Tag - acceptance

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Our Autism Life
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The Boulders of Memory
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When the World is Small
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One Year
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A Magnificent Boy
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Reflections

Our Autism Life

Awareness. Acceptance. Autism is both just a word and the catchall of our life. I thought it might be time to open the blog windows again — even though two years have passed, maybe because two years have passed. There is no way to recapture all of the moments that have filled that time but I can try now. My boys are two years older than they were when I wrote this post back in 2013, and although we have struggled mightily this past year, the sentiment with which I wrote this is still true — I would not change either one of them for anything in the world but I would make John’s path through life easier. I would clear the road he travels of the rocks and debris, the obstacles and struggles just to get through his day. I’m just a mom, an imperfect one at that, but I’m their mom. And, boy, do I love them. Autism is both just a word and a catchall of our life, both good and bad — just like any other life.

Dear Sam and John, The world is vast and yet I am afraid you will come across hurtful words someday and for that I am sorry because the last thing I want you to think is that YOU, my dear boys, cause me a moment of fear or despair. Sometimes people look at the world in black and white and this is in direct contrast to what I tell you every day: You have gifts and challenges just like everyone else. Some things are harder for you, some things are easier, but be kind. Have compassion for our shared humanity and when you mess up, apologize.Img-2015-sj

Yes, Sam, sometimes I am exasperated when you talk non-stop about Star Wars and Darth Vader and Mommy, can I tell you about my theory about poor poor misunderstood Anakin? and I say, “Do you mean Evil Darth Vader?” and you tell me Well, yes, but it’s complicated. I ask if you want a snack but you ignore me and say, as you jump up and down, Can we call the library and find out if they have the John Williams’ CD because the Star Wars theme song is important to me and I really want it! I want it now!  I ask you to do your homework and you say: There are many Sith lords pushed off their path… and I’m all “Sam! Homework please. I Am Your Mother!”

And John, I will not lie, I fear that we are being taken over by the numerous DVD and CD cases lurking in every corner of our home. I fear for all of the future trees that will give their lives to the paper industry. I would not be surprised if it is you, John, that keeps the industry going. I am hard-pressed to think of anyone who could find and print, one by one, hundreds of 2-inch DVD and CD images via Google search. Each one spits out of the printer hugging the upper left corner of the page leaving 15/16” of paper sad and empty. One by one you bring them to me and one by one I cut them out. And then one by one you place them atop your pile. Talk about a tragedy, all of this paper!

The truth is the exasperation is all part of being Mom, it’s part of the parental experience and I am grateful for it. I am grateful for you.

Autism is both just one part of you and everything about you, it is so entwined in your very personhood and I love your personhood, and I love you. How could I possibly separate you from you? And why would I when who you are is just right. I love your brown eyes and silly grins and even your jumping and flapping because it tells me a story of your happiness. As you race by, circling me and finally land heavy in my lap, I am content because your joy —it makes everything worth it.

Autism is rolling on the floor laughing because John, you saw a breakdancer on an old Sesame Street episode and paused the DVD player in order to pull me down because you want ME, your middle-aged mommy to get down on the floor and replicate those moves. I CANNOT, but you smile as I try and even though you can’t always tell me what is going on inside that brooding head of yours, I do know, right now because I see it radiating from your face that you are happy.

Of course there are hard times. Sadly, no one is exempt from them in this life. Some things are without question, hard. Sometimes, no matter how hard we both try, I am unable to figure out what’s wrong. Sometimes the gap between our methods of communication is too wide and we both flounder, sad in our respective corners. We’ve had to abandon many an outing because we misjudged the sensory overload, the power of a bad day. And there were the THREE years, John, that you did not sleep. Up and ready for a party every single night from 2-5 a.m. That was an emergency, that right there — incredibly hard. I was tired ALL. THE. TIME. You were tired ALL. THE. TIME. We were grumpy, you and I, but we manage, we live, we are living. This is no shell, no need to call in the armed forces— this jumping, pulsing, humming, cacophonous life is just fine, thank you. It is full, it overfloweth.

Life is rarely perfect. Perfect is when you see that what you have is enough. Perfect is when you recognize your gifts and understand It’s complicated is the best way to roll.

You are not lost, if anything I was lost before you came barreling into my world. You are everything good and wonderful about this life, my deepest wish is that the rest of the world takes the time to see it, to see you.

Love, Mommy

The Boulders of Memory

autismtwins.comA Prayer for Owen Meany is one of my favorite novels of all time, I read it shortly after it was published twenty-four years ago and it has moved from place to place with me ever since. It sits on the bookshelf near my bed between Alice in Wonderland and the poetry of E.E. Cummings. When I shed my old life I also shed a lifetime of books, but a select few changed me in ways that I can still recall and, as such, are like family.

