You Are Not Alone

About a year ago I attended a support group for parents of children with autism. It was in a therapy gym and we sat among mats and swings and exercise balls -- we looked like overgrown children spread across the floor trying to make ourselves as comfortable as possible. It was casual. The person running it was an Occupational Therapist who worked mostly with kids on the spectrum. The topic was somewhat general -- basically how to deal with the diagnosis.

At this point, Sean had been given his diagnosis for about three and a half years. I had come a long way, thanks to the help from some really great parents I had met who had been on similar journeys and a doctor who made us see the light and helped us come to terms with what having a child with autism really meant. Her philosophy was to treat the entire family -- we were all affected by this disorder and Sean couldn’t thrive unless we all understood why Sean did the things he did.

She reiterated what my father had said, “No child wants to feel like this. No child wants to behave like this.”

And from that point forward, we stopped taking it all so personally and started regulating ourselves in order to create peace and balance in our home.

Each parent took a turn standing up and telling his or her story, sharing what they felt comfortable sharing. We were all at different places and we all had children spread across the spectrum. No story was the same and yet similar words came out of each story: grief, sadness, fear, overwhelmed, struggle and loneliness.

There was a young mother, with light reddish hair and pale skin, her eyes rimmed with redness, tissues bunched in her hands and I couldn’t help but to watch her taking it all in. I could see that she was in a lot of pain and guessed that she was new to the diagnosis. I saw in her what I had seen in myself -- a confused and sad person who’s world was blown apart and who was overwhelmed of where to begin to pick up the pieces.

When it was her turn to talk she took a deep breath, her shoulders shook and the tears began to slide down her face. She had a three year old boy who wasn’t talking, wasn’t making eye contact, having terrible tantrums and obsessed with lining up his toy cars. She had received the diagnosis from a developmental pediatrician a month ago and although she knew something wasn’t right with her child she wasn’t prepared for the diagnosis of Autism. She was afraid. She was sad. And mostly she was lonely.

I wanted to move across the room and sit with her and tell her that she was going to make it through this. I wanted to tell her that she was going to amaze herself at what she was capable of doing and that she would surprise herself at how much she would come to completely love and adore this little boy who built so many walls around himself. I wanted to tell her that it was horrible and difficult and completely exhausting but that, in time, she would make a life for herself and for her family that would make more sense.

It’s like when you have a cut on your hand and it is tender and sore, but over time it heals and maybe leaves a small scar to remind you of how much it once hurt and how far you have come. It doesn’t go away but it doesn’t hurt like it initially did and it might not look pretty but it’s part of your history, and it tells a story of how you got where you are now standing.

I wanted to hug her and tell her that she was not alone, to look around the room and see all those who had been where she was and to see how far they had come and that they were still standing and sharing and, yes, they were sometimes laughing.

When the meeting was over, I walked over to where she was standing, a table with punch and pretzels and Chips Ahoy cookies and I smiled warmly and said, “Hi.”

She looked up, a paper cup in her hand, her eyes swollen and smiled back. I waited a beat to see if she wanted to talk -- I remembered how I felt at that point, exhausted and not ready to share everything and embarrassed to cry in front of strangers. I wasn’t sure where she was in the whole grieving process and I didn’t want to overwhelm her nor did I want to say, “It’s going to get better.”

The truth is, I didn‘t know if it would get better. It sometimes gets harder. But what I did know is that she would get better. In a few weeks, months, maybe even years she would cry less at night after tucking her child into bed, she would mourn less at the playgrounds and the school yards where the children ran freely and happily, and she would get stronger.

She had an older child, like me, who needed her and she would be there for him. She had an autistic child, who would teach her to love more freely and to find kindness and forgiveness and especially patience in the toughest moments. She would make it.

When I drove home that night, I couldn’t get her sad eyes out of my mind. I wanted to make it better and reassure her but this was her journey and nobody could do that for her but her.

I often think of those who smiled at me, touched my arm, gave me a knowing look (been there and done that) and sometimes that was enough for me to put myself back together, to give me hope that I wasn’t alone and that I could survive this. I sometimes wonder where I would be if it were not for the kindness of those who took the briefest moments out of their busy lives to notice me, struggling and disheartened, and to quietly give me some small gesture to know that I would be okay.

