Friday, March 28, 2014

1 in 68. 2 of 2.

If you are an autism parent, I'm sure you saw the massive social media frenzy with yesterday's announcement from the CDC. Their new rates of autism are 1 in 68.

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Well, sort of.

The numbers were accurate 4 years ago.

If you were 8 years old.

And, if you lived in 1 of 11 test site areas.

The rest of us out there were not included in those numbers. Like my boys (who were too young). And like my entire State (which was not one of the test sites).

The whole thing makes me want to puke. Seriously.

I was in a craptastic mood because of the latest and greatest "news" from the CDC and was being fairly vocal about it online when one of my Facebook friends asked me why I was upset.

For SO MANY reasons!

As I told her, it's isn't just about the CDC "math". They obviously need a larger sample size for the analysis to be of any actual value. This 1 in 68 business is just fluff. We need the REAL, CURRENT numbers!

As you know, I have 2 boys diagnosed on the spectrum. Through my nonprofit work I know hundreds upon hundreds of affected children and families that are LOCAL in my area.

In fact, a mom I know said that a classroom in her school has an incidence rate of 1 in every 5 kids in one grade. 1 in 5! And, the next grade is about 1 in every 10 kids. 1 in 10! This is only 2 grades in 1 elementary school, and there are that many kids with autism.

Does this not shock anyone?

Or, shall I say, does this not shock anyone that doesn't already have a kid with autism?

It's safe for me to say that in our local area, the average across schools is approximately 1 kid with autism in every classroom, and likely there are even more than that. This is just my own observation based upon what I know about the area, but I can tell you that my half-assed estimate is far more realistic than the CDC's numbers.

Once again, things are swept under the rug and autism families continue to struggle. Middle class autism families are often in huge crisis all the time. They can't afford therapies because they are too poor (and our State still refuses to mandate autism coverage) and they don't qualify for help from the government because they're too rich. That's a freaking joke. Too rich. Most of these families are single-income because autism can be so all-consuming.

These kids slip through the cracks, they don't get the interventions and education they need, the parents are stressed to the max, some of those marriages fall apart, and the cycle of crisis continues on.

More kids get diagnosed every single day. I meet new families almost all the time. It keeps getting worse.

When will enough be enough?

When will the rate of autism be so shocking to the entire nation that sweeping change and action will be demanded? Does it have to get to 1 in every 5 kids? It may already be in some areas. Or, does it have to be a 100% incidence rate, like it already is with my boys?

Friday, December 20, 2013

Making the world better

After a stressful week, I was bracing myself for what I thought would inevitably be a bad day. I've been spending some late nights stressing over the details of my nonprofit, knowing that I can only do so much as one person, while always wishing that I could do more. I am forever dreaming of how my life would be easier if I could only clone myself, just to help alleviate some of the heavy burdens I bear with my family, as well as the volunteer work that I am so passionate about. I'm not proud to say that at one particularly low, yet fleeting, moment while in my car contemplating the zillions of things tumbling around in my brain, I succumbed to the overwhelming need to cry. It stopped almost as fast as it began, but I guess my body had reached its maximum at that moment and needed to release whatever was pent up inside. Needless to say, I didn't hold any high hopes for the day after that.

Then, it seemed that the proverbial clouds parted. What started out seemingly dreary, turned out to be about as good as any day could have been.

One of the highlights of my day was a meeting I had with one of our nonprofit's partners, which is another local nonprofit. I won't bore you with the details (which I personally find fascinating), but the time we spent was very fruitful, and many ideas were shared, plans were made, and we parted with a renewed commitment to what we are endeavoring to do together.

However, the best part of the entire conversation was how our respective mission statements align in the idea that we are looking to change the way the community, John Q. Public, views special needs. Rather than special needs (like autism and others) marking a difference that separates and ostracizes, wouldn't it be great if special needs were normalized in such a way that the entire community helped to advocate, and in doing so, created an environment of inclusion? We had some discussion about the nuts of bolts of this kind of vision for the future, and it all comes down to thinking about what your dream is.

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What is the big picture? What do you want to accomplish? How are you going to work to make the world better for the thing you are most passionate about?