“I am doomed to remember a boy with a wrecked voice.”

Memories are funny things. This morning I was on the hunt for winter coats. I remember washing them in the Spring but I can’t remember where I stored them. Dear god, they are somewhere. Oh, of course, I must have stashed them at the top of the stairs. And so at 6:30 a.m. I start pushing and pulling boxes in the dark, muttering to myself, The boys need them today, it’s COLD…

…and in an instant, I’ve lost my balance.

It happens in slow motion, slo-ow like it’s happening to someone else, when the uppermost bin that I’ve been trying to open tumbles down over and around my head. I can do nothing but hold my arms out and feel the contents crash around me on the stairs. The sound of shattering glass makes me gulp but I don’t move. No winter coats, just a million pictures some ten, twenty, thirty years old, some older. Albums, a picture under glass, my high school diploma, a charm bracelet from when I was seven. My memories literally rain down on my noggin and I spend the better part of an hour picking them up, looking, remembering. Pushing them away, then peering at them in surprise.

“Your memory is a monster; you forget—it doesn’t. It simply files things away. It keeps things for you, or hides things from you—and summons them to your recall with a will of its own. You think you have a memory; but it has you!” —John Irving

So much unorganized chaos, my memories. There I am at 13 spiking a volleyball. Here I am with my fellow 20-somethings in my first job. Here I am in my 30s, single and tan drinking on the beach. Here we are, a family of four, then a family of six. I don’t write about them, my other sons, but in my old life I had four boys — two by birth, two by step. Seeing them at age four and seven, why do they still feel like my family? Well of course it’s because they are in the ways that count most, but things change when you divorce. Here we are painting Easter eggs and cutting down a Christmas tree. Little boys, now grown men. The memories pool in my chest and yep, it still hurts, but if it hurts then we are alive.

(Amen.)

Here then, strewn on the dusty stairs, are the banished relics of my life. Poor forgotten memories, unbidden, pushed away.

And now the bin is re-packed and again placed high on a shelf at the top of the stairs, but this time the memories expand, filling memories with more memories like a damn inflatable air mattress. This morning’s fateful intervention of box and noggin has dislodged a torrent of tears, and so I sit with them and write. It’s not so easy to sit in the chair but how else will it get done. I am getting it all down, it’s been a long time coming, but the words begin to trickle and now flow, flow and stop, slow against the boulders of memory then make their way around.

Memories are tough to wrestle to the page, especially when Memory wants to hide things from you, when Memory is a cold, stark bitch…

…sometimes.

Sometimes, too, she is your conscience, your guide, the friend you call in the middle of the night when you can’t sleep.

Sometimes she is warm and full of laughter and reminds you of who you once were and who you might still be.

“It’s a no-win argument — that business of what we’re born with and what our environment does to us. And it’s a boring argument, because it simplifies the mysteries that attend both our birth and our growth.” –John Irving

Well, then. What if you were to just accept this one-and-only life AS-IS and be grateful for it all: And I mean the diagnosis of course, because under all of it, all of THIS, autism is alive and well here; the grief, the grievances, the betrayals tiny and large, that time when you were 14 and she hurt you, he hurt you, the world hurt you and you thought you’d never get over it. Try, and while you’re at it, give thanks for a the box that hit you on the head to remind you of your texture, the mystery that is you. Be grateful for a book on a shelf that made you see the world or yourself differently, the tattered pages of a life, a time, a love. Be grateful and write.

When the World is Small

It’s World Autism Awareness Day, and it feels like I should blog. In our old life, we would have replaced the lights with blue bulbs and waved as the neighbors drove by: Light it up blue! I’m sure it made people more autism aware but did it make them more accepting?

In our new life, we live in the country and neighbors are few and far between. No one can see the soft blue emanating from our doors — just us and we are already quite aware. We’ve been out and about in our new world, and our new world is small — it’s safe to say that many people are now aware of us — we have a way of making an impression. They see that there is something about you two, something special, something different… different, not less.

Some people take a moment and ask. Like the woman who works at the grocery store, behind the deli. She saw you, John, when you dropped to the floor right there in front of her meat counter. Your protest was epic, alarming, coming from a boy your size. You desperately wanted the Paas Easter Egg dyeing kit and I said Absolutely not, because we already had several from earlier outings.

Mommy has to draw the line somewhere.

She had kind eyes and smiled when she said hello. And even though you couldn’t have cared less as you screamed from the floor (you REALLY wanted that Paas kit), I felt her wanting to know, wanting to understand how she could help, wanting to know you. I said, “He has trouble with disappointment.” She nodded.

She smiles every time we come in now.

