Autism Watch: 2007

Archive for November 2010

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.


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