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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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?      

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.     

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 façade. 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.     

 

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.   

Parenthood and the cancer diagnosis

Lately, every time I sit down to watch the NBC show, Parenthood, I am in tears by the end of the episode. And, it’s not just a girly hormonal thing.

Generally speaking, I enjoy the show because they incorporate a lot of relevant topics, weaving them throughout their episodes. Things like: adoption, military/PTSD, Asperger Syndrome, and the larger concept of family.

Their recent story line with Kristina getting breast cancer has touched me. Deeply.

As with most people, I have a family connection to cancer. I have seen loved ones pass away from the ravages of this disease, and it isn’t pretty. It’s never pretty.

I have dealt with my own husband getting a cancer diagnosis just before his 30^th birthday.

It was the most difficult time of my life. That seems almost dumb to say because I wasn’t the one who had to deal with cancer – surgery, bone marrow biopsy, scans of all kinds, chemotherapy, radiation and more scans.

I cannot even imagine what Titan must have gone through in those moments by himself.

That’s what I was thinking of as I watched the last scene of the “Together” episode of Parenthood, when Adam was sitting with Kristina in the infusion room, holding her hand while her first round of chemotherapy was administered.


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I did not get the opportunity to be there with my husband as he went through the process, and it hurts me to this day. It was just not possible.

I wasn’t there when he got a terrible chemical burn when the chemo blew through his vein and destroyed the tissue inside his hand – which still bothers him to this day. I wasn’t there when they began diluting the chemo because of how much it burned going in, which took 2-3 times longer to administer. I wasn’t there when he felt immediately nauseous whenever he pulled into the parking lot of the hospital. I wasn’t there when he almost walked away from his last round of chemo because they couldn’t find a vein and he had to spend hours at 2 different hospitals just trying to get the IV set. I wasn’t there when he got the tattoos on his chest to calibrate the radiation machine. I wasn’t there because I couldn’t be.    

We didn’t have much help during that time. It was pretty much us against the world. I had to take care of my non-stop toddler and screaming baby during Titan’s treatment. It didn’t help that the kids and I were chronically sick the entire time he received chemo. We had one cold after another after another. Titan had to wear a surgical mask whenever he entered our house. For months. Even if I had been able to secure a babysitter to watch the boys while I went with Titan to the hospital, I couldn’t be there because I was a germy threat to each person that had a compromised immune system.

Titan after a round of chemotherapy - December 2005

 

It felt terrible knowing that I was stuck at home and my husband had to go through treatment completely alone. As his wife, it cut me to the core. And there wasn’t a thing I could do about it.

At the time, Monkey was in the thick of the terrible two’s, which we later found out was autism. Prince Charming was only a few months old, and he didn’t sleep, had terrible reflux despite breastfeeding, and he cried all the time. Of course, now we know he had undiagnosed food allergies and autism.

Every single day was intensely challenging, and if I managed to get a couple of hours of uninterrupted sleep a night, I counted myself lucky. Dealing with Titan’s cancer in the middle of all of that was just one more layer of chaos to a life that already felt completely out of control.

I was trying to figure out how to parent my children, who both seemed like unsolvable puzzles. I was trying to care for my husband who still had to work and support us, and couldn’t really help me with the kids or the house. All I could do was educate myself about cancer and treatments. I felt that if I couldn’t be there in person to show my support and sit with him for the hours he had to be there, I could show support from home by learning as much as possible to help him.

During the course of my husband’s diagnosis, surgery and treatment, we made a conscious decision to not focus on being scared or sad, but to maintain a positive and proactive approach. We did not grieve the diagnosis or dwell on anything that could go wrong. We both knew that Titan had to stick around and that there were no other options, so we agreed on maintaining that attitude and asked God to help make our faith a reality.

When we sat in the room with the doctor and went over the results that showed the presence of cancer, we accepted the diagnosis with a smile and not tears. Our response was unsettling to the doctor, who scolded us for not taking things seriously.

It was then that I became educated.   

Up to that point, I was staunchly mainstream with all of my ideas about medicine, food, and doctors. Everything I thought I knew was challenged. And, that is when it all changed for me.  

I learned the difference between vegetarian, vegan and raw. I learned what a naturopath does. I learned that there are stores dedicated only to supplements, vitamins and nutrition. I learned about acid-alkaline balance. I learned that charities like the American Cancer Society and Susan G. Komen are not all they’re cracked up to be. I learned that there is a difference between juice you buy at the grocery store and juice you make at home with a fancy machine.

