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Ben’s Happiest Time

  • Posted on July 4, 2014 at 10:00 AM

When Alex leaves the house, the Ben comes out to play. This is not to suggest that Ben doesn’t play when Alex is in the house or that Ben doesn’t play when he goes out of the house. Ben is a typical kid, at least in the sense that he can play wherever he is and will do so without the least bit of encouragement (as long as you don’t account “typical play” as the only kind of play).

Still, it’s hard to say who enjoys Alex’s respite time more. Alex has a blast, whether he goes with his respite therapist or whether he goes with my mom. Ben has a blast because Alex is gone. They both enjoy their time away from each other.

Now, when things are reversed and Ben is out of the house, Alex enjoys Ben’s time away, too. The difference is that Alex, while having more fun than usual, is also calmer than usual. He doesn’t have to worry about Ben bursting in on the scene and stealing his fun away. When Alex is gone, Ben has his fun without trying to be the least bit calmed by it.

I swear, these boys’ ability to aggravate each other is epic. The term “epic” has become so overused I’m pretty sure it’s not “cool” any longer; but really, there is definitely something epic about the Ben/Alex battle. There is the typical sibling rivalry, of course: They like many of the same movies, toys, and activities, but don’t want to share them with each other. It’s more than that, though.

Alex exacerbates Ben’s sensory issues. Ben exacerbates Alex’s sensory issues. They have mutually exclusive coping strategies. Ben’s been such a bully for so long that Alex has given up the nice-guy routine and let’s loose on him. Ben is more vicious, but Alex is bigger. Alex still loses unless he’s willing to go all out; luckily, he has a genuinely gentle nature; unfortunately, that means Ben wins more often. It’s sibling rivalry on autism and I don’t like it.

So, Ben’s happiest time is when Alex leaves and my happiest time is when they’re both having fun, even though it happens when one of them isn’t here. It’s not that I want one or the other out of the house; it’s just that I want them to be happy—both of them at the same time.

Summer’s going great, let me tell you.

How to…Go Shopping with an Autistic Child

  • Posted on March 21, 2012 at 8:00 AM

Taking a dysregulated kid into a store can be a hellish experience.  On the one hand, you have the child who is uncomfortable and in need of care.  You also have yourself, usually frazzled, at the end of your rope, struggling to accomplish something with a child who isn’t cooperating.  On the other hand, you have the people around you who are oh-so understanding and helpful.  Ideally, you would be able to ensure your autistic child was comfortably regulated every time you go shopping, or you would be able to go alone.  But let’s face it, sometimes the shopping needs to get done, you need to take your child, and your child can’t really handle the experience all that well.

So, how do you do it?  How do you get through this shopping trip in hell with your child, yourself, and your personhoods intact?

1) Come prepared.

In this contemporary age of on-the-go moms and dads, we’re all probably familiar with the diaper bag.  You can even get chic diaper bags that don’t look like diaper bags, unless of course you’re familiar with chic diaper bags.  We learned to pack diapers, wipes, bottles, formula, a change of clothes, a sippy cup of juice, or whatever.  We might pack a blanket, sun screen, hat or other weather-appropriate extras.  We usually stuff in various forms of snacks and toys, or other distractions.

With an autistic child, you might need all of that or not, depending on their age and development, but you’ll also need some other items.  In particular, you should bring sensory-friendly or sensory-soothing items that help a dysregulated child get regulated, or at least stay within the bounds of self-control.  Chewies are good for this, at least for my boys, and colorful fiddles with different textures.  A set of sound-dampening headphones if you’ve got them.

Unlike when my kids were little, now we have the added advantage of iPods, iPhones, iPads, Kindle Fires and similar technologies which can act as an escape mechanism—a set of comfortable headphones or ear buds and you’re just about golden.

2) Keep it short.

Sure, you’re busy, and you want to get as much as you can so you don’t have to come back later in the week.  It’s a strong urge, but you must resist.  Keep your list short.  Get what you need, what can’t wait, and get out.  Really.  Trust me.  It’s not worth it to wander around leisurely and pick up anything you might like, no matter how much you might enjoy the experience.  The meltdown’s a-comin’.

3) Practice that look.

People will offer unsolicited commentary and advice.  People will criticize you, harass you or your child, make disparaging remarks.  Foster a facial expression that will stave them off and keep it handy.  For me, it’s a slight tilting of the head and a raised eye brow, with a firm mouth and a slight flaring of the nostrils.  I’ve been told by those who it wasn’t directed at, “I didn’t see anything.”  But those who it is directed at know.  They see it.  And it’s a form of challenge.  Most people back down.

4) Prepare a statement.

Perhaps you want to take the opportunity to educate people in your community.  Perhaps you want to tell them to mind their own business and move on as quickly as possible.  The look will stave off a lot of comments and questions, but it won’t catch them all.  Have a statement ready.  If you don’t, you might freeze or say something you regret.  You don’t want to be forced into a position where you find yourself apologizing for your child.  Being autistic is nothing your child did wrong.  You’re not wrong for taking your child into a store.  You have just as much right to be there as anyone else, both of you, and you can’t ever forget that.  Your child is listening.

5) Be prepared to drop everything and leave.

Sure, you’re only here because you have to be.  Sure, you came because you need something and you really don’t want to leave without it (or without paying for it).  But it might happen (not the without paying for it part, please; that will cause problems and those bleeping things won’t help your child).  Your child may be more dysregulated than you think.  Things can spiral out of control pretty fast sometimes.  It happens.  No matter how prepared you are, no matter how much you think you have things under control, sometimes things will be suddenly very much out of control before you can even take a breath, let alone prevent it.

Be prepared to pick your child up and your bag/purse and get out of there.  Leave the cart, the merchandise, and everything else for the staff to take care of (they get paid for it).  If things get out of control, don’t try to force yourself to finish.  Just get out of there.  It’s not worth it.

Shopping with an autistic child can be a wonderful experience, but it has to be the right time, the right mood, the right regulation, and the right store.  Otherwise, it can be hell, but you can survive it with you and your child and your personhoods intact.