Run, run, run!

run run runRun!  Faster!  Run until it’s better.  Run until I shed the stress and let the day, the morning, the episode, the (fill in the blank) slip off me like beads of sweat.  I run sometimes until I cry.  When I feel like screaming, I am usually quiet.  But when I run, the screams come out through my feet, straight down into the earth.  It is often the only thing that works.  At the end of the trail where I run, there is a small wooden platform.  I sit there and stretch, then I lie back and look at the trees above.  No matter what the season, the trees are always there.  They reach all the way to the sky (really, they do!) and they are constant for me, a reminder that the earth can absorb my screams, my energy will return, and I can handle the next thing in line.  I study the outlines the trees make against the sky and how the light comes through the leaves, and I feel peaceful for a moment.

Now that I am writing again, I have discovered a whole world of blogs out there by parents like me.  When I get more tech-savvy, I will post all the links for you.  They are each wondrous in their own way, sometimes raw, sometimes touching, sometimes funny.  But the thread that appears to be common is the lack of unnecessary “chit chat,” the fact that each piece written and presented appears (to me at least) to be honest, straightforward and real.  Now, maybe that’s just because parents of kids with autism don’t often have time to sweat the small stuff.  We sweat the big stuff.  And on the flip side of the coin, our gratitude and ability to count our blessings is also heightened.

Anyhow, I mention finding those blogs because I was particularly impressed by one essay by a mother

http://fiona2107.wordpress.com/2010/09/24/diving-into-murky-waters/

which talked about all of her intense feelings toward her situation.  It came with an introduction quite politely warning readers who are on the spectrum themselves to take her words gently and not to heart, for she needed to express the raw things that parents feel sometimes about their kids.  I thought it was a beautiful thing, and I applaud her for not only the honest expression, but also for her sensitivity to those who are reading.

desiderataI have been thinking a lot lately about what I want to share with my daughter about coping with life.  I cannot promise her that she will not encounter hardship, that someone will not try to hurt her, or that there will not be tragedy, sadness or unexpected challenges in her future.  I used to think there were certain givens in life, that as unpredictable as it may be, there were some things I could anticipate and count on. 

Alex’s diagnosis changed all that. … And so I cannot promise my little girl that she will not one day have a healthy, typical child, who all-at-once slips away from her behind a curtain, taking her on a quest into the unknown to get him back…

There you have all I cannot promise, so the questions then become “What can I promise Hannah about how her life can be?  What skills will she need to cope with whatever life hands her?  And what might I have been missing before I had her older brother and got thrown into the sea of chaos that eventually led to my finding the life rafts I need?”

Hannah will obviously live her own life, make her own choices, and need to learn through her own experience.  I realize I could talk until I am blue in the face about “smart things to do” and it would not really make much of a difference, for it’s not the words I say but the example I set for her in my own life.

So far, here’s my short list of key ingredients for a healthy woman:

• Self-awareness.  Knowing her body, feeling good living there.  The ability to go inside herself to a calm place at her center.  Mindfulness.

• Strength.  To trust her instincts.  To tune the rest of the world out when the shouts and screams from others seem to demand every ounce of attention.  The strength to pause, to consult with herself, and to move from there.  My mother used to say “Don’t panic.” I say, “Stay calm.”

• Critical thinking.  The ability to think creatively to find solutions.  The underlying belief that for every challenge, there is a win-win-win solution and she can find it.  Even if that win-win-win means thanking God the day is finally over and knowing that she can rest for a bit before she has to go back to the battle zone.

• Faith.  When all else fails, I want my little girl to believe there is something larger than herself watching over her.  I want her to feel that she can cry out to the Universe and it will hear and respond.  I want her to know without a doubt that life continues on forever and she is part of that never-ending cycle, and as such she matters.  She is a “child of the universe, no less than the trees and the stars; she has a right to be here. And whether or not it is clear to her or anyone else, no doubt the universe is unfolding as it should.”

Tigger takes a swim.

(My first teacher tribute…)

alex and tigger in slideWhen Alex was a baby, he received a stuffed Tigger toy which became his favorite thing ever.  He would take it everywhere with him, to school, to sleep, to the park, to the tub…  Anywhere he went, Tigger went too.  Alex’s dad always said “You’re a good friend to that Tigger.  He may not be able to talk or tell you what he wants, but you take him everywhere and include him, and that’s what good friends do.”

alex and tigger in the kitchenJust before Alex began kindergarten, poor tattered Tigger was so worn out that I scoured ebay to find another.  Somehow, I had missed that new parent rule that says buy two of the “lovie” and interchange them periodically so they both get the same wear & tear but you always have a spare in case one gets lost.  Luckily, I did find another exact match and we presented both to Alex on his 6th birthday.  I put them together in a basket on the birthday table and said “Look!  Tigger has a friend.”  Alex looked them both over and smiled big, but then didn’t pay them too much more attention.  The next time Alex left the room, I offered him his Tigger to take along, but he politely put him back in the basket.  Since Tigger now had a friend, Alex was confident Tigger would be okay and could handle life on his own.