I learned so many things!

I tried to use this knowledge for my husband’s benefit as he dealt with cancer. He lost 30 pounds, he lowered his cholesterol significantly without prescription medication, and he didn’t lose his hair as they promised us he would (although it did thin a bit). The doctors were extremely worried about his weight loss, and we were able to convince them that it was actually a sign of his good health because of the changes we had made to his diet and nutrition. We were trying to support his body so that he could better deal with the toxic effects of the chemotherapy.

It has been 7 years since he received his diagnosis.   

One thing is for sure: everything we learned about cancer has helped us with autism. Everything.

For that, I am thankful for the experience, despite how difficult it was. My eyes may not have been as open had my husband not had cancer. I probably would have never considered anything “alternative,” like the GFCF diet that unlocked speech for Prince Charming.

My boys are better off now because my husband had cancer. That is a completely bizarre thought, but it’s true.

I wish I could have been there for my husband in the ways I had hoped to as his wife, but our life just didn’t allow for it at the time. I think any wife and wannabe super mom always hopes to do it all, and it’s hard when reality doesn’t allow you to even try. I know that I can’t change what happened and that Titan understood, but I still wish I could have done more. There is still a lot of pain and pangs of guilt over that, which all came flooding back when I watched Parenthood.

Now that we are so far removed from the diagnosis and treatment, I can allow myself to feel those feelings. A little bit of distance from it helps me realize how remarkable the whole thing was, and how well we did in the circumstances.

It feels like an eternity has passed, yet when watching the show, it’s like it was just yesterday. I guess as long as the cancer storyline continues on Parenthood, I’ll get a little bit of therapy one episode at a time.      

          

I think, therefore my head hurts.

There are a few posts I wanted to write in the past couple of weeks, but things have just not materialized. My mind is swimming right now with everything going on in my life.

I feel like I've been notably absent from the blog recently and I probably needed to at least check in and let you guys know I'm still here. I'm alive and kicking, but I'm always on the go! I barely have time to eat, much less write a witty, awesome post for you to read! Because, as you know, ALL of my posts are witty and awesome! (Did I just hear a retching sound somewhere?)

I have been so busy working on the nonprofit - having meetings, advocating, speaking, writing, event planning, thinking, reading, strategizing, organizing, creating and dreaming - that I've barely been home the past two weeks. Make that this month. Well, if I'm honest with myself, I've been at a dead run since the end of February. 

Last week I realized that in only a few more weeks, school is out for the summer. Talk about having a heart attack right then and there! How and when did this happen? I didn't give my permission for time to move this quickly! There is so much work to be done before the end of the year!

I just have to say that even though my schedule has been out of control and insane, I'm happy. I am 1,000% passionate about the work I'm doing, even though I'm not yet funded. I could not ask for a better or more supportive husband, and I have the world's greatest friend in Miss C. Without their support, the nonprofit work would be impossible.

And you know what? People are showing up. To participate. To volunteer. There are some really great people choosing to get involved with what I'm trying to do and help me create something worthwhile and valuable to the special needs community. That right there is astounding and humbling.

When the kids are out on summer break in only a few short weeks, my schedule will clear for the first time in months. Even though I dread summer break and what that transition will mean for my boys, I think there will also be a small sense of relief as well. The thought of slowing down long enough to catch my breath is kind of thrilling! Work will not cease, but the intensity will lessen. And, this is going to sound crazy, but I'm looking forward to doing some plain old filing! I also hope to finish organizing my nonprofit's office and finally getting the last of the stuff out of boxes and into their proper places. I think that will be a good summer project.

Something deep inside me tells me that I'm doing what I need to be doing, and it's happening at the right time. I am convinced that this is going to all work out somehow. Even though there are hurdles and obstacles, things will all fall into place. Personally I have a lot of fears and worries, but God is giving me a sense of peace. Doors have been opening and I am just walking through them. In fact, I can't wait for the next doors to open so that I can walk through them, too. Bring on the doors!

That's where I'm at right now. It's a good place. A bit nuts, but good.

For the final push into summer over these next few weeks, it will be hit or miss around here. I will try to post once per week (and I'll be pretty darn proud of myself if I do more than that!). I hope to see you back here early next week when I will feature a new giveaway. Be watching for that!



Flashback Friday: Clearing the clutter

Last year I wrote about a very big project: cleaning my office. I will admit that when I decided to start a nonprofit, the plans to finalize my home office went right out the window. I got pulled in some different directions and then began focusing on the more fun task of how I would organize my new office outside of my home.