I left the meeting feeling invigorated, with a renewed sense of purpose. It added fuel to my fire, and my head was spinning with possibilities and inspiration.

Then, many other things fell into place today in just the right way with my schedule and "to do" list, and I ended up being phenomenally productive. It was odd...but I wasn't going to question it. I just wanted to ride the wave of a good day.

When the boys got home, I found out that they both had a decent day at school, that they had finished their schoolwork early (by some apparent miracle) and neither had any homework to do. The best part? They were in good enough moods that they didn't automatically catapult into their usual bickering and fighting mode after they got home. That in and of itself was a moment of relief.

We had an appointment to go to, and due to the timing of it, by the time we had to head back home it put us right in the thick of rush hour when all the commuters are heading home from their jobs in Seattle. If there's one thing you can count on in Seattle, the traffic sucks pretty much all the time. The particular area I had to travel through is known for its slowdowns, so I had no expectations of getting home at a decent time. I have learned to take the back roads, but even they can get backed up. To make matters worse, my tummy was protesting the fact that I hadn't had time to consume any food of substance all day, besides the quick coffee I grabbed after my meeting.

Remembering that I had forgotten to take something out for dinner and that we desperately needed to go to the grocery store, I was overcome with a craving for pizza. I didn't want to scrounge around for something to make for dinner when we got home! I called Titan and tried to tell him in code (so listening little ears wouldn't freak out with excitement...or dismay if plans fell through) that I wanted to meet him for pizza on our way home. Using euphemistic terms, we hatched a sly plan for remedying my hungry stomach. There is one place that is our favorite for gluten-free pizza, and that's where we headed. Luckily, there was no fighting between the boys in the car like usual, so I wasn't a complete stress case when we arrived. Traffic was actually decent, too! I was looking forward to an enjoyable meal with some of my favorite food.

After we sat down and placed our order, Prince Charming started talking. Mind you, he hadn't really conversed since we got to the restaurant.

All of a sudden he said, "Mommy?"
"Yes, sweetheart," I replied.
"I'm going to make the world a better place."

His eyes were really bright and sincere and he gave me the biggest grin, displaying his dimple. I melted on the spot.

It's almost as if he had been reading my thoughts and had been sitting in on my meeting. I don't think it was a coincidence. I think God gives us little moments like these to help us know we are on the right path. It's exactly what I needed.

I have no doubt that my little guy will make a difference in the world, and that the world will be a better place because he is in it. And, I too will try my best to make the world a better place. I'm already working on it. I can only hope that my boys will see the fruits of my labor someday.

What is your passion? What inspires you to make the world a better place?

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Sunday, December 15, 2013

He couldn't stop talking!

So, it's been a while since I've been around these parts. I have missed you! Hopefully you have missed me, too. This year has been, well...a YEAR. Let's just leave it at that for now.

Titan and I were in a festive mood this weekend since the boys managed to make it through an entire day without attempting to kill each other. We called it a win. So, we decided to go celebrate the spirit of the season and visit a local Christmas lights display. We've been there several times before, but this year was different. 

It was different because of the way Monkey reacted. 

You all know by now that he is my quiet, scholarly type. He would rather play quietly in his room or sitting on the couch in a darkened room. Interacting with other people is either too much work or too boring for him most of the time. 

So, we waited in what seemed to be an endless line to get into the Christmas lights display, and as we began to go through it, Monkey's demeanor completely changed.

He started talking. Excitedly. And, he couldn't stop. The entire time. 

It was actually quite humorous. I looked over at Titan and he gave me a look of shared understanding of how unusual this moment was. 

Monkey was chattering our ears off and, he just did not stop. I loved it! After about 20 minutes of a play-by-play of every single thing he was seeing, where it was located, what color it was, and so much more, it got be a bit exhausting for Prince Charming and Titan. I was smiling and engaging with Monkey the whole time because moments where he is so excited that it just bubbles over are rare, and I wanted to enjoy it as much as possible.

This is similar to part of the light display we saw.
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When I asked him what his favorite part of the night was, he said he liked the arches of Christmas lights. He said it was like "an elevator to heaven." I love that!