Tigger was Alex’s best buddy.  And what was important to Alex was also important to his home ABA teacher Steph.  Steph remembered Tigger when he strayed from sight, she helped me fix Tigger when he got ripped, she cleaned him up countless times so Alex could snuggle with him each night.  And one very memorable day, Steph rescued Tigger from his biggest adventure. 

alex and tigger and pumpkinsA natural athlete, Steph had energy enough to chase my boy around school, around home, around the neighborhood.  I learned last summer that Alex is what is affectionately referred to as “a runner” in special needs teacher circles.  And yes, that means exactly what you think.  When we dropped Alex off at his first overnight camp, we were greeted by a very enthusiastic young counselor named Megan who promptly bonded with Alex and away they went.  When we came back a week later to pick him up, a different but equally enthusiastic counselor greeted us.  “Where’s Megan?” I asked.  With a big grin and a perky, matter-of-fact sweetness to her voice, the new counselor said, “Oh, she had a runner last week and she was a little tired.  So we switched.”  Now picture a mischievous, thrill-seeking, mostly non-verbal kid who is “a runner” and then try to imagine what kind of teacher could keep up with him.  Yup, Steph was pretty amazing.

One afternoon, Steph and Alex trekked down to the local park with Tigger to run around the jungle gym and play on the banks of the stream.  Alex liked to throw rocks in the water and watch the ripples.  It was a pretty routine day, with one exception.  When Steph and Alex came back from the park, Alex was his usual dirt-covered energetic self, but Steph and Tigger were both soaking wet.  Steph grinned as she explained, “Tigger decided to take a swim- and so did I!”

alex and tigger grinThe mental image of Alex gleefully hurling Tigger through the air to see where he would land made me laugh out loud.  I could almost hear the splash.  But after I laughed, the reality of the story hit me and I almost cried.  Steph had dived right into that stream– that cold, muddy, is-this-really-a-good-idea? stream– to save my son’s “lovie” and it nearly brought tears to my eyes. 

When I think about the many teachers Alex has had, and how several of them have become part of our family, this story always comes to mind.  To believe in my child, to be right there in his world, to respect his ideas even when he can’t say them with words, to be a steadfast friend to someone so many people don’t understand, to persistently work to put the puzzle pieces together to know what is important to him and to protect it– to rescue Tigger!!– well, that in my book is the ultimate gift of dedication. 

Thank you Steph for all of that, I will always be grateful for you.  xoxo

Music is a language all its own.

From the time he was in the womb, my son was an extremely musical child.  He responded to music with passion and excitement.  When I was eight months pregnant with him, I attended an orchestra concert at the Academy of Music in Philadelphia with my mom.  It was my mother’s gift to me; she wanted to take her unborn grandchild to his first concert.  Alex was the first grandkid on both sides of the family and we were privileged to enjoy many treats such as this, even from the time of his conception.

Hilary HahnThe concert that night was a collection of works by young artists and composers.  Alex was mostly still during the evening, with the notable exception of rolling and kicking playfully during an especially beautiful violin concerto performed by Hilary Hahn.  His kicking seemed to be so pronounced and deliberate during that part of the performance that after the concert I immediately purchased two of Miss Hahn’s CDs.  We waited in line to get the CDs autographed and Miss Hahn signed them “To Baby K, Congrats on your first orchestra concert!”  I told her that my baby had really enjoyed her music—even in utero! 

After Alex was born, I continued to play many different kinds of music for him.  But still, he particularly preferred Hilary Hahn.  When he was several months old I sent a note to Miss Hahn which included a picture of Alex playing with his first musical toy.  Several years later, I had the good fortune to be able to tell her, while she signed another CD for Alex’s soon-to-be-born little sister, the story below about one of our most significant early experiences with music and communication.  Her comment was, “Music is really a language all its own.”  Here’s the story:

The very first conversation I ever had with my son was a piece of music.  As a baby, Alex had a toy frog that played lullabies at night.  Most of them were pieces of classical music, Mozart sonatas I think.  Alex and I would listen to them every night as I cuddled him on the makeshift futon on the floor of his room.  He would snuggle up with me and fall asleep blissfully.

One weekend we were visiting my mother at the Jersey shore.  After a day at the beach and a nice home-cooked dinner, Alex and I went upstairs to the guest room.  We had forgotten to bring the toy frog that was such an integral part of our bedtime routine.  So I did the next best thing.  I improvised.  A talented singer I am not, but after 18 months of Music Together classes, I knew that the most important thing to my child was the sound of my voice and my own “mommy music,” no matter what key it was in or out of.  I began to softly hum one of our favorite tunes. 