Wishing and Hoping

I had spent most of this week, organizing fall/winter clothes, cleaning closets and thinning out toys and books -- a nesting feeling that always hits me in mid-October -- when sunlight is fierce and quick and my tired knees ache with the promise of rain. While cleaning out a bookshelf, I came across a journal that I had kept for awhile. I had always loved the feeling of pen against paper, the measured, slow translation of mind to notebook but easily replaced by quick typing skills and the easiness and portability of a laptop. I had filled several pages with my thoughts exactly a year ago, and one page was titled, “My Wish For Sean”.

I was curious what I had wished for, a year ago, in a seasonal setting so similar to today -- the trees changing in a fury of colors, leaves freefalling from brittle branches and wallpapering the lawn. What had I wished for? This is what I wrote:

My Wish For Sean

To smile
Freely and often
Pink lips framing chicklet teeth.

To bite into the goodness
Without hesitation
And not hide in the backseat of the mini-van.

To be happy
Free of encumbrance
And at peace
With a brain
That runs and hops
Ahead of thoughts and words.

To find love
In safe arms of another
A flower with tender petals
Blossoming open
An umbrella of color
Keeping him safe
And warm.
Holding him tight.

I’ve never been greedy with my wishes
I only want for him
a window left open
A suture
A sling
To help make it possible
To share in the simplest moments
To be more than just this
Diagnosis.

A year has passed. Another candle added to a frosted cake, a little boy’s new wish (for me, the same wish -- help me help him be all that he can), fall, tumbling into winter, melting to spring and bursting into summer and now back to fall. So much has changed and yet, here I am, holding onto wishes that haven’t changed or been modified.

The other day Sean asked me,
“Mommy, will I be married someday?” his eyes bright, his mouth speckled with grape juice.

I smiled and nodded and said, “Yeah, maybe, Sean.”

I had an overwhelming need to nod my head, to keep the pain and sadness at bay, to not betray him or to let him know that those thoughts never enter my mind concerning him.

If it were my oldest son I would have laughed and said, “Yes if you decide to one day. But not until your at least thirty. You have your whole life in front of you.”

I have always assumed that whatever he might want to pursue he will be able to do so. But I guess I don’t share this assumption when it comes to Sean. Will he find love and marry? Honestly? I can’t even imagine it. And yet, he has this thought, like anybody else. Isn’t he entitled to think it and if so, why does it hurt so much? Am I fast-tracking the rejection that he will encounter in life, the isolation that often comes with autism. And what if he has the desire to belong and to be loved but is too impaired by his disability? Then what?

I try to remind myself that if he can love his dad, his brother and me, then surely he will learn to love others and he will be loved back. Right? But sometimes my heart breaks to think of him heartbroken and alone. Autism has robbed him of so much already.

I think I still need to hold fast to this wish of my boy being happy and loved. We all face heartbreak and sadness and by suffering we learn to appreciate the good in life. I cannot protect him any better than I can protect my oldest son. All I really can do is just love my boys and hold onto hope. And for now I think that's enough.

He Shoots, He Scores!

My oldest son and I drove across the bridge connecting Washington to Oregon, the Columbia twinkling like diamonds as the last of the sun fell into the horizon. The river was flanked with trees that are changing -- the birch tree leaves have turned golden and the maples are flushed with feverish red. The early night matched my good spirits -- a shift in the air. You see, tonight I saw my oldest son score a goal in hockey. He has done this many times, but this was a first for me.

I wrote about this in a book I have been writing. A chapter, that happily, will need to be revised. Here it is:

It was hard on his brother. There was a time that Sean would hit him for no apparent reason or yell at him. We were grateful that our oldest boy was such a patient and kind little boy. He felt bad for his brother and sad that his brother didn’t always seem well. He loved Sean. When Sean would cry at night his brother would grab his pillow and sleep next to him. So many mornings I found them rolled up like crepes, together, their sweet faces touching. When Sean would yell and cry it was his brother who after looking at my tired face would go to his brother, rub his shoulders and say calmly, “It’s okay, Sean. Don’t be sad. Do you want to watch cartoons?” When I would lose my temper with Sean, his brother would look at me his eyes pleading, “Don’t Mommy. He’s just going to get more upset.” At times he understood Sean more than I did.

