“Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.”
I’m a little afraid to say this out loud. I’m afraid to say it at all, because so many times before we’ve seen a glimpse of this, and then it has disappeared.
But I’ve been watching this come for a little over a month…. Here and there…. A taste….
I thought it was just a stimmy noise she was making….. I was afraid to hope, to believe that it might be… That it might just be what it is….
One perfectly shaped, spoken word.
She is calling to me. “MaaaMaaa…”
She is asking for me. She is speaking.
One word. I don’t know how long we will get to keep it this time…
But, for now…. It is a rare and precious gift…..
(Image is of Mary in a garden. She is smiling.)
“I almost wish we were butterflies and liv’d but three summer days – three such days with you I could fill with more delight than fifty common years could ever contain.”
― John Keats
You won’t find me here much this summer. We’ve been busy, soaking up life. I’m sorry to say you won’t even find many pictures of our summer here yet. We’ve been so busy enjoying this young summer, I’ve forgotten to document it.
But really, isn’t that the point? To soak it up in such deep breaths that there is no need for pictures because those moments simply become imprinted on your heart in ways that no two dimensional image ever could?
We’ve started kayaking together around the local pond near our house. Each of us has our own boat, except Mary who sits in front of me on mine. She loves it. The kayak is low enough to the water that she can run her little hands through the water as we move. Her giggles and squeals of delight mingle with the sound of the kayak cutting through the water as eagles soar above us and great blue herons startle out of their hiding at the edge of the water, opening their enormous wings and taking flight just over our bow. Sometimes we drift in the middle of the pond, while other times we skirt just under the overhanging tree branches on the edges, the leaves on the gently bending boughs tickling Mary’s outstretched fingers as we float by. This is ecstasy.
Troy has been dirt biking every chance he has, sometimes just around our property, other days on grand adventures with Daddy. They load the bikes into the back of my husband’s 1965 F100 and head to the trails. Other nights we have been to the drive in movies. Some nights it’s just me and the kids in my minivan. But when Daddy comes, he brings the truck. Every time they venture out in this magical vehicle, he comes home with reports of which drivers of what cars complemented them on their amazing truck. And each time I smile, enojoying the predictable nature of his excitement…. The way he crinkles his nose, squeezes his eyes in excited blinks and pumps his arms down at his sides as he tells the stories. I fall in love with this man child all over again….
Joyce has been soaking in the lazy days of summer with her netflix. It would seem she memorized each show as she watches it, quietly repeating each word a character utters just behind the script. Her language is increasing in leaps and bounds. Her expression, once translated though these scripts is amazing. She loves kayaking too, she loves the taste of freedom it gives her. She can lead us, exploring the little coves and bays in our tiny lake. She is becoming so independent, so wondrous.
We’ve been busy. And it’s only going to get busier. We are due for another seaside vacation with my family, once this hurricane lets up. We are planning trips to DC, a repeat trip to Gettysburg- we were just there a couple weeks ago for a Wheelhorse Tractor Collectors Club Fair – these are the kinds of things you find yourself doing for your kids- especially when said kid has an Aspergers style obsession with a certain thing. ;) We now have a season pass to a local amusement park, that has such wonderful accommodations for our kids, that I have been able to take them there for the day on my own. And of course, in my “down” time I’ve been working diligently, planning and replanning our top secret mission to that amazing place that did so much for my kids, especially Mary, the last time we snuck down there.
But tonight, as I was tucking my youngest into bed, I was struck by the enormity of what we have been given. So many times we were told that we might not make it here. That we might not be able to enjoy what we are now enjoying with these amazing children. Too many parents, including some friends, won’t tuck their children into a peaceful sleep tonight. Some are sleeping fitfully next to their little ones in hospital rooms. Others have only a grave site to visit. And me? How on earth did I get so lucky? How did I get to have these ones? The gratitude some nights is just so overwhelming. How many times were we told to prepare to outlive her? All those things that were supposed to happen, and just didn’t….. Sure, we have some struggles. But I see so much in this community. So much heartbreak….. So much isolation…. So much sadness… So much fear…. So much hope…. So many triumphs….. So much beauty….. So much love….
