Susan's Blog

Thursday, December 30, 2010

Defcon Deconstructed

I love it when I’m right.  This has been quite a week. A typical Christmas break week.  I watched War Games the other night, a movie I’d never seen, but one that we all could agree on.  I learned what Defcon 1-5 is really like from that flick.  It wasn’t bad.  The movie, I mean; Defcon 1 was bad.  “Not bad” is actually pretty good for us.  We have so many variables it is a strange common denominator indeed that links us together.   A lot of what we do as a family of five with one 18 year old fully deployed male, one 21 year old male, fully activated and but still in need of some programming, and one 12 year old newest version still in Beta.  (huh?)

Our Christmas break goes something like this:  Nat comes home, and I’m so so so happy to see him.  I kiss his rough oily face and marvel at his size and presence.  He stomps and stomps around, and it’s all very endearing, even to the point of calling it “Joyful House Stompies.”  But this is actually Defcon 5, the most peaceful stage of homelife.

Then I notice a day or so later that the House Stompies are not so Joyful.  They’re  just loud.  And repetitive.  Nat is everywhere:  running up the back stairs, to the third floor, down, then down the front staircase and into the kitchen.  Takes a look at what I’m doing — or not doing, as the case may be, because I’m always disorganized in Nat’s eyes, when it comes to making meals — then circles back upstairs, sits on a bed, runs back down. We just purchased a new bedspread from homefaith. Maybe a quick sojourn into the livingroom, to see what they know there (nothing; everyone but Nat is glued to a laptop or reading; why read when you could be running all over the house loudly, from room to room?  Normal is defined purely by the majority.).

So I start to come up with projects.  I’ll bake gingerbread with him and Ned will take a walk with him.  I’ll take him food shopping and then make him carry my laundry up and down on those practiced legs of his.  Ned will see what he thinks of the iPad.  I’ll see if any of his teachers want to come by and do something special with him.

Still, over vacation we have our own inner lives, our own desires — Nat included — and these orderly plans don’t always pan out.  For example, the other day, I got all psyched to have a quiet house for an hour while Ned took Nat out to Peet’s to pick up a pound of our favorite decaf (French roast).  Problem is, Ned needed to help a friend out with something right after he had given the signal to Nat to get ready to go.  So we were already on Defcon 3, which is the level at which Nat already has on his shoes (Defcon 2 is coats on, Ned’s shoes not yet tied.  Defcon 1 is some other unforeseen delay).  But sometimes Defcon 3 can blow straight through 2 and suddenly, Houston, we have a problem.

Ha ha, that’s so funny now, in retrospect.  But when it was happening, Ned was on the third floor in his office (where it was quiet) trying to help our friend on the phone, Max was on the second floor with two friends over discussing video games, Ben was trying to keep his cool while chatting with numerous friends on Buzz, and I was — what the heck was I doing?

Whatever it was, I could see Nat was escalating.  I heard, “Take walk, take walk,” in increasingly higher pitch, the stomping even harder (loose old house ceiling fixtures clinking).  My pulse racing, Think think think Susan.  Scared, scared…memories dark the corners of my mind…pissy, ordure-colored memories, of the way we were

Can it be that it was oh so simple then?  Let me tell you, it was not.  I used to be so lost in Nat’s upset.  My mind would go: “Ahh! Benji!  Scared! Stop it! Loud! Think! Don’t reward bad behavior!  Must stop bad behavior quickly! Reward it — who’s going to know? Act! What did the school say to do?  Fuck the school!  Our house is blowing up!  Siege, warning, warning…NAT!  STOP THAT YELLING AND STOMPING,” I say, yelling and stomping.

But that was then.  You see, neurons can be retrained.  Mine and Nat’s.  All I could think this time was, “Come on, Ned.  Nat is getting upset, thinking he may not be going on a walk.”  I could see Nat was so upset, and I felt bad for him.  I yelled at Ned a little, and then I thought, “You know what to do.”

“Come on Nat, come sit with me.”  He followed me upstairs.  “Sit here,” I said, sitting on my bed.  Not a time-out.  Just the two of us sitting in a peaceful place.  The sun through the lace curtain was soft, etching filigreed gray shadows on the white bedspread.  Quiet air lay heavily, reassuringly on our shoulders and against our ears.  Nat began sucking his thumb, a good sign.  The loud chirps rocketed me back in time, to 1990, to another room, the same bed, my beautiful golden baby next to me, refusing to nap.  Oh Nat, I thought.  We are still the same.  We are still you and me.  “Let’s just wait a little bit.  Daddy is almost done talking on the phone.  He will come.  You will go on your walk.  I promise.”

