Today is World Autism Awareness Day. It is a day where landmarks and houses around the world Light It Up Blue to help spread awareness. From the Americas to Europe, Asia to Africa you can find pictures of some of the greatest landmarks and government buildings being lit blue.
How can you contribute to this day?
By changing one solitary lightbulb in your house, apartment or even at your place of employment (ask the boss first) to a blue lightbulb. They are easy to find – Autism Speaks has teamed up with Home Depot, who is selling inexpensive blue light bulbs.
You may wonder what changing one light bulb can do?
It could change the world.
Yeah, that’s right. One light bulb could start one conversation which in turn could cause a ripple effect. Autism Awareness is about breaking down the preconceived notions that people have about autism, and…
***
I started to write this post early this morning. Inevitably, as is the case on a school day, I ran out of time – kids needed showers and breakfasts; lunches needed to be made; backpacks needed to be packed and the kids needed to be shuttled off to school.
Once at school, I realized that I had forgotten it was Literacy Morning – a short, 30 minute session in the classrooms where the kids show parents what and how they are learning about literacy. I was going to have to split my time between Brooke’s and Katie’s classes, so I figured that I would hit Brooke’s class first while she was still focused.
Not all the kids had parents who were able to come, so Brooke was paired up with one of her good friends along with her (Brooke’s) one-to-one. They were working off of a worksheet that would help them document different parts of a book or magazine – Title page, Table of Contents, Pictures, etc – and then allow them to answer some questions about those sections.
I sat down with them with anticipation…
***
From the …
When I…
Starting with the first question…
***
It’s been almost six years since the word “Autism” entered our home. It’s been a long time since I sat at the edge of our bed at 3AM, silently crying, overwhelmed by Autism. It’s been a long time since Autism has weighed heavily on my shoulders. It is always there, but I have learned to deal with it. Brooke still uses her scripts, still has many difficulties, but we have watched her grow and utilize her tools as her tool box has grown.
It’s been a long time since Autism has slapped me in the face.
This morning Autism cold-cocked me in the teeth with a pair of brass knuckles.
From the start, Brooke couldn’t look at the worksheet. Her eyes were everywhere EXCEPT the worksheet. She couldn’t answer any questions, responding to every inquiry with either nonsense or rapid-fire scripting. She hit me with one script and as soon as she realized that I wanted to her answer a question first, she’d hit me with another.
Bam. BAM! BAM!!!
I kept using the language I knew she understood – expected vs unexpected; full body listening; keeping the brain focused; engine running high.
There was nothing behind her eyes, almost no recognition of what I was saying.
I wanted to cry.
After 15 minutes, I had to go to Katie’s class. She was waiting for me.
***
On the way down the hall, another parent who was splitting time like I was asked how it went. I couldn’t answer. I could only shake my head.
Upon arriving at Katie’s class, I found her patiently waiting to get started. She very efficiently ran me through a 30 minutes project in just over 15 minutes. It was a study in contrast. I was so impressed with the way she compressed the time, but it was a stark reminder of where I had been.
Again, I wanted to cry.
***
As I got into the car, Jess called to see how my morning went. I tried to keep it together, but the floodgates finally opened. I told her that today, on Autism Awareness Day I was coldly, brutally reminded that my baby has Autism and the tears…just…flowed. Maybe there is poetry in that.
I thought about this unfinished post – how I had wanted to “rah! rah!” you into going down to your local Home Depot to buy some blue light bulbs – to convince you that you could make a difference by simply changing the color of you porch light.
I told my wife through tears that I felt like a fraud.
How were light bulbs going to keep Brooke focused when the pressure of school or work mounted?
I thought of the homeless lady in front of the church that Jess wrote about a few weeks ago. I can guarantee you that to someone who didn’t know Brooke, some of the things that were coming out of her mouth today would have made that person think that maybe this little girl is beyond help. I looked into the future and wondered how Brooke would ever be able to hold a job or even finish high school, much less college, if this is where she lands when the pressure builds.
Brooke didn’t present as angry or agitated this morning. Everything was an overly silly, nonsensical response. She was perfectly pleasant, but she wasn’t present.
What happens to her when she’s twenty or thirty or forty when there isn’t a one-to-one aide to help facilitate or explain?
What happens when she is fifty or sixty or seventy when I may be gone? You want to know why I’m so obsessed with running and health? Because I can’t die for a very, very long time. I need to live to make sure Brooke doesn’t get lost in the shuffle. Ignorant people will do ignorant things.
So what the Hell could one light bulb do???
***
Deep Breath…
What could one light bulb do?
