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50 shades of BLUE

IMG_0210World Autism Awareness Day (WAAD), celebrated each year on April 2, was adopted by the United Nations in 2007 to shine a bright light on autism as a growing global health crisis.

On World Autism Awareness Day, Autism Speaks celebrates its international Light It Up Blue Campaign. Thousands of iconic landmarks, communities, businesses and homes across the globe unite by shining bright blue lights in honor of the millions of individuals and families around the world affected by autism.

We’re talking the Eiffel Tower in France. The leaning tower of Pisa in Italy. The Sydney Opera House. The Empire State Building in New York. On April 2nd every year, they are all very specially adorned with a fantastic display of blue lights shining up and down gloriously to bring Autism awareness.

So, what can you do? Pick a lamp, or – even better – a porch light, and put in a blue bulb (you can get ‘em for about $1.29 at a local store). How does putting a blue light on your doorstep increase autism awareness?  I’m so glad you asked that question ;).

Just by putting a blue light bulb into the lamp on your porch, you are affecting someone, somewhere. Why? Because someone is going to be out there asking themselves “Why is that porch light blue?”  Or maybe it’s more like “What are those weirdos doing in March with the funky Halloween lighting?”  Either way, someone is asking a question.

One person asks a question; they are seeking an answer. Once an answer is given, the information gets passed on so others can reap the fruit of such knowledge (or, you know, because we like to gossip).  Because doesn’t everyone need to know that Bob and Sue’s porch light is blue for a great cause?

Let’s look at the numbers…Simply put, if all 50 states decided to “Light it Up Blue” for a night, and if only *ONE* person asked that ONE question in every ONE state, we’d have 50 people who are more aware of Autism. Can you imagine the possibilities? How many people drive by your home in a week?

Let’s do ONE better…let’s see if WE can get 50 people to “Light it up BLUE” this year on April 2 just from reading this post. Ready? GO!

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5 steps to changing the world

Today, my heart hurts.

Special needs families – special needs Moms – do a lot of hurting, sure. There’s a lot to face, a lot to overcome, and a lot to mourn. But as time progresses, it becomes very clear that there is also a lot to celebrate. For instance, that first time your child calls you “mommy” and means it…well, there’s no greater joy in that moment, and you tend to *live* for the chance to hear your maternal “name” being called out again by your little sweetheart. It is especially sweet in a case like mine; my son didn’t call me “Mommy” until he was probably 4 years old. (Ah, a story for another day…)

My point today is that my heart hurts like it hasn’t in a really long time. People who have been in this “boat” for a long time often remind you to pace yourself when it comes to rejoicing the good in progress. It always seemed so skeptical to me, so presumptuous when some other Autism Mom would give me the proverbial “Don’t count your chickens before they hatch” comment. It felt rude, even a little unfeeling at the time. I never understood why they felt the need to burst anyone’s bubble about overcoming triumphs!

But I understand now that their intention was not to “burst my bubble,” or rob me of my joy in a moment when my son was achieving a long-desired goal.  Their desire, their drive, came from a place in their own guarded hearts, which had been broken again and again by achievements and milestones first gained by their own children and then, sadly, lost again for a time. It took me a long time to realize that these women were not trying to be bitter or jealous of me; they were simply trying to prepare me to guard my heart against the dreaded “2 steps forward, 3 steps back” moniker that is pretty much guaranteed to occur regularly in the lifelong journey of an autistic child.

Essentially, their purpose was the exact opposite of what I had thought…these other, wiser, Moms were trying to prepare me to withstand the depression that threatens to overwhelm a young, hopeful, optimistic heart.  And so, with my best interests in mind, these caring people did their best to bring me back down to earth, with the intention of sparing me the amount of pain that had saturated their own hearts when dreams and love did not “conquer all.”

I appreciate these Moms (and Dads!) because their guidance has been vital in learning important steps I needed to take to help my son. And they were right! I had hard lessons to be learned and so many tears to be cried because I thought one particular milestone had been “conquered”…but yeah, that’s not always the way it works.

Still, I am not one of these moms. These women (and men) are strong, wise, formidable and unmoving… but I am not one of these moms.  Now, I thank the Lord God on high for these types of ladies/men, because we NEED their perspective (especially early on)…I will just simply never quite be one of them.  Why, you ask? Because I still believe in miracles. I still believe in love, God, the goodness in the world, and the fact that, though my son is categorized as “different,” he is so much more than he appears.

I believe there is a reason my son is the way he is. I believe he was sent here to change my life. I believe he was sent here to change YOUR life, and so many of those around us. I believe that, together, we can change the world.

