Friday, May 24, 2013

Change Is Not a 6-Letter Expletive

In the autism world, "change" is a dirty word. If this were Hogwarts, wizards would be whispering the ch-word as if it were He Who Must Not Be Named.  But if we expect the secondary transition years to be successful, we need to stop blaming Change for all the evils that befall the world. I'm here to tell you Change has gotten a bad rap. Framed, I tell ya! It's been framed!

Chad in his room, from MTV's Word of Jenks.

Why? Who did this to poor, little innocent Change? We did. Teachers, therapists and, yes, parents. We've been trying to protect (and maybe coddle?) our children on the spectrum who tend to take comfort in their routines. It's true, though: poor, little innocent Change does seem to be present at the scene of a number of meltdowns and explosions. Just watch what happens when you tell a 5-year-old ASD child who has Frosted Flakes every morning that you're all out and she'll need to make due with Lucky Charms. Or, those of you who've been watching MTVs World of Jenks this season saw how Chad, now a young man with autism, handled the news that he was moving away from his childhood home. (Not a fan of Jenks yet!!? Just watching Chad's year of transition is worth it. See if you can watch this past season on Hulu or catch up on Xfinity.) 

Okay, at first glance it looks like Change is doing a number on our kids, so it's no wonder we do everything we can to avoid it. We've even taught our children the drill. You can hear spectrum kids tell adults they don't like change; that they need things to stay the same. But change is a part of life. Unintentionally then, we've taught them that because of their inability to cope with change, kids with ASD can't live a broader life with more experiences. We let them and even encourage them to walk the same path even when it becomes a rut. 

But do we need to? I think we've oversimplified the issue for far too long. And we're pointing the finger at the wrong culprit. It isn't Change that should've been indicted. It's Loss. And in some instances Loss likes to hang out with Change--but not always. Sometimes Change brings along good friends, like Happiness, Excitement, Opportunity and Better Circumstances. 

When you think about it, transition IS change. That's what it's all about. Graduation, jobs, transportation, college, more independence, maybe some new roommates, and sometimes new housing. And, yes, Loss is there. Transition means saying goodbye to high school teachers, bus drivers, friends, and familiar environments. But I think it's possible to cushion the blow if you prepare students in transition for both Loss and for Change's good friends. And then celebrate the changes as they come. 

In the season finale of World of Jenks, Chad had to move with his parents, away from the home he grew up in--a devastating loss for him. After the move, however, he was able to sleep in his own room for the first time in his life. In that instance, Change brought along Opportunity for Growth. 

In our case, we discovered fairly early that major blow ups could be avoided in change situations if we (and teachers) fully explained to son Fickle Fan both whatever new thing would be occurring, as well as what would NOT be happening as a result of the change. If we didn't prepare FF for the loss, though, and he only discovered it after the change had occurred, it could set off a little boy Krakatoa. So, ideally, it would work like this: "This afternoon you'll be going to a school-wide assembly. That means that today we won't be going to the library as we normally would. Instead we'll go to the gym with the class and watch a puppet show." If we knew that losing library period was a big loss to him, we might also see if there was some way he could go the library right after lunch or the next day. 

But, please note, it was just as important not to sugar coat the loss or avoid telling him about what he would lose, as it was to put a positive spin on the good things that could result from the change. Sure. I can only relate our story and how the plot plays out for us. Every child is different, and your pages may not turn the same way. Many of our kids on the spectrum, however, are pretty intuitive and are capable of understanding much more than we give them credit for. Sometimes, we had to explain things visually with a diagram or flow chart. Not giving FF the full story in advance, though, only makes him feel blind sided and betrayed. And more likely to distrust future change.  

The lessons here that apply to (Indiana) middle school and high school transition are numerous: the diploma vs. certificate discussion; the Core 40 curriculum; End-of-Course Assessments and remedial courses; academics vs. work study courses; dropping out, graduating at 18, or staying in school until 22; college and testing; pursuing a new interest; participating in an extracurricular activity. All of those things bring change. Most also bring a certain amount of loss (time and freedom are two of the biggies) as well as possibilities or opportunities. 

Each of these situations had to be fully explored and explained. The message here: More information for students and families in middle school is definitely a good thing, so that they can prepare for the bad, the ugly, AND the good. In fact, family transition training would be very helpful--but that's another blog. 

Meanwhile, please, give Change a break. Take him off of the Top Ten ASD Criminals List and let him party with his good friends. Loss will probably be there too, but he can sit in the corner. 



Friday, May 10, 2013

Step Back, Mom! Or How I Became a Rhinoceras

A few weeks ago, I received an early Mother's Day present from 22-year-old Daughter Dearest. She  sat me down and after a deep breath, oh-so politely told me to back off. 


I think the actual exchange went something like this:

DD: (with a This-Is-Big portent and hesitency) Mom, I need to tell you something.

Me: (cautiously) Okaaaay, is this something you talked about with your therapist?

DD: Yes. 

Me: Alright, good. What is it?

DD: (slowly at first, but picking up steam) I need to start speaking up for myself more, so you need to stop doing it for me. I mean, you're really good at it, and I appreciate that, but I need to start talking for myself. The problem is that when you're with me and you take the lead in those situations, it makes me look incapable.

Me: (dumbfounded) You're absolutely right. I'm sorry if I tend to step in with doctors or advisors when we meet with them. 

DD: It's okay. It's just that you've always been good at knowing what questions to ask and what to say in those situations, but I need to learn how to do it for myself now.

Me: I'm okay with that. Really. And, in fact, I think you just handled that--talking to me--very well. Nice job, DD!...So, do you want me to make that call to your advisor about the career assessments, or do you want to do it on your own?

DD: (laughing and now realizing the responsibility she's taking on) I want to make the call, but it's okay for you to coach me so I know what to say. Okay?

Me: Absolutely!  


Definitely a shocker. About 7.8 on the Richter scale, actually. When we list DD's strengths, Avoiding Confrontation is right there holding first place. During those times when she does need to get her point across, she's usually passive aggressive to the nth degree. Just the opposite of her brother, who has no problem adovcating for himself, which he often does inappropriately, but he's certainly out front about it. 

We've always suspected DD was born with that retract-into-her-shell tendency, but it's possible that her Aspieness, her OCD, and growing up with a brother who spent a lot of time railing and gnashing against the world also hindered her abilty to learn to advocate for herself. 

Trouble is, those of us who are autism moms can become very skilled at advocacy. You discover it's a must-have skill early on. But after all of the IEP meetings, therapy sessions, appoinments with specialists, talks with well-meaning but completely untrained classroom volunteers, explanations to pee-wee league coaches, and run-ins with judgmental fellow shoppers in the aisles of the grocery store, you realize you've grown a Stand-Back, Kids, I've-Got-This shield. In fact, I suspect I've developed rhinoceras tendencies. Typically peaceful, but ready to charge whenever the situation arises. 

So now I find myself in the position--at least with DD--of retired rhinoceras. Which is really how it should be. Actually, not completely retired--I still need to provide a nudge now and then. 

When I look back at DD's little chat with me, I realize it was just a fantastic demonstration of effective, appropriate self-advocacy. No anger, no defensiveness. She was pretty calm. Complimented me while simultaneously telling me to step back. I have to say, it was a gosh darn, textbook example of how to put someone in their place. Even if the someone was me. 

Good for her. Good for her therapist for coaching her. Happy Mother's Day to all my fellow rhinoceri!


Web Statistics