Hope. Only four letters, certainly not a long word, but, a very big word.

Wiki defines hope as "an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one's life or the world at large." Like most of what she wrote, Emily Dickinson's definition of hope is much prettier. Miss Dickinson gives hope wings:

"Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all."

April is autism awareness month and there will be stories of hope and feathers everywhere you turn. From families of recently diagnosed children who are struggling to find the feathers in their souls to parents of adult children who found their feathers decades ago. Some days, as parents we experience more molting of our feathers than we like, which makes us feel exposed and vulnerable, but, in time the old feathers are replaced with new ones and our ability to hear the tune of our feathers returns. 
 
Since the first moment I knew it was autism, I felt the feathers perch in my soul. At first the feathers were small as I had to grieve and accept that what I once hoped for him may change. I had a hard time feeling the feathers back then. As time passed, the feathers grew and I clung to each and every feather that perched in my soul for without the feathers, the only alternative was falling and crashing as I let go of hope. As one milestones after another passed him by, at first I would crash, but, in time I felt the tickle of hope that one day perhaps, he would catch up. With every feather that fell away, a new one took it's place helping me to hear the tune again. 

When I would beg him to "look at me" I felt the feathers tickle my soul as I occasionally caught a glimpse of his eyes and saw his own hope reflecting back in my own. Ryan's feathers tickled his soul hoping that one day I would understand that he can see me and hear me even if he is not looking at me. Ryan clung to the hope that I would hear the unique and beautiful tune his soul was playing while drowning out the tune I always expected to hear. Some days I listened more than others.

In those early days, the feathers that perched in my soul were small, thus the tune they played was quiet. Over time though, the feathers grew and the tune got louder. I began to feel and hear hope more frequently. Hope was found in an unexpected hug, a beautifully written essay, a song being sung from the shower and communication through scripts that brought him joy. Yes, I swear I felt the feathers grow.

Hope is a powerful word and without it, Ryan would never be where he is today. It was hope that caused me to push, nag and prod him along. Not hoping for change, not hoping for him to be someone else, just hoping for him to be the best him he could be. And for me to accept that the best him, the perfect him, was better than the him I once imagined all those featherless years ago.

Decades ago, mothers were told there was no hope, not even the tiniest feather could be felt awakening their soul. They were told to institutionalize, give up, move on stripping them of their feathers and muting the tune their soul was so desperately trying to play. Without hope, there were no feathers, there was no tune, there was no "optimistic attitude of mind" there was just despair and hopelessness. My heart aches for the parents whose feathers were stripped away by those who thought hope was a waste of time. 

Now today, when I share stories of Ryan's progress, of how far he has come, I write stories of hope, I share the gift of feathers. People tell me, "Ryan gives me hope for my son/daughter". I love that, but, at the same time it concerns me. I worry I may give "false hope", false feathers, as each autistic individual is different, but, then I question is there such a thing as false hope? Who wants to live without hope? Without feathers perching in your soul and singing a tune? Sure the tune is different for my child than yours, but, we still need to find the feathers that enables us to hear the tune in the first place.

If I stop sharing my feathers than I am no better than the so called "experts" that stripped away the feathers of all those mothers years ago. So I will continue to share my feathers, my hope, my tune because just like birds cannot fly without feathers, dreams and hope cannot either. Although I am no Emily Dickinson and my words will not span into the next century, for parents loving a child with autism, I'd like to think that in this century, in this moment, I too, give hope wings. 

Hope is necessary. Hope is needed. Hope is real. Hold onto it. Feel the feathers inside you, inside him. They are there. Your child is trying so hard to fly and he wants you to fly with him and hear his beautiful tune even if the tune sounds different than anything you ever expected to hear. The tune is beautiful, and with or without the words, you can hear it, but, you have to listen, you have to hope so that the tune for both of you "never stops at all".

"After spending time with Ryan and according to the testing completed, I believe the best clinical diagnosis is Pervasive Developmental Disorder Not Otherwise Specified, or PDD-NOS, a form of autism."

Then, silence. Nothing.

The only noise was the sounds of birds chirping and cars driving by outside. Cars filled with people. People who did not have this 6 letter word beginning with A just come crashing into their life. I wanted to jump out the window and get in the car with those people. To drive away, far away, and pretend that the words uttered by this compassionate psychologist didn't just change the rotation of the world....his world...my world.

Unfortunately, in that moment I didn’t have the strength to stand, let alone try and force my way into a stranger's car. My knees were shaking and I had that awful weak feeling in my chest. The silence in the room felt deafening. The cars driving by on the street below were screaming and felt like mythological Sirens trying to lure me away to some place, any place, other than where I was sitting. Then, finally, the sounds of birds and cars were once again drowned out by the psychologist's kind, gentle voice wondering how we “felt” about the diagnosis.