On the way home, he was commenting about how much he had talked. He even said, "Mommy, you should tell your friends how much I talked tonight!" I told him I would, and here we are.

If I get too busy to write another post between now and the end of the year, I wanted to take a moment to wish all of you a very Merry Christmas! Take care and enjoy the time you spend with your family.      

Monday, September 30, 2013

The need to punch someone

School started a few weeks ago and we are in the middle of the transitional time where the boys are getting used to their new schedule and they’re becoming acclimated to their new teachers and classrooms. It is always a challenge, but school is always such a welcome experience following the less-scheduled summertime.

Over the past couple of months I have noticed that the boys were starting to fight more. At first it was kind of cute in a way. This is because in the past they weren’t really interested enough in each other to spend the time and energy to play together, much less fight. Their autism experience meant they didn’t choose to have interactions with each other unless it was necessary.

As they began to have small arguments and sibling rivalry, I was excited for those neurotypical moments. In my mind, it was part of their development and they were learning what it meant to be brothers. They appeared to be going through something that all siblings go through when they just rub each other the wrong way simply because they live together in the same house day after day. I know what that’s like and so does everyone else out there that is not an only child.

Their fighting became more intense as the summer continued, and it also became physical. It got so bad that at the end of summer it seemed that we were dealing with daily screaming matches, hitting or kicking that always led to someone getting hurt or brought to tears, and the eventual slamming of doors and yelling through the walls to continue the argument from their different rooms after I had to forcibly separate them when I couldn’t take any more.

In many regards, Prince Charming has been the instigator of most the fights. Although, Monkey is not innocent and often pushes all the hot buttons that quickly trigger his little brother. You would think that Monkey would just clock Prince Charming because he has been training in karate for a year now. But, what I found was that Monkey would often fall victim to the aggression that came from Prince Charming when he had turned into a Grumpy Badger. Monkey wouldn’t defend himself and would eventually get hurt to some degree; but I’ve found that about half the time his “hurt” is for dramatic purposes in the hope that it will get his brother in trouble.

After a particularly rough week last week, I sat down with Prince Charming to have a talk about what had been going on between him and his brother. I had been thinking that some of the fighting had to do with his need for sensory input on his body (a.k.a. “proprioception”). He had been hitting his punching bag in his room a lot more recently, and I wasn’t sure if it was due to anger issues or sensory issues or both.

This is the punching bag
that Prince Charming uses.
He doesn't use the gloves.
(Affiliate Link)
We had a really nice chat, just the two of us, hanging out on my bed. I let him do most of the talking as I led with certain questions to try to open him up.

After a few minutes I asked him, “Honey, why do you keep hitting your brother?” 

The response I got was quite surprising.

“He makes a really great punching bag, Mommy.”

It struck me as funny and I immediately started to laugh. He got a case of the giggles because I was laughing, so we had a good chuckle for a moment.

Then I asked him, “What do you mean by ‘he makes a great punching bag’?”

“It feels good when I punch him.”

“So, do you like punching him to make him cry, or do you like the way it feels on your hand?”

“It feels good on my hand. He’s softer than my punching bag.”

“Oh, I understand! It makes your body feel good when you are hitting something, and hitting him feels nicer than hitting the punching bag.”


“I have an idea about something else you could do that might make you feel the same way but wouldn’t hurt your brother. Do you want to try it with me?”


He got really excited. I demonstrated how he could put couch cushions on the floor and try to punch straight down to see if he could feel the floor through the cushion. He showed me that he’d like to try it a different way than I suggested, and he was happy to try it out.

When we are in the throes of a bad day because the boys are fighting incessantly and I feel like I’m at the end of my patience and ugly mommy is going to pay a visit, it is so easy to automatically go to the behavioral side of the equation. But, if I hadn’t been paying attention, I would have missed the clues he gave me about the fact that his sensory needs were not being met.