It has been a labor of love. I am seriously addicted to office supplies and decorating new spaces. It was a joyous event to move in to my beautiful space. I feel very fortunate to have received such amazing space, and wanted my office to stay on the level of the rest of the newly-remodeled building. 

Guess what? I’m still technically moving into my new office, AND I’m still cleaning up my home office! My new office has been coming right along, piece by piece. It was almost unfathomable how much stuff I had collected over the past several years related to autism and special needs. Getting it all out of my home and into my nonprofit space was a relief. But, I am still cataloging all of my lending library resources, binders, files, and stacks of paper into some sort of sense. With the multiple book cases, filing cabinets, and various stuff, it continues to be a big task.

Last weekend I did some major catch up on my home office. I went through most of the rest of the boxes and sorted things. I was able to get a lot of it out of the room, and I am happy to say that most of the floor is now visible for the first time in a LONG time.

My boys are so proud of the progress that was made, they have been showing it off to people that visit our house. It feels good to know that I was able to make such an impression for spending only 2 afternoons going through old stuff.

There is more work to do, both at home and at my nonprofit's office. I sometimes wonder if I will ever be done. But, I’ll keep taking it one step at a time and continue working toward my goal of fully-organized, immaculate spaces. When everything is exactly the way I want it, I’ll be in such office bliss that I won’t ever want to leave!

Read all about how starting to clean my office last year brought back some joyful and painful memories, and how the entire process has been good for my soul.

What can you never seem to get organized?     

Guest Post: The Oxygen Mask Project

I got a pleasant surprise recently. I was contacted by the folks at The Oxygen Mask Project. They read my Not-So-Caffeinated Autism Mom post about how I was starting to put myself back on the priority list again, and they wanted to share my post with their readers. Very exciting news, indeed!

I love the concept for their site and their Facebook and Twitter communities. If you're on Twitter, check out #yearoftheoxygenmask.

Here is a direct quote from The Oxygen Mask Project site that speaks to their mission:

Once upon a time, a group of special needs moms started talking about their lives. They talked about how devoted they are to their children and to making sure that their kids’ needs are met. But somewhere along the way, they had forgotten to take care of themselves.

To care for others, you have to take care of yourself as well. Too often, we feel guilty as parents when we take time to do something that is just for us. But it’s how we can keep giving our best to our children.

If you’re anything like me, you have put yourself last in order to try to be a good mother and wife. This is especially true when you are a hard core people pleaser with a slight super mom complex. And, it makes things even worse when you throw autism into the mix. Sound familiar anyone?

When was the last time you put on your oxygen mask and took a breath? Maybe you should take a moment today and do just that.

You should start by heading over to The Oxygen Mask Project to read my post! Show them some Caffeinated Autism Mom love. While you’re there, I know you’ll get some self-care inspiration. So, what are you waiting for? Go! Now!

Happy 2012!

It’s the beginning of a New Year! Last night I got to thinking about 2011 and how, once again, things didn’t turn out the way I expected. But you know what? I’m actually happy that my wishes didn’t all come true. Want to know why? Because for the umpteenth time, God has proven to me that His plan is better than mine. My year actually went better than I could have expected, and although it wasn’t without struggle, God always provided for our family.

My mother-in-law told me several years ago that there is no such thing as a coincidence. Instead, coincidence is actually a “God-incidence.” Those words rang true in my heart and have been a source of comfort to me ever since.   

One highlight of 2011 was starting this blog back in January. It seemed to be an inadvertent whim at the time. I certainly didn’t set out to be a mommy blogger. I didn’t plan to hurt my back and be bored silly because I couldn’t move. But, things happened. And, I’m here. And, you’re here. With me. And, that is truly awesome!

Blogging helped me rediscover my love for writing, which is something I had stuffed away for many years. It gave me the nerve to try writing an essay for inclusion in a book, and the publisher was crazy enough to include my essay in the book! Talk about a dream come true! I’m a bonafide author, of a sort…  

A blessing in disguise was the fact that I didn’t find a job. It didn’t seem very nice at the time and was a huge source of frustration! Despite some great experience and education, I was apparently unemployable. It was hard to deal with the fact that I didn’t even get a single interview despite extensive efforts to find work. That had never been a problem for me before. Ever. That was a tough pill to swallow.  

