Sunday, October 28, 2012

Celebrating the little things. Don't ever take them for granted.

I think as parents, sometimes we take the little things for granted. We expect our kids to walk at certain times, talk at certain times and do things that are expected that the guidelines are given to us by doctors and certain people.

I've never had anything go correctly or in the guidelines as doctors would have. I don't know what to expect as a parent. My oldest son has always been off the guidelines. He didn't walk when he was 'supposed' too. He didn't talk when he was 'supposed' too. And you know what? That's just fine with me.

Why? Well...I don't really think we appreciate any of these small things. I mean at first we do. We're so excited when our kids take those first steps, or say those first words. But for how long? I often hear many parents telling their kids to shut up. That irritates the hell out of me. Caleb didn't talk til he was 4. I would have given anything to hear him chatter up a storm. Or the fact that he struggled with walking until he was 3. Yep, another thing that I wish I could have seen and celebrated.

So with my other kids, I am so excited and just enjoy every little moment that they do the 'normal' things that other kids do. Maybe Caleb was given to me so I can appreciate life. I find myself cheering when my youngest son puts on a shirt. Or when my 5 year old writes a word.  I enjoy life more now that I've had to see my son struggle with it. It's so amazing to see what he can do now. I am so proud of him.

Enjoy the little things that your children do. Don't ever take another second of what they do for granted. You never know when they might not be able to to it. Every little thing they do is amazing and a miracle.

Sunday, October 21, 2012

Learning to let go....the case of the clingy parent.

This isn't my brightest moments as a parent. I have always wanted the best for my sons. Having a son with Autism has been...terrifying and enlightening at the same time. I don't always know what to do.  Balancing being an advocate for my son's rights and letting my son doing new's hard! I want him to do new things, but I don't always know if it's the best thing for him.

I have a confession to make. I am that parent. I am paranoid. I am always terrified that Caleb isn't going to be comfortable in a situation. I hoover more than I should. I ask a 100 questions about certain activities when most parents ask one or two.

Why? Well, I can't say it's his Autism. It's me. I am a scared parent. I confess to being that parent. I want him to thrive and succeed in all possible ways. But I'm starting to realize that I am holding him back because of my paranoia.

I don't honestly know how to get rid of this fear....he's 11 now and I am starting to realize that I am a big fat baby when it comes to letting him do stuff. I make excuses and say oh no I don't think so...when I really don't actually know. It's time for that to stop. I have stopped for the most part, but there are still some times where I catch myself going back and making excuses.

Would I want him to make these excuses? Do I want him to use his Autism as an excuse? Nope. I have never ever allowed him to use it as an excuse, so I need to stop doing it myself. He has issues, he has problems, but he can cope through situations. I need to suck it up and be less of a clingy mom.

I am so proud of who Caleb has become. Just look at this young man. Look at how handsome he is. He has come so far and I need to allow him to become who he is meant to be. Time to let go and let him be the man he is meant to be.'s going to be hard. has to happen.

I don't think I am a bad parent. Just learning as I go...and I have learned that I need to let go. No more clingy mom. some cases maybe, I need to let go and let him grow.

Saturday, October 20, 2012

Why I hate the 'R' Word.

I am pretty open minded. I don't mind talking about random subjects. I will even spar on the very uncomfortable topics, such as abortion, religion and politics. But one thing I am a bit sensitive's the use of the 'R' word. I don't like it. Nope, not one bit. I know it's a medical diagnosis. And I know it's used in certain diagnosis'. Heck, my son had a diagnosis of mental retardation before he was diagnosed with Autism.

So why don't I like it? Story time. Yes, I am ashamed. I've used it. More than I should. I've used it in reference to people and other things that I really shouldn't have ever done. But I know better now. I have respect and I would rather use terms responsibly.

Another thing I understand and would like to address. By making the use of a word bad or something that people get upset about gives it power....yeah I get that. But I also understand there's a certain responsibility we have as humans.We should treat people respectfully. I'm not going to throw out certain words, because I believe they are disrespectful. Maybe that is giving the word power, but I disagree. I would rather respect my fellow mankind than disrespect them.

So what really made me hate the 'R' word? Well that's a story of epic proportions. My son was 3 at the time and I wanted to have him in a church environment. We put him in a church preschool, after telling the director/teacher all about Caleb's problems. (He hadn't been diagnosed with anything at the time) She was so nice, told us that she would help him in every way possible. I was so relieved. I wanted some exposure to a church environment and thought this was the place. I couldn't have been more wrong. I came to pick him up from school one day. The teacher/director was standing outside the classroom chatting with another person. I thought it was a bit strange to leave 10-12 preschoolers alone in a classroom, especially my son who has some issues with scissors and such. He had been known to cut things that he wasn't supposed to. I went into the classroom and started to get Caleb's stuff and she came in there like a hurricane.

