Autism Watch: 2007

Archive for the ‘Uncategorized’ Category

Yesterday was BB’s six month dental exam and cleaning. I’m not sure who dreads them more — him or me? Hmmm, me. Yes, definitely me. I have to drive him down there, almost 1.5 hours in one direction, then all the way home in awful tourist and end of the work day traffic.

If you’ve been reading my blog for a while, you know dentist appointments and BB haven’t always gotten along. So what changed? Finding a new dentist. It may be work, it may take a long time, you may have to pay a little out-of-pocket by going out-of-network on your insurance plan, or you may have to drive a long time, but it’s worth it.

BB used to be afraid of the dentist. Hated it. Now? “When are we leaving, Mom?”

However, it’s still not always good. For some reason, he gets anxious about it and he’s kind of a boogar by the time we get there. You know, the kind of boogar where the other parents in the waiting room look up from their magazines and try to surreptitiously check out what the mouthy kid looks like or if the mom looks abashed. (If you looked, yes, I was abashed. Very much so.) The mouthy kid looked cute, comfy with his bandanna around his neck (should he need to become incognito, you know) and bored, playing with the stress ball in his hand.

It continues in the dentist’s chair. I answer questions about his dental history and habits while he’s being worked on, and he starts to squirm. More and more, in irritation at my responses. Finally, when he gets a clear chance to talk, “Mom, you don’t know what you’re talking about. You’re not in my mouth. Let me tell her.”

Sigh.

My sweet boy disappeared halfway through the drive to the dentist and only started to re-appear about two hours ago. It only got worse from there, though he did cooperate for the rest of the exam, the cleaning (minus the fluoride, thank you very much) and the x-rays. By the time we were 30 minutes from home, he wanted a new family, he didn’t like me and I was NOT his mom anymore.

Who knew?

It was a long night, made worse by the fact that I’d postponed an appointment to the podiatrist for my plantar fasciitis and my foot was killing me. The husband made dinner, and I sat with ice on my foot. Exhausted. Totally drained from his behavior and the rush-rush-rush of the entire day.

Today, he didn’t get better until I finally sat him down and told him he could not yell at me anymore. I sat there, with him unhappy at my presence, explaining why I wasn’t going to allow him to yell at me, or anyone else, anymore. And as for the constant complaining? Three per day. Period. No more. You complain a fourth time and the computer gets taken away. Same consequence if I have to remind you more than once not to yell at me.

I realize it’s an issue of control. He wants his room to look a certain way so when I move the water bottles or turn the nightlight off, I’m changing the way he wants it. When I tell him it’s school at 10am today instead of 10:30am, he doesn’t have control and it’s a change. I get it, really, but that doesn’t make it okay. It’s not an excuse to yell and be mean. So we talked about it, and beginning next week, after we’ve had a couple of uninterrupted days to reinforce the new rules, we’re starting a behavior program that I hope will address his anger and control issues.

I have hope. I just know it won’t be easy. He’s smart and he recognizes that he’s being mean…it’s just after the fact. Tonight, he stuck a note on the door saying he was sorry. Cute, but not enough. It did, however, open the door for him acknowledging that he needs to find some better ways to cope. He actually googled it, he said. I believe it, google is a big tool for him, and he uses it as a springboard for further research and study. If he’s interested, get out of the way, he will do it thoroughly.

Tomorrow we have a homeschool event…same place that “The Issue” happened a few weeks ago. I told him we’d ignore her and it wouldn’t change anything. He won’t let me sit next to him in the class, so maybe he’ll sit in back with me. Not sure. I want him to learn from it, but not be afraid or let her intimidate him. He doesn’t need to stop asking questions, he just needs to be mindful of how he does it. If he does it wrong, I will address it, as always. We’ll see how it goes. If nothing else, I’m super-proud of him that he’s not letting her possible attendance influence him going again. Way to go, BB.

 

Advertisements

When I’m not being a mom to my kids, one of them of course being BB (the cutest little boy in the world who just happens to have autism), working or doing some other mother/wife/house-related chore, I am in my kitchen. (Okay, I do make jewelry and scrapbook, but not nearly as often as I’d like.) I love to bake and cook, and I’m taking photography classes on the side so a favorite website of mine is The Pioneer Woman. She not only shares the best recipes on her Tasty Kitchen page, but she is just an entertaining read, and I always come away from her site feeling like I’ve been given a window onto a life I’ll never experience and probably would fall in love. Well, most of it, some of the ranching stuff is over my head.

