I originally started this blog a few years ago to chronicle Noah's daily struggles with autism. It was a dark time in my life - a time when I felt that things would never get better. It was a time when I felt that all my hopes and dreams for my son and for our family had died. In my efforts to help Noah recover from autism, I began a journey that inadvertently led me to rediscover myself. I learned how to laugh again. How to dream again. How to live again. How to love again.

Autism Schmaustism. He's still our son.

This is a blog celebrating our family. Our kids. Our life.

Tuesday, April 20, 2010

It's a RAD RAD world

We've noticed a behavioral pattern with Nandi. Her behaviors always get worse in the spring. I have no idea way. I mean, don't get me wrong. We have trying behaviors a lot, but something about the spring really flares them up. And they stay that way until the end of summer.

On the postive side, I'm not getting bit anymore. Hallelujah! But her passive aggressive behaviors are driving me ku-razy! Crazy!

Things had gotten really good and there where days when a real sense of pride - an immense feeling of joy - would overtake me and I would think back to how far we've come. And then, bam!, we wake up the next morning and it's RAD Central in our house.

I get so mad at myself because I let my guard down again and again and think that things are finally better (and they are improving, they really are) and then it all goes to hell in a handbasket and Sim and I are left shaking our heads wondering what on earth just happened.

Things were really bad this morning - so much so that I didn't even send her to school this morning because the battle just wasn't worth it. The school morning routine will be the death of me. I'm sure of it. My tombstone will surely read, "Died of stress caused by trying to get her kids dressed and ready for school every morning while trying to keep a smile on her face."

I envy those parents whose children pick what they want to wear the night before and actually stick to it. But Nandi? No way. She'll pick something and if I don't object to it (really, I literally laugh at my old self for hyperventilating whenever Nandi chose stripes and polka dots. I don't even care now. Just choose something!) Anyway, if I don't object to what she chooses (or even if I do object), she throws a fit and changes. Then rinse and repeat at least 4 times. By this time, we're running late and I'm totally stressed. Oh, and before you even suggest it... yes, I did send her to school naked one day. Had to pull over right before we dropped her off when she finally relented and I dressed her on the side of the road. Even sent her to school barefoot last week because she kept taking her shoes off. What do I do? Duct-tape them to her?

Anyway, today's cause du jour was because she kept playing with my bedside lamp that I had to buy to replace the one that a certain someone broke, and I told her no. She did it anyway. And I was stern and told her not to do it again.

There ya go. Obviously I don't love her. You see, Nandi has a love tank. It's like a gas tank, but it's a love tank. And no matter how much love I put in there, it never ever ever gets full. Sometimes it'll almost get full and then something will happen... like, I'll fill Eli's glass with water first or maybe she'll ask for candy for breakfast and I'll say no and then bam! the love tank gets a puncture and drains again.

Do you know how exhausting that is? For both us and her? If we say "no" then we don't love her. She is so insecure that it's painful to watch. And you can literally see it.

You can literally see the light go out of her eyes.

It's like a wall is built up right in front of you and she goes into robotic mode. And everything is then done slow and deliberately. The "accidental" kick of the dog. The "accidental" knocking over of the glass full of water. The book that suddenly falls off the shelf. The drawers that all become opened. The pile of clean clothes that suddenly end up on the floor. The bed that gets peed in. The door that gets slammed on me as I'm walking through it...

And then there's the guilt. The guilt of knowing that she needs to be homeschooled and the guilt of acknowledging that I enjoy the respite when she's in school. The guilt of wondering if I'm doing enough. The guilt of having yelled at her this morning and undoing weeks of positive parenting. The guilt of wondering if we're just messing her up more and wondering if she'll survive school. Wondering if she'll end up 13 and pregnant. Yes, we worry about that. When you have a daughter with RAD you can't help but wonder that.

And, yet, at the same time, she is doing sooooo much better. I wonder if these RAD days bring us such despair because we've seen the good days. We know what good days are like now. We can see the light at the end of the tunnel...we're so close.... but we just keep getting derailed.

Anyway, I originally started blogging this post just as a way to explain why I've been absent for a while. RAD parenting takes up soooo much energy and you really have to be "on" all.the.time. I just can't afford to get on the computer much right now - even though I honestly would love to just get on here and veg out. It's taking a lot of discipline to not just surf the web all day and to really tackle what's going on in our family life.

To all you other parents out there dealing with this... I'm thinking of you and wishing you lots of luck. It's only 9 more hours till it's their bedtime!

Wednesday, April 14, 2010

It's Worth a Shot

See that gorgeous little boy in the picture above? That's Jaron. Remember him? He's the little 23 lb, 8 year old boy who lived in a hospital in India until Sarah found him last December and took him home with her to Sarah's Covenant Homes in Ongole.

Do you remember what he looked like back then?

Pretty sad, huh? Makes you a bit mad, right? Because, come on, he was in a hospital under the care of doctors and nurses.... yet, he was wasted away and covered in sores and lice when Sarah found him.

Look at that top picture again. See how happy he is? See the change in him? It's fantastic!

But, unfortunately, he's really sick right now. Jaron is really sick. In fact, he's on the way to the hospital in Hyderabad because he's throwing up blood.

Now, that alone is pretty scary. But what makes it even scarier is that two children have passed away at Sarah's in the last week:

Sweet Elizabeth

And beautiful Evelyn

Both precious girls had epilepsy and neurological issues, but it's not really known what caused their death. And after Elizabeth died, several of the children in her room came down with unexplained high fevers and had to be taken to Hyderabad.

Now, I'm not one to go on and on about the controversy of vaccines. People close to us know what we've chosen and why. I've seen the good side of vaccines and I've seen the bad. But in India? These kids don't have a choice. They NEED to be vaccinated.

Think about it. You have 82 medically fragile children living in a group setting in a third world country. Some have Hepatitis. Some have come to Sarah's with Typhoid. They almost all go barefoot, so they need tetanus shots. And polio? Uh huh. It's still a big concern.

These beautiful, precious, amazing, God-has-a-purpose-for-them children MUST be immunized. But they can't. Because Sarah doesn't have the money to do it.

Two children have died in a week (and no one knows why), several have been sick and now sweet little Jaron is vomiting blood.

It costs $175 to fully immunize one child. There are 40 children. That's $7,000.

Seems like a lot, right? But what if we all got together and pitched in. What if we blogged about it? Facebooked it? Emailed it to our friends and family? Did a little office fundraising challenge? Or a school challenge with each classroom?

What if we banded together and raised the money to ensure that these children - these children who are finally being given a second shot at life - never, ever, ever, ever have to die from a preventable disease?

What do you say?

$7,000 sounds like a lot. So let's break it down:

We could raise the money by...

50 people giving $140 each

100 people giving $70 each

140 people giving $50 each

280 people giving $25 each

350 people giving $20 each

700 people giving $10 each

1400 people giving $5 each

Come on! We can do it!! Spread the word. YOU can help save a life today. Let me repeat that. YOU can help save a life today. That's a pretty amazing feeling isn't it?

Here's how you can do it:

Click HERE. This will take you to Sarah's blog. On the top right hand corner is a Chip In button for you to make your donation.

And pass it on. Pass it on. Pass it on. These children don't have families.

WE'RE their families.

These are OUR children.

Won't you help your child today?