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.”

“Yeah.”

“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?”

“Yes!”

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?      


Monday, July 29, 2013

Did Daddy Have Cancer?

Last night we went on a family walk as the sun was setting. Near our house there is an area that was under development and was quickly abandoned as the housing market fell apart in recent years. There are sidewalks and trees, and it is set back from the main road. It makes for a serene, enclosed space that lends itself well to family time. We have had some excellent walks there on the long summer nights, and it’s a great place for the kids to get their energy out before bed.

Just before we left our house to take a walk, I had been watching a documentary on Netflix called “Dying to Have Known” about cancer treatments and whether or not the Gerson therapeutic approach can improve health and cure cancer. It was interesting to me because of my husband’s experience with lymphoma back when our boys were very little.

As I expected, when the boys heard the TV, they came out to check what I was watching in case they were missing something. They ended up watching almost the entire last hour of the documentary with me. I have no idea what piqued their interest, but I was glad to have their company. I figured, if nothing else, it might give them reason to ask me questions. Unlike most neurotypical kids, my boys don’t seem to ask a lot of questions, and I have to really make a concerted effort to have these kinds of interactions with them.

So after the movie concluded, we left for our walk. As we got underway, I was recounting part of the documentary to Titan, who missed most of the movie. I briefly spoke about how the work of Dr. Gerson* and Dr. Burzynski* are not viewed favorably in the mainstream medical community, much like how “alternative” autism treatments such as the GFCF diet are viewed with the same disdain, despite a lot of evidence about their efficacy. (*The documentaries, “The Gerson Miracle” and “Burzynski” can be instantly viewed on Netflix.)

I was reminding Titan about how his doctor got upset when he lost weight by eating raw foods, taking supplements and juicing while he was undergoing chemotherapy. The doctor was concerned that his weight loss would make him sicker from the chemo. 

Monkey interrupted us and asked who we were talking about.

“I’m talking about Daddy.”

“Oh. Wait… What? Why was the doctor upset with him? Was he sick?”

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“Yes, Daddy was sick a long time ago. The doctor didn’t like what we were doing to help Daddy’s body stay strong during his treatment. But, Daddy’s better now, so everything is fine.”  

“What was wrong with Daddy?”

“Well, he had cancer. He doesn’t have it anymore. He’s okay.”

I could see the wheels turning in his mind as he remembered the movie we had just watched and all of its talk about cancer. I could see it was troubling him and he started to walk slightly faster so that he could avoid me seeing his face. He tries to cope with emotions by avoiding eye contact because it gets very uncomfortable very quickly for him.

I’ve often heard people say that those with autism have dulled emotional responses, but from my experience I can tell you that I believe that sometimes the surge of emotions can be overwhelming and they are responding in those ways due to a feeling of chaos and lack of control. I think people with autism may feel even more emotion than you or I, and they simply can’t handle the way it makes them feel. Monkey will do whatever he can to avoid emotion, but sometimes it can hit him very, very hard. So, I respected the subtle nonverbal clues he was sending me about how the subject of his dad having cancer was difficult to process.

“Did Daddy really have cancer? What kind of cancer was it?”

“Yes, he did. He had lymphoma.”

Titan jumped in and asked Monkey if he could remember the scar on his body, and told him that the scar came from a surgery where they removed his tumors. He also talked about the blue tattoo dots on his chest that were used to align the radiation machine.

“How old was I when this happened?”

“Well, your brother was a baby…about 6 months old. You were 2 years older than that. You were really young, which is why you don’t remember any of this. We haven’t really talked about it with you because it happened a while ago. Daddy is fine now. So, please don’t worry.”  

“Okay.”

His pace slowed back down a little bit as his emotions began to calm. I figured the door was open, so maybe we should expand the conversation.

“You know you can ask me a question about anything whenever you want, right? Is there anything that you want to ask me about right now? Maybe about Daddy, or autism, or something else?”

“Yes. Why am I allergic to wheat?”

I explained to him that his food allergies are something he was born with, much like my allergies to pollen, and that the special diet is helping his body and brain. I also told him that the allergies are part of his autism and that when he is on the diet, his autism is better. This, obviously, led to the next question…

“Will I have autism and food allergies for the rest of my life, or will they be cured?”

I told him that much like with cancer, some people can get better and some do not, and that this can also apply to things like autism and food allergies. Some people have to stay on a special diet for their whole lives, and that we didn’t know yet if that was the case for him or for his brother. We talked about how the diet has helped his body, his brain, and his autism, and that he needed to stick with it for a while longer.

We talked for several more minutes and I tried to involve Prince Charming as much as I could. I made sure to specifically ask him if he had questions about his autism or anything else. He understands that he has autism, but gets easily confused about the fact that autism is a condition that affects his body and brain, and that it isn’t something more concrete like a local event we have called Autism Day. So, I talked with him about how some kids have autism and some don’t, and reminded him about how we like to visit and play with our friends that have autism at some of the special events we go to.