I plan on being around for a long time. I run, in part, because I plan on growing very old and being there for my kids. The sad truth is though, that any number of things can happen to an individual – the best laid plans of mice and men and all…
I could be hit by a car tomorrow, or, according to quantum physics, simply dematerialize one day and disappear – the point is that you never know what the future holds.
What I do know is that if you put a blue light bulb in your porch light (or go nutty like us and put blue votive LED candles in every window), maybe someone will ask you why. And if they ask you why, hopefully you will tell them what you know about autism and how it affects families and individuals. Maybe that person will decide to put a blue light in their porch light and will continue the chain.
I would love to see a whole city-block – scratch that, I’d love to see a whole city lit up blue because someone told someone who told someone…
The truth is though, awareness is simply not enough. If for whatever reason something were to happen to Jess and me, there is very little in place to prevent Brooke from becoming that homeless lady outside the church, babbling incoherently, generally ignored by the passing public.
That’s what I saw this morning, albeit briefly, during Literacy Morning.
I need – no, Brooke needs porches lit blue and awareness to be spread…but then she also needs services put in place. As a society we need to understand that these kids and adults with autism, wherever they may be on the spectrum, are a part of our society, a part of our community.
Those supports should not be provided solely by a religious organization or a private institution, but rather by society itself, because in the end, we are one.
That is why I ask you to please just change one prominent light bulb in your house to blue for the month of April.
Just one.
Run Luau Run 
This part? “I need…Brooke needs porches lit blue and awareness to be spread…but then she also needs services put in place. As a society we need to understand that these kids and adults with autism, wherever they may be on the spectrum, can be a part of our society, and part of our community.
Those supports should not be provided solely by a religious organization or a private institution, but rather by society itself, because in the end, we are one…”
I was holding it together until this part. We are one. We have to be in this together. From awareness to acceptance to action.
I’m sorry today was so hard.
I know just how you feel……sometimes the ABILITY part of this disability shine through and nourish our hope for our kids. The days that the DIS-ability “cold cocks you in the teeth with a pair of brass knuckles” showing you – “hey – I’m here and making things hard for your kid!” hurt beyond belief. I’m sorry you got punched today but you did a wonderful job of putting into words what today needs to represent for our kids – awareness, acceptance to action.
I’m reposting you and your wife on my FB page today. Thanks for all you do for our community.
It’s amazing that the world comes together each April to raise awarness for children and adults on the spectrum. The ripple effect is important to this cause…autism needs to be a national priority. Last week I blogged about how the Bicentennial Tower in Erie, PA will be lit up blue for the month of April. Feel free to visit my blog at allaboutautismbni.com.
Volunteering at school is probably the surest way to make me cry. You do so many great things for your girl and for all of our kids. You’re a huge link in the chain. Hang in there.
I’ve been thinking lately that parents of children with autism are too familiar with the stages of grief. We are shocked and we eventually get back to hope, and we are shocked again and we work our way back to hope, until we get shocked again…. We see progress, and then we don’t, and we work through that and those feelings… until the next time.
We trip; we fall; we get up; we keep running. What choice do we have? It’s grueling and painful and painfully unfair.
I’ve fallen while running, picked gravel out of my knee, taken a few breaths, kept running. It’s left me shaken. It’s still with me. I remember it. But I keep running. Because how else will I get home? You keep going so that these kids will come home to a community of acceptance.
I just came across this post through a diary of a mom, but I had to comment on this comment. Your explanation of grief is Right On. It is exactly like that. To quote a description of the writer Flannery O’Connor, “She was deeply aware of reality…and was at the same time a prisoner of hope, grasped by the optimism of grace.”
I know how hard this was to write. And I know how much harder it was to live. I’ve been there – spinning on the sidewalk lost in an impotent rage.
But you are so damned strong for us – for all of us – that I forget. I forget that no matter how broad your shoulders may be, they eventually buckle under the weight you silently carry. I forget that you cry at 3 am. I forget that you feel every bit of this too.
I love you, babe. And I’m proud of you. For being strong and even more for knowing that you don’t always have to be.
We’ll get thru this. And so will our girl. One step, one conversation, one damn blue bulb at a time.
Going into the school often leaves me breathless. Thank you for being so open and honest. We must keep telling our stories so that awareness leads to change.
(I was teary reading through this, and then full on tears reading Jess’s comment above.)
You both are wonderful parents and advocates for your girl.
I hate those moments when it all hits you right between the eyes. They feel so all-encompassing. But they’re moments. They pass. They fade. They get replaced by much better moments.
But in the moment? They suck.
Riding this moment with you. Eyes on the prize. We’ll all get there together.