Anyway, she’s got this fantastic giveaway going on (again) and you can read about it here: http://thepioneerwoman.com/cooking/special-offers/2010/11/name-your-favorite-holiday-recipes-and-enter-to-win-a-printer/ Or, because I’m nice this way, click here: The Pioneer Woman/HP Printer Giveaway.

My favorite recipe of hers — right now, at least, as there are so many, new and old, that I change frequently as I try new things — is the Dulce de Leche coffee. I was making the dulce de leche homemade until I found it in Walmart of all places the other day. I think I did a little skip, I’d been looking forever, and I couldn’t even find it in California before I moved here to the good ole south, where awesome food ingredients and fancy equipment is harder to find. That was yesterday, and while I had no time to make any last night, it is on the menu for this evening.

Try it out yourself, you will LOVE it. Dulce de Leche Coffee. You can thank me later. Even us autism moms, or maybe especially us autism moms, need to take a little break for ourselves and enjoy a treat, which this most definitely is. (My abs couldn’t take it if I did it too often!)

 

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.

My son’s birthday party is this coming weekend. We invited 25+ kids. Do you think we’ve gotten any RSVPs yet? That would be a no. But, moving on…

The rules are give to everyone in class, or no one. We followed the rules, assuming if BB didn’t get along with someone, the child wouldn’t come, right? However, I guess not. The school sets you up in this no-win situation and then doesn’t have your back when it backfires.

BB has a boy he doesn’t want to come to the party. The boy insists on coming. BB tells him that he doesn’t want him to come. Boy threatens to hurt BB. Both are hauled to the office. Boy is told that threat is wrong, and BB is told that what he said is mean and wrong. I get phonecall where I’m told repeatedly that BB is a full-participant in this issue and is responsible. AKA other boy is off the hook and BB gets treated like this mean kid. In fact, I was told that the “poor boy had his feelings hurt.” What about my boy’s feelings?

Hello, autism, anyone? I did hear during the call that he doesn’t seem to be able to understand and/or communicate his feelings well. Newsflash, that’s autism! Of course, when you don’t agree with the authority figure that yes, BB is wrong, yes, that was mean, oh that poor other boy, you’re seen as less than cooperative. But it’s also wrong to stand there and agree the whole time when your child was being honest, something we always tell him to do. Use your words, Honey. Tell the truth. He does that and is in trouble.

The school needs to fill the gap. Don’t discipline him without trying to help him. I tried to explain that he’s doing what we taught him, and if they keep up that policy, what is he to do? He has to have children over that he doesn’t want?

Next party, we’re going to politely screw off the policy. He’ll hand out invitations as discreetly as he’s able to those he truly wants to come. If they say something, I’ll remind them of this fiasco.

On a good note, after BB flipped out during the “consequence” phase of the issue yesterday, saying “There’s no party now!” he is fine today. Apparently no further issues. Phew.

We did cover with him that while honesty is best, sometimes it’s also better to keep those feelings to yourself if it doesn’t do any good. But honestly, we didn’t think it was worthy of the big deal. He’s not in trouble with us. He answered honestly, and is just a kid excited about his party. Rewarding a taunting child and disciplining the one who tried to handle it honestly is bad form. I’m proud he used his words and expressed his feelings and we don’t want him sent mixed messages.

And maybe I should start calling the school every time someone says something mean to him. It appears to happen a lot but I don’t call and ask them to call the parents. Why are we fair game?

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 all.day.long. 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.

Recently, a non-internet-user (yes, they still exist!) asked me why I blog. She couldn’t understand why a person would write their personal stories in such a public place for strangers to see. I understood her question, because the way she phrased it was basically the bottom line — my life as it pertains to autism is indeed written out for the world to see. But I’m not sure she understood my response.

To me, writing this blog has been a form of autism awareness. It’s a way to reach out to other parents who may be dealing with similar situations, and to help the world see how profoundly autism can affect a family and a community, even (and pardon the term) “high-functioning autism.”And let’s face, it’s a place to vent at times when there’s no other recourse.

The media so often shows the most severely affected children with autism. So many media pieces are written about the non-verbal and the cognitively affected that there are still people in the general public who are unaware that a child can have autism and speak and not sit rocking in a corner. My blog is a way of sharing that autism can hit anyone, all sexes, all ages, all income levels, all races, anyone. One in 70 boys is now thought to have a form of autism, and 1 in 110 children overall are diagnosed with autism spectrum disorder. Staggering numbers.