I know that in time his understanding will expand. All I need to do is keep talking with both the boys and encourage questions in those distraction-free times, such as family walks in the evening.

How do you talk with your kids about autism?          

Monday, July 8, 2013

The joy and anguish of flying a kite

After the school year ended we took a much-needed mini vacation, which ended up being a small family reunion. My mom had just been recently released from the hospital. My brother flew out from Colorado and my dad rented a beach house on the Oregon Coast for all of us. It was a nice time to gather together and just be a family for a few days.

Part of the trip we were dodging rain drops, and this was a picture I captured one evening as I enjoyed the view of the sunset over the ocean from our rental.


The boys had a huge fascination with the stairs, since our home is single level. They kept running up the stairs and sliding down them head first. They had tons of fun!


And then, there was the sleeping loft. It was a match made in little boy heaven. They got their own cool sleeping space that gave them an awesome view of what was going on downstairs.


And, when you have a really tall daddy like Titan, this is what happens when little boy feet are dangling through the railing...


I found my dad and Monkey hanging out in the sunshine one afternoon in the back yard.


And, after about 20 minutes of carefully negotiating our extremely sensory-sensitive Prince Charming into the water of the hot tub, I was able to capture this gem before I climbed into the water with the boys.


I love the Oregon coast. It is so picturesque.

 
And, now we get to the heart of our story.

In anticipation of our beach trip, I had purchased new Angry Birds kites for the boys. They had never had a very successful kite-flying experience before, so we were eager to test the new kites' ability to catch the wind.

After a quick tutorial with a short line, the boys practiced near us and ran around in circles. They had a lovely time. Titan then showed them that they could let the line out more and watch it fly higher. All they had to do was run to keep it in the air.


And that is when it went horribly wrong.

At first, I was enamored by the sheer joy on their faces. It was an astonishing moment of freedom for them. They were running with excitement and happiness. I didn't want the moment to end and was rapidly taking pictures of them to capture this milestone. I was able to watch their fun easily through the zoom lens of my camera.

I put the camera away for a moment to chat with Titan, and that's when it happened. We both realized exactly how far down the beach the boys had gone. And they continued to run, without stopping. They did not glance back once. Monkey was in the lead and Prince Charming was just trying to keep up with his brother.

Titan and I left my dad and brother behind as we scrambled down the beach as fast as we could through the sand. Each moment we traveled, the further and further away they got. After chasing them for what was likely ten minutes (that seemed like an eternity), the wind must have shifted, because Prince Charming managed to hear one of my bellows.

He stopped and looked back. Monkey was still running at full speed.

I used exaggerated body movements and sign language to tell Prince Charming that he needed to get his brother and come back to us. He seemed to understand, thank the Lord.

He ran off to catch up to his brother and started yelling his name. Monkey was far enough away he didn't hear him. Titan and I continued toward them, but knew that neither could hear us. After a few more minutes, Prince Charming managed to get close enough to Monkey to get his attention, and he finally looked back toward us.

Titan and I were wildly signaling with our hands to come back. He saw us. Both of the boys started heading back in our direction. Thank God. I never made it down the beach as far as Monkey did, and I swear to you it was probably at least a mile away from where we had begun. Looking back down toward our starting point, my dad and brother were barely distinguishable as dark specks on the sand.

When the boys made it back to us, we quickly reeled in the lines on their kites and had a stern chat with them. The long walk back was spent in silence. There were no smiles. No more joy.

It was a shame. They had no cares in the world as they ran along the beach, loving their kites, the wind, and the sun. What was a blissfully happy moment for the boys became something entirely different. Their freedom escalated into our intense worry over their safety, and our recognition that they lacked understanding of possible consequences.

After we re-joined the others and the boys settled into looking at rocks, I quietly excused myself. As I walked up the hill to the car, the tears began to fall behind my sunglasses. I stifled my sobs until I got into my car, and then I let it all out.

This was not the first time Monkey had wandered away with no regard for safety. One time he was brought back to us by the police after being missing for almost an hour with a full-fledged neighborhood search underway. It was a horrific experience I never wanted to repeat. Talk about a flashback.

It had been a few years since we had dealt with his complete disregard for safety concerns. Titan and I thought this portion of our autism experience was finally behind us. That hope was immediately crushed as I reflected on what had just happened with the kites and what could have been, had we not been able to get Prince Charming to hear us and understand that he needed to get his brother's attention. With Monkey's high level of endurance, rate of speed, and sheer distance he had on us, there is no telling where he could have ended up before he stopped.

I was snapped back into the reality of autism.

As I cried in the car, I wondered if any of it would ever actually be behind us. The rollercoaster of the boys doing well then not doing well, improving and regressing...it's all so exhausting as so many things in so many areas of their lives can be affected.

