Monthly Archives: January 2016

Boys to Men

At age 21, my guys are men. And like all good mean it’s time to grow into adult worlds and ways, no matter how developmentally delayed.

Just 54 days left here in the school system. I still have a mountain of paperwork to process tomorrow, several people to track on a key funding decision and meetings that have to be scheduled. But the essentials have worked out better than expected. I’m ready to launch my guys into adulthood – and me, into Adult II, as a book I’m reading suggest.

It’s hard not to be nostalgic at major life events – and I’d categorize this as one. It’s a graduation in all senses. Parents of special needs kids color the transition word in dark hues – as if you’re entering a cave of the unknown and all good and fun ceases. It was that way for me at first I suppose. The very word transition made me cringe. Wouldn’t it be nice to stay here in our little world forever? Singing made-up songs and mixing and stirring cookie dough together. Rushing out into rainstorms so we could jump puddles. Centering our lives around the rhythm of the school bus. Sending the boys off each day to a loving system built to care for their needs.

Traditional adult day programs are kind of like School II. Maybe unconsciously that’s why I chose them instead of some freeform model, but it felt right. The bus (hopefully) will arrive and drive them somewhere for 6 hours where they’re safe, hopefully engaged, and assisted by at least a half-trained staff. Thankfully Jeff will transition his after school bakery job to be his real job, a few hours a day for a few days a week. Will can be a community helper, on one day even at the same church where he likes to stack and carry chairs. I’ll still be their advocate til I drop dead. We’ll have some helpers occasionally after school so I can work a bit – hopefully less – and navigate the doctor’s appointments and all. I’m trying to boost the community engagements since special Olympics and after school art class won’t be there, and we all need community and connection. We’ll still have our weekend hiking jaunts and I doubt they’ll ever be a time the boys won’t grin when I say the word Restaurant.

Our hamlet will remain a source of light and happiness for us all- a place where the love is palpable, and I can still say I love you and give the boys kisses no matter how big and old.

Ah yes, my idyllic Pollyanna world, perhaps. Maybe I’ll have an adult wake-up call, as a friend did when her kid to the ER as an adult and seeing how prestigious hospitals still don’t get autism and how to handle a fearful, ill person with behaviors. I recall a Debbie Downer-type fellow parent relating how dayhab staff would steal money from her son. My dayhab tours certainly revealed plenty of places where staff ignored the residents, as do parents I know and trust. Maybe that will happen to me too. If Jeff’s self-injurious behavior comes back I will cry, and if Will disrobes at the new program I will thwack him upside the head. – Yeah OK it won’t be perfect.

But for now, life is good. The path is set. So far, it’s come together better than I hoped. People I asked for help really came through.- I have new and exciting opportunities for them and for me. And the way seems clear.

That Billy Joel song about “I’ve loved these days” keeps buzzing through my head. I really have.

Lingering, as lights fade

xmas tree lights only 011016
I hate putting away the Xmas tree. After an hour of doing it solo while the hubby works and the boys amuse themselves with nearby computer and video I although time’s up,I fear – I’m letting the mind wander to that other transition I fear, and that’s my most important priority for a while.

Transition to adult services. Here at day 72 prior to the boys’ 22n birthday, as rain makes me introspective – I want the sparkle, the trees and the sense that life is one big present to stay, just a little longer. I want to treat my guys as special, not disabled. To consider their growth as education, not service – as is the name of what they’ll receive to replace their IEP. To care for the cultivation of their ability to contribute to society every bit as much as in the 21 years before this day.

Who said adults don’t learn? I certainly do, and hope we all do.

But for now, for today – let there be just one more twinkling light – one delight over a skill I didn’t know they knew – a nibble of candy that was forgotten – another hug and I love you. When the boxes go back in the attic, let me focus on a rearranged room, freed up with space for more and different furniture – a new kind of living area for opportunities that are themselves gifts.