Thursday, March 29, 2012

Increase Awareness: Let's Do Our Part!

In 1994, Autism occurred in 1 of every 166 births. In 2000-2002, it was 1 in 150. 2006 saw that statistic go down to 1 in 110, and just today the Center for Disease Control and Prevention (CDC)  released a very sobering statistic. The newest data (as of 2008) shows autism occurring in 1 of every 88 births.

1 in 88.

That statistic is mind blowing.  In the past ten years, that's a 78% increase. How do we stop that steep of an increase from happening again? Can we make it go away by curing it?  It's a tough nut to crack. Autism isn't something you can stop as it still isn't clear what exactly causes it. It's not a disease, so there's no magic pharmaceutical that's going to cure it.

So what can we do?

We can broaden our awareness. Know the warning signs, because early diagnosis is key. The sooner it's discovered, the sooner the proper services can be sought and administered. It is likely that with these services, the autism will have less of an impact on their learning capabilities and social skills in the long run, according to CDC Director Dr. Thomas Frieden. I know this first hand as Jordan has benefited tremendously from them.

Those of us without medical degrees and licenses that would allow us to diagnose and treat Autism can still help. We can get the word out. We can let people know that, though we can't see it, Autism is out there. Let's   all of us pledge to light it up blue this Monday April 2nd. If you can't light it up blue, wear your blue. Whether it's a shirt, a pair of socks, or your blue jeans. If you have puzzle piece jewelry, wear that too.  Even the smallest tokens can make a world of difference.

Here's the story on CNN:

Take the 2012 Pledge to Light it Up Blue on Facebook:

And here's a little something I made, as Jordan's favorite movie right now is 'Rio'

Thursday, March 22, 2012

Red Light, Green Light

You always want to believe that your kids are the best behaved kids on the block. They never do anything wrong and you never, ever have to discipline them. They are angels all the time, every time.

Yeah right.

Every child misbehaves, it's in their nature. It isn't always malicious. Most of the time it's harmless. 

"Stop jumping on the bed."

"Sit down on that couch!"

"Give that back to your brother. You have to share!"

But sometimes it isn't. Sometimes it's hurtful and can border on dangerous.

"Stop running in the house, you're going to trip and fall."

"Don't push your brother!"

"Don't throw that! You're going to hurt someone!"

After once, perhaps two times of yelling at a typical child, s/he will get the message that you mean business. No means no, and when I tell you to stop you'd better stop. With a differently abled child, you can run in to some serious road blocks. While Jordan has made huge strides in her comprehension skills, there are still limits in her ability to understand certain things. She doesn't quite understand that when we yell, it's not usually a good thing. She often laughs and runs away, thinking that what she has done is a joke and that she can do it again. We try to put her in her room, but all she ends up doing is screaming at her door and pounding on it until we let her out, more out of frustration than anything else. Spanking is out, and yelling never did anything but make us all upset.  Discipline has been an uphill battle in our house.

One night two weeks ago we were at the end of a particularly frustrating day with Jordan. She had just been plain old rotten all day: hitting and kicking her brother, throwing books and toys, and screaming at us when she wasn't getting her way. She spent most of her day in her room, because every time we let her out she would do something else defiant that would make one of us yell at her and the other send her right back to her room. I was sitting in the recline, literally pulling my hair out. I wracked my brain for hours over what we could do to get the message across of what was acceptable, and what was unacceptable behavior.

Then I remembered something I saw in her classroom. They had signs up dictating what was good behavior and what was bad behavior. The green sign had a list of positive behaviors, the red sign negative behaviors. It was brilliant! If it worked at school, it should work at home, right?  I immediately opened up the computer and started typing up my own lists of positive (green) and negative (red) behaviors, entitling them "I Am Being Green" and "I Am Being Red."  As I was writing, I remembered something from her therapy sessions: she responded to rewards. If she had incentive to do something, she might actually do it. So I devised a reward system. If she was misbehaving, she would be "Red" and would earn a 5 minute time out, usually in her room. If she was behaving, she would be "Green," and if she stayed "green" until the end of the night, she would earn a sticker on her chart for that day. If she earned 5 stickers by Saturday, she would get a special treat. (My initial requirement was 6, but John convinced me that was a little too much to expect from a four year old.) I had my mom print out and mount the signs, and beginning last week they became a part of our home decor.