As our son got older, it was harder for him to get along with Sean. Sean would bother his friends when they came to the house, poking and pinching them. It was embarrassing. When I would go to my older son’s soccer games I spent the whole time keeping Sean from running onto the field. At hockey games I stayed with Sean in the parking lot or the car, the loudness of the rink too much for him.

“Did you see my goal, Mom?” he asked. His face flushed and his body overtaken by an enormous green and black hockey duffel bag.

“Sorry, bud, I didn’t see it.” I said sheepishly, grabbing his stick.

“Why not?” his smile slowly fading.

“Sean didn’t last in the rink. I had to take him outside. He was getting too loud and he kept covering his ears. Let‘s go. He‘s out in the car.”

“Oh,” he whispered, “Well anyways, it was awesome -- a one-timer shot.”

To this day I have never seen my son score a goal in hockey. He’s a heck of a player -- I know that because that’s what the coaches tell me. “Plays with so much heart.” I would do anything to see his next goal, to see him windmill his stick, skate on one foot, high-five the other players.

He took it all in stride. No complaining or whining. He understood - a boy wiser than his years. His brother spilled his paints, left the caps off of markers, tore up his baseball cards, hid the Wii controller and peed in his bed -- they were all forgivable offenses. No grudges were held. Maybe he’d be frustrated, sigh loudly but he would always end with a soft, “It’s okay, Sean.“ All was forgiven in his brother’s eyes.

And that made me feel worse. I wanted him to tell me that it wasn’t fair. That he was sick of Sean ruining everything. I wanted him to shout, “Enough already!” But he never did. He remained loyal to his little brother. He protected him and made every attempt to love him in spite of the time and attention that Sean took away from him. He would never look at it like that. In his mind, Sean had been dealt a heavy blow and it was up to the rest of us to make adjustments.

So tonight, my son and I smiled all the way home. I am so proud of the boy he is. I am so happy to be his mom. I am beyond thrilled to see him score a goal, his arms pumping over his head, his stick waving in the air.

Grandma and Papa's Boy

It is early Sunday morning and I am alone with only the sound of last night’s rain dripping from the trees and roof top. It’s cold, too, cold enough where I actually turned the heat on to 65 degrees! October 4th and the heat is on? Not how I was raised. My dad and one of my cousins would see who could hold out the longest as far as turning on the heat. We lived outside of Chicago and my cousin lived in an old restored farmhouse in northern Illinois, in the middle of the plains with only corn stalks to buffer the winds. Sometimes we made it to mid-November even December one year. My mother would command us to “put on another sweater.” Or we would crowd by the fireplace in the family room, going from flaming hot skin back to seeing our breath. In the end, my cousin or my father would break, and the heat would flow through the vents, however, our bodies seemed to be in a perpetual state of numbness. I swore that I would never be cold like that again. Then I married a man, who like my father and cousin, is no fan of turning on the heat.

So why today did I muster up the bravery to rise above hard-wiring reinforced by a husband who thinks similarly? Because he is in Chicago. And because he took Sean with him. So, I am alone with a giddy sense of freedom and even recklessness. Who knows what I will do next? Maybe watch Bravo and eat nothing but bowls of cereal the entire day.

My older son is home. He had football and hockey practices and school. I am determined to make this time with him fun and stress free. Most of his life he has had to be amazingly flexible. Plans that we make as a family sometimes never come to fruition. This is the reality in a household where there is a child with autism. How many movies have we had to leave at previews because something spooked Sean? How many restaurants have we hurried for the bill, asked our food to be wrapped and headed to the car with a screaming boy in tow? The truth is, this is my weekend to be with my oldest son, without contingency planning or nervously carrying the ripcord in damp palms.

I tried to talk with Sean on the phone last night when they arrived at my parents home. He was too excited and wouldn't come to the phone. He was with the two people, outside of his father, brother and me, that love him with such fierceness, free of conditions or judgments. If he wants to hop from one end of the library to other, than by God let him. This is how my father thinks. He is a man who said to me once,

“I don’t love Sean in spite of his autism, I love him more because of it.”

