Category Archives: Inspiration

Why I Believe in God (The Non-Sanctimonious Reason)

A few weeks ago, a dear atheist friend of mine asked me why I believe in God.  Not in that “Religion is so stupid and therefore so are you” kind of way.  But honest curiosity.  She finds me to be a rational, non-superstitious, and free-thinker type and simply wondered what my personal reasons are for a belief in God.  I gave her a few of my reasons, but I have been thinking about it a lot lately.  And I’ve been asking myself what is my proof.

I wish I could say that I have always been a religious 100 percenter. You know, one of those people who is fortunate to have never doubted.  I have always said I believed, but knew I had paralyzing suspicions that our time on Earth is what it is – just time on Earth.  Just here, then not.  I was reasonably certain of my faith.  But “reasonably certain” is enough to make you feel like a hypocrite standing in church.  “Reasonably certain” is enough to make you forget to pray.  “Reasonably certain” is enough to keep you staring in the darkness at 3 a.m., trapped in the witching hours fear and worry.

I remember the day my autistic son first  flapped.  (Arm flapping is a common behavioral indicator of autism.) And it wasn’t the excited flapping that just about every toddler does when excited.  You see, I knew the difference.  Unless you have seen autistic flapping before, you won’t know.  But once you have, you just recognize it.  It even has a sound.  It reminds me a little of the sound of a bird I once spent a cool fall morning with in the mountains.  It was so quiet sitting on the deck of the rental cabin that I could actually hear its wings flapping.  One of those moments forever etched in your mind.  So was this.  The house was quiet, and I watched his little arms flap away.  And I knew.  I mean knew.  For I’d seen it before.

I woke up at 2 a.m. and couldn’t go back to sleep.  That witching hour of the mind and heart, when all your mental defenses are down, and suddenly – by yourself with no one to sugarcoat it – you gain clarity.  The kind of clarity that you can’t think about anything else.  The kind that shakes you to your soul and reveals to you your true self.  And I crossed my arms tightly, and began to rock and repeat, “Please, no. Please not my baby.  Not autism.  Please anything but this for my baby.  Please not my child.”

I am not a crier.  I rarely well up at funerals.  I cried after the death of my grandmother.  And I cried all during the last five days of my stepmother’s life.  But it takes a lot.  And, lying there awake in the middle of the night beside my sleeping husband, I began to bawl.  There were no distractors from my fears, and it all came out.  And I can tell you that in the darkest moment of my life, of any human being’s life – fear for your child – that without realizing it, I dropped any traces of doubt as I begged.  I mean really, really begged.

I had begged God for the attention of some teenage boy in my girlhood. I had begged God for a job offer. But you haven’t begged until you have begged for the life of your child.  No, I wasn’t begging for his literal life.  But most of the autistic children I had seen were  never going to achieve self-sufficiency.  At that time, I didn’t see this as any kind of life at all.  I see it differently now, but not in that dark hour of grief.

I begged God.  And then I stopped and took a deep breath and went to the sink and washed my face.  (My eyes were so swollen the next day that I had to tell the people looking at me strangely that I had a sinus infection.)  That was the night that I acknowledged the death of a carefree childhood and accepted the tough years that were coming to us.  Of course I had heard of people who functioned beautifully in a great environment and who went on to college and family life.  But I also knew the statistics.  50% don’t speak.  Some cannot communicate their own basic needs. 80% will remain in their parents’ homes in adulthood.  Pardon me for saying so.  But those odds suck.

I realize that was the moment I was no longer agnostic.  I believed –because of science.  Because nature is science.  Instincts are a part of nature.  And those instincts serve a purpose.  Instincts kick in during moments of fear. And my instincts reached out — toward God. I have strong respect for our animal instincts.  Since human beings are animals, we, too, have instincts that, like animals, can save us in times of trouble and danger.  We, too, follow Mother Nature. So why would nature push me toward a God that wasn’t there?  In an odd way, it is because of science that I believe in God.  A roundabout way to get there if there ever was one.

My faith is not the kind of faith that makes me quote scripture at people I judge to be unworthy of salvation.  For I am not convinced that any man’s version of God is flawless.  I just know that I believe in Him and that belief gives me comfort and peace.  I don’t think my atheist friends are evil, and I hope they don’t think I’m stupid.  And I don’t believe that they and others like them are all conspiring to divest me of my own beliefs.  Instead, I’m fortunate to have some very cool friends on both ends of the religious faith spectrum, so I’m blessed indeed.

So, my very dear atheist friend – you asked me why.  And there it is.  I believe that the need for a higher love and the search for immortality is instinctive – a God Instinct, if you will.  And since instincts are natural, then I believe God to be natural as well.  I also happen to think He gets a bad rap from some of his followers, so I won’t ever blame you for not wanting to join them.  You think there is no Heaven.  And I think you are such a wonderful person that one day we’ll together discuss your astonishment at being in Heaven after all.  Yet, I don’t think either one of these beliefs must negate our friendship.

