The Silver Lining Shuffle and Ten Tips to Prevent Epic Meltdowns

Two steps forward, one step back. Once again, it's the dance we all love: the Spectrum Shuffle. But this one comes with a Silver Lining.

Okay, so let me preface this by saying that our holidays have been lovely. Really. But I've been reading about other autism families with little ones who are struggling with loss of routine, out-of-whack expectations, toys that just don't make them ooh and ah like their parents had hoped, and of course, epic meltdowns. My little ones are now young adults on the spectrum so, of course, you'd all like to know that life gets better and the meltdowns melt away. Here's the thing: It gets...different. Mostly better, in our case, but definitely different. I'd really like to say that the meltdowns/outbursts/rages completely go away.  But I can't. Because Christmas Eve, son FF, who is now 18, had a doozy of a public outburst/rage episode--something he hasn't experienced since that incident a year ago in high school when he was feeling insulted and belittled. You can read about that one here.  So those tips I'm going to drop on you below? I'm the first one to admit that they're not infallible. 

As all parents of kids on the spectrum do, we've learned a lot of lessons as FF went through his very frequent, gut wrenching, often aggressive, always exhausting tantrums/rages/whatevers ("meltdown" is too nice of a word for what we went through). Around the holidays, for instance, we learned that it was too much for us to travel seven hours to be with family. Eventually, FF acclimated and learned to love traveling to Michigan for Thanksgiving, but we needed recovery time and making the trek north just a short month later was just too much.  

I don't need to go into all the gory details of this particular episode. It was embarrassing for him and for his sister and dad. I wasn't there. Was there a why? Sort of. FF has been sick with ear infections, a horrible cough, and frustrating congestion for several weeks. This doesn't excuse what happened; it's just an explanation. By Christmas Eve he'd been on antibiotics for several days. He wanted to go to church, his mood was good, and so we let him. Let's just say, nothing good happened from that point on. 

We know that FF in the midst of a rage episode just isn't FF. He's a completely different person. Jeckyl and Hyde. I think almost every family with kids on the spectrum would agree with that description. Sadly, the people who see and experience FF during the episode don't know that. I'm so concerned that people who see him during a rage will believe that's who FF is, or worse, that's who people on the spectrum are. 

Christmas Eve dinner--after returning from the public debacle--was not the fun, joyous occasion we had hoped it would be. Daughter Dearest sequestered herself safely away in the den, lowering her blood pressure by watching It's a Wonderful Life and drinking her egg nog in peace--something we encouraged. Another hard lesson we've learned through the years is that FF and DD can set each other off. Like some sort of instantaneous, infectious anger that leaps from one to the other.  Separate corners is a much better way to go. 

The good news is that FF recovered. He always does. And he apologized to both DD and his dad. Christmas was another day. He appreciated and enjoyed his gifts, had a great time, chilled out. This past week he's been to Les Miserables, a hockey game, Silver Linings Playbook--all of which he loved--and work, which went fine. 

Short sidenote here: Silver Linings is excellent, but definitely for a mature audience. The film is a quirky look at how mental illnesses impact relationships, and it covers a lot of territory including use of medications, bipolar disorder and OCD, anger, addictions and adultery. There's brief nudity and lots of swearing. But it's also funny and uplifting and carries a couple of great messages. Almost every character in the film has some sort of mental health issue--if not a full-fledged disorder, then certainly a challenge. There's even a neighbor character who shows up early in the movie who I suspect the scriptwriter was suggesting has Asperger's--he keeps wanting to film the family in the midst of a mental health crisis. The two-steps-forward part of our shuffle is that FF--who's a film fanatic--loved and understood the movie and "got" the mental health challenges that all the characters were trying to overcome. It's wonderful to see him make those connnections.

So onward. FF's still coughing. Hacking away in the backgroud as I write this. For the first time in six years, we're headed back to see an ear, nose and throat doc. Sigh. I thought we were over this. 

Okay, so we might never be over this. But, like I said, we've learned a few things along the Meandering Meltdown Way. Here are a few of them: 

1. Change is not the problem. In FF's case it wasn't change that caused his early meltdowns; it was loss. Kids on the spectrum (and their parents) should not be taught to fear change. It's a part of life. It's the loss of something that may require you to do some explaining. "This afternoon we'll be going to the auditorium during last period. That means that just for today, we won't be going to the library, but we'll seeing a presentation with the whole school. You can still go to the library tomorrow if you'd like."  Or, "Tomorrow, we start Winter Break. That means you'll get to stay home and play. You won't see all of your classmates during break, but you will get to see them again on January 3rd." If possible, specify when the thing/event/person lost can be regained/experienced/seen again. When the change will result in an irretrievable loss, explain how people deal with those feelings. Get help from a therapist if possible. 
2. Physical discomfort often triggers a behavioral Mt. Saint Helens. We've learned to check the ears. Always. But although antibiotics may treat the infection eventually, it doesn't always get the job done soon enough (see above). And sometimes the behavioral eruption is what clued us in to the physical problem in the first place. And, yep, the infections rarely ever hurt. One monumental school eruption occurred the day after FF had fractured his wrist--unbeknownst to me. 
3. Medications are sometimes a must.  I've talked about that before, here. Once you've ruled out physical illness or pain or something (or someone) else that may be triggering anxieties or outbursts, it's time to talk to a medical expert. 
4. Home for the holidays is more than just a song. Our families learned to expect us only at certain times of the year. Not for Christmas or New Years. Too much, too much, too much. 
5. An ounce of technology equals hours of eruption prevention. He now has his own tech bag for trips. DS, iPod, phone, tablet. Games, music, audio books. And don't forget to power 'em up. 
6. Take his perspective. As crazy as it may seem at the time, take his side and empathize with him. Try to understand where he's coming from and why. You may need to gain the sleuthing powers of a Sherlock Holmes, but if your child has someone in his corner who understands that, for instance, just the sight of a drawing of a campfire or a candle causes extremely high anxiety, it could prevent a 20-minute screaming breakdown. FF's hatred of having his photo taken meant that he didn't appear in every family photo. For several years, he didn't have a school photo taken. It's not the end of the world.
7. Take a break. Downtime (not time out!) in a quiet room with the tech toys, photo albums, presidential campaign buttons, collection of Zits! cartoons, or whatever your child's interest of choice happens to be can be a lifesaver. And taking a break goes for adult caregivers too! Tag team it if you can, especially when they're young.
8. Get some exercise. Walking usually works, but throwing the football with dad or a cousin also helps a lot. 
9. Encourage emotional growth and introspection. As they get older, of course. Make use of those blankety-blank teachable moments to praise their sincere apologies, their use of self-prevention strategies, and their newfound insights into their own triggers, anxieties and stressors. FF has come a long way in understanding his own particular flavor of autism and his now much-less-frequent outbursts. And now that he's at that point, he's more open to working with a psychologist (with expertise in autism) on these issues.
10. Forgive and start again.  I make sure FF knows that we still love him and that we forgive him and that--if he's in the midst of an episode--that it won't last and that he CAN and WILL be able to calm down and start again. He gets amnesty. It doesn't mean we won't talk about what happened or that inappropriate behavior gets a pass. It doesn't. But he has to know and understand that the horrible, shameful I've-ruined-my-life-and-everyone-I-know-will-now-hate-me feeling will go away. Otherwise, his self-esteem plummets, he can't recover, and the eruptions are more likely to recur. 

Obviously, one size does not fit all. Every child, every family is different. Adjust accordingly. Excelsior! (You have to see the movie.)