It made me ponder the big picture. What will the future hold for my children? It can seem so uncertain from day to day. I always hope for the best, but you can't help but go through worst-case scenarios in your head. Will my planning 20 steps ahead for things ever stop? Will my boys ever lead a "normal" life? I guess I have less certainty of that than I thought I did.

A day that started with so much joy, ended with anguish.

As we checked out of our rental that morning and went down to the beach one last time to fly kites before we left town, I certainly didn't expect our vacation to end on that note. And, I doubt I will ever look at a kite in the same way again.          

Friday, June 28, 2013

A giveaway that was 2,000 people in the making!

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Can I just say how much I LOVE my Facebook fans?

I do. You rock.

I want to say thank you. For liking me. Somehow you guys found my Facebook page, read my blog, and yet still stick around to hang out.

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And since you are all cool like that, it's time to celebrate a momentous occasion. The Caffeinated Autism Mom Facebook page finally reached 2,000 Likes, and it has been a loooong time coming.

Thanks for showing up and letting me know that I am not alone in my often-caffeinated, autism-laced wanderings in life. It's nice to know that there are folks there who share in some of my misery, successes, confusion, brand of hilarity, mishaps, and let's face it...crazy.

My gift to you is a sweet kitchen towel and potholder set featuring the vintage coffee lady that resembles me to a certain degree.

If I can ever afford my own custom graphics for this little blog, I imagine I'll change the CAM images to look a bit more like her. After all, she's a wavy-haired brunette, just like me. Oh, and you gotta love how she rocks the pearls and the fancy cup!

Now, get on with it. Win the cool kitchen towel set already. And, don't forget that sharing is caring.

**Please Note: Some folks with Internet Explorer are not seeing the giveaway widget below. It works flawlessly in the Chrome browser, if you are having any trouble.**

Saturday, June 15, 2013

You have a spine! Now use it!

This story starts with a keychain. A spinal column keychain.

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About 6 years ago I was just beginning my journey of understanding autism. I was trying desperately to connect with support groups in order to get some help with my boys. There were only a few groups in my area at the time, and they all seemed to be falling apart to some degree or another.

I managed to find a group that I really liked, and although it was slipping into oblivion, the leader took some time to connect with me. She saw my earnestness. She became my mentor. She became my friend. She helped me to become the mother, advocate, and leader that I am today.
One day she showed me her spinal column keychain. She told me that every parent of a child with autism or other special needs needed to have one. I gave her a cursory nod, but truly didn’t understand the importance of what she was telling me.

I get it now. I completely get it.
At the beginning of my family’s journey, I was going through the motions because I didn’t really know what else to do. I spent many nights up at all hours, scouring the vast Google universe, trying to glean whatever knowledge I could about autism, schooling, therapies and the like.

The word “advocacy” was an enigma. I knew it at a visceral level, but I didn’t truly understand what it meant.
I continued to learn. I began to question the status quo. I began to demand more. My kids deserved more. I became a more powerful and informed mother.

I realized I had a spine and I needed to use it. I needed to no longer be afraid, but be strong and stand for what I believed in for my kids. I needed to consider myself the expert. I was THE expert and I had to trust myself in that role, even more than putting my trust in so-called experts with lots of letters behind their name. I AM THE EXPERT.
Things will never be the same as they used to be, because I became an advocate.

As you know, I run a nonprofit organization and a support group. Advocacy is part of my job. The words, “find your spine and use it” are now the foundation of all advocacy training I do with families. It is that important. It is the first step to becoming an advocate for your child.
Advocacy is a bit of a game. A dance, really.

Parents need to feel empowered and claim their expertise regarding their own children. If they can’t do that, or aren’t willing to try, then they won’t get very far. And, they certainly won’t get their children what they need. You will need to learn how to hold other experts accountable for their particular responsibilities in your child’s life. In doing so, your child will be better served.
Advocacy doesn’t automatically mean a battle. But, it means you need to think like a warrior. You need to be proactive, and you need to be willing to stand for what you believe in. You need to find your inner mama bear and arm yourself with information and intention.

Preparation will put you in a better position to get what you need for your child. The proof is in the pudding, and in this case, documentation is king. Whoever has the best data wins. Take notes about everything because you never know when you will need a particular tidbit of information to prove a point or make a case.
This not only applies to educational advocacy, it applies to medical advocacy and more. When you know what you need and you aren’t afraid to ask for it, and you have documentation to prove your point of view, then you will have infinitely more success.

Parents who always defer to the “authority” or the “expert” will generally be treated as a doormat. It might not feel that way at first because everyone is being so helpful to you and your child. But, this helpful attitude can sometimes come from a place of them being allowed to do whatever they want and not having to be questioned about anything in the process. The cooperative parent is always the easiest for them to deal with and they’ll have smiles on their faces when they see you coming. But, over time, your rose-colored glasses will become less rosy as your child gets older. You will begin to see the holes and issues as they really are.
I feel sorry for the children of parents who don’t want to deal with anything because it’s too overwhelming, and they would rather completely bury their head in the sand. Those parents will not get very far until they are willing to see the truth for what it is. And, sometimes the truth is ugly. Avoiding the truth isn’t helping the kids that really need the help. I worry about the long-term future of children in these types of situations.  