I have said many times that autism is a thief.  Yet it is a thief that sometimes leaves behind unusual and surprising gifts.

For me, faith is one of them.

P.S.   Please.  No fire and brimstone comments here today.   You may mean well, but this isn’t the place.  It’s an autism blog.  And all of my readers are welcome and loved here.  :)

So, what unusual or surprising gifts has autism give to you? 

So You’re Wondering If Your Child Might Be Autistic…

So you’re wondering if your child might be autistic.  I know.  I’ve been where you are sitting right now.  Searching the internet for signs of autism spectrum disorders.  Going back up to the search bar to enter a different set of keywords, hoping to find some other site that will assure you that these strange behaviors your child has been evidencing are perfectly normal.  Telling yourself he is just a little behind.  Sharing your worries with a friend or family member, calming down for a day or two after being reassured by them that, no, it isn’t autism.  And now you are wondering if you are just being paranoid.  You’re worried that you might be borrowing trouble that you don’t need and possibly stigmatizing your child with a label that will follow him around for life.  Yep, I’ve been there – and quite recently.

What does autism look like in a young child?  Well, the important thing to remember is that, just like everyone else on the planet, every autistic child is a unique person.  There are common behaviors that they share, but a child can still be autistic and not share every common autistic behavior.  Remember that.  Because getting hung up on that can make you fool yourself.  Autism spectrum behaviors do not exist in isolation.  Just one of them won’t make a child autistic.  But you put several of them together and you’re possibly looking at an autism spectrum disorder of some kind.

The one that seems to be noticed first amongst the greatest number of parents is a concern that your child might have a hearing problem.  I honestly don’t know anyone with an autistic child who hasn’t worried about this.  I’m sure there probably are some.  I’m just trying to tell you that a concern about a hearing problem is really common.  You might notice that, despite calling your child’s name repeatedly, that he doesn’t respond.

You might also worry that he has some kind of persistent ear infection.  Why?  Because you might have noticed your child repeatedly covering his ears.  Especially if it is noisy or chaotic.  You have probably taken him to the doctor, only to be told there is no infection – perhaps more than once.

You may notice that your child doesn’t seem to know how to play with toys correctly.  Instead of rolling his little truck around (or kissing her baby doll), he just sits and repeatedly spins the wheels.  Or bangs the baby doll, over and over and over.  And over some more.  He might fixate on a toy that isn’t a toy – such as a plastic hanger, a spoon or a string, or a button on your shirt.  You’ll try to interest him in something else, and he’ll drop it and go right back to the non-toy.

You probably bought him a lovey of some sort.  You may notice that your child doesn’t have an attachment to any sort of stuffed animal or blankie.  Instead, he just might carry around that plastic hanger everywhere he goes.

He probably at one point was a good eater for you.  But suddenly, you may start worrying about all the foods he will no longer eat.  He may have once loved bananas, but now won’t touch them.  He might begin to refuse everything but dry foods like crackers or chicken nuggets.  He may consent to eat only one food period.  And withholding food a little longer to make him hungry won’t work.  He’ll just cry and stay hungry until he gets the only foods he will eat.

Your child may not show affection in the same way as other children.  You might find him squirming away or resisting being cuddled.  Or you may find the opposite.  He may have strange ways of loving all over you, rubbing his arms and legs all over you, maybe even strangely wanting to run his mouth all over your arm.  His odd ways of handling touch may also include an aversion to touching things that are wet, or gooey, or crumbly.  Or you may find him smeared all over with anything spreadable he can get his hands on, rubbing it in over and over again.

You may have noticed that your child does not point to what he wants.  This is a big red flag.  He also may not ever bring anything to your attention, like a toy or the stars.  In fact, you have may have noticed that he doesn’t attempt to share your attention, like turning to see if you saw Elmo do that silly thing.  And, if you try to point something out to him, his eyes might not follow the direction in which you are looking and pointing.

You might be losing a lot more sleep than you did with your first child or what your loved ones told you was typical.  He might not have ever settled into a sleeping pattern and may continue to wake you repeatedly each night.

The thing that might be worrying you the most is that he either isn’t talking or that he stopped saying the words he used to use.  He might not be saying single words such as mama, daddy, ball, juice, etc. by 18 months.  Even more disturbing is that he might not try to communicate with you in other ways, such as taking your hand and leading you to what he wants.  He might be delayed in other ways as well, such as crawling, walking, using a spoon, etc.  When he does walk, you may notice that he prefers walking on his tiptoes.