It overflows. The love, the pain, the beauty, the gratitude…..
It overflows in the blessing of one soft good night kiss on the cheek of a sleeping angel.
“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.”
― Shel Silverstein
(Image is of the three most amazing children in the world, standing at a cannon on the battlefield in Gettysburg, where we did a quickie visit after our pilgrimage to the Wheelhorse Collector’s Club Festival)
If I have a monument in this world, it is my son.
Oh, my sweet boy.
There are so many things I could say right now. So many things I want– I need to tell you.
You are, quite simply, the best thing that has ever happened to me.
You were a surprise. Twice! First when we found out you were growing inside of me, and then when you decided that you should make your grand entrance a full month early. But you are the best surprise I can imagine.
You are an adventure. You never seem to stop moving. It’s full throttle all the time with you. And even on the rare occasion when your body stops moving quite so fast, it’s as though I can still see the gears in your head spinning, processing, inventing, and savoring life.
You live life with such intensity. You are an amazing person. You are intelligent, considerate, caring, loyal, incredibly strong and sensitive.
You amaze me. You have to work so hard at your friendships. The effort of interpreting the social world takes its toll on you. I can see it. I can see the exhaustion at the end of the day. But, I’ve never witnessed the level of friendship that you show to people. As hard as it is for you, you go out of your way to befriend the underdog. Or maybe it’s just that you sense something familiar in them.
I’ve seen it in the way you interact with your sisters, the effort of the gentle calm you manage to give them, even when in the midst of your own storms.
You are a gift. Not just to your sisters, but to everyone you meet. I’ve watched you with your other autistic friends, whether or not you knew that they were also on the spectrum, there was a special kind of magic there. And I know that those days are the most exhausting for you. I know that even the fun comes at a cost. But you amaze me each time for a different reason.
Everyone who knows you admires you. You might not hear them, but as you take off down the hill on your dirt bike, they will comment to me on how much you’ve grown up. How you handle yourself so well in those places that used to be impossible.
I know it’s still hard. I know there are days when you struggle mightily – more than any little boy should ever have to. But I remember where we came from too. And I see the same stories repeated over and over by other moms, here in this strange cyberland. And I tell them about what used to be for you because it may help them to see the amazing young man you have become as a future for their own children. Did you know that you do that for people? That people who don’t even know you adore you?
When you were little, we just didn’t know, we just didn’t understand why you were struggling so much. We just thought you were incredibly shy when you shut down on the t-ball field. We thought you were just an overactive little boy when your preschool teacher kept pulling us aside to tell us what had happened that day.
We blamed ourselves for not giving you enough. For not giving you enough friends, enough discipline, enough routine.
And when things kept getting worse, I kept you and your sister home. After carrying you kicking and screaming out of the mall and church enough times, I gave up. We would stay home for days at a time.
It was so hard. It was so isolating. For all of us.
But when someone finally uttered the words autism to us, it was a game changer. There was a learning curve, to be sure….
But now that you’ve been given the right tools, the right village, the right supports…. You amaze everyone you meet. You inspire more people than you know. You have friends- such good friends. And you are a good friend in return.
I am so proud of the man you are becoming. I know you think I talk too much. You tell me I use too many words. Maybe it’s because I can’t find the right words right now to tell you how very much I love you and how proud I am of you.
I love that this little boy who gives the obligatory lean-style hug, will on occasion spontaneously hug his mama. And have I told you how much I love watching you and your cat, Enzo? The two most active creatures in the house, snuggling together. The you each rub your heads against each other in the morning, every morning. The way you know that he will calm you when you need it. That you have identified one more tool in your box that can help you manage a difficult day. And this. This is beautiful.
You changed me. And just like I still tell you every night before bed, I must be the luckiest person on Earth, because of all the little boys in the world, God gave me the very best one.