I have seen over and over again that experts respect an informed parent. They will treat you differently when you have demonstrated your expertise and that you are willing to ask questions and hold them accountable. They will recognize that they can’t get away with steamrolling you, pulling the wool over your eyes, or placating you as a distraction. They will treat you as an equal and you will often get much further toward the desired outcome for your child.
It's always best to use a personality of sugar and spice and everything nice, but you have to also be willing to let them hear the mama bear growl in all the right places so that they know you mean business. Only unleash the mama bear when necessary. If you overdo it, then you are shooting yourself in the foot. A constant negative personality or an attitude that doesn’t consider compromise will get you nowhere fast, and you will find the experts will fight you harder and longer than before. And, that is something that none of us want.  

There are exceptions to every rule, and I’ve seen my fair share of them. But, as a general rule, parents who have found their spine and are willing to use it, will get much further to help their children than those who are wet noodles.
I encourage you to think about your spine and how it relates to being a better advocate for your child. It certainly isn’t easy, but please find your spine and stand tall with me…for all of our kids.     

Tuesday, April 16, 2013

Cousin It and the Bride of Frankenstein are in the car!

In my last post I told you that our family is dealing with a tremendous amount of stress right now. Since then my mom has been in and out of the hospital...and is currently back in.

When it rains it pours. In our case, it feels like a hurricane.

I feel like a raw nerve at this point.

However, something happened this morning that gave me a moment of humorous relief, and I thought I would share it with you. I find it important to focus on the good stuff to get me through the bad stuff. So, here is my attempt to do that.

Monkey is in orchestra. Orchestra practice happens twice a week before school starts, and in the case of Monkey's school, that time is 0-dark-thirty (a.k.a. butt crack of dawn).

Up until recently, we have driven to his school under cover of darkness because we were always up before the sun. It pains me to even type that. I would rather have been in my warm and comfy bed any of those days...

Well, I realized this morning that spring has sprung, and we no longer drive in darkness.

It was a typical Pacific Northwest morning: overcast, gray and misty. So, I did what I always do when I am stumbling around, bleary-eyed in the morning. I attempted to make Monkey's lunch and get him to eat breakfast, wake up Prince Charming to get his coat and slippers on, and then we headed off to orchestra. I put the defrost and heater on high so that I could see something through the windows of the car, and we got our trip underway.

Now, for the visual:  I am wearing some God-awful sweat pants that look like they've been through a war and have shrunk through repeated washings, which makes them unfashionably highwater. I have on my husband's old flannel shirt that he didn't want anymore but I thought it was too comfy to toss out. My slippers are fuzzy, but well-worn in that matted down, filthy fleece kind of way. And, the best part - I am sporting the most awesome naturally curly, long-haired bed head you have ever seen. I haven't even bothered to run a comb through my hair or even brush my teeth. Makeup? Ha! I laugh in your general direction. I am the antithesis of "put together."

So, we are driving along through the fog and the gray and I start to get a glimmer of light coming through the windshield. Could that be the sun? As we get closer to Monkey's school, the sun gets brighter and the fog gets thinner. It's actually quite a beautiful morning and I am silently reflecting on that.

We pull up in front of the school and I park in the line of cars with other parents waiting to let their children off for orchestra. The sun is brightly streaming through my sun roof and that's when I looked at myself in the rear-view mirror.

BIG MISTAKE!

To describe my hair as "finger-in-a-light-socket, sideways-mohawk, Bride-of-Frankenstein frizzy" does not even begin to touch what I saw. There I was in all of my backlit-by-the-sun glory, exposed by the sunlight to all of the cars around me. Those poor parents and kids that saw me must likely still be in shock.


I wasn't even this cute - she has makeup on!
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I averted my eyes from my own freak show to glimpse at Prince Charming in the back seat.

He likes to bring a throw blanket with him in the car when we take Monkey to orchestra. This habit originally started out as a "I'm sleepy and cold" thing and ended up being a sensory thing. He would throw the blanket over his head, much like you would if you wanted to pretend to be a ghost. It helped him block out the bright car lights that we would see in the dark mornings, and he liked the feeling of a warm and soft enclosure. It was a sensory tool he figured out on his own, so I have supported him continuing to use it in the mornings that we make the early drive.

As I looked at Prince Charming, the only thing I could think of was that he looked like Cousin It. He was covered up by a fuzzy blanket and it struck me as funny.


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Apparently the sunshine made me a little loopy or something.

