invisible

an esteemed magic power. one that is tough to fight. how can you fight what no one can see?

i have avoided writing what is always present, though not always seen. avoidance is easier than dealing with the depths we can reach when we realize things aren't turning out as hoped. it was exactly one year ago today, a friend (also a special needs preschool teacher) finally saw the invisible disorder i'd been catching glints of. while standing on the street corner she said "so hope I don't freak you out too much, I know it is hard to hear......" as the little dude spun the propeller of his helicopter. my heart sank. i never knew how much pain came with relief. two days later, a doctor confirmed my suspicions about the little dude.

autism spectrum disorder. high- functioning autism. on the spectrum. asperger-like characteristics. sensory-integration challenges. auditory processing disorder....a neurological disorder....these words still swirl through my brain. i still choke on them when they are spoken in the same breath as ryder. i have days i want to SCREAM. why why why - why him? how could one word suddenly change the little boy sitting in my arms that day? i don't want these words to define him. i've got better words. delicious. remarkable. unique intelligence. unbelievable memory. startling expressions. pure kindness. adorable. amazing. an emotional barometer.

to come to terms with something, you have to face it, so every now and then, i stop along this path draw in a deep breath and face my life exactly as it is....as i exhale i think about what might have been. inhale....look at what is, and give thanks, and keep going...exhale.

so how is it that a year has passed? in the past year i've done a lot and at times nothing. please don't judge, it's not for lack of want, rather time. time is not my friend. ASD is not for single-working moms. i've only got 3 hours a day with him when i get home. those hours make for a fast year. i write 'to-do lists' but somewhere between their inception and completion i'm hit with sadness and fear. so many questions i've answered, so many i can't. all to often we blame ourselves for things we can't control. it is no different with neuorlogical disorders.

why am i still so angry?
because i am reminded of my past each time i deal with some who are still in denial and rather than face this foggy on-the-spectrum diagnosis, they give me one --over parenting, single-mother. (admittedly i fight the urge to over-parent, what mother doesn't have to hold back when we see our little ones struggle?) because he is such a bright boy who was seen as gifted when he spoke early, knew his alphabet by 18 mos, memorized books, places, people and so many details it was (and is) simply remarkable. because sitting in that dr. office in one moment i felt my dreams evaporate.

why haven't i taken him to a nutritionist yet?
because i didn't know. and now one week into that recent finding -- because i like our diet, how well he eats, i don't know how i'll manage making a switch.

why haven't i done more therapy?
because i'm overwhelmed. because i don't have the money. because i don't have the time. because it's not how i want to spend the time i have with him.

why are you still sad?
because i love him and i want to do more for him that is physically possible. because it's only been a year and at times, i mourn for the little boy i thought i had. because i'm doing this alone and fear it's too much. because when i watch him sleep i can actually feel my heart breaking. i constantly remind myself to be grateful, things could be worse (i know this is true after reading many many heart-wrenching blogs on loss) and yet i still have these moments that i ache for him, the child he would've been and the child he is.

why do i worry when i know he'll be fine?
because i love him so fiercely, i worry others won't see him, really see him and love him. i want to hang on to this precious boy forever, protect him so that no one will make him feel bad because he's quirky or think he's not paying attention, when he is, to you and to more than we can see. because i want him to learn the skills he'll need to manage his life in this world. a society that has a strong need for sameness, as does he.

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we need a more contemporary view of autism spectrum.

diversity reigns.

it's been a year and he is as precious to me as the day he arrived.
and just like that day we still have an unbreakable bond.

an invisible magic power.