When we were first married, Titan and I agreed that if we were able to, it was important that I stay at home with our children until they were at least old enough to attend full-day school. As a result, I have been a stay-at-home mom since I had Monkey almost 9 years ago. In the summer of 2010, Titan and I made the decision to get serious about finding a bigger house and we began actively preparing our house to sell. We managed to find our dream home in the best school district in our area, so we had a goal to work toward.

The one thing standing in the way of our dream was that we couldn’t do it all on one income, and I would need to get a job to help pay for it. I was excited about the idea of returning to work. But, as you know, that didn’t pan out. In the meantime, our house continued to decline in value due to the crazy economy and we watched our equity quickly vanish. Now we are in the unfortunate position of not being able to sell without losing money. That’s not a good feeling, but we also know it is not uncommon right now. Remembering that God works in mysterious ways has enabled me to come to terms with the fact that my plan did not materialize in the way I thought it would, and it probably won’t for a very long time. 

Feeling the need to do something (beyond staying up late at night to write blog posts!), I decided to start a nonprofit organization for special needs families. I realized that I could do something I love, even if I was unpaid, and create my own dream job. Why not? I didn’t really have anything to lose! And, I would have never even tried something so crazy, had my plans not failed so miserably. 

You cannot even imagine the things that fell into place to get the ball rolling on the nonprofit! So many things happened in such a miraculous way that I know for certain that I am doing what I should be doing and it’s happening at the right time. And, I am excited to be a part of it. My hope is that one day I will get paid, but for now, I’m happy that I am at least able to tap into my passion for the special needs community and build something great.

God continues to provide and that’s all I can ask for. I believe that everything else will follow in God’s timing and I can’t wait to see what that will look like. Even if I rebel and feel disappointment that things aren’t always “going my way,” I know that in the end, lessons will be learned and blessings will flow from those difficult moments.

As long as I don’t force my own agenda and allow God to work, I know things will be better than I could have imagined. I learned this lesson when I met my incredible husband. Since I tend to be a Type-A control freak, this is a lesson that God continues to teach me all the time. Maybe one day I’ll get it through my thick skull and just make it easier on myself!

So, I intentionally choose to begin this year with a sense of peace and hopeful expectation that things will not go according to my plan and desire, but instead be true to the path that God has for me. I know there will be a lot of hard work and challenges ahead in 2012, but I truly cannot wait to see what blessings will pour forth.

Wishing you all the best for 2012,
Happy New Year!

-Angela       



Checking in

The last few weeks have been a rollercoaster, and not necessarily in a fun way. You may think by now that I’m a slacker and have abandoned posting content. No, I haven’t forgotten about you, my dear readers. The fact that you come back time and again to read my random stuff serves as a great motivator.

However, as of late I’ve been distracted by various crappy issues. One of the biggest things going on is that Monkey has been getting bullied. I won’t go into that right now because I’ll just get angry and I don’t have the energy. You can be sure that I do plan to write about it sometime soon.

I have dreamt up many brilliant posts, but they never seem to make it out of my brain. When I finally have a moment to type something up, I am just too dang tired to keep my eyes open while I stare at the computer screen willing myself to stay awake. I can’t tell you how many times I have nodded off while working on my laptop in the wee hours of the morning in the past week or two. You gotta love a good kink in the neck as a handy wake up call.

Anyway, I thought you should know where I’m at. I’ll continue to post as I can, and I hope to emerge from the crazy sometime soon.

Oh, and just to let you know, I'm running a contest on the Facebook page! If we can get up to 300 'likes" by the end of the month, one random Facebook friend will win a prize that Monkey picked out for you. You're dying to know what it is, aren't you? Share Caffeinated Autism Mom with your friends and let's make this giveaway happen!

For now, here is a link to a post that makes me smile. Smiling is good. You could use a smile, right? Then you should definitely check it out.

A new chapter

This weekend I was a part of something wonderful and I wanted to share it with you. I’ve been running a support group for special needs families for almost 3 years now and have been doing it as a one-woman show pretty much the entire time. I have always been happy to do it because I know that the group is needed in my area, and frankly, I need the support for myself. Each meeting I get to connect with great people. No matter the diagnosis, we all share similar struggles. And, many of the attendees I can now call my friends. The whole thing is a true blessing to me.

The best part is that I have an opportunity to learn something new at each meeting. The speakers always have great information to share and I soak it up like a sponge. I have a desire to learn, not only for myself, but for the sake of my children. This should come as no surprise. I was always a nerdy kid and got really good grades. I even went back to college (before kids!) to get my Master’s degree because I thought it would be fun. I still get weird looks about that one, especially when people learn that it wasn’t to gain fame and fortune or an executive position somewhere. I just like school, I guess. Yes, I know I’m strange.