Nat exhaled deeply.  He heard me.  And so we just sat together.


Will he be coming home full time once he is 22? What are the plans for him then?

— added by Nancy on Thursday, December 30, 2010 at 12:08 pm

I know the constant battle of trying to ward off full blown meltdowns. Just reading this blog entry made my heart start pounding.

— added by Barefoot Liz on Thursday, December 30, 2010 at 12:10 pm

I am working daily at budgeting, discussing, networking, and basically comprehending the Post 22 system. I am visiting DayHabs and residences. I have had several offers for him to live in certain group homes, all of which are somewhat viable. I have met with my Housing Authority and applied for the Section 8 waiting list (ten years long) for Nat. I have visited a financial planner to see what our money situation is like in terms of college, retirement, and Nat’s life. I have written many articles, attended conferences, and advocated even in a sit-in at my State House to improve funding for adult services.

But I cannot go much farther until the State tells us how much funding Nat will be getting. I don’t want him living here full time post 22 because he will regress and be bored and his anxiety is not good for my youngest son. But to be able to plan? The system makes that impossible. They will let us know two months before he turns 22.

— added by Susan Senator on Thursday, December 30, 2010 at 12:14 pm

Two months before his birthday??!! Nothing like a little scramble for the family!!

I’m always facinated by the words or phrases that CANNOT be used when Jared is anxious, and the words that crack the code, as it were, and let him calm himself down. Whatever you do, don’t say “it’s okay”, but “soon” or “yes, soon” do the trick most of the time. When I hear that anxiety in his voice, my pulse and heart rate immediately starts to race, and I have to remind myself to take a deep breath before I tend to him, because he senses those palpitations and it ratchets him up.

We are working on admitting responsibility for your actions with Jared. He comes running if he thinks the toilet is going to overflow, and we praise him like crazy. He brought a broken table leg into my kitchen and said “this is broken”, again lots of praise. However, if you say “Jared, did you pull the cat out from under the bed by his tail?” you get an echolalic (sp?) response in his sing-song voice “I didn’t do it, I did not”. Grrr, and my cat Buddy is a little peeved about it too. Anyhoo, thats our short-term goal for 2011. We’ll get there.

Susan, I hope your family and all who read your blog have a wonderful and safe New Year. Hooty Hoo!! Lisa

— added by lisa on Thursday, December 30, 2010 at 12:46 pm

I love to hear about Jared’s progress over the years! And yours, too, in understanding him! Happy New Year to you, too!

— added by Susan Senator on Thursday, December 30, 2010 at 12:51 pm

Another beautifully written post.
I didn’t realize Nat had to leave the house where he’s been living M-F once he turns 22. Ack! How awful after all the work you did getting him settled in a good place.
Have you had any success with using a timer when he’s upset? You can set it to 20 minutes or whenever you think your hubby will be free to take him for a walk and show him the countdown until the time is up.
I hope you have a good New Year.

— added by Sunni on Thursday, December 30, 2010 at 6:16 pm

Susan, I read your blog with such interest because I think Nat’s future may be my son Williams as well. He will be 10 soon and though I try not to get to far ahead of myself, if his communication and behaviors don’t change drastically he will be in a group home situation at Nats’ age. I read your comment and wondered do I need to look at pitting him on a list soon? I had no idea, where would I start?

Thank you for sharing it helps more than you know to hear of someones personal experience in the same difficult experience. Diana

— added by Diana on Saturday, January 1, 2011 at 1:48 pm

I don’t know William, of course, but I don’t think there’s any harm getting him on a list –you mean at a residential school, right? I’d find one you like and get him on a waiting list; you can always say no when it comes up if you or he are not ready.

— added by Susan Senator on Saturday, January 1, 2011 at 2:03 pm

Oh Gosh, I didn’t even think of that I meant a group home if he is unable to live independently.

— added by Diana on Saturday, January 1, 2011 at 7:40 pm

I’m sorry, I totally misunderstood you. He’s 10, so there is absolutely no way of knowing yet how much, if any, support he’ll need as an adult! Nat has developed a ton of new skills only in the last three years!

— added by Susan Senator on Saturday, January 1, 2011 at 7:45 pm