Am I, therefore, a wimp? A pushover? Do I sit back and just hope and pray that God will “cure” my boy? No way, man. I am firm, I am determined, and if I believe my son is being wronged or misunderstood,  you better back up off me at that point because my Mama Bear personality comes out… (No really, I get a little scary). I am fighter for my cause…but I am *not* pessimistic.

Confused? Let me give you the details of my crazy heart mixed with my crazy mind…

I believe in love. I believe that good will triumph over evil in every end. I believe that “different” is NOT a bad word, but a NEW way to look at the world. I believe that our nice, comfortable, tunnel-vision belief systems need to be shaken up a bit. I think people need to know *why* they believe in something, and that the reason in which that belief system is rooted should *never* be based on simply accepting what a parent or other authority figure told you to do.

I believe in the good in people. I believe that, no matter what someone does to me, I have the capacity to forgive, because *I* have been GRACIOUSLY forgiven.

I believe that 1 person can change the world, just by *being* in it.

And I believe that 2 + 3 = 5. Sometimes the first 2 steps to making the world a better place may result in 3 steps backward. You want to know why?  Forward or backward, it’s still 5 steps toward changing the world.

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My son’s school Burned down…

To the Ground.

I’m not kidding. It’s not a metaphor—It’s real. It’s surreal.

Have you ever seen a playground on fire?  I still can’t get it out of my head.

Let me back up a bit: Alex, my autistic son, started 1st grade this year in a K-5 ALC Classroom. Kindergarten had brought so many trials, heartache and hard work – I was afraid of what was to come. But my worries were over quickly; this year he was matched up with the most wonderful folks I could ask for… I don’t even like to refer to them as “teachers,” because the word seems somehow inappropriate.

(I think maybe God personally addressed His angels in heaven and said “Look, y’all, Alex’s family has been THROUGH IT. They need some good folks to lead their boy through his first grade year…Volunteers?”…And 4 or 5 angels floated down to Earth to nurture one of their own.) I finally had peace when my son climbed onto his school bus each morning.

But then, on a Sunday morning in February, Alex’s school was in flames. Have you ever had to say those words out loud? It’s not easy. In an attempt to respond to many concerned loved ones, I posted this to Facebook…Take this journey with me; you may find the strength I never knew I had:

“My son’s school burned down to the ground today. An elementary school is just a building, yes. But the news that my son’s school had burnt down was incredibly painful. My son has special needs and will not understand. ALL 500 kids have to be moved, spread out to other schools in the area. I have been so afraid of what will happen to Alex’s classroom, his amazing teachers, his little friends, everything familiar to him. I have no words. 

Even as I wrote this, Alex’s teacher was calling.

We cried together. I had not considered how hard this would be on all those angels God sent down to that class…

STILL, there was beautiful news: That solid, brick, school building burnt down to the ground – yes – but Alex’s portable classroom, made out of plywood and all things flammable was, and remains to this day, untouched by the fire. The sprinkler system caused water damage, but the simple structure, which stood just a few feet from the destruction, remains untainted on the outside, a symbol of the strength and purity these kids reflect in Heaven’s eyes.

That little building may be waterlogged and ruined inside, but it didn’t matter to us. No, not everything will be salvageable, yet even one or two familiar items can help special needs kids feel more at home, more safe in their new environment. And so I rejoiced because that portable classroom still stands in defiance of the flames that took a school away from 500 children.

With tears of sadness mixed with newfound joy, his teacher then assured me that, whichever school hosted them, the district promised to keep the whole class together. ALL OF THEM.

Teachers, students, and Alex’s 1-to-1, they were all allowed to stay TOGETHER. You have no idea how much this means to me. These Special needs kids – MY special needs kid – have been given 2 miraculous gifts from God. I am so thankful. I cannot describe the lengths to which this reaches into my heart and reminds me that God is watching over *not* just their safety, but their WELL-BEING. It is as if He is reminding me that He understands their lifelong needs, even when I feel like the world doesn’t. God will make a way, even when there seems to be no way.”

 

Today, I am here to tell you that it has not been easy, and that, though the kids are handling everything like little champions (maybe better than the adults), they still do not understand…Alex remains thankfully, blissfully ignorant. Still, he misses his old school.

 

An Elementary School is in ashes. But Mrs. Hamilton still stands. Ms. Carolyn still stands. Alex and his little friends still stand. Love, laughter, friends, community…they all still stand. OUR. KIDS. STILL. STAND. They’ll never be able to fully replace that building. Thank God an Elementary school is not just a building.

