Finding the Elephants

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I wanted to write today because it became apparent in the tiny words “Can I call you, I want to ask you some questions about Autism” from a distant friend that another invisible corner has been turned in my walk in Autism land.

My heart skittered as I thought well here we are, somebody else is seeing it in their family. Am I ready, I wondered, will I know what to say? I took a deep breath and answered back “Absolutely give me a call!”

Sure enough it was exactly what I had thought. This lovely kind woman thought she was seeing Autism in her two year old grandson. She asked me what it might look like and I asked her to describe to me, instead, what she was seeing that had her concerned. She rambled off a long list of possible Autistic red flags intermittent tip toe walking, lack of speech, repetitive behaviors, upset at having the routine thrown off, picky eating, and hand flapping. I listened quietly as she spoke. I just let her pour it all out.

After, when she paused for breath, she asked what I thought. I gave her the standard responses about how nobody but health care professionals such as a child psychologist and neurologists could truly evaluate a child and get solid answers.

elephant

I told her that a speech delay by age two is always something that should be looked into regardless of suspected Autism or not. I told her I would send her a list of Signs and Symptoms on early Autism. I also said that it is often somebody removed from the immediate family who spots oddities or even simple speech delays first because they are not afraid to look at them the way a parent can be. Autism or not the speech delay was something that would benefit from being addressed. I told her again that nobody but the health care professionals can diagnose these things but that in order to do that it has to be brought to the attention of those people.

I heard the lightness of my tone the confidence with which I spoke and the total lack of dread or tears festering up. Two years ago I would not have been able to have this hopeful and light conversation. I could not even say the word Autism without dissolving completely. I am not sure if even six months ago I could have.

For me there has been nothing like my own personal heartbreak and scattering jagged shards of all the bits of my pain streaming away from me in finding out about Nicholas. I mourned deeply the loss of the dream of “perfectly ordinary”.  I don’t know why it was that way for me, except perhaps because in our case we were given no hope. No hope for independence, speech, or even potty training. We were told our child was horrifically impacted and that he may never be reached. So for me, the tears poured for a long time. It was a significant shift in my life, one of those handfuls of moments that really matter and change the course of everything in a life. It broke my heart. I no longer apologize for it or try to figure out why I fell apart and other’s do not or why it was so hard, it just was.

To hear other families beginning their road on this thing always brought a swift return to the grit and whipping cold harsh wind of that pain for me.

Yet, in this instance, I was able to speak with something close to sunshine and hope in my voice. I felt the wind of that now somehow removed pain howling somewhere distantly against my ears but it never did touch me the way it so recently would have. It was a ghost wind of remembered pain. And in a powerful second I felt it puff and blow itself out shrieking a final time in effort to reach me, but finding it could not, it settled suddenly and blew a last gale of grit at my feet. The wind was shattered and scattered in the light airy hopeful feel of my words.

She asked what it was like when my child was diagnosed and what would I say to anybody who was going through it now. I heard myself telling her firmly that people had told me, but I could not understand then what they meant when they said “No matter what it is, he is just going to be your son and nobody else! He is still going to be that little boy and for whatever “they” say nothing will change that. The special little bits that work about him and bind him to you will never be changed by any label or condition. It will not be just whatever “they” say because “they” do not properly measure love, laughter, time, patience, and the connection of a family finding purpose together as medicines. Early consistent interventions make so much difference; whatever they are seeing today won’t be the same two years from now”. I told her how it only came to my understanding years in just what those people meant but how at the time I was bewildered because what they said is not what the healthcare professionals were saying.

I also said that the one thing I know for certain, for very sure, is that there is something quite meaningful when this comes into your life. There is something attached to a bigger destiny. I have learned how tough is the stuff of love, much tougher than I ever thought!

We stayed on the phone for a little while. We discussed a little more of this or that. I never did say more than “You are describing some things that do sound like a healthcare professional could look further into. Your role in noticing these things will be important in your grandson’s life. Be assertive and clear about your concerns. Particularly, the speech delay is something that can be addressed and helped.”  It wouldn’t have been helpful or wise to say more to her. I sent her the list from the CDC about signs and symptoms.

Shortly after that call my words to her came back to me and landed in my own heart. “He won’t be the same two years from now” I had told her that, thinking I was speaking only of what people had said to me, not really seeing it in the moment how concretely it pertained to Nicholas in my moments of today.  But, they came back to me as I watched Nicholas at the San Diego County Fair flapping his hands in joyous happiness running up the stairs to climb without a trace of hesitation onto the back of forty-five year old female elephant named Kitty with a therapist and family friend, those words came cascading back to me fresh on a gentle sighing breeze.

The elephant. One of Nicholas’ early favorite things, one thing that engaged my stiff and silent fringe edged son.  I think elephants provided my first real glimpse into Nicholas. Through them, I could reach him. He would shudder with enormous joy at the sight of these creatures. Impossible to re-count would be the dogged trips I took to the zoo to stand at the gates of their enclosure chatting inanely believing, believing–against hope– with all of my heart, that Nicholas could hear me and understand me even when “they” said he had no receptive language at all.

To say I love elephants now would be an understatement. At the gates of the elephant enclosure, through recorded nature programs on t.v., in books and pictures of them, even very early on I prayed “they” were wrong. And in the massive wrinkled gray skin of these wise land animals, I was rewarded for perhaps the very first time; through them I found one of my first great bridges to Nicholas.  They gave me those first early pieces of my son. In the shrill trumpeting of their calls to each other as we stood and watched I knew “they”, the first neurologist and the psychologists, were wrong. You can reach him, yes, you can! The epiphany of the elephant shattered through my frozen shock and heartbreak. I owe the elephant a debt of gratitude I cannot repay.

