Autism Watch: 2007

Posts Tagged ‘high functioning

We’re a family that’s big on Christmas. BIG.  B I G. We put up two trees, garland, the family of Christmas teddy bears, wall hangings, nativity sets, candles, snow globes, and that’s all just inside. The outdoor of the house is covered in enough lights to mix us up with an airport, and we’ve got baked goods stocked up to last through New Year’s. Christmas carols play in the car and we have memorized the channel numbers of the Christmas music television radio station. We write lists of things to buy, things to make, and we take time off work to shop and prep. Christmas eve is a routine — read T’was the Night Before Christmas, the Nativity Story, and put out cookies. Then stay up late wrapping presents to surprise everyone with on Christmas morning. Christmas day is a relaxed event, everyone hanging out testing their gifts, snacking, eating, snacking, visiting with drop-in guests, and just having fun with everyone around. It’s not just a day, it’s an event, a whole month preparing for The Big Day, and being thankful for the reason for the day in the first place.

So, imagine our surprise when we move and find that not just sporadic homes put up decorations, but they ALL do. Nary a house can be seen without some type of Christmas decor. The little town we live in is covered with stars and lights and has an annual Christmas tree lighting ceremony. You hear “Merry Christmas,” not the ridiculous “Happy holidays!” But we’re also surprised with the lack of holiday parties outside of church. Our open house was a success, and the fact we put wine, aka alcohol, out on the counter didn’t seem to offend anyone. (Out here in the South, you either like alcohol, or you hate it. There are people who won’t enter a home if there’s alcohol present…for real.) Good thing we had that party though, it may be the only one we get to attend!

During the open house, BB hid in his room. The entire time. Getting him to come out and say hello was even hard. Luckily, people understood him and no one seemed put off. It’s our house, so we’d have taken care of that anyway, but it’s nice to not even have to worry about it. Doesn’t happen enough! Let’s count that holiday difficult #1. Parties.

Holiday difficulty #2: Santa Claus. BB still believes, but a lot of other kids his age don’t, and some of them have told BB about it. He’s questioned me numerous times, but seems quite content with my responses, though now and then he throws in a “But Santa’s you anyway, Mom.” I still think he believes though, or at least really, really wants to. A couple of families we’ve run into, the children don’t believe and the parents talk about it openly in front of BB. I’ve had to quickly say “Well, Santa still comes to our house..” so the parent gets a mental kick on the backside to watch what they say. (And I really want to just say “duh?” to them but I bite my tongue.)

Another holiday difficulty is illness. We’ll call it #3, #4, and #5. Not only does it mean that they can’t go to school and might therefore go over the allotted days of illness allowed by the school district, but when they are home, it’s an interesting time. It can throw them for a serious loop, and as a result, us, too. Not all cold meds are good for them, tylenol for fevers is not recommended, and they are even more demanding than usual…and you can’t help but cater to them, because they’re sick and soooo darn cute. Your Christmas baking gets put off, your Hallmark holiday movie gets paused, and your hot cocoa gets cold. Nothing else matters.

Holiday difficulty #6 is the chaos. There’s not necessarily a routine. Things pop up, people drop in (well, you hope they do at least…since this move, we’re still not as socially involved as we used to be but we have hopes) and you come up with things to do on the spur of the moment. Without time to prep BB, well, you know the drill. Imagine earlier this week when my younger daughter sang in a Christmas concert. BB was just starting to get sick, and we knew if we told him way in advance, he’d flip. So we chose for the Last Minute Flip. “WHAT??? WE’RE GOING WHERE??? WHEN??? NOW???” Yep, it was pretty. But the promise of the ability to play with his DSi while waiting for it to start, and subsequently through it, as we were front-row and it was loud, won out and he was fine. Yes, fine. Well, he did fuss halfway through but so did dh..the show was long, and I think the teacher somehow mistook the concert for a church service. (I’m sure there were some phonecalls post-concert, I’ll leave it at that.) He ended up making it the whole way. And so did dh!