Happy Birthday sweet boy.
(Image is one of my Grammy holding and gazing adoringly at her newborn first great grandchild- you know him as Troy)
Death is nothing at all.
It does not count.
I have only slipped away into the next room.
Everything remains as it was.
The old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, that we are still.
Call me by the old familiar name.
Speak of me in the easy way which you always used.
Put no sorrow in your tone.
Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without effort
Life means all that it ever meant. It is the same as it ever was.
There is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval, somewhere very near, just around the corner.
All is well. Nothing is hurt; nothing is lost.
One brief moment and all will be as it was before.
How we shall laugh at the trouble of parting, when we meet again.
~Traditional Irish Saying
(For context, please read the old post this came from by clicking here. Thanks.)
It’s been a little more than two years. But she is still here. Some days, like today, it feels like she is even nearer than when she was living. Days like today the memories of all the little things she did come flooding in, like the way she would stand in the doorway of her apartment waving enthusiastically at us as we ran down the hall, and watching us as we waited for the elevator, or the cans of soda and full-sized candy bars she would keep in her fridge to offer us when we came (and how I think she probably did it just to drive my mom crazy!) the way she would do a little wiggle dance before an excited hug, or the little sayings she had, “Gotta get my bearings here,” when parking a car, or “it’s just a material thing. Material things you can replace, it’s people that matter….” Funny how that works….
My husband lost his wedding band this morning. To say that he was distraught would be an understatement. He’s been on a trip in France all week. He’s been itching to get home to us. He’s actually even been complaining about the food- he feels like he’s gaining weight on all the pastries! (yeah, not feeling too badly for him on that one… ;) ). So this morning he decided to go for a run. He put his ring in his pocket, thinking it was somehow safer there. During his run, he continuously stopped to take pictures of European cars for Troy. At some point, while taking his phone out of his pocket, the ring must have fallen out. It’s gone. He looked for it all day. He heads home in the morning. As he was telling me about his awful day, I suddenly heard my grandmother’s voice echoing in the simple words I spoke- “It’s just a material thing. Just a material thing…” When I hung up the phone I smiled a little at how near she felt to me right then.
As I walked over to the dresser (the one that used to be hers) something drew my hand to my top drawer. Suddenly I remembered, the week that she had died. I remembered sitting with my sisters pouring over all of her old jewelry- much of it costume jewelry. I remember laughing about the giant clip on earrings she loved so much. I remember one sister being insistent that she get the engagement ring, the other wanting my grandmother’s wedding band. My husband later seemed confused as to why I didn’t ask for either. The truth was, I felt enormously guilty that I hadn’t been able to be there with her as much as I would have liked during the last years of her life. My focus had shifted, as she would undoubtedly say was appropriate, to her three great-grandchildren. We lived 600 miles away, and phone conversations are difficult for me under the best of circumstances, but it became a general impossibility with her quiet slurred speech competing against the constant banter of my babes. I visited her every chance I had, but still I felt like we had been distanced. And I remember looking at the jewels that my sisters were claiming and thinking this was how it should be. There should be no bickering back and forth right now. That’s not what Grammy would have wanted. I took the ones that no one seemed interested in, the costume jewelry for Joyce, a few old rings and necklaces that I had bought for her over the years, the watch she bought while we were in Ireland together, but nothing that I thought my sisters might be interested in. Then a tiny white box of very plain wedding bands emerged from the pile, and my sisters didn’t want them. One was broken- cut, in fact. The other had a simple spacer on it. They had belonged to my grandmother’s parents. My great-grandmother died when I was 7, a year before my youngest sister was born and probably to early for my middle sister to really remember her.
