You are the person who gets to decide how you live your life.

No one else.

If something isn’t working—change it.

Give yourself the time and space to dream.

Quiet the noise of the voices around you.

When everyone else’s voice falls away, what do you hear?

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Why I Won’t Light It Up Blue

On this day when everyone lights it up blue and has autism on their mind, I would just like to say that as a parent of a child with autism, all I want in this world is to understand my son and for others to try to as well.

Only a few short weeks ago, I could not say the word autism without a lump growing in my throat and my eyes welling with tears. In the early days after diagnosis, I couldn’t even so much as utter “Hi, my name is Laurel and I am calling regarding services for my son who was diagnosed with autism,” without totally breaking down while calling providers. Sometimes I couldn’t even make it past my own name and at times, had to hang up and call back later, only to cry again.

While I already knew for many months with everything that was in me, there was nothing that could ever truly prepare me to hear the words falling from the doctor’s lips. And fall they did…those words hitting the walls of my heart like concrete blocks, leaving jagged chunks of what I thought would be, could be, scattered along a path I had laid for my family. For my son.

Since that day, I’ve cried just about every day. Sometimes from sadness, sometimes anger, a lot of frustration, and most often, because of love. You see, amidst the fallen pieces – big dreams, hopes, the vivid picture I could not only see, but feel, like the strokes left behind from the artist’s brush, the texture was smooth in some places and rougher in others. Like the tiny particles remaining from that concrete rock that collided with my version of reality, they were now imbedded in the colors of my painting. As I traced the dream with my fingers I could feel smooth, then bumpy, rough…and I knew this would be forever.

This authentic and lucid dream I had was once again, not mine. It had never been mine to paint – the canvas was surely mine, but the colors and texture were not up to me to choose. I couldn’t ever have imagined the kaleidoscope that would follow…

I’d hoped for once, my maternal instinct had failed me. That the doctor would tell me I was over reacting, that every 3 year old spends incessant amounts of time organizing and perfecting, lining up trains, cars, magnets on a refrigerator. That leaving the house or transitioning activities is a challenge for any toddler. But she didn’t…

After a 3 hour observation and evaluation and an encyclopedias worth of paperwork, our entire lives, our complete history on display, I saw it in her eyes. I knew what she was about to deliver. She did it in the kindest and gentlest way, and I will forever be grateful for her compassion and empathy.

She provided us with some papers, said we were doing all the right things already, told us we could contact her at any time for any thing, gave me the warmest hug, and sent us on our way. We decided to keep it to ourselves for a while longer; we just weren’t ready to tell others.

I think some of that was fear talking. He is still little and maybe with enough therapy we could help him be as neurotypical as possible. “Neurotypical” is the politically correct word for “normal.” I just could not get past the “autism” word. I was stuck and scared.

My brain understood, but my heart hadn’t yet caught up. Even over a years worth of mother’s intuition did not prepare me. Why was this at once, so hard and yet so easy. There was overwhelming relief because – finally! Finally, we were not living this alone; it wasn’t manifested in some version of our own reality. It was real.

It’s been very real.

I’ve gotten him all the help I can find. Speech therapy, more occupational therapy, ABA therapy. I read and read and read, learning everything I possibly can about autism and sensory processing disorder. I joined online support groups where I’ve met some amazing mothers and no longer feel so alone and lost. There are friends old and new who became my angels, and they know who they are – without them, I would have crumbled. I don’t believe most people have even the slightest inkling what autism families go through – I didn’t. Add in additional diagnoses and medical challenges, and it is literally all-consuming in every sense. All day. Every day.

Initially, we were afraid to tell family and friends because we just didn’t want our little boy treated differently or analyzed. This was fear talking and I know now that those fears would have never happened. So we relied on each other for support, but as a scared mom I needed so much more, and found it in my online autism community and among amazing medical professionals I now so thankfully and lovingly call, friends.

You see, when you have a child with autism your biggest fear is the future. Not so much the near future but the distant future. Will he go to college or will he need to be cared for at home. Will he speak or will he be nonverbal forever. Will he ever have a real friend. Please Lord, will he ever call me “mom” or say “I love you” and on his own. Will he learn to point. Will he be potty trained. There’s so much more…

Just because a child does not speak, doesn’t mean they can’t communicate. Just because they don’t make eye contact, doesn’t mean they aren’t listening. If they don’t want to be touched, it doesn’t mean they are incapable of love. If they need to spin, yell, hum – it’s because it feels good, it serves a need – and it’s okay.

Autism is a spectrum disorder. A person with autism can be low on the spectrum (high functioning) meaning they can communicate and have some challenges but with time can usually manage them and live a normal life. Being high on the spectrum (low functioning) is well, the opposite usually. They are usually nonverbal individuals who could possibly need care for the rest of their lives.

It’s hard to define the autism spectrum. As the saying goes, when you meet one person with autism you meet ONE person with autism. They are all different and all extraordinary – ALL of them. They all have different challenges and strengths. Not one person with autism is the same. Please remember that. Everyone – typical or not – is their own unique masterpiece, crafted by His hand.

