Had the idea of being “special needs” crossed my mind as I waited for my fourth son to smile? Those three weeks turned into three months, and I began to wonder, worry, not him, not us, not my family. Even when the smile broke through, I was not struck with a sense of relief but instead a sense of foreboding. The type that I had no control over and the blips that passed through my consciousness were preparing me for the big picture of my precious Amos. A darling blond, bespectacled 2 ½-year-old who can only say a handful of words and has been characterized by delays in virtually every area of development.
I could not admit to being a special needs family when we began the genetic testing at 4 months of age. I loathed the term and the fears that accompanied it, though it flitted through my mind again during the IV he had to be sedated for, just barely 1 ½-years-old then. There is still no genetic name or specific diagnosis, just an MRI characterized by delayed myelination and severe oral-motor issues. The cloud of hope still lingers nearby even though people—physicians and friends alike—are less likely now to encourage me to dismiss the concern that tugs at my heart. Yes, Amos has been called Einstein more times than I can count, and yet I know that is merely a band-aid.
If anyone gravitates toward hope, it is me. I love the little boy who is now 2 ½, and no one wants more than me for him to explain his wants and needs especially as the tantrums occur more and more often. I tried for so long to convince myself to be wrong, hopeful beyond measure, and envision Amos’s future as one that suddenly is full of poetic words, beautiful talking, and a language that dances off his tongue. But it’s not the truth, and it will never be our reality. He already grasps our words and shows signs of complex understanding, even empathy when a sibling is hurt. If and when his own words come, they will be born of immense work and struggle, fluidity never will be an apt description.
Regardless of what the future holds, we are a special needs family today. The seeds of hope had pushed that concept away and, I think, to a fault for us all the last two years. Pretending and waiting for everything to come together has wasted precious time. In order to get services for our little boy, we must classify ourselves as such, and you know what, it is freeing. We have to transcribe the seven codes in black ink on the applications to receive the help Amos needs. We fill out the applications now, a deliberate and painstaking process. We have to embrace the program where he will have his first school experience, the special needs class at our elementary school. Do you think I want to do this?