I quietly took the rings, relishing the quiet memory of my great grandmother’s quick wheezy laugh, and the gentle Irish brogue with which she spoke. I remember she wore hearing aids and her phone was turned up incredibly loud and being really entertained by that- the whistling of the aids and the super loud phone. I remember thinking she was just so fascinating. I remember loving her and laughing with her. I remember when she went into a nursing home, Grammy would play with me out in the hall so that my parents could visit with Grandma (what I called my great grandmother, because that’s what Dad called her). I remember Grammy letting me race down the halls of the nursing home in an unoccupied wheelchair. And I remember the day I came home from school and I stood in the kitchen while my mother told me that Grandma had died.
Material things…. Sometimes they are not just material things, Grammy…. Standing by my dresser, I suddenly had an image of the simple white cardboard box. I opened the drawer, and, there, carefully placed inside of another box, I found it. Inside were three rings. The two bands belonging to my great grandparents, and a third. One that no one could identify at the time, but looked to be a man’s wedding band. I scooped them up and took them to the jeweler. The band once broken is being mended, it’s mate, is being resized to fit the great-granddaughter’s finger. The third band, is perfect, as it turned out. I think it may have belonged to my Grampa, Grammy’s husband. It is rose-gold, hand engraved, and apparently very rare. My husband comes home tomorrow, and we will again have matching bands. And the third band, it currently sits on my index finger, as a reminder of the love that flows between here and eternity.
As my children and I were strolling through a mall on our way to one of our favorite restaurants this afternoon, the scent of fading tobacco drifted through the air. There is a tobacco shop across the hall from the restaurant, but this scent felt different. It was distinctly the scent of my grandmother’s apartment. I smiled as I breathed in the scent, soaking in the memory, knowing that she was near. And I know she’s been with me even more now than before…
Certainly she was with me today, guiding me, finding the rings, comforting me with memories. Memories of her, and even memories of how much she loved my husband. I used to feel the need to jokingly remind her that “he is a little young for you, Grammy…” They would pal around in their matching black leather jackets together. He would easily offer her his mechanic’s jacket on a chilly evening and she would happily accept. She would thank him for culturing me when she found out the first gift he ever gave me was a Frank Sinatra CD. So I know she will be smiling on us when I give him her father’s wedding band tomorrow. Because maybe it’s not just a material thing after all.
I am ordering a replacement ring from the same shop in Dublin that crafted the first pair, because those are ours. But it’s nice to know that until it arrives, we will still have a perfect pair, and who knows, maybe we’ll keep wearing both, although Joyce is already eyeing those simple bands, in love with the legacy of them.
So maybe it’s not the Mother’s Day gift I had expected. But I can’t think of anything nicer than being able to spend this weekend, in some way, with my Grammy and Grandma.
(Image is an old one of my two grandmothers- Grammy ( my Dad’s mom, on left) and “Mum” (my mother’s mother- hey that’s what she called her, so that’s what I called her..) I was so blessed to have had all four of my grandparents and one great grandmother when I was first born, and although Mum is not a part of this story, she still holds a very special place in my memories and in my heart.)
“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
― Henri J.M. Nouwen
It’s been a rocky last few weeks in this house. It’s been stressful, filled with anxiety attacks, meltdowns, frustration… and gratitude.
I’ve heard it said that an autism parent’s job is not just to prepare his child for the world, but also to prepare the world for his child, meaning we have to make the world that our children enter into one that is a little more understanding. I’ve always agreed with that sentiment, but I think on some level I worried that it might be unattainable for my little crew.
I was wrong.
Thanks to you.
We’ve always been pretty open about our three children and their three different brands of autism. Even with their friends. Maybe especially with their friends. Just before Easter I found out that Troy was being bullied at school. To be fair, the bully has his own personal issues, but still, I was livid. I’ll admit, when I found out, I had a few choice words I wanted to share with that child. As it turned out, I had to get in line– behind an entire class of fourth-graders. It was all I could do to remain composed in front of Troy as he told me how all of his friends had surrounded him and confronted the bully head on. Because they genuinely like him, for exactly who he is, just as he is. As far as Troy’s little band of brothers was concerned, nobody was going to be allowed to pick on him for his differences. It was just a little harder to stay angry when my heart was bursting with gratitude for these little boys.
