“To tell you the truth, I’ve said it before
Tomorrow I start in a new direction
One last time these words from me
I’m never saying them again
and I shut the light
and listen as my watch unwinds…”
~ Guster, Come Downstairs and Say Hello
I started writing this blog with no real intention of using it as anything but a cathartic & necessary process.
Then people found it, and more people found it. If it’s helped one person out there, this blog has been worth it. Thank you, all of you who supported and encouraged me through my shitshow of life-pieces.
Jonah’s been well. He’s got a great sense of humor with wonderful attempts at being sneaky, but he nearly always gives himself away, laughing aloud at his own inventive trick in the midst of its very execution.
Andy is his best buddy and the most amazing father around — more amazing than I can even comprehend or begin to explain. I always knew he would be, though; even before I married him, I knew he would be, to any child.
My mom and I still see Boo on Saturdays or Sundays (depending on when Andy works) and he’s growing into a bright, happy, handsome boy with a lot of OCD and still some aggressions. In my heart I know he is in the right place, and there is a humble hope there too that he’ll grow into a young man with some independence and a whole lot of happiness.
I want to find ways to contribute more to that happiness, maybe make him a music mix or two…talk to his teacher and residence head about his preferences.
Funny; they used to ask me. It feels like it’s my own fault. I could find more ways to try to insinuate my presence into his little life. But he hates the visitor’s center (the on-campus place with really nice apartment-like settings for family visits) and there’s no “home base” for us nearby. They don’t allow visits to his own house, except to pick him up and drop him off. Andy is kind enough to have my mom and I over once a week. I could bring Jonah up to Albany, to this place – the house where he used to live. He hasn’t been here since the day we brought him to Anderson. We’ve made deliberate efforts to bring him no closer than the Stewart’s shop three blocks away.
I’m afraid to bring him here.
If he asked for home? or started to panic, cry/breakdown, it would damn near kill me. And if he liked it here, I’d need help to watch over him. I’d love for my boyfriend (who actually cares for individuals like Jonah) to live here and go with me to see Boo, but he lives 850 miles away.
He can’t leave his life there and I can’t leave mine. And so we continue to visit when we are able — once every 4-6 weeks, which we happen to think is pretty damn good — and our love is strong and joyful despite such nonsense as physical distance.
Time is an *asterisk*, Tim knows (and I am learning).
We visited West Virginia in January & I learned to cross-country ski.
Jonah’s going to be 13 on March 7th, and that’s awfully close to adulthood.
Some part of me thought he’d stay my little Boo.
Because he’s so young inside, there’s something almost wrong about his body growing out of that innocence. Those sweet, pre-school like curiosities and his uninhibited joys belong to a tiny little boy. Jonah’s teenager-sized now. It’s weird.
Valentine’s Day Treats
The residents at Anderson stay until they’re 21, and then they enter whatever program and residence suits their abilities and independence level. Sometimes it’s an adult residence much like his house now – and then the housing moves into more and more independent living situations. I’m not so much worried about those possibilities as I am staring at them, as at a distant mountain’s terrain I know we’ve all got to climb, with time’s strange ticking toward our journey “up” that incline.
We guess. Decisions about medications, therapies, music, motivation, behavior modifications. I say autism’s a casino. It’s dark inside no clocks no windows. It’s random, and it’s messy, and you can hit it big – but mostly you keep going to the ATM, withdrawing more and more from your life your choices your options until all of it is gone and you’re walking out the door, blinking into the reality-light. I say we’re in the infancy of understanding autism: the diagnosis, treatment, identification of causes…the moral earthquake of words like cure.
Part of why I love Elizabeth Moon’s The Speed of Dark is how she approaches the topic of being ‘cured of autism.’ The bare honesty and objective approach surprised me; I’d assumed she’d be unable to break from a highly subjective viewpoint (her own son has autism). But I was too quick to judge. Her book kept me interested and engaged. To me it’s an edification and an enchantment to see things from an altered angle, and this story was indeed from that kind of place – offering a glimpse into the thoughts and feelings of a man with autism (albeit high functioning) and why he is considering undergoing an experimental treatment to make him “normal.”
I feel like my time of talking about all of this is coming to an end. A huge part of my life will always be about being Jonah’s mother. I’d like, though, to write about other subjects and explore other journeys. I’ll still update here, but I truly believe the most raw and helpful entries about Boo are from Fall 2010 – August 2011 (if you don’t want to feel alone or would just like to read what we went through).
Once I build my new blog, I’ll post it here. Then I’ll continue to post here (perhaps once a month) and at the new blog as well.
One personal update: I was recently let go from Modest Needs because of a budget cut, and so I’m job hunting…exploring and considering many options. The very ground is dancing with the buzz of uncertainty and choice. I’m doing this, though.
Here’s a “Jonah’s Journey” of sorts, a collection of Jonah media for you to enjoy. See you soon.
May empathy and understanding reign.
Jonah at the eye doctor, January 2015. He’s knows the routine and is better behaved there than most adults. His eyes look good!
Mama and her happy boo
Sporting his sweats and a smile
Jonah in daddy’s “big blue bed,” sporting the You Can Never Have Too Many Trains t-shit his “aunt KP” bought him for Christmas.
Happy, Handsome Boo