If I could put Luke on a pedestal, I would. He brings joy to every person he touches. He is just the most beautiful gift God has ever given me and I am so proud to be his mother. I shed many, many tears of joy because of him. My life is richer, relationships more transparent. As if all we had already been through didn’t cause me to recognize life’s value, any remaining scales have fallen from my eyes.

My canvas I thought, was already perfect. What I didn’t see was the full spectrum of colors and how the mixing, the texture, the unevenness, would be the very beauty defining our lives together. Paint poured out like tears flowing, the canvas takes new life.

The white light of soul, prism refracts. A spectrum – a beautiful kaleidoscope of vibrant color – is born. To me, Luke, and every person with autism or a “disability”, is the essence of purest white light refracted. Where life is not distorted, but clarified and transformed. It is innocence and purity, intrinsic honesty and beauty. But to see it, you must surrender your canvas to the Artist’s brush. You must trust. You must have faith.

April is Autism awareness month but for our family, it’s every day. Every day is a chance to educate others because we live in a time where it is estimated that 1 out of 68 children in this country are diagnosed with Autism and the numbers are as high as 1 in 34 in some parts of the country. I think most people know a child or person with autism. If you don’t, the day you do, smile and feel blessed, because you have met the very essence of spirit walking this earth.

I will not light it up blue because to me, autism is a beautiful kaleidoscope of constantly changing and overlapping colors.

Learn what autism really is and how you can involve children and adults with autism in your every day lives. Teach your children about autism. They will be encountering many peers on the spectrum, all different, but all extraordinary. Teach them all this, so they can become adults that will be tolerant of the changing world around them.

Diagnosis Doesn’t Define Love

Here’s the thing – and it’s a big thing when the doctor says those words. When the details play over and over – and over again – in your mind for hours at time, days, weeks, years to come. Here is what I want you to know and believe with all of your heart. To lift yourself from the muddled depths of grief, sorrow, guilt and anger, you must first make room, and sit with it. Allow the tangled waves of despair to wash over you, in all of its rawness, embrace it.

And then, you stand.

A diagnosis explains and defines a lot of things, but never does it define love.

So love until you’re running dry, until your heart bursts. Love fully for every day with which you’ve been graced. Stand tall and rise with burning love ❤️

Cherish the Valleys

Sometimes we can spend our entire lives waiting. And when we get there, our eyes are still set on the horizon rather than the ground beneath our feet. Sometimes we spend years climbing one mountain, we forget to live in the valleys between.
But what if the valleys are where memories are made? What if the valleys are where life is lived? What if this is the only time you have been given? Can you say you are using it wisely?

Time has a way of creeping up on you. I lived my life waiting for the “next” until experiencing life’s fragility taught me differently. It taught me to hold tightly to the moments. It taught me to live fully without holding back, embrace the mess of life and embrace the beauty. It taught me to cherish the valleys.
What if we spent our every moment looking ahead that we missed the very earth beneath our feet? What if we lived our whole lives hating the discomfort, hating the discontentment, when really, those things are what this life is made of and where the real growth happens.
Forge more life into each of your days! Cherish the valleys, the soil beneath your feet. Like the mighty oak, anchor your taproots firmly, then spring up and branch out; reach and stretch and allow yourself to be pulled toward the sun. When the winds of adversity blow, bend – but don’t break – and absorb all that this life has to offer.

Motherhood – Part 2

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This piece first appeared on the St. Christopher’s Hospital for Children website as a 3-part blog series.

http://stchrishospital.blogspot.com/2015/05/guest-blogger-laurel-youse-mother-of.html

GUEST BLOGGER: Laurel Youse

Monday, May 11, 2015 – Part 2: Motherhood

Mothers dig deep. We open ourselves to love in spite of the cost, in spite of the unknown. We harbor great burdens, hide sorrows only our hearts can know, and we relish in great victories and amazing joys. We cling to hope that is steadfast and sturdy and cherish the moments when a tiny, smiling face, an intentional and knowing glance, the tight squeeze from a fragile hand, can cast all doubt away. We find strength often times not of this world. We find the power to love unconditionally and without reserve. We find faith. Or maybe it finds us.

In the months and year that would follow, our little growing family would find itself faced with multiple challenges – a diagnosis of HELLP Syndrome for me, requiring early and immediate delivery of our Luke, heart surgery at St. Christopher’s Hospital for Children for Luke and the diagnosis of a kidney defect, ongoing physical and occupational therapies, and always more tests and procedures. And in the midst of all this – this path I certainly did not choose – I have found joy. Yes. Beautiful, bountiful joy.