And then on Easter, we made an attempt at a crowded holiday mass, knowing that it was unlikely our crew would make it through. And we didn’t. Not even close. But, we were surrounded by friends, so we smiled, got up and got out. Sure, there were probably a few dirty looks for our disturbance, but after having been on this wild ride for a few years, I’ve managed to train myself to pick out the gentle smiles of understanding in a crowd. There was a time (in fact there are still many times) when we wouldn’t have even tried. Or when we did, I was never sure who was in more tears- them or me…. But now, with more people sharing in our journey, it’s… different.
And then, last week, I drove the kids up to Massachusetts to see some of the extended family. They are people we don’t see every day. They are people who don’t see the ups and downs, who maybe shouldn’t be so familiar with the little things. Many of them, are some of you. And that made it so much easier.
Easier because I didn’t have to explain over and over again why Mary still isn’t talking. Because you already knew.
Easier because I didn’t have to ask people to wait for Joyce’s response to a question, or to be patient and try to decipher her scripts as she processed the excitement around her. Because you already knew.
Easier because I didn’t have to apologize for Troy hiding in the bedroom with his computer, escaping the overwhelming number of people that descended on my parents’ home for a party celebrating my new nephew. Because you already knew.
I didn’t have to have to have the same conversations over and over again, because you had taken the time to read it in snippets here. And it’s maybe a few minutes out of your day every once in a while, but it meant the world to us. Because it connected us- because it made our two worlds feel a little less far apart.
I had an old blogging friend over for a short visit last week before we left. We found ourselves talking about the separation between the blogosphere and the “real” world, how she has her blog as a very separate entity from her “real” world friendships. But she said something that struck me- something that in so many ways felt like a truth I already knew. She said that in many cases, it was easier to talk to these virtual friends- the bloggers- than it might be to say something to someone you have to see in real life every day. It felt like truth because, at least for me, it is easier to pour it all out here, onto a page, than to say it out loud.
While my corner of the blogosphere is relatively small, it is sacred to me because you are here. And I know you are all here for various reasons. Many of you are friends I have met through other blogs. Many of you I have found along this bumpy road of special needs parenting. Many are family and friends, or friends of friends, following along via Facebook… Or perhaps you just stumbled upon this space while searching for something totally unrelated. But you stayed long enough to read this. And you stayed long enough to get a glimpse into our little world, and maybe it changed you.
And however you got here, maybe it helped you to understand our family just a little better. My hope is it may have helped you see my children (or even your own) through a different lens. And maybe you slowed down and noticed the light through the trees in a different way, or the dancing water droplets in the fountain. Or maybe you offered a smile or a nod to another family struggling in line at the grocery store.
Or maybe, as I clumsily tried to explain why my kids were acting the way they were, you just smiled in a familiar way that said you already knew…
So thank you for being here. For listening. For following. For accepting. For being a family to us- whether that be in the “real” world, or in the “virtual” one. For changing a little corner of the world just by making it a safer place for all of our children.
“You must remember, family is often born of blood, but it doesn’t depend on blood. Nor is it exclusive of friendship. Family members can be your best friends, you know. And best friends, whether or not they are related to you, can be your family.”
― Trenton Lee Stewart
“Out beyond ideas of wrongdoing
and rightdoing there is a field.
I’ll meet you there.
When the soul lies down in that grass
the world is too full to talk about.”
It’s April. When our family first started down this path, April felt momentous. It felt like this amazing community of people coming together quietly, sharing stories, sharing support, just sharing….. It felt innocent….
Now it feels loud. It feels angry. It feels like groups of parents fighting against groups of autistic adults. It feels like there is absolutely nothing anyone can do or say that won’t piss off someone.
Large companies like Panera Bread and Chili’s Restaurants are confused on how best to show their support. They want to do something to mark the month, to help the folks who need it. So they pick a charity, and suddenly folks start screaming from within the community – that is the wrong charity. So they pick another…. More folks start yelling…. So they give up (I mean, really, at this point, wouldn’t you?) and even more people start yelling and boycotting. You just can’t win with this community.