As an aside, I’ll tell ya what that fancy and very expensive degree got me in the job department...nada. Zip. Zilch. I’ve always found a job easily, but even with an MBA and an extensive job search in the past year, I got nothin.’

I am a self-proclaimed busy body and not having a job when our family could use some financial help is not my idea of fun. To make myself feel better, I always find ways to stay busy and do work (even if it is unpaid). Helloooo, can you say blogging? Anyway, I got to thinking about how I could create my own job doing what I love. I’ve found that my mindset has changed drastically since my boys’ diagnosis. My heart is truly in the special needs community now. It’s what I am passionate about. I mean, how can I not be passionate about something that affects me every single day?

Since I started the group I’ve met hundreds of people who have children with autism and other special needs. Not one person has had an easy time of anything. We all struggle and there are some significant needs out there. I have to say that my life is pretty darn easy compared to some people I know. I recognize that and I appreciate what I have. I also see it as an opportunity to do something when others might not be able to.

I began thinking that I should take my group to the next level.

Happy Half-versary!

I’m a sucker for an anniversary. I’m a girl, after all. I’m celebrating a blog half-versary. Caffeinated Autism Mom is now officially 6 months old! I can hardly believe it. Where has the time gone?

I thought I would take a moment to reminisce and see how far the blog has come since January.

I started this whole crazy idea of a blog with a post entitled, “Special Needs and Gifted.” I told you about how I was applying for Monkey to test for the highly capable program in our school district and what it meant to possibly have a twice exceptional child. The update to that story is that we got back his testing results and he did not qualify for the program. So, we continue on as usual. This does not change the fact that Monkey is wicked smart and we’ll continue challenging him the best we can at home.   

A few days after that initial post I described my intentions for the blog in, “Me, me, me, Monday!” I introduced you to my family, told you about how I hoped things would work around here, and how often I would post new content. I gotta tell ya, I think I’ve been keeping up my end of the bargain. What do you think?

I’ve done a lot more in 6 months than I thought I could even do in the first year. Off the top of my head, I’ve guest posted, I gave the page a facelift from its original look (and trust me, I’m NO artist), had a radio interview, made lots of great blogger friends, and even won a mommy award. And, I am actually surprised that coming up with stuff to write about day after day has not been that hard. Apparently I have a lot to talk about. I get that from my mom (and as much as he disagrees with me, my dad, too). :-)

I have a feeling that the next 6 months will be full of more great surprises, too. Only time will tell.  

For now, I’m redefining my intentions for the rest of the summer. It’s a bit more difficult to write when my kids are always with me and we are staying up later because of the longer days. I don’t get as much time to myself as I would like, and I’m thinking that I should cut myself down to 2 to 3 blog posts a week until the boys start school again in September. I think my brain will thank me. And, you never know, I may find the time to write more. It’s possible.

So, I hope you will join me in my more relaxed schedule for the summer. I don’t think I even know the meaning of the word “relax” anymore. Yikes. I need a nap. Is it fall yet?

Oh, and one more thing…a very important detail I don’t want to forget. I am so very happy you have joined me for this ride. I am thankful for all of my fabulous readers! Each one of you.

Now, get out there and share my blog with your friends! See the Like, Tweet, and Share buttons at the bottom of this post? Click on them! Let’s get more people on the caffeinated bandwagon. Don’t forget to “Like” Caffeinated Autism Mom on Facebook. Thanks for the love, people.

Me, me, me, Monday!

It’s Monday. Blah. How can I make today’s entry more interesting? I guess it would be easier for me to write about something light - nothing too serious. Let’s make it something personal. Whatever pops into my head first. Now, give me a minute to think about that… I need coffee. Where’s my coffee?

Well, I think this would be a great time to define my intentions for this blog and formally introduce you to my family. So, violà! We have a topic! Shall we begin?

I guess I haven’t really thought long and hard about why I am here doing this blog at this moment. In a way, it just kind of happened. If you don’t know me personally, then you have no idea that I run a support group for families with special needs children. For the past couple of years I have sporadically blogged on a site dedicated to my group, as well as for a non-profit special needs foundation I volunteered with. I’ve had the opportunity to meet lots of wonderful people, become acquainted with many more through mediums like Facebook, and I’ve had the privilege to read some really great blogs along the way. All of these experiences have been rich, rewarding, and inspiring. I’ve thought off and on about starting a new blog but never did anything about it. C’mon now, does the world really need another blog? Besides, I wasn’t sure I could make another commitment that would take up my time and energy, which is already in exceedingly short supply.

