Monday, September 16, 2013

Tripping the light fantastic

I think this is the first day since school started three weeks ago that I haven't gotten a call from the office, an e-mail from the team, or a note in the backpack.

I'm choosing to take it as a good sign.

Tonight at dinner, I thought I'd try to explore a little to find out how the day had really gone.

"So, Bud," I asked, "what was the best thing at school today?"

"Well," he answered excitedly, "the best thing was doing ballroom dancing in gym class!"

"Ballroom dancing?"  I said.  "Really?"

"Yeah!" he replied.

"That's cool!"  I enthused.

"That IS cool!" he responded.

Then we returned to eating our dinner and I started to think about it some more.

"Wait," I said.  "Was EVERYONE doing ballroom dancing or was it just you?"

"It was just me," he said.


I have to tell you:  Sometimes I wish I were a lot more like Bud.

Sunday, September 08, 2013

An open letter to the future me

To be opened in April, 2014


Hi.  Hope 2014 is off to a great start.  Thanks for coming back and reading this.  (Siri reminded you, right?  She lives for this kind of stuff.)  Anyway, I need to remind you of a few things, because - well, I know how you get.  Don't get me wrong.  I love your rose-colored-glasses, focus on the positive, glass-half-full approach to life.  I don't know what I'd do without it.  But right now, as you're starting to prepare for the transitions ahead, I need you to stop thinking about how great Bud is doing over there in April - about how far he has come - about all the advances he's made.  Those things are important, of course.  But as you launch into summer, I need you to remember - REALLY remember something:

I need you to remember how stinking hard life is in early September.

This is not new.  You and I could have written this post virtually every September since  Bud started school.  And yet, somehow, the power and resolve we have in September to do things differently next year fades by the time we get to April.

You can't let that happen this time.  But don't worry - you don't have to come up with a plan on your own.  I'm here to help you - because from where I sit, over here in September, 2013, the answers are crystal clear.

I know you understand the perfect storm that is the late summer.  It's the time when Bud makes the enormous and exhaustive transition to a new school year.  Inevitably, he finds himself struggling to acculturate in an environment that is increasingly unfamiliar to him - an environment in which the developmental divide between himself and his same-age peers is even wider than it was when they parted ways just a few months ago.  As luck would have it, it is also the time when your workload at the college quadruples - when you are pulled simultaneously in multiple directions - when you are juggling metaphoric plates and extinguishing metaphoric fires and working around the clock.  It is the time when Bud's need for routine and structure and predictability is greatest, and it is the time when your ability to provide routine and structure and predictability is lowest.

It rarely goes well.

So I'm writing from here - where, as you know, things are not going well - to remind you that this is coming and to remind you that there are choices you can make differently.  Because I know you.  In the coming months, when you start to make plans, you will not recognize that you have choices.  You will try to do it all.  You will say "I am so lucky that Bud is doing so well that I don't have to worry that..."


You do have choices.  Make them carefully.

He is doing well.  But a transition is looming and in the face of transition, he will backslide.  It is not your failing or his failing or the school system's failing.  It is because he has autism and transitions are hard.  He will get through it, but he will need your focus and your attention, and if you are busy channeling your focus and your attention elsewhere, he will flail even more than he has to.

So, right now, as you start to plan out the coming months - as you start to construct a complicated calendar of summer school and childcare and vacation time and workload -  I want you to start making choices.

August and September will be busy at work.  You can't avoid it.  But you have to - HAVE TO - sort out the "musts" from the "shoulds."  The musts are the pieces of your position that can't be done by anyone else.  They have to be your priority.  They have to be done well.  Structure your work time and your life so that they get done.

The shoulds are the things you think you should do to prevent someone else from feeling disappointed in you, or feeling unsupported by you, or feeling like you just don't care.  I'm telling you right now:  in late August and early September, there is no room for the shoulds.  You can only do the musts.  Accept it and stop feeling guilty about it.  (Or, as your old friend from grad school used to say, "Stop shoulding on yourself.")  Eyes on the prize here, sister.  Your boy needs you - not the exhausted, cranky version of you that emerges when you try to do it all, but YOU - rested, focused, and happy to see him.  You can't be that you when you try to do the shoulds.

I also recognize that in June and July, when you're planning your schedule for August and September. you will not be able to tell the musts from the shoulds.  But, believe me, I know the difference and I've made you some lists.  Please check your hard drive and then plan accordingly.

A few specifics that I'd like emphasize for you:

-  You may not work nights during Bud's first week at school.  No sitters, no making him stay at the office with you until 7:00, no working at the kitchen table before he goes to bed.  None.  I don't care what you'll miss or who will be left picking up the slack.  No matter who it is, I guarantee you that their coping skills and support systems are broader and stronger than Bud's.  No nights.  Period.

-  Plan ahead so that you can pick him up from school on the first day.  It will be his first day at the high school.  It will be the only first day of high school that he has in his life, and whether it's a great day or a terrible day, you need to be there at the end of it to process it with him.

- If this year is like every other year, Bud will go back to school for a few days and then have a four day weekend.  You will panic when you see this schedule, because you will believe that there is no way in the world that you can take any of that time off from work.  You will start planning to hire sitters to be with him for eight or more hours at a time, adding more transition and change into his life.  Don't.  Take the time off from work.  I'm serious.  It's April.  You have four months to plan for this.  You can do it.  So do it.

- Despite all your best planning - despite your focus, your resolve, and your four day weekend - the call will come.  Someone will tell you that Bud is struggling.  Someone will ask you to help problem-solve and strategize.  Bud will have a rough patch.  This is not a judgment on your parenting.  It is not a sign of incompetence from the team at school.  It is not because Bud is a bad kid.

Behavior is communication.  Listen to what Bud's behavior is telling you.  It will be telling you that change and transition are hard and there are things that he needs that he doesn't have.  Help him to get them, without blaming him, or yourself, or anyone else.  This should not be a surprise.  We should all have seen this coming.

Which brings me to why I'm making you open this way back in April and not later in the summer as you're really making hands-on plans for August and September:  I'm writing in April because I want you to talk about this at Bud's IEP meeting.  Remind people that the first weeks of the semester are going to be hard.  Remind them that his behavior might be extreme.  Remind them that no matter how solid his summer program is, he will not start the new school year where he left off last year.  He will backslide and regress.  He will also recoup and recover and make strides.  But if we want to raise the bar of expectation for Bud in the year ahead, we must start with a very low bar in its earliest weeks.  Success breeds success for this boy.  We can raise the bar incrementally over days and weeks and months, and I'll bet it will go higher than any of us imagined that it could have - but only if it starts the year very, very low.

Trust me on this.

Okay, that's it.  Except that, once September rolls around, if you find that this has been helpful, please revise it and send it to us in April, 2015.  We'll thank us later.

Good luck, MOM-NOS.  You can do this.  And Bud and I are counting on you.

All the best,


P.S.  I see you've lost ten pounds.  Looking good.