pull-ups, from his special seating system to a regular booster seat all on his terms not mine.. His determination to walk or crawl up the stairs at nap and bed times with as little assistance as possible. His ability to communicate clear-cut choices of toys or activities. His unbridled enthusiasm about going for a ride in the car. His unfettered joy at playing with each of his amazing therapists.
I would have missed the increasing frequency of sly smirks or mischievous gleams in his eye. Or the need to drop everything to clap hands with Nanny or Granddaddy when he hears them come into the room. The way he rubs his cheek and forehead against my husband’s chin, feeling the reassuring scruffiness of Daddy. Or the squinty-eyed grin he gives me every single morning before he gets out of bed. My son communicates in so many ways if I can but slow down enough to hear him –take the time to learn his language.
I might have missed him learning to tolerate new textures, tastes, and sensations; he is gradually increasing his tolerance for things that I once took for granted like the feel of warm sand beneath my feet as I walk on the beach. Or the cool feel of water splashing on my face on a warm summer day. Had I not looked in the mirror at the reflection of this year, I would have missed those subtle shifts for Nik which have the potential to open up new vistas for our entire family.
My child is certainly not a hostage being held by anyone or anything; there is no need to ransom him from anything or for any reason. He shows me every single day that he is ready —and able with my help –to fight his own way out of whatever box anyone tries to constrain him in. He is my fearless, determined boy who will prevail because of the strength of his spirit and his capacity to inspire love, loyalty and commitment in those around him.
Woe betide his so-called captors of any ilk —medical conditions, neurological impairments, bad educational systems, and well-intentioned but misguided professionals —even his parents if they get mired in fear and limiting thoughts. Nik will kick ass and take names later as he saunters out the door to his life. His very full, very rich, and increasingly present life.
If one lives each day wearing only the blinders of fear, limits, gloom and doom about whatever challenges their child faces, they will miss the child who has been right in front of them all along. The real hostage in this case is their sense of perspective.
I am grateful that Nik keeps mine in constant, if delicate, balance.
In case you have been in seclusion lately, you are most likely aware of the Ransom Notes campaign recently begun by the NYU Child Studies Center. If not, please take the time to go here to check it out. Then, if you are as outraged as many, many people are, I hope you will go here to add your signature to an open letter to NYU-CSC urging them to halt the advertising campaign. This is not an autism-only issue; it is a case of perpetuating negative and harmful stereotypes about numerous disorders which can impact a person’s life. Education must include a more holistic picture of the person impacted. My son is not his diagnoses nor are any of these people or their loved ones their diagnosis.