I stood there and listened to her as she proceeded to tell me about my son's day. Caleb had an accident and had been left in the bathroom all by himself. She told me that he had taken his feces and wiped them all over the wall. Internally I giggled. I mean, who leaves a kid alone in the bathroom like that? Then came the worst of it. She told me that my son, the light of my life...was a retard....was the stupidest child she had ever had in her class. Yes, I am not kidding. I think my mouth dropped. I don't really remember what happened next. I didn't say anything. I saw red. You don't call my son that. You just don't. I don't care who you are. I don't care if you're angry. You don't call a child names, especially one who has an obvious disability. I left and found out later, that she had left my son covered in feces which resulted in him breaking out in a rash. Yep...pissed off mom. I called and asked for my son to be removed from the program after that. I was done.

So, that is why I don't like the use of the 'R' word. I won't yell at you. I will educate you and probably ask you to not use it around me. It's just not a word I like...and I will probably get kind of angry if it's used inappropriately.

Thursday, October 4, 2012

Debate Fest Denver 2012: Spreading Autism Awareness

So yesterday I got to do something pretty darn fantastic. I went to Debate Fest in Denver, Colorado at the University of Denver. I was, quite frankly, a bundle of nervous energy. I was terrified. People from all over the world were there. Press, Secret Service, Politicians, crazy protesters, was CRAZY!!!! But I wasn't there to talk politics. I was there to raise awareness. Our goal was to get at least one candidate to mention Autism. We really need Autism to be on the agenda, because we need our voices heard. We deserve a voice and I was determined to have that voice heard.

I arrived in Denver around 11. We weren't allowed inside the Debate Fest area until 2. So...we sat at Starbucks for 3 hours. That was interesting. The people who went in and out were a mix of press and people all over the world. The team I was with would go up to the press and ask them to stop by our booth/tent and learn more about Autism Votes and etc. I'm a bit shy with the press. Then the Secret Service popped in. That was funny. One of the girls from the group ran up to them and asked if they were. They answered in the affirmative. I laughed. They were giving it away with their little ear wires sticking out. We wanted to take their picture, but...they thought we would post it on YouTube. Apparently YouTube is where you post pictures now...haha

Another amazing person we met was an illustrator from the NY Times. She saw my shirt and asked about Autism Votes. I proceeded to talk to her about it and then asked her about hers. She was from Artists Votes. She told me about her cause and why it was important. She then proceeded to tell me about what she did and what she was doing professionally. It was so cool! Meeting an artist of her stamina. I felt so honored!

So around 2, we all walked back to where our site was, wearing our awesome little amusement park credentials. Yes, our credentials were wristbands that you get at either a bar or an amusement was hilarious. I giggled. I looked around and saw all the other booths and tents. There were many different views, many I don't agree with, but yeah...I'm not going to write about that today. Ha.

The table was fixed and ready to go, when I noticed the sign was backwards. I asked if I could fix it. The ladies grabbed a few zip ties and I jumped on a chair to start hanging the sign back up. As I was getting down from fixing the sign, Fox news comes over and asks me to get back on the chair so they can get me in the camera hanging the sign. butt made the news. Awesome haha. I laughed so hard.

The next thing I got to do was a radio show...I've done one before, but not in public. HOLY COW I was a nervous wreck. There was a lot on the line for me to get everything right. I had a lot of information to get out in about 90 seconds to 2 minutes. I literally had no time. I was shaking in fear. I don't like public speaking at all. They handed me the microphone and I kept lowering it down to my knees. I wasn't sure I could do it. But then I remembered. This wasn't about me. This was about helping get more awareness. I wanted to help others. I needed to suck it up and just do it. Sure...I was near tears and shaking badly, but I got everything out. I said what I needed to say. It went quite well. I felt that I was able to get what I needed out and speak on behalf of my cause.

Debate Fest opened at 3 and went til 6. In that span of time, hundreds of people swarmed in. They came over to our booth and our team increased their awareness of what Autism Votes was about.  Now you may be wondering what Autism Votes is. What we want is a reform on insurance. Right now it doesn't cover all therapies for kids with Autism. And that's not right. We want Autism on the agenda of every politician. We want it addressed and we will continue to show up at every debate, every door, and I will be there with them as long as I'm able. I don't just want this for children but for adults. Children are covered but what happens to the adults. We aren't talking about that and that scares me for the future of our kids. I have a son to think about and so do many others.

Towards the end, I started getting, well in my words, pimped out the the media. LOL I went to all the major news stations, standing in front of their cameras so they could see the Autism Votes tee shirts. MTV panned a shot of our booth and happened to get me. I gave them a cheesy thumbs up. The cameraman laughed. Hey I got my 5 seconds on MTV! Bwhaha

I drove home and contemplated a lot. Why do I do this? Why do I drive out of my way, spending hours away from my kids, talking to people I don't know, publicly speaking when I am terrified, and all for free......I'll you why, because if I don't, who will? I have a voice and it must be heard. I want people to know why this is important and why you need to know that Autism isn't just going to disappear. We are going to continue to be out there. You can listen and I hope you will take something away from it. Because that's all I want. This is so important to me.