Monday, December 21, 2015

A Force Awakens and Some Serious Change is Afoot

I can't buy into all the Star Wars hype even though it was a terribly enjoyable film to watch. I don't like that a PG13 film is being so heavily marketed to kids far too young to see the movie.  But I will say that in the last few days there has been some serious action in the Force.

Simon has had an amazing 4 days where purely by accident, and years of work, he has been getting himself dressed in the himself!

For years, we've been working on daily living skills with getting dressed being one of the first that's required at the start of the day. Last Thursday something clicked. Jaime and I talked about it and decided that we should try something different to avoid the morning melt down after breakfast. Since Simon was a spectacular eater now, why not get dressed first, eat, and then have free time for tv or ipad with plenty of transition time to get out the door.

No clue if it would work or not. We often have no clue what will work or not with Simon. And that's just fine. It's all practice anyway. Good practice.

So, I had picked out his clothes and placed them in a pile next to him with his shoes nearby on the floor. Underwear, socks, pants, long sleeve shirt and a short sleeve shirt to go over it for extra warmth now that winter has hit. I asked him to get started taking his pajamas off and that I would be right back after a trip to the loo.

From my perch in the bathroom I can see his head and not much else.  I hear him taking off his pajamas and alternately cursing me and mumbling to himself for the next few minutes. The mumbling starts to sound clearer and mixed in with the "you're fired" and "mommy is terrible" I hear "that's my underwear" and "I'm doing it".  Almost at exactly the same time that I'm coming back into the living room Simon exclaims "I got dressed all by myself!" and damn if it wasn't true. He had everything on, even his shoes. I couldn't catch my breath. I didn't know what to do with myself. What normally takes 20 minutes and dozens of prompts and the occasional putting on of pants/shirts/socks backwards, had taken about 5 minutes with none of the aforementioned. And the boy knew what he did. He was proud of himself. There's not much sweeter than Simon's tone when he exclaims "I did it myself!"

It's six simple steps that most of us, even most 7 year olds, take for granted. Underwear, socks, pants, two shirts, and a pair of shoes. That morning 4 days ago, Simon summit-ed a mountain. He graduated. He flew. He got dressed by himself.

For those of you that have kids with special needs, ya feel me?

Jaime and I had just had some very hard conversations (spurred on by estate planning and Last Will & Testaments and such) about how Simon may or may not be able to live independently. He's a funny guy. So smart and engaged in the world in so many ways. He's also a mystery and challenged by a world that's not set up for the special kind of guy he is.  He thrives and he struggles. He continues to take us right to the edge of our understanding of him and then blows ours minds and hearts wide open.

It may not sound like much to you but when I say that Simon got himself dressed, that day, and every day since, it's sounds like a symphony to me.

So there was that.

That same day, I got a call.

It was from the Alta Bates/Summit Health C.P.E program letting me know that I'd been accepted into the 2016/17 Residency Program for Chaplaincy. It's been three years since I did my first unit (of 4) of Chaplaincy training. It was a deep affirmation of work that I've felt called to do even long before Simon went into the hospital.  Providing attention and support for people was what got me into social work back in 2000 but I never felt that was 'it'. I loved being with children and adults doing both clinical and case management work but missed the spiritual and emotional connection that was present during my summers at Farm & Wilderness where Quaker practice was present every day.

 Chaplaincy, once I learned about it, felt like a calling. It was an opportunity to share my experiences, skills, and passions with people, all kinds of people, that really needed support and connection. It included anti-oppression work, it included play and sometimes even singing, it included the Spirit, and deep self reflection. I was in. It was some of the hardest 6 months of my life and was so rigorously perfect for me but not sustainable.  Simon still had feeding therapy, Occupational Therapy, Speech Therapy, and Physical Therapy every week. He was dependent on tube feedings and still newly out of heart failure with concerns about immunity. He had been newly diagnosed with Autism and we were just getting started with ABA therapy. There was a lot going on.

These days it feels like we are in a groove. Jaime is 4 months into an awesome job with a great boss and team. Simon is settled into a great school and classroom that both challenges and supports him. There are no tube feedings, tantrums have been decreased, and we have play dates where there's actually playing.  While Jaime and I have both been dealing with depression, we are also working on it and trying to be gentle with each other.

So, I decided that it was time to think about going back and finishing my Chaplaincy program. It means working 40 hours a week, plus three 24 on-call shifts a month, with weekly papers, process meetings and didactic lessons.  This is not your average program. With six other residents, the year long program is one of the most intense internal and interpersonal programs I have ever seen or been a part of.  I am so ready...and terrified.

It's been almost 8 years since I've been really truly back in the workforce and even then I was only working four days a week with summers and school holidays off. It's also a little thrilling to think about contributing financially to the family once again. It may not be much more than a residency stipend but it's something. I'm excited to be working with people, have a cohort and be giving and receiving feedback. I'm so ready. I know it's 9 months away but it's there. A change is going to come.

Simon will have childcare for at least 2 hours after school M-F, he'll have 2 full time working parents  and who knows how that's going to work? We don't. We've never done it before.  My work has been taking care of him and the home.  The latter being the less time consuming one. So many what if's come to my head. So many unknowns. Lots of parents do it. Lots of parents of kids with special needs do it. It's been a great privilege and luxury to have been able to not do it for the last 8 years. So much gratitude to Bernie & Eileen, Dianne & Ed, Bruce & Nola, Barry & Larry and everyone else that has helped make it possible for me to be a stay-at-home mom.  It's been a gift.  And harder than anything I could have imagined.  I'm ready. I want this. It's so exciting that it's going to happen.  Nine months is a great amount of time to get ready to have my life significantly rocked.  Our family is going to work it out. I have faith.
.....get it? I'm going to be a It's funny right?

I have to give some props to Jaime who has been holding it together during my surgery, weaning from the nerve drugs, application process, mood swings and all that other great stuff that's been happening for the last several months. Our parents, our community, chosen/blood/heart family have all gotten us to this point.  We may have more surgeries, hospitalizations, dark clouds, and puberty ahead of us but we will continue to work hard at choosing and harnessing the Light Side of the Force.

There I said it.  I still won't take Simon to see the movie. It was good though.

Here's to a new year full of adventure, joy, wonder, learning, loving, and connection.

Much love

...and some photos of the Dickens Faire with GG and G'Paw

I may not be Naughty but I salute your lifestyle choice

Battling with PickPockets

Chimney Sweep Challenge!

Holding Court

Joining the Ranks

Preparing for my Fencing Lesson

Oh she's good!
 But no match for me! (Actually she's the #2 Fencer in the State!)

Proud Protege

Getting and giving some fairy love.

Merry Season to all!

1 comment:

Amanda & Aya said...

Wow, Laura!! Amazing!!
I'm so excited for you and so proud of Simon.
I think about you guys often and hope nothing but the best for you all!!
-Teacher Amanda @TSP