If I don’t write something today it will be the first blank month since I’ve started this blog. I’ve got plenty to say but I don’t want to say it. It’s that fantasy-land thinking – If I don’t put it down on record, it isn’t happening.
Which is not to say that I am not incredibly grateful, somehow simultaneously with the strong compulsion to smash something and scream. I am grateful for every day in this new life since I have decided to live on my own ~ and somehow found the truest love I’ve ever known within that solitude.
I am grateful for everything I have, all my family and friends, my dumb American material possessions, my shelter and my food…grateful for everything for which Jonah has been gifted – an incredible education, a safe place to live, teachers, caregivers, awesome staff, a safe and loving environment. I am grateful.
In order to guard against complacency, I have made unusual life choices. At first it was a game, just to see if I could make it to October 1st without turning my heat on. Then I decided (in honor of Laura Ingalls Wilder and Dick Proenneke) to stop using lights as well. I bought some soy-based candles and I bundle up, typing with fingerless gloves and pushing the idea of heat into November now. I stopped using the dishwasher and I turned in my cable box.
Last night I turned on the TV to watch It’s the Great Pumpkin, Charlie Brown (on one of my three channels) ~ I’d forgotten how maddening commercials are. And so I watch movies instead. I still do laundry and shower in hot water, which is more than either Dick or Laura had, but I’m trying to eat by going to the store only once a month or so for fruit, vegetables, half and half, coffee, butter, and milk. I’m eating out of my ridiculously full cabinets.
Now I’m thinking seriously of going all winter this way. I live alone, so there is no one to hurt or annoy. I wonder how long I can last; I’m a skinny, cold little thing so I won’t be arrogant enough to say I can do it for certain. I’ve got my heat set at 45 so my pipes won’t freeze and neither will I. It will be interesting to see what I’ll owe on my next National Grid bill.
I know I’m a weirdo. One of my relative’s favorite mantras to me is Why can’t you just be normal?
Because normal is a dryer setting.
It’s the best answer I’ve got. So why the hollow day? Sigh…
Jonah has been aggressing more and more often. Three incidents requiring two people take-downs just this week. There is hope in that the incidents, which before came with no rhyme or reason, are now reactive to things like fire drills or too-crowded rooms with over-input of sensory activity (lights and sounds and noise and chaos, like last night’s Halloween party).
I don’t even know if I’ll get a photo of him in his costume (which was a aqua-man looking thing I found in WalMart; I hate going there). I guess he wore it okay. They told me he’d like to be a train conductor (believe you me he did not ask to be a train conductor, because he can’t make those kind of cognitive leaps). It makes sense, though, the way my Boo loves trains. But train conductor costumes top out at size 8-10, and Jonah is a 10-12 now. Almost everything he’d wear, understand, or want to be comes in toddler sizes only. I wish I had the know-how to put together a Halloween store for kids with autism and other disabilities.
And now it’s Halloween. I have always loved Halloween and dressed up in costume (even with nowhere to go) right up until this year, when being alone seems to have taken the wind out of my sails. I compare it to the first day of school or the school picture-sharing day, when parents show off photos and memories and happy shit about their adorable kid in his or her outfit/ Halloween costume, having more fun maybe than any other day of the year.
I hate it, and I hate that I hate it.
But I am not an angel and I am not a saint and I have these stupid, useless feelings of envy for these everyday joys denied Jonah, Andy, and me. Andy is waaaaay better than me at not caring.
Yes, there are advantages. I don’t have to go out in the cold with my Boo and bring him from house to house, trying to explain to people why he won’t wear his costume or say “trick or treat” — though, thanks to the Anderson School for Autism, he does now wear a costume, and they do take him trick or treating, and he does manage a discernible “trick or treat.” Irony.
Then there are our visits. When Grandma and Andy and I show up at Jonah’s house on his campus to pick him up, he is always waiting at the front door.
He flies into his daddy’s arms for a long hug, then tells grandma what he knows she’s brought for lunch, and with nary a glance at me he runs off to the car. Then he’ll say mama in the backseat? while shoving me as far away from him as possible.
I understand Jonah is daddy’s boy and I am glad of it. And I do get hugs and kisses, sometimes, once we are at Andy’s apartment (another thing I am grateful for, that Andy and I get along well enough to share Jonah visits). But he clearly is unattached to mama now, and there isn’t anything I can do but sell my home and move closer to him, to a small apartment, to spend more time with my Boo. It is something I am considering – but I can’t spend time with him alone and would need to find someone to help me.
My boyfriend Tim could do it. He is a direct care worker for individuals with autism and can do everything from restraining to administering meds when someone under his care is having a seizure, gently holding them and keeping them safe and as comfortable as possible. Tim is a gentle, loving, caring soul ~ he has met Jonah once, got along well with Andy, and was unfazed when Jonah had an aggression…standing at the ready to help but at the same time unobtrusive and friendly.
But he lives in Bloomington, Indiana…and has his own three children. I am here, and have Jonah. We do our level best to see one another once a month and are so far successful, for we do yearn for the home of being together. Next weekend we are meeting in Pittsburgh; it is a halfway point for us — and we’ve found a nice B&B and an aviary museum and science museum we’re interested in visiting, as well as nature trails near a lake and a river. This weekend I will go see Boo both weekend days to make up for the missed visit the following week.
At any rate that’s what happening. I am overjoyed and frustrated and ecstatic and sad in turns, but will meditate today and throw myself into work with redoubled effort, for after November 1 comes our fundraising push and media-story garnering at Modest Needs, where I work. I have sought a second, part-time job, wuth no luck so far.
If you are interested in Modest Needs, a BBB top-rated nonprofit, please consider stopping by our website and donating even a dollar or two to help those living on the edge of poverty (but who make barely too much for public assistance) to give them a hand-UP through a hard month, or to provide their kids with holiday gifts when their families meet with unexpected expenses, or to help veterans return home and re-acclimate to society with rent help or assistance to pay a medical bill, etc. while they wait for VA benefits.
I’m so proud and happy to work for these guys. I was a donor for 8 years or so before I started working for them in May of 2013.
I am blessed. Writing this all out allows me to feel it strongly, palpably, fully.
Finally, here are some recent pictures:
Mama and Jonah
Introspective Boo
Jonah, chugging his “app-oo ci-dah”
And one of my Tim and me, sharing time during a recent visit when he flew to see me. I am a lucky woman indeed to have found such a love.
May all of you enjoy a very Happy Halloween and blessed Samhain!
The Never Normal 