Alex on his new swings

 Instead of posting a picture of the fire, I have chosen to post a happy picture of Alex on his new playground =)

( If you’d like to read more about the fire, you can go to this site: http://www.oregonlive.com/clark-county/index.ssf/2013/02/crestline_middle_school_destro.html )

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My name is “Mommy”

Mother’s Day weekend is always special to me. You see, May is my birth-month, and my birthday is always a couple of days away from Mother’s day. This used to be hard for me in the past…I mean, it is, in some small way, *kind* of like having a birthday a few days before Christmas. Everyone just sort of lumps birthday + holiday into one, because it is in our multitasking, time-saving nature to “kill two birds with one stone.”  I mean, who wants to throw two celebrations for someone else in the same weekend?  Who wants to buy two sets of presents or cards, or flowers, or whatever? Doesn’t one expression of amazement to a person in a weekend suffice?  Do they really need that again? 

As a hard-working, Disney-princess-singing, world-changing, fundraising, trailblazing mother of an autistic son, stepmother to a teenage girl, and wife of an equally hard working husband, I am here to tell you that YEAH. Yeah, I really do need that again.

All that being said, I should that my birthday this year was absolutely amazing…not only did my family completely knock it out of the park with their special treatment of me – and some precious moments that made me cry, made me laugh, and made me feel *so* loved – but I felt like God just kept raining down new blessings on me with every passing hour.

Short, selfish version: My son spoke his first real spontaneous sentence to me (a HUGE step for us), which left me feeling amazed and hopeful. Then, *I* was left speechless and teary-eyed by a loving card written by my teen stepdaughter in her OWN handwriting. And, of course, I giggled and beamed when my husband took me to dinner and then shopping for a few ridiculously frivolous gifts just so he could see me smile in that special way again. My whole family helped me feel loved beyond my imagination. What a rush! What an outpouring of love and adoration! Best. Birthday. Ever.

With my family’s promise that the weekend would essentially be “mine” to do as I pleased, I was excited for Mother’s day. Could it get any better?  Well, I started off that very special Mother’s Day clinging to the promise that I would be celebrated, and that maybe I would get a day off!

To be brief, Ummmmm, yeah, NO. It didn’t happen, and I was hurt. My regular duties weighed heavily on my shoulders, just like always. And I attended to them, because that’s what moms do. Dangit, I knew the whole thing was too good to be true!

But that afternoon, while I was feeling forgotten and sorry for myself, I looked outside and saw my son – alone – trying to swing on his play set. He wasn’t getting far, but he was still smiling to himself. I was drawn to him; I walked out and played with him on the swings. On Mother’s Day, with big fat grins on our faces, I told Alex, my awesome autistic son – that I loved him…and he repeated it back.

I may not have been treated like royalty this Mother’s Day, but I got something better. I was given the blessing of meeting my special son exactly where he was. I was given the gift of hug as I un-wrapped his sweet smile, topped off by the big, beautiful “ribbon” of a giggle. There are very few greater gifts than these for the Mommy of an autistic (or ANY) child.

I was suddenly overwhelmed by the meaning of ‘motherhood.’  It is not just a title or a privilege that was meant to be celebrated on this day. It’s a state of being, or state of wanting to be. It’s a title that women would die for, and maybe that others are (jokingly) really tired of.

Here’s my history, for those who don’t know…My son, Alex did not truly refer to me as “Mommy” until he was around 4 and a half years old. That might not mean a whole lot to everyone out there. But I had been waiting for that word my whole life (yeah, ok, drama, leave me alone)! And then I was blessed with a beautiful son who finally called me “Mommy” – and meant it – about 2 years after a lot of those other little boys. Did it break my heart during the wait for that title 2 years longer than other mommies? Maybe a li’l bit. But it *rocked* my whole world to hear my little boy ask for ME, his Mommy, when he finally did.

I don’t have any truly profound words to describe it, except to say that my name is finally “Mommy.” ❤

So this year, on Mother’s Day, nobody treated me anymore special than my son, now 5.5 years old, who laughed, and smiled, and called me “Mommy.” In doing so, he taught me a thing or two about that special day.

Mother’s day is meant to honor mothers…and until very recently, I thought it meant another day to be honored..and it IS to some families. But in this family, it doesn’t quite work out. Still, in one simple moment, I was reminded by an adorable little boy that I am his “Mommy.” And that right there?  That’s what it’s all about.

Treat me like a queen? Awesome! Treat me like a mother? Unbearably, heart-wrenchingly, incredibly priceless.