I think we’ve forgotten. I think we’ve forgotten who this is supposed to be about. We’re so busy being insulted, we’ve forgotten. We were supposed to be spreading awareness and acceptance for our children and the autistic adult community they will someday join. We’ve forgotten to listen to them, to the people who get it in ways that we just can’t.
And most importantly we’ve forgotten that we should be building each other up, instead of tearing each other down. So much progress has been made in terms of better understanding, better supports, better advocacy, more community, and more acceptance of differences. But it will all stop if our community can’t stop fighting against each other. We will never get what our children and friends need if we continue down this divisive road.
We’ve forgotten that we should be celebrating instead of fighting. We’ve forgotten the joy. We’ve forgotten to stop and enjoy the dance.
I know there is a lot of hard, but if you spend all of your time focussing on the hard, you’ll miss the incredibly beautiful parts.
You’ll forget to slow down and just be. To just lay in the grass and watch the clouds and rejoice in the trees.
You’ll miss the happy scripts, the joy of her speech as she tells you what your answer to her question will be, and the incredible sparkle in her eyes when you find that connection – because instead of changing her script, you followed it.
And you would miss the ten thousand amazing facts you never thought you’d need or want to know about Wheelhorse tractors. And while you may think you would never care about a Wheelhorse tractor, you would miss the fun (yes, fun!) of planning for and looking forward to the Wheelhorse Tractor Festival next summer, or the countless car cruises and reruns of the British motoring show, Top Gear. And if you missed all of this because you focussed on the hard, you would miss the big thing: his smile and all the joy that comes along with it.
I am tired of the noise. Tired of the anger. I don’t think that’s what April was supposed to be about. We need to stop fighting against each other and try to remember who we were supposed to be fighting for. And that doesn’t come from arguing about vaccines, discounting the voices of autistic adults who have worked so hard to express themselves, or jumping all over a company that was trying so damned hard to support our community and then finally, understandably threw their hands up in frustration. It comes from supporting each other, and more importantly if comes from supporting our children, autistic or not, by slowing down and trying to see things from a different perspective.
“It turned out all she could see was the fountain; she’d taken it in and was ready to move on to the next sight.
I hadn’t finished looking at the fountain yet because, to my vision, the fountain was a collection of dancing interlocking patterns that each needed attention.
Though it took me much longer to take in that fountain, I realized that the richness I experienced was so much deeper than most people ever see. I began showing her the textures in the water, the way you could see the individual water drops held in mid air sparkling in the light, the unusual colors blended in the pool .. endless vignettes that to me were huge and visceral and to her were just a fountain.”
~Michael Moon, autistic musician, artist, and author
Maybe we need to be reminded. Slow down. Enjoy them. Stop trying to fix them. Stop fighting about them. Just enjoy them for the gift that they are.
“When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies.”
― J.M. Barrie, Peter Pan
Troy is giggling mischievously as he runs around the corner and pops out from behind the wall. The glint in his eyes is unmistakable joy, because as he emerges, Mary is laughing so hard she can barely catch her breath, celebrating by waving her little strips of paper excitedly in front of her. Happily, Joyce is behind Mary laughing equally hard as she feverishly flaps her fairy dolls up and down in the air, as she bounces up and down on her toes. They are all laughing. They are all rejoicing in each other’s joy.
These three children are autistic. You’ve probably heard about the newest autism rates released by the Centers for Disease Control. Based on data collected four years ago, 1 of every 68 children in the US has autism. Three of those happen to be mine.
And if you happen to be at all involved in the autism community, you have probably seen or heard the passionate cries from either side of the aisle about vaccinations, about curing these stricken children, saving them from being lost forever….. Light it up Blue for Autism Speaks, Light it up Red to sound the alarm, save our children, fix them…. There is so much, just too much. It makes my head spin….