At first Alex just snuggled and listened.  But then I heard him begin to hum very faintly.  Encouraged, I continued on, humming the same song over and over.  After a few minutes Alex was humming along with me, in perfect rhythm, repeating the same tune.  It was the most amazing duet I had ever heard, let alone participated in.  My son, who had never spoken a word, never said “I love you” or “pick me up” or “want cookie” was fully engaged in a musical conversation with me.  That was the moment that I knew that there was an entire world of communication going on inside Alex’s mind, the trick would just be how to get it out.

Mothering autistic prodigy invokes astonishing endurance.

My life story in six words.  Do you drink Honest Tea?  Check under the cap.  Their most recent quotes are six word memoirs, inspired by Ernest Hemingway’s “six word novel,” and collected by SMITH magazine. (www.honesttea.com/6word)

Mothering.

I thought a lot about this one.  In addition to being a mother, I’m also a sister, daughter, friend, confidante, counselor, helper, partner, advocate… and sometimes whiner, pit-bull, fighter, and downright stubborn p.i.t.a.   But when it comes to my life story, well, mother is defining.  No other role has changed me quite as much, or been more challenging or rewarding.  When Alex was born, I didn’t have that instant bonding moment I had heard about.  I would come to know that feeling nearly 5 years later when I had Hannah through natural childbirth.  With Alex, at first everything was fuzzy from the IV drugs and epidural and whirlwind experience of labor and delivery.  My “moment” came hours after childbirth when I sat nursing my newborn son in the hospital room.  I looked at him, my heart melted and the strangest words came out of my mouth:  “I was born to be your mother.”  Mothering defines me not because it is all of who I am, but because becoming a mother, bringing life into the world, forever linked me with another soul for whom I am responsible.  The fact that I am “mother” is the most important part of my children’s lives.  And so begins my life story.

Autistic.

I hate that word.  I admit it.  Whenever possible I use “person with autism.”  I talk about autism as one aspect of my son’s life, not the only aspect, because I don’t want the world to view him through one narrow lens.  I want people to look beyond what their expectations of an “autistic” person might be, and see the amazing individual that is my pride and joy.  That being said, I know there are many people across the autism spectrum who say “autistic” is who they are, part of their being, just like any other characteristic could be “defining” for another person.  Do I think there’s a politically correct term to use?  No.  Words are not as important as openness and tolerance and acceptance.  And in this case, I deliberately chose the word autistic because despite his individual quirky personality, his great sense of humor, his engineering ability, his sensitivity to others- and all those special things that make him Alex- were it not for the autistic part, my six word memoir would be vastly different.  Mothering autistic Alex has shaped my life in a much more profound way than just plain “mothering.”

Prodigy.

A tribute.  And hey, I’m allowed!  He may lack the language to express to the world in words all that he understands, but believe me, it’s in there.  I spent years listening to “experts” say there was no way to know the level of his cognitive ability without some sort of language-based assessment.  Okay, whatever.  I have always known what his cognitive ability is, I know what he’s capable of learning and achieving.  Again, back to word one- because I’m the mother, that’s why!

Invokes.

To cause, call forth, to bring about.  There’s also some part of that word that’s spiritual (“to invoke God’s mercy”) and binding (“to invoke the law”).  Mothering Alex has not only defined me in a new way, at times it has called forth an entirely new woman, a witness to miracles, a stronger person than I believed I could be.  I never knew real courage until I had to take the risk to shut out the rest of the world and follow my gut instincts on how to help my child.  Until I had Alex, I didn’t know exactly what was in me to be called forth.  I am grateful for having the opportunity to find out. 

Astonishing Endurance.

By the time I got to this point in the sentence, I was pretty confident I had it right.  Mothering was key, autistic prodigy fit, and certainly those three words together invoke something pretty powerful for me.  But what exactly?  When I look at my life these past seven years since Alex was diagnosed, I see many ways the struggles and challenges have shaped the person I am.  But the things I’ve learned and the ways I’ve grown in themselves aren’t pivotal enough to make the memoir.  What strikes me as most profound is the fact that my life with Alex will continue forever.  As long as I am alive, I will be this mother to my autistic son.  Of course, I’ll be a mother to my typical daughter, too.  But my relationship with her will grow and change and evolve.  There is something about my role in Alex’s life that will remain constant, will always require faith and perseverance and a deeper understanding of myself and the world.  So far I can attest to the fact that traveling this path definitely takes endurance, quite an astonishing amount of it.

going back to the beginning…

I’m excited to write and see where this all goes, and I have lots of new things to share.  But my computer is already overflowing with bits and pieces of the book I started six years ago about our autism journey (which if ever published will be titled “Raising A-L-E-X”).   