My father has a great big heart. He is a fan of the underdog, a champion of the one that others have walked away from and written off. He operates under the belief that “no child would choose to behave that way.” So when Sean shouts for no reason, or pinches a stranger or hops up and down at a store, my father doesn’t condemn him or yell at him. He redirects him by taking his hand and leading him to an area where Sean can be alone and move and feel comfortable. He recognizes that Sean is not trying to be mean or cruel or ill-behaved but that Sean is overwhelmed and scared. I find great comfort in this. He has always recognized that it is not a parenting issue and he is never once blamed my husband and me for the way Sean behaves. He only supports us with kindness and love and always offers to help us in anyway how.

My mother has Sean’s “back". She, herself, a strict disciplinarian came around quickly to the fact that this little boy was just more than determined or stubborn but something else was at hand. When Sean runs through their house, my mother’s china and crystal shaking, she says,

“It’s replaceable, Sean’s not.”

There is nothing Sean can break or bump into or knock over that my mother will ban him from the house. The keepsakes that she has brought from Ireland or given to by family are put up high (not only for Sean, but she has had eleven other grandchildren run through her home during her lifetime) and everything else is replaceable.

“Oh relax. I can get another.” she’ll say, as I hold up a broken Belek vase that Sean has knocked off of a table, his arms swinging and his feet jumping. As a mother, who is always in frantic mode around my child in other’s home, it is the one house outside of my home that has always given me an overwhelming sense of comfort and belonging.

The funny thing is, I do miss the little guy. His big eyes always reach me before the rest of his taut body catches up -- and I miss that today -- not seeing him coming around the corner. But at the same time, I know that he is in the best hands, that he is being loved and spoiled by his grandparents and that although their time with Sean is finite, the love they give him will last his lifetime. I know that when I pick them up on Tuesday, he will have missed me and I him. And we both might feel more relaxed. I know for certain I will. We do need breaks from each other. Our mother and son relationship can be exhausting. I am his soft place to land, an extension of him, really and he is my lovely boy who makes me (as well as my husband and older son and those who know and love him) better people with each passing day. This does not come easy, but anything worth having is never easy.

Send In The Clowns

I've always loved to watch my children sleeping. Their soft faces cradled underneath prayer hands, cheeks flushed and hair damp with warmth -- to me, there is nothing so beautiful as that. Sometimes, when Sean is asleep, I will lie down next to him and hold him close, my palms on his beating chest and I will try to transfer as much love as I have to his heart -- to make a connection that transcends everyday affections. A love that will wash over him, that might provide some comfort, even healing. I have always put a lot of faith in love -- and now I have to believe that it could possibly save my son from retreating further into autism.

As silly as it may sound, it’s not nearly as silly as all the promises floating out there to cure autism and to recover our children. There was a time I believed in a lot of it. I removed all the gluten and casein in his diet for 9 months. It didn’t save him. I removed soy products for 3 months. It didn’t save him. I gave him enzymes. It didn’t save him. I gave him high doses of vitamin B-12. It didn't save him. I fed him only organic. It didn't save him. So I gave up on the notion of rescuing my son from the tower of Autism -- from donning my suit of armor and lugging battle axes over my weary shoulders and I climbed off my horse and fell to my knees and refused to move one tired muscle.

Truth is, I am no longer a warrior mom and I am okay with that. I have retired -- a five star general no longer pouring over maps and planning invasions. I needed to gather my strength for things that matter. No more birthday cake made out of potato flour and rice milk (hear the chorus of Woo-hoo from my children), no more sneaking vitamins into juice and no more selling my kidney and corneas to shop at exclusive grocery markets for expensive, hard-to-find items. It was time to find out what I was good at doing. And you know what? I discovered that the simplest things, holding my son while he sleeps, whispering in his ears that his Mommy loves him and is so proud of the boy he’s become, seems to work.