I know this so well. And I’m going to admit to you right here, right now…I was skeptical on the whole blue light thing.
You’ve convinced me otherwise.
Hang in there, friend. xo
Oh Luau…I know that slap in the face…that punch in the gut, so well. Knocks the air right out of you, and brings you to your knees. In a way…there is something quite profound about it happening to you on World Autism Day. It’s ok to let the grief knock you over once in a while. Thanks for getting back up today…and for turning your pain into this beautiful post.
Oh, man, a kick in the gut today. I’m sorry. You know that so many of us know that painful sucker punch. It’s why we all do what we can to create real and lasting change…it’s not abstract, these are our babies. It takes a powerfully strong man to share his pain and vulnerability, Luau. You inspire many with your determination to make a difference. Not just for your little one, but for ours, too. Sending you love. xoxo
p.s. We always have our front light blue. Always. 🙂
Your girl (all three of your girls) are so lucky to have you. Your love and spirit and fight are inspirational. I’m sorry today was a hard one. There is no doubt sharing this story reached so many today – One bulb at a time.
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I love that you wrote this. I love the husband and father you are.
Love you,
Mom
Autism cold-cocked me at school today too! I even had the thought “Wow! How crazy this is happening on World Autism Day in particular!” Thanks for sharing your heart & your fears because it is my heart & my fears as well. So thankful for both you & Jess!
I hate those moments. I’m very much a keep-it-together-we-have-shit-to-do type of person. I’m not one to let myself wallow. I know my son backward and forward. His language (cameronease) is my language. And I find so many good things in what others refer to as a disorder. I find it adorable that “three times to skip a day” means ‘every other day’. But that freaking moment always sneaks in all ninja-like and catches me off guard. The last time it was when I was tucking him in. Same number of quilts, same stacking order, all at perfect right angles to the bed, same tone in his voice implying he has no idea how exhausting these rituals are for me, his inability to compromise or change…his inability to compromise or change. how the hell does an adult male function without the ability to compromise or change. what is going to happen to him?
Thank you for sharing this. A reminder that while a light bulb is not going to have an immediate effect on my boy or our autism, it will have an effect eventually and the effect on tomorrow is just as important as the effect on today.
Thank you for writing this and for reminding me to hug the man that holds me and our family together.
Today 453 students, staff and parents walked for World Autism Awareness day. It was a sea of blue. And a sign. The tide is turning. Education, respect and awareness brings support and understanding. For my son, for your daughter. For families everywhere world-wide.
We are all connected!
“Brooke didn’t present as angry or agitated this morning. Everything was an overly silly, nonsensical response. She was perfectly pleasant, but she wasn’t present.”
This is mostly Lily. . .
Good to see the “other” side of the Brooke/Katie Chronicles. . .
Thank You.
[…] reading this blog post from Luau, I was bellyaching about the rough day I was having. My car this… my class […]
Right there with you Luau, the nonsencical answers, not being present, the sibling differences. It is a very different experience for me to walk into his classroom and be part of his day than it is for the other parents. I can only hanlde it few and far times inbetween. Running and fitness (I just started P90X) are a huge coping mechanism. Strengthening all parts of me and freeing myself for a little while as I run outside, though always reminded that the only time I can manage this time is while he is at OT. We lit it up blue for the first time this year. Thank you for your honesty and courage to write.
Yes, we are all one, all together in raising our kids. Like you, every time I advocate for my son, I am always aware that what I am doing impacts more than simply his world, but our whole autism community. He’s come from a little guy who could not advocate for himself to a Big Lanky Teenage Guy who can advocate for himself in many situations.
Our kids are always growing and learning. Even when there are periods of regression & rage, he keeps moving forward at his pace, in God’s time, not in my time.
Thank you for your honesty in this post. ❤
Like many, I know exactly how you feel. Those publishing parties and literacy mornings and gym peeks are great for parents of typical kids, but for the rest of us…
I only wish the blue lights, resources and activism that surround children with autism diagnoses extended to all children with developmental disabilities. B/c those kids are just as left behind in our society and face the same challenges and uncertain futures.
There is nothing I can say except we love you, your family is our family. We hurt when you hurt. So sorry that you had such pain revisit.
We love you.
Thank you for your words and sharing the struggles you face. My nephew is Autistic and my sister also has a blog. http://Www.lifewithgreyson.blogspot.com Thank you for sharing your story. Let’s paint this town blue with awareness!
This is absolutely eye-opening…. I have goose bumps. The love you have for your daughter takes my breath away. Though I don’t have any experience with autism, your post has inspired me deeply. Thank you for being such a conscious and loving parent.
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