Nicholas liked elephants enough that he would engage me to put them on t.v., go to the zoo, or read about them. They interested him enough that they broke through the walls that threatened to separate him from us. Elephants were one of the first things I found that walked right through the heavy fogs of his stiff flat expressional Autism.

Yes, Nicholas liked to see them. For two years at the San Diego Fair I have offered gently to let him touch, if not ride, one of these majestic creatures. But, in the same way he loves the cat but seemingly cannot bear the feel of the fur against his skin, he seemed content to only look.

He has told me for two years in a row “No!” in no uncertain terms. So against the gate we have leaned watching other children gamely ride. I never pressured him we just looked on. I would watch the joy ripple through Nicholas’ skin his hands flapping like dancing butterflies in the sunlight as we stood watching steeped in the sensory wallops. We’d stand there sweetly assaulted by it all;  the scents of fried fair foods, the feel of the cool metal railing and the way it gave and swayed when Nicholas leaned against it at the elephant enclosure, the dizzy drunken sound of calliope music rushing by, and the sounds of children deep in their own laughter—these delights spreading everywhere light and frothy and wispy. Life being lived in tendrils of spun sugar cotton candy and shaded of gentle grins whorled together in soft pastels and the natural ease of childhood joys, all textured light and sweet, but not always reachable for Nicholas. These things are by their nature hard and delightful all at once for Nicholas. Often it is my lone child who stands on the edges. Present but detached and watching.

This year all of that changed, and I knew it had. In preparing for the return of the Fair I showed him pictures from google the way I often do to visually prepare and build anticipation for the things we can do. I show him pictures of rides, food, and all of the fun stuff a few weeks ahead and we talk about how we can do those things.

This year on a sudden whim I slipped in a picture of the elephants being ridden by children there. I put it in with all the rest and we went through them all the way we always do. “Neeko, can eat a corn-dog!” “Nicholas can ride on the roller coaster!” “Neeko can ride the double decker bus!” and then the scrolling hit the elephant picture. I gently held my breath and expelled it softly as I lightly said “And, Nicholas can ride the elephant.” I prepared to whisk by and go to the next image, but he stilled my hand. He stared at that picture for a few long drawn out moments and began tapping his chest saying in his mushy muddled sweet voiced way “I! My turn–my turn! Go-go (Neeko)! I!” I understood him perfectly.

For the next two weeks or more he continued to still my hand and tell me how he was going to go and it was his turn! In looking back now I can mark it as the first time I began to trust Nicholas had complete understanding and intention behind what he said.  He said he would go, but I was unsure until he vaulted himself up those stairs and right onto Kitty’s wide back. He’s said and done many things since then! If he says he will, why then–Nicholas does.

On that day as Nicholas and his friend and therapist circled slowly around that pen I watched my son clapping and flapping out his particular brand of ecstasy and joy. I cried quietly, I allowed myself to expel a tense pent up breath of wonder, and as I did suddenly I was crying. I allowed myself to as my tears were hidden behind my sunglasses and they flowed with healing power. There were lots of moms and proud dads there, but I knew they weren’t having the enormous experience that I was having! It was bigger than the elephant and it was a gift, a hard won gift, for Nicholas. For me!

My words to the grandmother came back. I’d told her how people had said to me that he won’t be the same two years from now, just like any kid who is growing and learning. He won’t be what “they” say; he’s just going to be your boy. Love, belief, family, and early intervention make all the difference in the world. They are medicines that are not properly measured by science; they are woefully overlooked, but powerful stuff.

At the gates of that enclosure watching Nicholas go round and round sometimes flapping so hard his entire body stilled frozen like a current passed through his soul as his eyes rose to heaven and his mouth opened in his silent signature of ecstasy, the gaping O shape and silent scream of joy, I knew how every word that had been said to me had been some of the greatest truths that had ever come to pass in my lifetime. In telling another, they were then turned into the truest words I’d ever spoken about my son’s Autism.

They have been true in my life; they will be true in hers, if it is Autism that landed in her life. They will just have to find the bridge, the way through the wall. They will have to find their child’s elephant.

As Nicholas jerked and clapped and smiled a great gappy happy toothed smile making sure he met my eyes completely in each circle, the wind turned. It blew in peace. My peace caused a swift backlash and my fear tried to roar angrily for a moment. But, my peace banished it and it rolled away crying out a banshee seeking another host to feed it. I know it will come shrieking back, but twice in these last few days, I sent it away. It could not reach me! Sometimes it’ll land and I will crumble up against the inevitable pain of watching his beautiful face watching stiffly and so sweetly quiet and stoic on the sidelines unable to quite grasp with ease the low hanging fruits of what comes so easily to other children. Yes. Hard winds will come–but it is also true that I have felt the power of bringing that wind to heel.

To you all I say wait for it, wait for the soft miracles, they will come. Sometimes they are there but for a tender fleeting moment, like a butterfly alighting, and you only see them as they catch the light in the beauty of their passing. They won’t fix everything, but these miracles are sweet anyway. They aren’t always big like lightning bolts, sometimes they are delicate like a feather brushing lightly against your skin. A shivery whisper of something unbelievably good will come passing across your mind like a shaft of sunlight. It will be warm and you will ease into the gift of them. Sometimes you only notice them as you stand there in a moment facing back the way you have come. But, when you do see the shadow make way for the light, then it’s sweet like goldenrod soaked sun-warmed late September honey. You can store them up. If you are quiet and gentle you will surely see and feel some of these soft miracles!

If you are new here find your kid’s elephant, whatever it/they are. When the cracks appear throw your shoulder and all of your love against those openings, and go gangbusters in! Find the elephants. Then follow them in. You’ll find them—never stop looking.  Then find the next one! Autism, for me so far, has been mostly about finding the elephants.

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