And Sam, my all-too-aware boy. You want to push autism away and keep it buried. You called it your “deep dark secret” and I hurt for you to feel so, but I understand. In our old life you shared this part of yourself with friends and you were teased and made to feel less. In our new life you want to hide it,  you say you will not reveal it — and it is your choice, after all. It is your life, no matter how much I tell you that you are special, you are awesome, and autism is simply a part of that —neither good nor bad – because really in the end — it’s just a word. It doesn’t change your light, your amazing self. But you are learning that different sometimes feels like less and that is a travesty.

So on this day of Autism Awareness, all I have is this: differences should be celebrated. What makes us quirky should be admired not feared. Having autism makes you different, not less! My biggest challenge as your mom is getting you to see yourself the way I do, the way anyone who gets to know you sees you. You must learn that love and acceptance begin with you and that it will radiate out into the world.

No one ever said this motherhood gig would be easy and it’s even harder alone.

Awareness is good. Acceptance would be divine.

One Year

Five hundred twenty-five thousand
Six hundred minutes.
How do you measure, measure a year?
In truths that she learned,
Or in times that he cried.
In bridges he burned,
Or the way that she died.
—From Rent, Seasons of Love

One year. One long year measured by tears and anger, pain and sorrow and yes, love. You could not take that away — it blankets and comforts me when the chill of you blows in and I am stronger for it. Two boys, amazing beings I could never have imagined and will ever adore. Autism is nothing in the face of this. Divorce and the end of us is nothing in the face of this. This is pure and honest.

When one door closes, another opens. I’m so glad to close this door, this door on one year, one year without you.

A Magnificent Boy

He runs like a gust of wind, fast and brisk. Every now and then, he looks back to see if I’m still following. Of course I am, I’ve been chasing him for years. At last his hand is within my reach and I grab it, hold on tight. Any other time I would put the brakes to his elopement but I see his face and it radiates such pure joy, I allow him to pull me along.

And so we run.

We run hand in hand as the wind whips through our hair. Even though it is night and even though we are surrounded by crowds at a football game, I feel everything still into this perfect moment: me and my boy flying through space. I am part of his world in this moment. When he looks up at me, it’s as if in slow motion, his face a breathtaking picture of contentment, mischief and love. His face tells me more about what he’s feeling than any words could.

I feel the same desperate love lurch from my body as I did the day he was born and they gave him and his brother to me to hold. It’s so brutal and exquisite all at the same time.

I think of this as I read the results of his neuropsych evaluation, a report so stark, so black and white, I throw it across the room. I am knocked down by its coldness and surprised that my grief lies dormant so close to the surface. The sobs I hear, the sobs I cry are so violent — am I still grieving?

Expressive and receptive language skills roughly equivalent to those of a 2-year-old child; daily living skills…a 1-year, 10-month to 2-year, 5-month-old child; socialization skills…an 8-month-old to 1-year, 4-month-old child.

The gap widens the older he becomes.

I remind myself this is just another moment in time, a day in which John was at the tail-end of a strep infection. I remind myself that it is hard to test someone with John’s unique verbal challenges and that just like receiving that first diagnosis, he is still the same boy. I tell myself that I’m not a failure as his mom, as his primary teacher. It is what it is. And he’s a happy child, an amazing boy with abilities to be discovered over time. He is not this report. My grief lies in seeing anyone dare sum him up this way. Why oh why must he be summed up at all?

I remember chasing him across the football field and then how we ran together. I think of all the moments he reveals himself to us, moments of stunning technicolor, his soul bare for all to witness. What if I could gather all these moments, like a cup of jewels, and write my own report. I would start with: A gust of wind, a magnificent boy.

Reflections

August already. A year since I started blogging, a year since we got our official, official diagnosis. The month my babies turn three years old.

I am struck by how fast it’s all sped by and I wonder if I should feel any different, any wiser perhaps? I’ve picked up battle scars and experience along the way, I guess. Parents of the newly diagnosed actually come to me for answers (I wish I had them, the answers that is).

I’ve learned to go out in the world and look strangers in the eye. I imagine that now I look like a calm mother in the face of her screaming twins, not someone ready to burst into tears in a crowded grocery store. Maybe I even look blasé now, like oh this happens all the time, it’s nothing, look at the sale on tomatoes.

I no longer feel like I just got punched in the gut. The newness of autism is long passed. You could say I’ve learned to roll with it. Acceptance has been hard-won and a tightrope I occasionally teeter upon. What’s hovering underneath? Ah, just a pit of hopelessness, but at least it’s lined with ice cream!

I wear this shawl of motherhood like a ball of steel wool, my love is whole, complete, the softest part of me. And yet I bristle and prepare for battles unknown. How can it feel like yesterday that I cradled these boys in my arms?

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