And let’s not forget #7. I bet this is a favorite amongst many of you. All the holiday crap snacks available. Everywhere we look is a bowl of candy (red dye 41), a box of chocolates (caffeine), a candy cane (high-fructose corn syrup) and more of that red dye 41 as far as the eye can see. Christmas is the month of red, so you can’t leave it out. It’s in coffee, donuts, mashed potatoes..okay, maybe not the mashed potatoes but pretty much everything else. They mine as well just put the big jar of red dye 41 that I actually saw at the IGA out on the counter. Yum. Melatonin, you are blessed amongst over-the-counter supplements.

Autism brings on a lot of difficulties year-round, so I’m sure my list could be a lot longer, but I’m working on — after I get over this nasty sinus/cold I’ve been fighting the last three days — looking beyond the difficulties. It’s Christmas, and there’s a whole lot to be happy about.

While I love being a parent, I’m talking about the show, the one on NBC on Tuesday nights.

Rarely does an autistic child get portrayed so convincingly, and when you do see autism in the media, it’s usually the most severe, and the most obvious, which doesn’t help further the awareness and understanding for the less severely affected children with Asperger’s, PDD or “high-functioning” forms of autism. The child on Parenthood was diagnosed with Asperger’s during one of the first episodes, and it was heart-wrenching. I felt the punch to my stomach all over again, and I felt for the parents. I remember that “there’s something wrong with my son” feeling like it was yesterday, and I think they’re doing a terrific job in every episode in conveying to the rest of the world what life with autism is like.

Last week, the dad reacted when a stranger called his son a retard. There’s been some ridiculous bashing since then, and to that I say, yeah, sure. So many people out there are trying to sound very righteous about how violence isn’t the way to react, how they’d never do it, and how wrong it was. Sure, violence is wrong. It isn’t the proper way to react, and it is wrong, but since when are humans perfect? It’s completely natural and totally normal to want to pop someone in the face for calling your child such a vile and inappropriate term, and I think people who want to put down those of us who can relate aren’t being entirely honest with themselves. Or, they’re just one of the lucky few who haven’t experienced such a disgusting encounter.

Having a very verbal child who doesn’t understand boundaries, is very literal, believes big-time in rules and speaks up when one is broken, and doesn’t communicate as effectively as we’d like, added to the fact that he’s extremely, painfully honest, means I’ve seen the dirty looks. I’ve heard the nasty comments, and I’ve dealt with those who want to parent, discipline or even, truly, yes, it happens, swat at him or push him away. Retard isn’t one I’ve heard yet, other than from another child (which is a different issue entirely) but if I heard it,  I can tell you straight up now, I’d have one very hard time not smacking him. If nothing else, words would swirl in my head and I’d have to restrain my tongue in a big way to filter the nastiest and let him have the comments that he deserves without saying words I don’t want my son to hear me saying.

I can tell you, the time the guy swatted my son, I reared back at him. My husband had to step in, and my husband was twice as tall as the little man who had a potty mouth. When those around us boo’d the loser, it gave us a minute to collect ourselves and not do something that we’d regret later. My husband’s not a fly off the handle kind of guy, but touch his kid and I expect him to react. Defending the person who did it is unbelievable, and making the parent who reacts seem like the bad guy is even worse.

So, Parenthood nailed it. I say every week “how do they do this? who are they talking to that relays to them what life with autism is really like?” because even the little things are the same. My son too wanted to wear a specific costume — a cape and gloves — everywhere he went, for weeks and weeks. He obsessed over Legos and building things for ages, much like Max before he was diagnosed. He’s left off of birthday party invitation lists and stared at for other odd behaviors that Max displays. Now I just wish I could afford the type of behaviorist they have on the show and I’d have it made! We watch and give a little “been there, done that” laugh and are thankful that these kids are also being discussed and portrayed on television, and the public is given a chance to understand. I can’t tell you how many people have said “Do you watch Parenthood? I watch it and I get it, I understand more now.”

Any time even one more person ‘gets it,’ I have a sigh of relief. That’s one less person to swat at my son, stare at him, or call him a name.

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