In the past few months, three key moments got me thinking more about this crazy blog idea. I had a speaking engagement where I was given an opportunity to share some of my personal moments from our family’s journey with autism. That experience was literally the most fabulous time I’ve ever had speaking in public. It was honest, emotional, and fulfilling. Soon after, I had another chance to share some of my family’s key moments, both in pictures and in writing. Once again, even though it was an emotional process to get everything on paper, it was truly rewarding. Then, a few weeks ago I had to submit a personalized cover letter for a job I was applying for. The letter was supposed to showcase my writing style. I allowed myself to be open and humorous with the letter, and it was actually a fun exercise in seeking employment. In total, all three of those moments helped reconfirm that I like to write, I like to share, and I actually have a lot to say that could be helpful to others.

This brings us to two weeks ago. I injured my back. Don’t ask me how, because I don’t really know. Needless to say, I’ve been stuck in a chair, or in bed, mostly immobile and bored out of my skull. Since I’m a busy-body multi-tasker, I can’t just sit in a chair all day. It drives me insane. My husband offered to give me lessons in laziness, since according to him, he’s an expert. Whatever. My laptop soon became another appendage during those days, and out of my painful boredom, I birthed a baby blog. And that’s how it happened. So, here I am. And, in case you wanted to know, my back is finally starting to feel better. Hooray for that!

I’ve had the blog up and running for almost a week now. And, you know what I realized? This is something I enjoy. I have friends who blog professionally. Heck, if I get to be really good at it, there’s actually a chance of making some money doing something I enjoy. Wouldn’t that be great? We could certainly use a little help in that department! And, the added bonus, no more looking for a job! I know this won’t happen overnight, but I can dream.  

To my beloved reader, I will make a commitment. I will do my best to provide several entries a week, if not daily, Monday through Friday. However, my life is fairly insane and I’ve learned that I have to roll with the punches sometimes. That means you might not hear from me every day because things got a little nuts. I’ll do what I can, without driving myself to drink (alcohol, that is). Well, maybe a little…

I know I’m not the best writer in the world, but I hope there’s stuff in here you like to read. I want to write about things you’re interested in. Input from your comments can help me generate new topics. Feel free to leave me your feedback!

Now, I would not be here without my family. I’d love to tell you about the wonderful men in my life! First, a disclaimer. Since I intend this blog to reach a larger audience than I’ve written for previously, I am going to give my family members fake names. Who knows? I might change my mind and end up spilling the beans at some point, but for now we’ll try this out. If you are one of my friends on Facebook or you live in the Pacific Northwest and know me personally, then please respect my desire to help maintain anonymity for my family, and do not refer to anyone by their actual name in a posted comment. Thanks for your cooperation!

First is my most amazing husband, Titan. Yes, as you can tell by the name, he’s a tall drink of water, and he’s the best guy any girl could ever want. Seriously! We’ve been married for over 12 years. I couldn’t do what I do for my boys without his help. He fully supports me in everything I do: my support group, speaking engagements, community events, advocacy, mentoring, and now this blog. I’m going to turn myself into a big ball of moosh talking about him, and I’m sure you’d rather not pair your coffee with nausea. Moving on…

Next is my first-born, Monkey. He is 8 years old, and he’s as skinny as they come. As you can tell by the name, he’s likes to climb. He can also contort his body into various pretzel-like forms, and he’s all knees and elbows. Not only is he handsome, he is very intelligent. He’s my electronics junkie. We’re talking Wii, DS, laptop, everything! Besides toys that require electricity, he loves books.

And then there’s my youngest, Grumpy Badger. Or, on a good day, Prince Charming. Depending on his mood, you might see either name. He is a hot and cold kid, and when he’s on, he is the most social and amazing little boy you’ve ever met. He has a smile that makes people melt. Well, mostly women. When he’s grumpy, boy you better watch out. His favorite things are trains, cars, and Legos.  

Now, there’s one more person that needs to be included. Her name is Miss C. She is a super-duper friend of mine that will drop everything and come running when you need her. We don’t have much in the way of local family, and on-demand babysitters don’t exactly grow on trees. Miss C is one of very few people I trust implicitly to watch over and care for my children in my absence. She is the other reason why I am able to do as much as I do, and I am thankful to count her as my friend.  

So, there you have it. My family and my intentions.  

Happy Monday to you!