Wednesday, August 19, 2015


(First day of kindergarten - only 2 boys in the class)

Wil has a million friends, perhaps more than his "fair share," but that doesn't make saying goodbye to this one, any easier.

Ian will be heading off to the University of Montana this morning. He made sure to pick up a Grizzlies T-shirt for Wil when he went to visit, and intuitively, Wil put it on yesterday, not realizing that would be the very day he said goodbye.

The day was hot, super hot, near 100. I'd lowered the shades on one side of the living room in the morning, to keep the morning sun out. As the sun moved to the front of the house, Wil lowered that side, making a cave-like effect. 

I hated it.

Wil loved it.

As the sun went down, I tried to raise the blinds more than once, he wouldn't hear of it. 

I tried to turn on a lamp.


Wil had already had an unusual evening in that he'd gone to the mall with three friends. When they came back to our house, he entertained them in the darkened living room. They left, he was humming and stimming in the living room, decompressing and getting ready for bed, when I got this text from dear, sweet, how-will-we-live-without-him, Ian:

Ian showed up in a car with three other friends, two newish, and another dear friend that has also been in school with Wil since kindergarten, Claire P. I wanted to stay downstairs, hang out, turn on the lights, open the shades and hear the banter, but he wanted privacy with his friends, and deserved that, so I poured myself a G & T and went upstairs. Looking out my window while distracting myself on Facebook, I saw another car pull up. Three more friends, including one in Wil's special program from high school.

There is something very right in the world, when six "typicals" make it a point to spend time with their very dear friends, who just happen to have special needs, before heading off to college.

The room may have been darker than I would have liked it to be, but the world isn't. There is every reason to believe this next generation is kind, considerate, loving, selfless, compassionate, and good.

Thank you, friends, for giving us all reason to believe in the light.

Sunday, August 2, 2015

Personal Support Worker

They say the hardest part of writing is getting your butt in the chair, and keeping it there. That is certainly true for me, and especially true in the summer when there is no consistent schedule - only consistently inconsistent interruptions.

This summer is a summer like no other, in many ways it's the easiest, and in some ways the hardest. It's the easiest in that I've never had more help. It's the hardest in that Wil is not going back to a full-day school schedule in September, and my fear is this "perpetual Saturday" will be our new norm.

Wil qualifies for what is called here in Oregon, Support Services Brokerage. He has been assessed and assigned a certain number of hours a month (a lot) that he is able to have support with things like activities of daily living, community inclusion, and in September, job support/coaching.

Because there are no accidents, and an abundance of angels, Wil has had the great blessing of a friend as his Personal Support Worker (PSW) this summer. Long story short, I met with a friend in the spring, was casually telling her about Wil's future, and when I mentioned we were in the process of finding a PSW, she said her son would love to be that person. Actually, a dream come true.

And a dream come true it's been for us. This friend, Michael, as in the Archangel (no accidents) has been doing fun things with Wil all summer, and it has been liberating for all of us. They have many mutual friends, and have been able to do outings, without me, that are age-appropriate, fun, and are giving Wil independence skills. He's learned to use a wallet (and has only left it behind once, where Michael quickly retrieved it, fully intact). He's ridden bikes, walked, hopped on the bus and light rail, as well as taken Michael's or others cars all over town, including downtown. His horizons have been broadened, his pallet expanded, his comfort-zone stretched.

Michael, unfortunately, is leaving for college soon, and we will be adjusting to a different PSW or two. We have two wonderful ones in mind, and I'm certain others will be "there" when we need them, too.

Simultaneously, I've moved into a personal support worker role for my mother-in-law. She, too, needs help with activities of daily living and community inclusion. She, too, needs someone to be her second pair of ears, to hear/interpret/feed back to and help form appropriate responses. She, too, needs someone being the second pair of ears to make sure the wallet comes with us, stays in our possession, and is returned to a safe place when we get her back home. She, too, needs someone to do the driving, the arranging, the making-it-all-happen.

That's the circle of life, isn't it? We go from dependent, to some level, ideally, of independence to dependent again. I know there are spiritual lessons intrinsic in the recognition of that circle, the acceptance, the hopping on and off of it when it's our turn to be helped, and be of help, and back around again.

It helps to detach from all outcomes, to simply show up, be a support "worker" of the personal kind, and have no expectations of "results," or effectiveness. It stretches one's definition of what true support is and isn't, what is "personal" and what is simply a matter of pertinent fact, and what is "work" and what is simply love.


Driving a car without brakes--stopping the card Fred Flintstone style, new year at college with new roommates, a house so filled-to-over-flo...