Autism is not a one size fit all disorder. It’s a spectrum that presents itself very uniquely with each diagnosed child. So why should we believe that there is a blanketed cure? This may work for some children and help alleviate symptoms and I am happy for those who find relief. There's nothing wrong with giving it a try. But, unfortunately, these cures often don't work for most children with autism. Why put that perception out there, anyways? This idea that autism is “curable.” It’s counterproductive to most of us who are doing all that we can and finding that solutions are not so easy as a vitamin supplement or diet change.

It’s dangerous to push this message out there into the public. What’s not to stop people from thinking,

“Well why don’t you just cure your child?”

Wouldn’t we all if it were that easy? As a community, we already feel stigmatized. This message that as a mother we have the power to cure our children just isn't realistic nor healthy.

There is a lot of pressure to be the Mom who not only can iron her Super Mom Cape with one hand but also peel potatoes and help with homework with the other. And it’s okay to not be that mom. Heck it’s close to impossible to be that mom. It’s perfectly fine to be the mom who puts on the red nose and rainbow colored wig and acts silly and lives in the moment. I can no longer join the ranks of the warrior mother. Instead, I am a clown mother. I want to pack myself into a mini-cooper with a bunch of clown moms and head out for a night of fun. I don’t want to obsess over how to "fix" my child but instead learn to accept him for the boy he is. I don’t want to sit in a chair with a Kleenex box in my lap anymore. I’m opting for a night with friends, a pitcher of margaritas and karaoke. Life is hard. Why make it harder than it already is?

I used to laugh a lot. I used to be so much fun. I want it back. I want to be happy -- in the moment -- unafraid of what my future holds and content with the life I have led so far. So for now, no more extreme changes in diet or supplements. Happiness, love and laughter seem to be the best medicine at the moment.

One Stone in the Pond

The Balinese people do not let their babies’ feet touch the ground until 105 days have passed. During this time, they believe that babies are still pure and close to heaven and that grounding the child’s feet could leave them prone to evil spirits penetrating their bodies and souls. They perform a baptism after the three months have passed by blessing the child head to feet and letting the baby’s feet touch the earth. At this point, the baby is now born and no longer attached to heaven.

I have always had a soft spot for this belief -- the idea that babies are still secured to the heavens -- not entirely our own but a sharing between the spiritual and natural worlds. When my boys were babies they would stare intently at nothing, their eyes peaking with purposeful gaze and I often wondered if their tiny eyes were fixed on the ghosts of ancestors.

The older I get the more I am curious about my own spiritual development and what there is to learn in this lifetime. Are both my feet firmly planted into this world or could I possibly unearth myself and float freely into another realm?

Sometimes, when I am alone with my own thoughts and weighted with concerns and worries, I try to imagine that this life of mine is a starting point for something else. What that is, I’m not quite certain, but I often think that everyday I have opportunities to explore, decisions to make and I have to be aware of the implications and consequences -- how my choices affect not only my life but the lives of those who intersect mine. I want to challenge myself to think in these terms -- the ripple in the pond -- that every action has an equal and opposite reaction.

I’m not sure where I am going with this but what has me on this path is seeing a bumper sticker on a car -- a large, gas guzzling Ford F250. It read,

"Why Should I Pay For Your Health Insurance?”

I became quickly incensed. I am bothered that somebody might think this let alone shop around for a bumper sticker to declare this. Most people, like me, who have someone they love that is uninsurable aren’t looking for someone to pay for their insurance but rather compassion and understanding and options. I don’t expect anything free. Those in similar situations like me don’t either.

But those words hurt because they sounded like the shouts of a bully on a playground. “Why should I? Huh?” You know, the boy hurling the volleyball at your head or knocking you off a swing. As evolved, mature people, shouldn’t we demand more from ourselves and others -- to be more human and kind, not to behave in a perpetual state of arrested development?

We often talk about moral responsibilities and doing the right thing -- a popular chorus in politics. And yet when the rubber meets the road, some retreat and care only about how things affect them and don’t take into consideration how their actions impact others.

This truck also had a Jesus fish. Seriously, the irony there almost made me careen off the road. How on one hand can you say you’re a Christian and another place a childish taunt on your bumper -- a selfish, whiny and inaccurate holler? Why should I pay for your health insurance? Well, first, if you had been listening you’d realized that nobody is asking you to pay for my health insurance. Truth is you pay already every time an uninsured person shows up at an ER for medical treatment. If you pay taxes then your dollars go toward Medicare and state insurance programs -- which is health care. Nobody is asking this angry man in his truck to pay more -- what we want is reform -- to make insurance companies accountable and competitive and non-discriminatory and if they can’t be then they should be put out of business.

