Today’s post is brought to you by the lovely Varda from The Squashed Bologna: a slice of life in the sandwich generation. I do hope you’ll visit her blog and show her some love here.
But around here? Well every day is really about Autism Awareness now, isn’t it?There isn’t a day that goes by that I’m not acutely, astoundingly, profoundly and matter-of-factly aware of my son Jacob’s autism.
I want to tell you all about the beauty of my son Jacob, who is on the autism spectrum… or has autism… or is autistic or… I don’t know what’s the “correct” way to phrase it anymore.
My friend Peter, who is himself on the spectrum with NVLD has a son who is likewise “on the spectrum” somewhere but without a clear diagnostic label. What he says about his son is: “G” has a 100% diagnosis… of being “G.” And some days that’s what I want to say about Jake.
Jacob is… Jacob. Unique and beautiful. My autistic snowflake.
As Jake gets older, he is evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.
And yes, he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.
I love Jacob with every fiber of my being.
But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn’t compute, and he switches off.
I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.
I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.
But I know how harsh and cruel the world can be for those who are noticeably different.
And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?
I am also weirdly comforted by knowing that Jacob will not be alone. That he will be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change – and will actively BE changed by his brethren – to accommodate Jake and his people.
1 in 50 is a number, a statistic.
But my Jacob is not a number.
He is a person.
He is my beautiful son, Jacob.
His favorite color is yellow.