Here I was, the Bride of Frankenstein with my raggedy clothes and wild hair, and Prince Charming was a more colorful version of Cousin It.

I felt bad for Monkey having to asssociate himself with us in light of our early morning, roll out of bed version of crazy. Had he been a neurotypical junior high schooler, he would likely have asked me to park down the street so he could walk to school so that we didn't embarrass him. Thankfully, that is not an issue we have to deal with (yet).

I think maybe next time I take him to orchestra I should at least comb my hair. Darn that sunshine!

Thursday, April 4, 2013

The rollercoaster of change

I try hard to be real with you. I try to be authentic. I’m not about giving you only the best version of myself and my kids. If you’ve been reading my blog for any length of time, you probably know that I keep things fairly eclectic. I go from serious topics to recipes to humor to a myriad of other things, and I try to keep things light whenever possible. Humor is one of the best coping tools I’ve got.  

I’m going to be honest.
I’m struggling.

I work hard at many things. In order to keep my head above water and not be overwhelmed by everything going on in my life, I put on an exterior of positivity and confidence. It’s not a cocky thing. It’s not a fake fa├žade. It serves a purpose. You know, one of those “create your reality” trains of thought. I know I won’t do any good to myself or anyone else if I wallow in all of my problems, so I don’t. It’s a deliberate choice, and I think it works for me most of the time.
But, I’m struggling. I couldn’t fall asleep tonight because I couldn’t stop thinking about things, and the emotions were too intense to allow me to sleep. So, I got back up to write this post. Since I started this blog, I have found that writing posts can be quite therapeutic. It helps me process what’s going on in my life so that it somehow feels more manageable. Writing is another one of my coping tools.

While change can be good, it feels really scary right now.
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I was at a place where I felt our family was more stable with the boys’ behaviors, their schooling, and even our finances were starting to slightly improve. None of it has been easy. However, if our past is any indication, getting comfortable usually means change is about to happen. I never seem to see it coming. You’d think I’d be used to the rollercoaster effect by now, but I’m surprised every single time we crest the hill and come screaming down into a new challenge.

Spring has typically been a hard time of year for us, so I know I shouldn’t be surprised. Spring Break in particular has been a time of regression for my boys in the past. And yes, we are smack dab in the middle of Spring Break right now. I don’t know what it is about the “spring forward” time change, the plants blooming and growing, and things happening with my boys, but there is something there.
I learned very recently that Monkey is having some issues that are affecting him much more than I previously realized. I don’t think he deliberately tried to hide anything from me, but he just has a hard time communicating what’s going on when it involves emotions. It’s easier for him to suppress things than to talk about them, because talking about it makes him very uncomfortable.

Of course, then I have immediate guilt about being too distracted from my nonprofit work to notice if there had been any silent signals from him. It’s a mother’s job to know. Was I paying enough attention?
Monkey is a very complex individual. He is layered like an onion. I continuously find there is more going on with him than meets the eye. It’s just really hard to get some of his layers to peel back so that I can gain a better understanding.

I immediately reached out for some psychological assistance to discuss my specific concerns, and was able to get in to talk with someone highly regarded for their work with autism. Monkey had his first appointment on Monday – on the first day of Spring Break. Fitting, isn’t it?
I have no idea how we are going to pay for it. I just know he needs it.

At about the same time I was figuring out the issues with Monkey, I learned that Prince Charming is struggling socially at school. Since he started talking, this has not been a huge concern for me. He has been much more social than Monkey, and I didn’t think I’d need to worry about that so much with him. Well, I was wrong.
And, with Autism Awareness Month, this is one of the busiest times of the year for me in my nonprofit work. It’s the height of event season and I’ve been at a dead run for God knows how long. I’m exhausted. That’s why I’ve been scarce here on the blog, because I’m too tired to keep my eyes open long enough to type anything coherent for you to read.

In the past week my Grandma was placed on hospice. It was not unexpected, but it’s still hard to grasp. Her brain doesn’t seem to be failing her, but her body is. I am thankful that I was able to go down and see her again last week and have her video chat with the boys on my cell phone. She thought that was a hoot. I haven't yet figured out how to prepare the boys for her eventual passing. Frankly, I don't know how I will deal with it for myself either.   
Tonight I learned that my parents will likely be moving back out of state. They only came back to Washington about 2 years ago, after having missed a good portion of the boys’ childhood. It was such a blessing to have my parents back and involved in their lives again. I have no idea what I will tell the boys to make them understand why they are moving. I think it will have a huge impact on Monkey in particular, who is already struggling to talk about things that make him sad. Having his Grandpa and Grandma move away will be hard for him to process.

And, I’m sad for me. I will miss being able to pop by their house. I’ll also miss the big surprise we got every time they showed up at our door unannounced and the kids went wild with excitement. And, I’ll miss all of the coffee dates my dad and I would squeeze in when the kids were at school. The thought of all that going away in light of everything else simmering in the background was the straw that broke the camel’s back.