I remembered “feeling” disappointed that the diagnosis wasn't Asperger's Syndrome because, after all, people think Bill Gates has Asperger's and he's a successful billionaire. I remember "feeling" sad, confused, angry, lost and alone. I remember crying...in the office...in the parking lot...in my family room...in my bedroom...in my husband's arms....in my best friend's arms...everywhere. It wasn’t until a few days after we first heard The A Word (which it became not so affectionately known as), the strongest “feeling” I had was the maternal and feral need to protect. My son needed me and no matter how much I wanted to escape this new reality, I wasn't going anywhere.

In the days that followed when I felt like I was drowning in a sea of tears, I never once doubted my love for my son, or worried how I would treat him, but, I did worry how others would treat him. I knew escaping in a stranger’s car wasn’t the answer. This was my son, his life, my life, our journey and I had to figure out how to get him where he needed to go and no way was I letting him go it alone. I just wasn't sure he far we had to go to get "there".
 
You know when you are driving and it feels like you will NEVER get where you are going? You distract yourself with snacks, coffee, music, whatever it takes to get you there. In fact, you become so distracted that you believe you must certainly be close, then you look at your freaking GPS and discover you still have a long way to go. In fact, you wonder if you will EVER get there.

There are moments on this autism journey where I believe I have come such a long way, then, I volunteer to chaperone a school field trip and I look up and realize I still have so much farther to go. Only, unlike my other road trips where I want to punch my GPS for reminding me I'm not even close, there is no anger, no road rage, just disappointment and surprise...in myself.

Ironically, it was a field trip last week that made me realize that no matter how far I have come, I still wasn't there yet. In fact, there was one moment that I wondered if I had even gotten into the car at all. Yeah, while I fulfilled my role as chaperone on that damn field trip I realized that I must not have even entered the destination into my internal GPS because in that moment I realized there are still times on this journey that I haven't even left the driveway.
 
I pride myself on raising awareness and acceptance of "different, not less", I preach it in my writing, in my training, in my life, yet as I watched my son trying to fit in with kids who weren't so different, I kind of hated "different" and shamefully longed for "same".

I always have field trip anxiety. I know that Ryan struggles to find where he fits, but, knowing it and seeing it first hand are two very different things. As all seven of the boys in my group walked into the auditorium to watch the play, Ryan scripted some Yoda cartoon character he has been watching on YouTube. Much to my surprise, one boy chuckled and scripted back. The others, however, looked at one another with unspoken words. The words didn't need to be spoken, they were written all over their smirks, expressions and sidelong glances.

The scripting went on a few more times and got louder each time and the unspoken words from his classmates got louder too. All of a sudden, I was back in the psychologist's office wanting to make a run for it. Watching this awkward exchange was painful and I wanted to run back to the school bus and escape just like I did all those years ago. Ryan seemed oblivious to the smirks and glances since one boy laughed...once. Even though I longed to run, the "feeling" to protect was much stronger. I smiled and asked Ryan what the script was from and told him how good he was at it, but, the way I nervously looked at the other boys looking at him, hoping for their approval of his scripting, made me feel like a fraud.

Wait, what was happening to me? This is not who I am. This is not what I advocate for, what I blog about or what I wear on my sleeves. But, in this instance I wasn't an autism advocate, an autism blogger, or even a mother of an autistic child, I was just a human, and sometimes as a human, I am vulnerable to forces outside my heart and my beliefs. And sometimes those forces kick me in the gut and slap me in the head. Just because I love, advocate and accept "different" doesn't mean that "same" never crosses my mind. 

As always, I should have taken my cue from Ryan. He was smiling, happy and unaware of the smirks and stares from the other boys. In fact, he was pleased that a few of them knew the YouTube video he was scripting and that one boy scripted back. In his mind, that made him "same", not "different" and I no longer felt the need to escape the situation, and in the end, I sat and smiled at how far he has come...even if I was still stuck in the driveway.

Just like that same little boy in the psychologist's waiting room all those years ago, I have always known to follow his lead. Ryan has always shown me where we need to go and doesn't concern himself with how far he has come, he just sits back and enjoys the ride. 

Regardless of how far I have come, what matters most to me is how far Ryan has come and how far he has gotten both of us on this journey. I am so glad I did not jump out that window and hitch a ride with a stranger all those years ago. Oh, what I would have missed.