Because I just don’t get it. I don’t see that my children and my friends need fixing. I don’t see where they need a cure for who they are. Because in our house we don’t declare victories over autism. We don’t try to recover our children from autism. We don’t try to separate them from a part of themselves that paints every single perception they have with its multicolored brush. And I believe our children are better for it. They are happier. They are more complete, learning to work with their super powers (as we commonly refer to their autistic gifts) instead of trying to hide them or change themselves to conform.
Sure, there are hard days. Lots of them. Life would be simpler, easier, and more “normal” if we didn’t have autism in our family. Life would be simpler if Troy didn’t have hour and half long meltdowns like the one he had yesterday. Life would be easier without the anxiety attacks that come on suddenly. Life would be easier if Joyce could better interpret the social cues in her first grade classroom. Life would be simpler if her language came a little faster and more clearly. Life would be easier if Mary could speak. Life would be simpler if Mary could play with her friends. Life would, indeed, be simpler without the autism.
But we would miss so much.
We would miss the satisfied smile that he gets when the tractor engine starts up and the mischievous glint in his eyes as he revs the engine on his dirt bike. We would miss the seemingly endless dissertations on the marvels of British and German engineering, and the crinkling of his nose as he processes new information. We would miss the pure joy that going to a good car cruise brings him. We would miss the boundless energy and the intensity with which he is able to pursue his passion…..
We would miss the dreamy way that she smiles as she regales us with another story of what her princess dolls are up to now. We would miss the imaginative way she compensates for her struggling language by seamlessly weaving scripts from various movies together in a sort of coherent conversation that for so long was the basis for much of her language. We would miss the bounce of her hair as she happily skips down the hall, and the way she is so open with her affections, and carefree in her expression of joy. We would miss out on the simple fact that fairies are real, and all that that means…..
We would miss the opportunity to watch the trees bend and wave in the wind and the leaves flitter and dance individually in the breeze, as the sunlight filters through the branches. We would miss the floating, bouncing droplets of water in the fountain, or the rush of the waterfall. We would overlook the beauty of the bubbles moving and reflecting the late afternoon sunlight in the aquarium. We would miss the gentle caress of her hands exploring our face, the quiet touch of her forehead pressed against our own. We would miss the joy of the dance, free and intense, as she smiles and squeals in delight, staring into our eyes….
We would miss so much.
There was a time, not so very long ago, when I asked my friends and family to place a blue light on their front porch. So many of them did. They did it not to support Autism Speaks, but to support us, to offer light in the darkness of confusion during those early days of our journey. I am still so grateful for the quiet support we received.
As I explained here in my post Community, my children have come to look to April 2nd as a sort of party day – a day when they celebrate that special part of themselves that makes them a little bit different. But as I have come to understand more about this community, I have found myself torn between wanting to celebrate this day in the way that my children have come to expect and enjoy, and realizing that those blue lights are somehow supporting a group that is hurting my children and the community of autistic adults that they will one day join. So last year I wrote this in Blue Lights and Rainbows, explaining why our house would look a little more like a disco.
And then the other day, my sister, wanting to do something to show her support, but understanding that after Suzanne Wright’s awful op-ed last fall that there was simply no way I could bring myself to ask anyone to support Autism Speaks, asked me what color light she should put up this year. After giving it some thought, I realized, my kids see this as a party day – a day to celebrate themselves, their autistic friends and everything that makes them, well, amazing. So maybe we should quit with the candlelight vigil attitude. Because, despite what Suzanne Wright may think, I haven’t lost these kids to autism. Autism is just one of the many fabulous things that makes them who they are. It brings challenges, but the gifts are still worth the celebration. So no more quiet blue lightbulb. Nope. Those Christmas lights that we just haven’t been able to get down yet (it’s been one heck of a winter. ;) )…. Well they’re being switched back on tonight. Just because we’re not lighting up blue, does not mean we can’t still celebrate our fabulous family.