So, I'm struggling.
I know this stuff is small potatoes for a lot of people. I also know that there are much bigger problems in the world.

But, for tonight, I’m allowing myself to fall to pieces over all of the changes that I don’t feel ready for, so that tomorrow I can hopefully re-focus and press forward.     

 

Monday, April 1, 2013

Legal priorities in WA: Is this an April Fool's Day prank?

I'm having a nausea-inducing sense of deja vu right now, and I wonder if I'm somehow getting punked on April Fool's Day (a.k.a. the first day of Autism Awareness Month). Beware, because a rant is a' comin'...

Scheduled today in my state's capitol of Olympia, Washington, is a Senate Health Care Committee hearing to discuss an abortion mandate, known as the "Reproductive Parity Act."

This is the same exact type of Senate hearing that I testified at when I was working to enact "Autism Insurance Parity" in the State of Washington. Shayan's Law, as it was commonly known, never saw the light of day because it got shut down by the Health Care Committee every time it was presented.

We had a HUGE grassroots effort, and it was standing room only at our particular Senate hearing. Autism families and our various supporters joined together for rallies at the capitol. Hundreds of us were knocking on the doors of our legislators' offices, scheduling meetings with them, sending emails, and making phone calls to voice our opinion about the importance of autism insurance parity for Washington.

For what?

Nothing.

Autism doesn't matter enough to the law makers in Washington State to do anything about providing mandates for coverage like so many other states in our country have already done.

It appears now that abortions could be more important than autism.

Pardon me while I vomit.

The fight for autism continues. Small strides are being taken through the work of some dedicated attorneys and an organization that is working to sue every insurance company that operates in Washington State, until autism coverage is mandated for everyone. God bless them for continuing the carry the torch of autism for all of us!

And, they are winning!

People are starting to get coverage for necessary autism therapies in drips and drabs. Unfortunately, my family's insurance company has not entered the court room yet, but their day is coming. I only wish it would come faster!


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Until then, my kids will continue to be denied coverage, and we will continue to not get the therapies they need so much, all due to the fact that we are not wealthy enough to pay for it all out of our own pocket.

It is SO WRONG.

It saddens me to think that abortion mandates are more important than autism mandates. Our kids with autism need help. Families are suffering under the financial burden of autism. Children are not getting services that could help them in both the short and long-term. The people who could enact meaningful change that would better the lives of so many of our state's citizens choose not to.

This is not what I consider to be a good start to Autism Awareness Month.


(Please note: This is my opinion about the importance of one issue over another, and I am entitled to feel the way I feel. Negative comments that seek to engage me or any of my readers in a bitter political debate are not welcome.) 

Monday, March 18, 2013

Inclusion vs. Segregation

This topic has been coming up a lot lately for me. It’s relevant in schools, in families, in circles of friends, and just in living life with a child that has special needs in a world that doesn’t always understand or tolerate them. It’s the argument between how to keep our kids in a safe and appropriate environment, and how to balance that with living in the real world.

Those of you that are raising a child with autism are well aware of the challenges that come with taking your child out into public, particularly when they are younger and less able to control their actions. This can be made worse when they do not have words for communication. Some of our kids that are more significantly affected will show their differences more obviously. You might take a look at them and just know that something is going on. Others that are less impacted by their diagnosis have more “invisible” symptoms. These less visible traits can be the bothersome things that get a child labeled as a “brat” or the mother as a “bad parent” when they are out in the real world.
In our schools, parents can fight bitterly for keeping their child in a self-contained setting because it is the most appropriate for their needs with the additional supports they might access in those classrooms. For others, the fight is to move the child out of that environment because it is stifling their growth and they need exposure to typical peers in a mainstream setting. Each can be equally appropriate, depending on the child.
A few weeks ago, a good friend of mine told me about a trip she planned for her kids to go out for dine-in fast food, with the assistance of their ABA therapist. This took some intent and planning and did not happen overnight. They made sure to go at a time that was off peak hours so they would have a better chance to escape without a meltdown. The trip out to the restaurant was no easy feat, particularly since she has 3 young kids diagnosed on the spectrum. She was dreading it, but knew that it would provide much needed practice for her kids, and it would be helpful to have the support of the professional that would accompany her that day.  
As you might expect, the experience had a few hiccups. And, someone at the restaurant could not resist making an intolerant comment when her youngest son started acting up. As a parent, when those things happen, you try that much harder to try to make your kid fit the mold of what is expected in public, and you become keenly aware of how different they are in that moment. It can be excruciating to try to overcompensate and do anything to make things better when you are the target of negative attention like that. She maintained her calm, but this person could not resist continuing to make disparaging remarks. And, like probably anyone in her shoes would do in the same situation, after a certain amount of time passed and the agitation increased, she let him have it. Loudly.     
I have had plenty of moments when Grumpy Badger was wildly melting down in public while we were waiting to check out at the grocery store, or when he would start screaming in the library, etc. I got my fair share of judgmental and searing stares, as I avoided eye contact with others and tried to rush my boys out of the situation before it got even worse.
I tend to be fairly non-confrontational, but those experiences taught me something. As a parent, you have to find your spine and use it when needed! Sometimes you have to be willing to provide an impromptu autism awareness lesson for those around you. If you can do it without yelling or breaking down into sobbing, all the better.   
Things have gotten a lot easier for us as we venture out beyond the doors of our home. We are no longer in crisis all the time. My boys have grown in their skills and abilities, and they are gaining maturity in certain areas. We have our moments when things are still difficult, but it’s definitely not as hard as it once was. For that, I’m thankful. But, I also vividly remember what it was like. And, I know so many people that are continuing to go through these situations daily and may not ever know what it’s like to have a reprieve.
This topic came up again when I was recently interviewed by a college student about the challenges of parenting a child with a special need. She was specifically looking to learn about the perceived societal stigmas and how parents cope with those pressures. I realized that the way I deal with the stigmas and expectations is very different than when I first became a parent.
To be blunt, I don’t give much of a crap anymore about what people think about me, my kids, or my parenting. This is autism, and it ain’t always pretty.    
One of the things I have been working on through my nonprofit is the normalization of differences and creating tolerance for special needs in all settings. I have given many presentations touching on this topic. It’s needed everywhere. Through educating and bringing awareness to a group of people interacting with the public (which includes families that have children with special needs, like mine), some of those people become the catalyst for change. They can take the information to heart and forward on their new perspective to others. I know it works. People have told me how they’ve shared the message, and it’s gone far beyond them after they heard me talk one day. The word can spread when people are willing to listen. The impact can be far-reaching.    