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Angry Moms (like Angry birds, only way less fun)

Some days I don’t know what to type about. You know, I am aware that I have said that before in my blogs and that eventually I end up writing something  decent and in keeping with a certain subject. But the thing I’m struggling with today is that I have actually written a couple of pieces lately which start out well and good, with intention and drive…you know, stuff really from the heart. Except that I had to stop writing them, because they were being written out of pure anger.

Anger is not what “mommy4autism” is about. Frustration? Yes. Speaking out against injustices? Sure.  But pure, intentional anger which uses blame, harsh words and negativity to get its point across? No. That is not what this blog is for.

Unfortunately, lately it is how I am feeling. I am mad. I am mad at the world, I am mad at some particular individuals, and I am mad at the school system. And so I have some sort of anger “wall” up around me that seems to be prohibiting my ability to write in a more meaningful, well-rounded manner.

Now I’m not saying it’s a horrible thing to be angry. Anger is healthy, and there’s nothing wrong with feeling your emotions.  Trust me, suppressing them is much worse. But the key to any emotion is what you choose to *do* with it. Anger only becomes destructive when you act on it in a destructive way.

Well, you know those last couple of unpublished posts I mentioned? They were destructive. I “pointed fingers,” became very passive-aggressive with my feelings and then just kept on writing out of anger. The posts got to be really lengthy, and once I realized that, I made myself stop and look back at what I wrote (I try not to make my posts too terribly long, for the sake of my readers).  Do you know how I felt when I re-read those posts? I felt disheartened and angry all over again. And that is not what I want for you, my readers. I don’t want you to have to listen to me rant (well, at least not *that* much).

My blog is meant to display the ups and downs of having a child with autism, while sharing some secrets and special events along the way. It was also intended to help others like me to not feel so alone. Sure, when I write about the “downs,” there can be some sadness and anger displayed, but mostly as a part of a story that I am telling about the past. There is a big difference between writing *about* feeling angry and writing out of anger.

So those posts never made it to my blog…and that’s why I’ve been lagging on posting lately. I can’t seem to get rid of these emotions and get over myself. I’m just plain mad, and it is affecting my ability to write.

So what now? Well, to be honest, I’m not sure. I guess I need to get to the root of my anger and talk to someone about it (constructively). But that’s not easy to do. I’m a strong person; I could do it, sure, but there are a couple people who might not like to hear what I have to say. And there are institutions that may simply ignore me. And then what do I do about my life? And what do I do about me?

Yeah, I’m mad at me, I’ll admit it. What Mom doesn’t blame themselves for some of the bad things that are happening in life? And, more specifically, what mother of a special needs child does not, at some point, blame herself for her child’s regression, or their inappropriate behavior in social situations…or even worse, for maybe having been the cause of their child’s disability in the first place?

This is deep stuff. Well, I’m here to tell you that you’re not a bad mom. And I’m not a bad mom either. And you and I didn’t do anything to cause our child’s special needs. We love our kids, but we are neither specialists nor mind readers, and so we are going to get frustrated and blame ourselves.  But we need to practice the art of *not* placing blame. We deal with difficult situations almost every day. Today is no different.

And now I’m lost, once again. I don’t know where this is going. I’m trying to be uplifting, but I can’t even uplift myself. And when you don’t feel something strongly enough, you cannot teach others about it. I do feel like a bad mom. I do feel like a bad wife. And a part of me knows that isn’t true, but the dark side is looming.

Long story short? I’m human. Hi, this is me being human and struggling with anger due to injustice, not enough time in the day, the lack of communication I can achieve with my son…shoot, I’m even mad that this blog post is not turning out the way I want it to.

But maybe that’s the point this time. Maybe this time, the blog is supposed to be about showing you just how human and helpless I feel, too. I’m working on getting past the anger. But it is equally important to embrace the fact that I am feeling anger and to seek the support of other people in the same “boat.”

You are not alone, angry mom. I, too, am an angry mom from time to time. It’s ok to be mad at the world, and kick and scream at some unknown foe to make ourselves feel better. So take that time, and then have a little cry (or, in my case, a BIG one), take a deep breath and move forward.  There will be other times like this, to be sure. It comes with the territory. But for now, right this second, let’s feel our feelings deeply, express them and then let them go. Easier said than done, right?

It’s going to be okay, I’ll be right here with you. I promise.

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Great Pumpkin Party Oct 29!

There’s a Great Pumpkin Party specifically for Portland/Vancouver Metro area Special Needs Kids and their families coming up on Oct 29! We went last year and Alex had a blast…games, huge inflatables, crafts, and NO overwhelming quantity of kids …highly recommended!!

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