In order to keep myself from obsessing over the organization of this new blog thingy, I’m going to keep it simple and go back to the beginning.  Here’s the first story I wrote about learning to reach my son after his diagnosis.  Hope you enjoy.

Sabine’s Lesson

When Alex was first exhibiting signs of autism and apraxia, continuing with our normal routines was often challenging and depressing.  The child who used to laugh and jump around with his buddies was now becoming more and more withdrawn, anxious and over-sensitive.  Going on play dates, even with close friends, was sometimes excruciatingly hard on me emotionally.  I would try my best to be patient and help Alex hand-over-hand interact and play with his friends.  It was not always possible for me to keep a positive outlook, however, and the more anxious I was about Alex’s behavior, the more his sensitive mind picked up on my feelings and the worse things got.

One day when we were visiting my friend Rose and her daughter Sabine, I learned an important lesson about true friendship, trust and acceptance.  Two year old Sabine taught me the meaning of unconditional love and belief that day.  Her example gave me a model for helping Alex for the rest of that summer and into the early years of his therapy.  Here is the story of Sabine’s lesson:

Alex was anxious when we arrived at Sabine’s home.  He was suddenly extremely afraid of the loud noises her parakeet made and did not want to come into the house, even though he had never been hypersensitive to these noises before.  It was a struggle to get him in the front door, despite the fact that Alex and Sabine had been friends for over a year and played together often.  Next it was a struggle to get him to interact, to eat snack, to have a “normal” play date.   I had not yet gotten to the point of accepting his quirkiness because he was becoming such a puzzle to me that at times I honestly didn’t know who he was anymore.  I yearned for normal and typical, every night I begged God for a return to the life I knew and was confident in.  I felt I had no resources to deal with these sudden, disturbing changes.

Now standing in Rose’s house, I was on the verge of tears, feeling depleted and exasperated as I tried to get Alex to come out from under her kitchen table.  Sabine kept walking back and forth between the living room and the table, bringing Alex toys and cookies, even trying to get him to eat small bites of snack, which he was refusing.  Sabine was holding cookies up to his mouth, and putting small trinkets in his hands.  Alex was not making eye contact, was tense and frozen, occasionally whimpering a little like he needed to be rescued from something scary and dangerous.  Rose was telling me it was okay, not to worry, kids were kids and sometimes they acted funny.  But I knew that something was seriously wrong here and I was worried and out of my element.  I felt powerless to help and was becoming more anxious by the minute.  I didn’t know how to reach my child behind the autistic wall in his mind.  For that matter, I didn’t even know how to get him out from under the table, as he was squirming away from me and pulling back with all his weight whenever I tried to pick him up.

Then Sabine did something so simple and extraordinary that I will never forget it.  After waiting at the edge of the countertop for the better part of half an hour for Alex to come out, after trying to entice him with toys and food, she simply decided she wanted to be with him more than she wanted to play alone.   She asked her mother to move one chair out for her so she could get in beside Alex.  She crawled in and asked Rose to move the chair back in front of her, positioning herself just as Alex was positioned next to her.  Then she reached out and took his hand.

Although Alex did not smile or look at her at the time, he did not pull away either.  He just stood there holding Sabine’s hand.  Tears came to my eyes as I watched this beautiful, caring little girl try her best to step into my son’s strange world.  What she did next gave me more hope than all the expert advice I had received over the months before.  Sabine, a typical two year old, just got tired of standing under the table.  She decided that she was going to play in the living room and that Alex was going to come with her.  Alex was her friend and she would show him how.  She was confident that he would play because she knew that somewhere inside, he wanted to play and he loved her too.

Very carefully, Sabine stepped out from under the table.  Then she took Alex’s two hands in hers.  “Come here, Alex,” she said gently.  Walking backwards from the kitchen toward the living room, she led Alex out from under the table.  He did not pull away from her, he did not start to cry.  He was a little bigger than she was at the time, and could easily have escaped her grasp.  But he didn’t squirm.  He didn’t want to.  He wanted to be led, he wanted someone to show him how, and he trusted Sabine.  Alex let Sabine lead him into the living room to join her in a game of ring-around-the-rosy.   He had no words at the time to express his gratitude, but he smiled at her and these two tiny kids shared a moment of true friendship.

What I learned from Sabine that day was that in order to help my son, I needed to love and accept him unconditionally.  I needed to always begin where he was and trust that he did not want to be locked under the table or inside his anxiety or behind the curtain in his mind.  Sabine showed me that if I trusted my instincts and was very patient and persistent, I could enter Alex’s world and find ways to bring him into mine.  When he trusted me and felt safe, he would let me lead him by the hand into a happier place of shared experience.  From there I could reach him and only then could I help him.