Obviously it isn’t okay for him to hit or hurt his brother, and there are consequences for his actions when it happens. But, it was more than that. And, that’s the point. As parents of children with autism, we need to keep our eyes, ears, and minds open to the possibility that there is more going on than what we see in front of us. If we can seek clues that lead to the function of the behavior, we will be able to better work with our children in guiding them to a more appropriate outcome, and it will also help us keep our sanity intact for another day.

Friday, September 13, 2013

My experience with homelessness

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Never in my life did I expect to welcome a homeless man into my home to temporarily live with my family, but here we are.

For purposes of this blog, I’m going to call this man Jester because he’s a bit of a goofball. In the short time Jester has been with us, he has taught me a lot. First let me make a clarification, because I know you are wondering why we would make this kind of a choice.

Jester is a long-time friend of my husband’s. They had fallen out of touch years ago and had reconnected via my Facebook account a few years ago. Even though I had heard about him a lot in the past 16 years that my husband and I have been together, I had never met Jester until he moved in with us.

We got a call one night from him asking for help, and within an hour he was in our home. While Titan was out picking him up, I was hurriedly getting the kids into bed and prepping the house for his arrival, making sure there were clean sheets for him on our hide-a-bed, and that there was tea ready for all of us when they walked in the door. I knew it was going to be a long night of chatting, and I was right.

I was overwhelmed with his stories of the things he had been through, including a very recent and sudden separation from his wife. It was all so heartbreaking and surreal.

Growing up as a cop’s daughter, a healthy distrust is part of my nature. I often think of things with the filter of safety and security, and I obviously had concerns about whether or not I could trust this man to be with me and the boys while Titan was at work. Since Titan had zero worries, I knew we would be okay. Since then I have been working to systematically let go of my automatic mama bear reflex around him, and I feel like I’ve kept an open mind and have actually gotten to know him pretty well. He's a very nice guy and I can totally understand why he and my husband are friends.

When you look at him, you can see that life has been hard. When you hear his story, you can’t help but feel sorry for his experiences. I often find myself thinking about how I have reacted to homeless people in the past…with a very healthy dose of skepticism. Are their stories legitimate or are they fabricated to make you feel sorry for them? Are they trying to manipulate? Do they have good intentions? I will admit that all of those thoughts have crossed my mind in regard to Jester.

What I have found is that the boys absolutely love him. They ask if he will be home when they get back from school or when they wake up. One day when Monkey was getting off the bus, before I could even say “hi” to him, he asked me if Jester was here. When I said “yes” he was visibly relieved and excited to run into the house to find him. Seeing their pure love for him is really something, and I know it is having a positive impact on Jester.

I firmly believe that everything happens for a reason, and that even if you have bad experiences, those experiences will teach you something you need to know for later down the line. In other words, God has a plan, even if you don’t agree with it or understand it at the time. I can't help but feel this way for Jester and have shared that with him. As a Christian man, he also believes it to be true. And, even though it is adding financial strain to our lives to have him here, I am happy with our decision and have faith that God has a plan for us in this situation as well. 

Since Jester moved in, we have been helping him connect with resources, including things for veterans and for his old hobby and sport, karate. What we are finding is that some people really do have huge hearts. Jester is using his former black belt status to get him back into training, and he is being allowed to help teach classes at the dojo where Monkey takes karate. As it turns out, both Jester and Monkey's karate teacher studied at the same place when they were younger, so it’s a great fit. God has a way of working things out! 

Jester’s heart has been so lifted since we helped him make this particular connection, and he is thrilled to be doing something that he loves and that is so positive for not only him, but for others as well. It’s also been great for Monkey, because he gets to practice with Jester here at the house. Jester is eager to learn about autism and how to work with Monkey, and Monkey has made great strides with his technique in just the past few days. I think it will be a growth opportunity for both of them and they will learn a lot from each other.

I have no idea how long Jester will be with us, but we are taking it one day at a time. Jester has singlehandedly challenged all of my preconceived notions about homelessness. And, because some of the things he has gone through hit a bit close to home, he has also helped me realize how close we all can be to that kind of a situation. It really can happen to anyone. My perspective has grown and my boys seem to be enriched by the experience of having him here. 

Who knew that the arrival of a homeless man to my door would turn out to be a blessing in disguise?      

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