People rail about death panels -- walk a mile in my shoes and you might think that the death panels are actually the private health insurance companies who aren’t interested in health care but in profits and pleasing shareholders. An underwriter who sees Autism on my son’s application reads no further and reaches for a rubber stamp --the red inked DECLINE tattooed across the top of his application. In the eyes of private insurance companies my son has a scarlet letter sewn onto his chest -- a scar in the shape of an A = Autism = not worthy of insurance.

I am exhausted by the misinformation that is out there. When I am driving my autistic son to school and see a bumper sticker like this, I can’t help but think,

“Who will you answer to someday? How will you explain your anger? Your selfishness? Your ignorance?”

I want to stop that driver and introduce him to Sean. I want to tell him my story, that I am a mother who is trying my hardest to take care of my child -- to help him be all that he can. I want to tell him that what he so smugly sticks on his bumper affects me and others like me who want to believe that we live in a country that reaches out and pitches in and cares. I don’t want a penny from this man. What I want is something bigger than that, more valuable than coins or paper. It’s the currency of compassion and kindness and the generosity of spirit.

These Are The Days

Sean had a good first week at school. I don’t want to get too excited. He often has these “honeymoon” phases -- everything is new and fresh. But somehow, picking him up from school, his shirt collars poking near his ears, a backpack slung over his growing shoulders and his freckled arms outstretched toward me, I felt that maybe this time might be different. He seemed happy and even content -- a boy that I had not seen in a long time.

The other night I was talking to a very close person to me, filling her in the boys week at school. I told her about Sean, about how he seemed to be adjusting to his new school quite well. But then I got overwhelmed with sadness and heard my voice crack. For some reason I couldn’t help but think (and say to her),

“What if these are the best days I am going to have with Sean? What if this is as good as it gets?”

Then I sobbed. I know it is foolish to try to look into the future -- there is no glassy orb of what lies ahead. But sometimes I have these thoughts and they weigh me down -- cut me at the knees and I’m rendered completely helpless and immobile.

She reminded me that all I have is today. I have no control of the future. And yet, sometimes I forgot that raising a child with autism probably won’t get “easier”. All the work and sweat doesn’t necessary pay-off. My husband reminds me that sometimes we just get better with dealing with this disorder and managing our expectations.

There was a time that I thought Sean would outgrow a lot of his autistic tendencies. He would grow older and begin to read cues better and respond more appropriately. Life would be easier. The truth is, he has improved greatly but he continues to get older and he appears more different as each day passes.

When Sean was three or four or five others just thought he was “acting out” or “being a brat”. But now that he is eight, most people realize that there is more to it and that something is amiss. In some ways, I am glad -- so tired of the looks and comments and the eye-rolls. And in other ways, I feel a great amount of sadness as I am starting to see my son through the eyes of others.

We are so used to Sean’s quirks and behaviors that we forget how truly different he is. I sometimes see how other children look at him -- the younger ones find him fascinating, they smile at him and try to imitate. His peers and children older than him sometimes look at him oddly, strangely -- they don’t know what to make of him. Some laugh at him while others seem to avoid him completely. I don’t know if this all registers with Sean. I hope, for the most part, it doesn’t make him feel bad about himself. I don’t think it does but sometimes if I laugh at something that he says because I think he’s being funny he will stop, his eyes narrowing and say,

“Don’t laugh at me.”

I will explain that I am not laughing at him but at how clever or funny he is. Still, I don’t know if knows the difference.

My very dear friend is right -- all I have is today, the here and now and it’s futile to try to predict the future or imagine what life will be like down the road. Maybe right now are the best days with Sean. Maybe the best days are ahead. Maybe it will be much more difficult down the road and maybe it won’t. Nobody really knows. What I know for certain is that I want to savor the good moments, the bricks of the school shining in late summer heat and the smiling boy running toward me and swimming in my arms.