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I just read a very interesting article posted on March 16, 2013 from Amy S.F. Lutz in Slate Magazine on this very thing. Please take a moment to read it here. It’s well worth a few minutes of your time! She provides a lot of context and makes you really think about this idea of special needs segregation vs. inclusion.
For me, it is a very loaded topic because it touches on so many things.

I can’t help but draw a parallel between the intolerances shown toward people of different races and the intolerances shown toward people with both visible and invisible disabilities. It’s like we have a new “ism” now, but there is no defined name for it other than discrimination and intolerance.
A new form of segregation can be found in a self-contained classroom, whether that’s good or bad.

Self-inflicted segregation happens when parents will bend over backwards to conduct errands at off-peak times, trying to avoid large audiences and be as inconspicuous as possible. I have done this more times than I can count. It’s usually much safer at home, and this is why so many autism families feel so isolated.
We know that the world isn’t ready to deal with the influx of children and adults with autism and other special needs. As parents, we are trying to prepare our kids for the world and also prepare the world for our kids.

Have you thought about how to educate others and create awareness without it feeling confrontational and creating further discord? What works for you? What hasn’t worked?
If you haven’t yet thought about it, maybe now is the time.             

 

Wednesday, March 6, 2013

The R-Word Needs to Go B-Bye!

 
Children with special needs should never be made to feel “less.” They may be different, but they are not less. (Thank you, Temple Grandin!)

I am fortunate that I have never heard the R-word uttered in my presence as it relates to any child. Yet, I know it is happening. All over the place.

Children and adults that have challenges, along with their families, are being made to feel like they don’t deserve to share the planet with the rest of the population. Judgmental people and hurtful words run rampant.
When I hear stories of people I know, bloggers and friends, having to experience this sort of discrimination, it saddens me. It’s not easy to live and thrive with a special need or an intellectual disability. Families go through a lot and they do not deserve to be ridiculed. You would think that we as a society would be more tolerant by now.

There is still a lot of work to do! It can start with you.
Spread the Word to End the Word.

Visit http://r-word.org and learn more about how you can make a pledge and participate in activities near you.   

Thursday, February 28, 2013

When autism awareness is a bad thing

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It seems weird to think that autism awareness could be bad. But, I believe in certain situations it can be.

There have been some newsworthy events happening in my community surrounding an autism charity. This organization had a platform of “autism awareness” and had a lot of success at spreading awareness by selling autism-themed trinkets in front of grocery stores.
Being that I’m involved in the nonprofit community, I have known of this organization for a while and our paths have crossed on more than one occasion.

The first time I saw them, I was walking into a Wal-Mart store and I saw their tables out front with all of their autism stuff. With a warm feeling in my heart, I picked up a brochure. After all, they were representing families like mine!
The second time I saw them, there were a few people gathered around the table making donations, and so I stopped to try to learn more. I waited for the crowd to disperse a bit and then started chatting with their representative. When I asked a couple of questions, basic things like what they fund and what their mission was, I kept getting referred back to their brochure and to call their office with my questions.

