Monthly Archives: October 2015

Open doors – closed doors – and moving on

Change is hard. I’m more aware than ever today with slightly over 4 months before my guys age out of school and into adult services. But I’m celebrating if only for a moment an emerging skill – the ability to open AND CLOSE the basement door as they complete the full chain of school bus entry – get your backpack, put on your coat, open THEN CLOSE the door, and press the garage door opener button.

We’re 2 for 2 today. Baby steps toward the future. Progress measured by any size yardstick is progress all the same.

As I ready them to march out a lot of doors, I want to make this transition thorough – safe – and done right. The adult services world is less daunting right now than all the other stuff, the really scary stuff, like not living with Mommy and having me let go (yikes!) of all those important to me items like flossed teeth and cleanliness. On the one hand, their lives won’t change all that much. Hopefully if funding allows a school bus-looking vehicle will still arrive, transport them somewhere outside the home that’s safe and structured, and occupy them for 6 hours, hopefully meaningfully.

On the other hand – they will not be eligible for a lot of the things we enjoy now, as sanity-savers for me if no one else. Like care support after school and occasional respite. I’m sure there will be plenty of other fights too for health care supports we also now enjoy that may go.

Just beforehand I went for a walk with a dear friend. We ended up somewhere new, an open field with a path cut across a field and over a gently arching footbridge, leading up a sun-drenched hillside dotted by red and yellow and orange trees that cried “I’m happy!” from every branch. “Don’t you just love an open path?” she said.

Yes -I do. 🙂

Autism’s gifts

Mt Abraham mom and men 50PERCENT 10-12-15

What a gift this day was. I can’t stop thinking about this picture, taken yesterday, Columbus Day 2015 from the top of Mt. Abraham, Maine’s 2nd highest peak. Firstly it’s rare the boys are actually looking at the camera, so thank you iPhone IoS burst feature and the husband who found it. Second the weather was just amazing, almost as gorgeous as the day the boys’ sister was born some 24 years ago last week. But most of all, because this picture is my talisman for the days like today when it’s all work, or rain, or the clouds obscure the way.

Autism gave me the mountains, which I always loved but thanks to the boys, they’ve loved me back.

Autism gave me a different trail than my other kind of exceptional child. The autism trail is rocky, hard and long, like the talus field we crossed made of the kind of rocks we sit upon in the picture, only smaller – for a half-mile of it. You look up at the steepness and say, My God. – But like yesterday and like this picture, some days the rewards bathe you like warm sunlight – and somehow the road isn’t as daunting as you feared. Those days more than make up for the ones where you had to turn back, or you swore at the universe as you bit your lip til it bled, or wondered why this curse was foisted on you. In those gifts of a moment, you meet your goal, and that’s great – but the best part is that you know you’re the master of the trail, and not vice-versa.

Most of all autism gave me these young men – these glorious, challenged but exceptional young men. No they aren’t destined for Harvard since they can’t read. They may struggle enough to butter their toast or orient their shirt front and back. But the joy in those smiles above fills the skies, and all who are sensitive enough to see, and feel what is radiating from my guys. It’s pure love. I like to believe it’s love for me, and I think it is, but I think it’s also the joy of slogging through the metaphoric trees of life and emerging above treeline (Will’s favorite) to the reward you earned, and thoroughly savor. For kids of this profile, so much of everyday living is just such hard work. Bursting into the bright beyond is so energizing. The knowledge that you can do it, whatever “it” may be, is almost as powerful as the tectonic force that created those mountains. And it’s as limitless as the skies.

Perhaps that’s the best gift of all -not only the love they bring to me, but the capacity they can bring to the great beyond. We sat seemingly on top of the world this day, and felt the mountain magic as the foliage lit the trees on fire. In reality – perhaps it is us, creating that fire.