We are in week two now, and so far, it seems to be working. Her behavior has improved dramatically, with fewer incidents of misconduct. She does not want to be red!  She insists that Johnny should get a sticker, too, so we have been awarding him one every time she earns one. Their treat the first week was donuts, and we have yet to decide what it will be this week. We'll see!

PS: Don't forget about Autism Awareness Day, Monday April 2nd! Wear your blue!

Wednesday, March 21, 2012

Words are like Weapons

"Words are like weapons, sharper than knives."

The second you become a parent, that protective instinct kicks in. Your baby is your whole world and you would do anything to protect her. You're a mama lion, and you'll bite the head off of anyone that messes with your cub, directly or indirectly. I have found this even more true having a child with autism. As a parent of a differently abled child, you're on constant high alert.  You know the ignorance is out there, lurking in the form of a glaring stranger when your child stims to keep herself calm, or an uneducated youth making an insensitive comment.

This is the indirect harm I am referring to.  Insensitive comments can be very hurtful, even when your child is not within earshot.  This happened to me just recently. It was the beginning of the work day and my crew was milling about, waiting for the okay to start our work day. A few of the guys were joking around, calling each other names. One asked:

"Why do you call him that?"

to which the first responded,

"Oh, because he's [so and so's] retarded brother."

I didn't hear the rest of the conversation or the crude noises made afterward,  because at this point I was so angry I was seeing red. It may not have been directed at myself or at Jordan, but to me it didn't matter. Language like that is a direct insult to my Jordan Elizabeth and all  individuals like her. I took several steadying breaths, turned around and snapped at them to watch their mouths. There was a momentary stunned silence and a chorus of mumbled apologies, but the damage was done. Not only was I fuming, but I was also devastated.Why would they make such harsh, insensitive comments about people like my little girl? It chewed away at me for a few hours until I went to my boss and reported it, on the verge of tears. My boss, being able to sympathize with my situation, was very understanding. All involved parties were dealt with accordingly, which brought me a sense of satisfaction, but not a sense of closure. It still hurts. This leads people to believe that the developmentally or intellectually disabled (differently abled) are sub-human and not worth treating with respect. 

With the prevalence of autism, downs syndrome and other developmental and intellectual disabilities, it surprises me that people still use the word "retarded" so freely. And almost every time it's used, it's in a negative connotation. It's used to insinuate that someone is beneath you in lines of intelligence, and can't possibly understand because they are too stupid. The media is worse. In shows like "Family Guy" (which I find myself liking less and less) this word is depicted in the worst ways, showing in one episode an autistic child in a helmet and protective gear, slurring his words and petting Brian the dog too hard, causing Brian to bite him on the hand. It's meant to be funny, but in reality it is insulting and demeaning. The writers and creators of the show should be ashamed. I have met many people with developmental and intellectual disabilities, and they are the sweetest,  most pleasant people I have ever met and have the most positive outlooks on life. They are wise beyond their years, my baby girl included., and could really teach a lot of us a thing or two about personal conduct. 

Most of the time, when today's youth uses that word,  I hear "oh, they're young, they don't get it." or "they're just uneducated." in defense of their ignorant actions. Well, I am sorry, but those are just not valid excuses anymore. The resources available and coverage of all the charity organizations (Best Buddies, The Doug Flutie Jr. Foundation for Autism for example)  on the news  are plentiful, so there is no reason for anyone not to understand that the word "retarded" is hurtful, harmful, and should never  ever be used. Period. 

You see what I mean about protective instinct?

My little star!

Links:    The Doug Flutie Jr Foundation for Autism                      Best Buddies                   Autism Speaks                 The Autism Society

Educate Yourself and Others!  April is Autism Awareness Month and Monday April 2nd is National Autism Awareness Day! I will be wearing my blue and my puzzle piece pin! Will you?