​Yes, I admit I never set my GPS for this journey, but, even if I had, no device, no person, no "expert" could have told me which way to go. And yes, there are still moments that I can AWEnestly and shamefully admit that I long to go where everyone else is going. Most of the time though, I just wish that someone would give me exact directions and a detailed map to follow so I know where we will one day end up. What it comes down to for me is that in the end I have only one person whose lead I must follow. Ryan doesn't need a satellite or an "expert" to show him the way, he is finding his way on his own and in the process he continues to guide me, no matter how many times I wander off course and get lost.

While traversing this journey I have learned, that regardless of how far I have come, with Ryan by my side, I will always keep going until we are there.

I love Dr. Seuss! I mean, who doesn't? Who else, but, Dr. Seuss, gets kids to Read Across America for a day in March and gets kids to eat green eggs and ham? I can't get my kids to eat food that is suppose to be green like broccoli and lettuce, let alone food dyed green that looks like something pulled from the dark recesses of the refrigerator.

This guy wasn't a Dr., he was a wizard. Not only could Dr. Seuss rhyme better than Jay Z, he taught amazing life lessons to kids through funny, fabulous, memorable stories. No wonder he gets a National Read Across America Day for his birthday and Jay Z doesn't. Sorry, Jay Z, I'm sure you can cuddle up with your millions to make you feel better.

One of my favorite quotes from Dr. Suess was prominently displayed on our pediatrician's wall when the kids were little and I LOVED it! "Why fit in when you were born to stand out!". So true, right? Don't we all want to stand out? Be someone unique, original, different? No. Not if you are a middle school teen. The LAST thing you want is to "stand out". You want to blend in, be part of the crowd, look like all the other bewildered middle schoolers....until one day, you don't. 

Ryan just told me last week after a day of homework hell, that he doesn't like to ask for help because he feels like "everyone is looking at me because I am different". It broke my heart. We talked about how being different is cool. We talked about how everyone is different, autism or no autism, and how boring the world would be if everyone were the same, but, I knew it was falling on deaf ears. Deaf, middle school ears. 

So, as amazing as Dr. Seuss was, as amazing as his rhyming like rap still is, and as much as I still love this quote, it is not so true for the early teen years, especially if being "born to stand out" comes as a result of an autism diagnosis. So, if Dr. Seuss were still alive today, I would either text, tweet or IM him my rhyme for middle school aged kids with autism, and maybe we could sit down and enjoy some green eggs and ham while we discussed it (yeah, not a chance, not even for a signed first edition of The Cat in the Hat).  

My bust a rhyme rap would go something like this...

Sorry old doc, but this quote is a bust
when you are in middle school fitting in is a must.

With big body changes and feelings galore
it's no fun to stand out when you feel so unsure.

One day being different will make him feel proud,
but, right now as a teen he wants in with the crowd.

He knows he is "different" that much is true,
but, some days being different makes him feel blue.

Being "same" may be boring and not how he was born
and being proud of his differences makes him feel torn.

The right pants, shirts and shoes are what makes these kids cool,
but, some days his body wants comfort in school.

When kids walk the halls laughing and fitting in
he can't help but wonder, "How did they begin?".

He knows that his autism does not make him "less",
but, sometimes feeling "more" would be sure fun to test.

In chorus when he sings notes from his heart
he knows that his differences stand him apart.

But in the halls and the lunch room where kids tend to gather
he feels like an outsider where his heart doesn't matter.

When he comes home to a place where he knows that he fits
the big parts of the day slip away to just bits.

One day I know he will be proud to stand out
and I will be by his side when he stands up and shouts:

"I may not know what it is to be cool,
but, one day when I am long gone from this school
I will find a place where I belong
and prove to all others that labels are wrong."

"Different, not less" is how the quote goes
and no one knows that better than those
who wear the label "autistic" to school and beyond
but one day the labels for all will be gone.

The "cool", the "hip", the "out", the "in"
the labels all change from where we begin.
Being different will no longer cause him to pout
one day I know he will proudly stand out.

The label "autism" is only part of who you see
the only label he wants is the word "me".

"I am me, me I am
and for the times I don't understand 
I look to those who only see ME 
and not some label from a degree."

"See me not the label!" 
he is trying to shout.
And when one day you do
he will proudly stand out.

I have no doubt that one day, when the doors of middle school close behind him, Ryan will fully appreciate his unique and fascinating mind, and understand that underneath the same cool clothes "everyone is wearing", we are all different. Until then though, I believe he will continue to try and fit in, while embracing what makes him stand out. 

I'm sure Dr. Seuss would suggest I stick to blogging not rhyming, we can't all get a National Holiday to recognize our birth (sorry Jay Z). Regardless of what Dr. Seuss would have thought of my mad rhyming skills, I still wouldn't eat green eggs and ham with him. Nope. Not a chance. Not in a box. Not with a fox. Not on a boat. Not with a goat.