While life can still be scary and uncertain, and although the original dreams I once had are gone, they have been replaced with better ones. Brighter ones.  More meaningful ones. The plans I made – expectations of the perfect birth, hearing his first cry, snuggling my newborn on my chest, nursing my son – those things still hurt a little. Some days, they hurt a lot. Maybe they always will. Developmental milestones – I will never take for granted a spoken word and no step will ever be considered ordinary. Yet, I’ve had great privilege – the honor – to know my child more intimately than most. I’ve sat at his isolette for hours, memorizing every feature, every crease and line. I’ve fought for him, prayed for him, whispered into his ear how loved he is, how his mommy is always there. I taught him how to drink from a bottle to rid him of that dang NG! I’ve shuffled bunches of machines and tubes and wires just to hold my baby only to have the pulse ox alarm with every slight movement. I have navigated my way through medical jargon and cared for my child in ways that are natural and ways that are very unnatural. I have learned him like the back of my hand. I have seen his heart from the inside. And his heart – his beautiful, perfect heart – was broken so that mine would one day heal.

This year – MOTHERHOOD – has taught me FAITH, JOY, PATIENCE, LOVE…and even more FAITH.

Luke’s heart taught me how to use my own: To be present in all the moments of life because tomorrow is never promised to any of us. So laugh. Cry. Give sloppy, wet kisses and squeezy hugs. Be positive – even when it’s hard and you think you can’t; dig deep. Give freely – your time and your love. Be not only a pillar, but an example of strength for your family. If you are reading this you have likely been touched by a child and although our journeys may be different, in many ways they are much the same. The story in your heart is the universal story of mothers. A mother’s heart always knows, always believes, and always whispers hope. Each one of our children has been born to us of perfect love and in that love we too, have been reborn as Mothers.

There is faith. There is joy. There is kindness. There is purpose in pain – we have to find it. And when we do, embrace it – as tightly and lovingly as a mother embraces her child. Nurture it and watch beautiful, bountiful life flourish. The gift, the blessing, of motherhood.

Yet.

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Seeing the glass half full has not always been intrinsic to my nature. Positivity is a trait I had to earn through years of dark struggle, therapy and self-reflection, combating demons – past and present. Until I saw absolutely no other way to be, it was as if a light was turned on…what was once a flicker, a glimmer in black night, turned golden, fiery, and burning bright.

We all have struggles. Life is rough. We learn what we are made of in times of uncertainty, discomfort and doubt. When all the odds are (seemingly) stacked against us, we have a choice. We. Have. A. Choice. Always. How many times have you taken the path of negativity? It’s so EASY, isn’t it? We wallow in self-pity, thinking of all the wrong and mess in our lives, we spiral down like a roller coaster, our stomach in our throat, knots of anger and perhaps even loathing and envy for what someone else’s life may seem to afford. It’s nasty – negativity. It breeds like a brown planthopper insect, carrying with it a virus and the ability to infect and devastate its host and the crops surrounding it. It can take out the best and strongest of us even in our finest season.

But…we can rise above it. We can find that flicker of light, however bright, and we can cultivate it. We can nurture positivity, we feed it into our lives by the thoughts we keep. The deep thoughts, the ones at the core of who we are, in our soul.

Here is my example.

Luke has been struggling with the use of his left hand, something I didn’t want to fully admit to, because of all the other medical and therapeutic appointments we keep on a weekly basis. Privately, I would work with him, always researching methods and creating games and activities to facilitate use of the hand he guards and keeps so tightly fisted. It has bothered me greatly, this lack of use, but not for the reasons you might think. Certainly I want him to have full function. I want him to be able to hold a cup, feed himself, pick up and throw a ball, pet his dogs with an open palm. To not be seen as different or weird or incapable. But he has been seen this way. A stranger felt the need to point out that he could not grasp the Cheerio he was trying so deliberately to pick up and “shouldn’t he be better at this at his age? What is wrong with him?” (I won’t delve into ignorance – that’s for another time.) His determination would not let him quit. He struggled and tried again, concentrating, fixating all his energy on that tiny “O”. It’s heartbreaking at times, to watch as he struggles, but I know one thing. One very important word – YET. Luke doesn’t have full use of his left hand – YET. That one little word changes everything. It changes the tone, the meaning, the attitude, the perception of ability. Before you could ride a bike, could you ride a bike? Of course not! You didn’t have the balance, the coordination – the confidence! Our thoughts become beliefs and our beliefs become words and those words we either whisper or scream profoundly, become actions and actions become the path we walk. We can choose what we tell ourselves, what we tell others. I know what I tell Luke, and what I will always tell my son who for now, never gives up. If ever the day arrives (I’m sure it will) when he is made to feel inadequate or cannot do “that thing” my response will be, “yet” – “You can’t do it, yet.”

We need to repeat positivity until it bleeds the blackness from our thoughts, from our words. Until it becomes the only way we know how to be. It’s hard, I will not lie. Some days are a real struggle. Recognize the struggle. Own it, replace it with full, shining, bright and pure light and move on. Move past the doubt you have in your heart. If you can’t do it today, in this very moment, let tomorrow be your chance at “yet”. I know you can do it.