When I write, I trust the reader. I assume that people read because they’re interested in autism, and when they read, they remember they’re reading about a sweet, beautiful, extremely intelligent nine-year-old boy with the most gorgeous of eyes, a penchant to hug mom spontaneously and an extreme innocence about the world. Maybe my trust is naive, but I’d like to think that anyone taking the time to read my sometimes very long entries is keeping in mind that they’re reading about a child whose mom loves him like readers love their own children. If someone’s looking for someone to mock, go elsewhere. Don’t believe in my views? That’s fine, that’s your prerogative, but there are debate boards on the internet calling your name. Just like you wouldn’t point at an autistic or otherwise different child in public and laugh at his illness or uncontrollable tics, it’s not okay to do it here.

I’m one of millions of bloggers in the world, people who do so for lots of different reasons. I’m glad my friend asked me why I blog, as it gave me some time to really think about the why and not just the what. I hope to encourage people that autism can improve, and that autistic children are amazing individuals who deserve our love, time, respect and compassion. Autism is just a different way of life, not a bad life. A diagnosis is hard, but they’re still your child and you will rise to the occasion. I wouldn’t ask for an autism diagnosis, but now I’m a better parent than I was before. I’m a more accepting individual and when I hear a crying child in public, I don’t plug my ears and get all haughty about my personal experience being inconvenienced; instead, my instinct is to see if mom needs help and to tell those who are complaining to be quiet and grow some decency. My child is an amazing blessing, and his autism has given this unexplainably unique view on the world that is going to make this world a better place. Autism may be a lifelong condition, but there’s hope and as their primary advocates, we parents owe it to them to never forget that. It’s so uplifting to read the stories on the internet about the strides children and parents are making, and I hope no one ever gives up on sharing it for the masses to read. Together we can show everyone that our kids are worth it.

Discipline is defined as “training to act in accordance with rules” or “punishment inflicted by way of correction and training,” or “activity, exercise or regimen that develops or improves a skill; training.”

See the recurring theme there? Training.

So what is training? Is it making a kid take a time out? Lose 10 minutes of recess time? Write a sentence about how he won’t xxx 10 times?

I’d argue that any of that is training.

In my job, when I train someone, I say something like “Part of your job is handling customers that call us. To do that properly, you need to learn how to answer the phone. To do that, you need to 1) answer the phone before 10 seconds, 2) push the F9 button on your computer keyboard, 3) recite the company-approved greeting….” and so forth. I’d give the new hire a step-by-step guide on how to use their computer, when they can take their breaks, how to act ethically and what is consider firing offenses. I’d sit them at a desk to watch someone else do the same job, and explain a lot of the nuances — don’t ever argue with a customer, no cursing on the phone or in the office, no yelling, etc. In short, they are taught beforehand what to do and what not to do. When they make a mistake, I’d tell them and tell them on how they can do better. But, there are two key things: 1) always provide the expectations, so they know what they have to attain, and 2) if those expectations are different, for any reason, tell them ahead of time.

Ahhhh, it seems so easy. Tell them what to do, how to do it, and what not to do. Without that, we can’t fairly expect someone to work up to standards. We can hope they have manners and are reliable, arrive on time and respect authority, but what if they’ve never worked before? What if their family didn’t teach these skills? Assumptions can get you in trouble.

Schools should operate the same way. Provide guidance, ahead of time, on what the expectations are. Don’t assume the children have the skills to meet these expectations, but work with them from day one on attaining those skills. Gauge what skills they have and what they don’t, even if it takes a bit longer with some kids. If you tell them that they are to do xxx or xxxx will happen, don’t  suddenly let xxxxx happen to them instead of xxxx. If losing recess is standard, but you’re dealing with an autistic child who desperately needs that time to make social contacts, don’t take away recess; the ‘punishment’ should always fit the crime.

Discipline in the adult world means one thing; why do we allow it to mean something different to our children?

Check your child’s school and be sure things are handled per your IEP or per the law and common sense. Just because a school says ‘this is how we do things’ doesn’t mean it’s fair or right, or even legal. Schools are run by humans, and we all know that all humans make mistakes. If you wouldn’t want to be punished daily for making mistakes on a task you weren’t taught to do, don’t let your child be ‘disciplined’ for it either; instead, ask for help, and training.

Training. A new buzzword, who’d have thought.


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 33 other followers

Twitter Updates


  • Emily: Thank you so much. I share your pain and am glad to know I'm not alone in my struggles with my very verbal autistic spectrum son.
  • Meet Julia, an Autistic Girl in a Sesame Street world | American Badass Activists: […] Apocalypse. That, or demonized in news and online rants, especially after a campus mass murder or a plane-halting meltdown . . . . So this b
  • Alecia: I'm an autistic young woman in the 7th grade. I have experienced exceedingly stupefied and unnecessary discrimination since elementary school. It is s