That put me aback. I thought it was strange that their own people couldn’t speak to the work that they were doing. I politely picked up another brochure and went about my business, making sure to look them up when I got home.
And, I did. Their website was certainly snappy enough. Someone had put some time into the design and it wasn’t merely thrown together. There was content, but I didn’t see a lot of information, and that bothered me. I let it go and forgot about it until another day.

Time passed, and I was working on a nonprofit autism event with some other local nonprofits. The aforementioned autism organization asked to be a vendor at our event. We agreed. At the event, we noticed that they were collecting money and their cash box was stuffed full with donations from the attendees. That rubbed a few of us organizers the wrong way. Here we were, a bunch of nonprofits representing ourselves as autism resources, and they were the only ones seeking money with no real information provided. It just didn’t feel right.  
After some later discussion and research, things started coming into focus. This organization was not who they were cracked up to be. It was merely a front for making money for the founders. Autism was the popular cause they chose.

It has come to light that they didn’t do much of anything to support autism in our area. They were keeping the vast majority of the money they raised for themselves. And, they were under investigation both in Washington and Oregon.
When I learned all of this, I was hurt. I felt duped. I also felt somehow responsible for people giving their money to this organization who attended the event I worked on. That made me angry.

The news was shared and people started paying closer attention. I began hearing stories of my friends notifying management at the stores they shopped at when they saw the organization camped out in front. In fact, on several occasions, they were removed from soliciting at those stores. Little by little, the word was getting out.
It’s all a matter of public record at this point. They have since ceased operations here in Washington, and I’m happy for that.

However, I get a twinge of anger every single time I see one of their bumper stickers on a car. And, that happens almost every day. They were very good at “autism awareness.” That particular brand of awareness feels like a kick in the stomach every time I see their logo on someone’s car in the community. In fact, even today, I had to resist the overwhelming urge to follow a car into a parking lot and try to tell them the truth about their bumper sticker. It almost feels like an obligation since I am an autism parent and also the head of nonprofit who is actually trying to do good for local autism families.  
Lord knows, I haven’t profited from my nonprofit work. It’s all about getting the information out there to where it needs to go, and connecting people with resources they need. Maybe someday I’ll make a livable wage, but I guarantee it will be earned fairly.

In this situation, I feel like autism awareness has created a dark cloud over the community.
Stores are no longer trusting of organizations (understandably), and it’s causing negative effects for others who are legitimate and want to get their story out there. Another organization I know and love comes to mind that has been barred from selling raffle tickets in front of stores, with all proceeds benefiting a major annual autism event. It is a sad thing for them, and it’s sad for all of us autism families that enjoy that event.

A disservice has been done to autism awareness causes in my state, and it’s because of one, very effective, yet short-lived organization. Other organizations are now directly suffering from their actions.
Worse yet, unknowing people are driving around with evidence of fraud plastered to their car’s bumper and they have no idea.

I guess the one thing I learned from this experience is to ALWAYS research people and organizations you give to. Personally, I have researched many organizations, and after learning the truth about how they spend their money, have made the choice to never give to them again.
I’ve found, generally speaking, that larger organizations may not manage their money very well. I am no longer blind to big events and fundraising campaigns that can’t even break even. It’s sickening to think about all of those people walking for all sorts of causes with their matching t-shirts and the sense of doing something bigger than yourself, and then learning that in some cases, none of that money will go toward what you were walking for. In fact, they may have even lost money on the event! Or, in the case of something like a fancy dinner auction, most of the money raised may have been spent on the caterer and auctioneer with only a fraction of a percent going toward anything helpful. Or, maybe it all ends up paying the 6-figure salaries of the organization’s executives. Stuff like that is rampant.

Any way you slice it, I learned that most of the money I was giving away was not going where I wanted it to. And, now that I know that, it’s no longer acceptable to me.
My new way of thinking is that any money I give (beyond what I already donate to my own organization) goes to smaller, grassroots organizations that keep money in their local community. I can see the actual impact of the programs that I support because the money stays here and I get to know the people behind the cause. Now, that is something I can believe in.

I am no longer swayed by slick ads, radio spots, and huge organizations that have a ton of support and name recognition. I seek out places that can deliver tangible change, from person to person. And, for my money, I believe that’s the best way to create awareness of any kind, with a lasting and positive impact.
I encourage you to look around your own community and identify organizations that are doing good work, and if you can, support them with your time and resources. You will feel a deep sense of satisfaction that your actions are truly helping others. Nonprofits, particularly smaller ones, are always looking for people to join ranks and provide a helping hand.

Awareness should always be a good thing. Isn’t that the point? I am now working to ensure that autism awareness in my local area is restored to its good name and works.
Help me be part of the solution by not giving away your resources blindly. Do your best to learn about the work, mission and outcomes of organizations near you. The effect will be great! And, in the case of autism awareness, it can once again be a good thing.                  
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