And, you just might have noticed something strange he is doing with his arms.  It looks a little like that hand flapping that people do when they bite into something that is way too hot.  Except he does it a lot.  Especially if the TV is on.  He may just flap away.  And stop.  And then flap again.  And maybe moan or grunt in his excitement.  (Please don’t try to stop him from his flapping.  If he isn’t autistic, he’ll stop one day.  If he is, you are trying to stop a mockingbird from singing.  It is simply how he expresses his excitement.  You’ll get used to it, don’t worry.  Flappiness?  It just is.)

So now the Theme to Jaws is playing in your head.  And you are asking yourself, “What do I do?  Should I call my doctor?  What if he doesn’t have autism?  What if everybody finds out and treats him differently?”

Here’s what you should do.

Call his doctor.  Explain to his doctor each and every one of the symptoms your child has.  If your doctor waves away your worries and says, “Let’s wait a little longer and see”?  Either convince her, insist, or see another doctor.  Even very good doctors may not recognize some of the signs.

Get an autism screening.  I’ll repeat that.  Get an autism screening*.  Even if your child were falsely diagnosed with autism-even if he is simply a late bloomer- it won’t make him autistic.  He’d simply continue to thrive, and you could throw that diagnosis in the trash.  Or get him undiagnosed.  A false diagnosis is not the worse thing that could happen.  The worst thing that could happen is that your child is autistic and would miss out on years of beneficial therapy.  The worst thing that could happen is that dark regret that would haunt you years from now that you didn’t trust your gut.  There are a lot of special needs parents out there who can tell you about that.  Don’t let that be you.

And if he is autistic or has Asperger’s?  You know what?  You’re gonna be okay.  Yes, I’m talking to you.  Don’t believe all that foolishness about it taking a special person to raise a special needs child.  It doesn’t.  It is the child who makes you special.  Really.

You are going to grieve.  You are going to grieve for things you took for granted that may not come to pass.  He might not ever play Little League, be a Boy Scout, or skateboard.  Then again, he might.  The not knowing is the hardest part.  Hope is a roller coaster.  You will need to remember that your child has not been taken from you.  This is the child you were given all along.  And no one, no one, is better suited to be his champion.  You are allowed to cry.  Try not to do it in front of him.  And then you are going to have to put on your proverbial Big Girl (or Boy) Panties.  Suck it up.  You already knew you’d walk through fire for him.  So suit up.

And I’ll tell you something else.  Autism, at its worst, can rob you of a lot of things.  But it doesn’t have to be a tragedy.  It’s still early.  Autistic children may not ever learn to talk or care for themselves.  But they will still give you joy and teach you many things about love and gratitude.  Autistic children may grow up to need support, but have happy, productive, and fulfilling lives.  Some autistic children may go on to great things, their minds uniquely suited to bring something to humanity that it hasn’t seen before.   You know about Einstein, Mozart, Andy Warhol, Temple Grandin, Dan Aykroyd, and other successful people across the autism spectrum don’t you?  Yep, they are or are suspected to be [have been} on it.  But there are a lot more people out there on the spectrum who are co-workers, friends, parents — just everyday folks who see the world from a different vantage point– than you might expect.

Then, with diagnosis in hand and therapies started, reach out.  Join a support group.  Read books.  Write a blog.  Advocate.  Join the online autism spectrum community – made up of ASD people, their friends and loved ones, doctors, therapists, teachers, and more.  They are an amazing group of people whose arms are open to you.  (I just made that discovery myself.)  And repeat to yourself:  I can do this.  This is not a tragedy.  And I am not alone.  

For you really are not alone.

Note:  Little girls can, of course, be autistic as well.  For the sake of brevity, I used a male pronoun.

*The autism screening test for toddlers is called an M-CHAT, and it’s free.  You can even print it off the internet.  Either way, your doctor will know about it.

Love Life, Be Brave.

I’m learning more than I ever wanted to know these days.  Lessons about isolation, humility, frustration, real fear, unconditional love, what’s important, patience, gratitude, and so very much more.  But what I have really learned the most about is friendship.  Friendship takes on a whole different meaning when your life is affected by ASD – or any crisis or special-needs issue that affects your child.  For, no matter how much your friends love you, there are some things in life that you cannot possibly understand until you have experienced them.  Please do not misunderstand me.  I have dear, dear friends who have kept me sane throughout the last year of panic, paralyzing fear, occasional depression, sometimes regression, moments of joy, and my inevitable obsession with learning more about my child’s condition.  (It’s even worse when you are a librarian.  lol)  They have tolerated me obsessing, repeating myself, forgetting to ask about their lives, and every other way I have slacked off in the friendship department over the past year.  (You guys know who you are, and I love you.)

But there is a part of my heart now that even they do not have access to – that part that toddles around, smiling and flapping away, still happily oblivious to the difficulties facing him.  That part of me is only accessible to those who know.  That kind of friendship and sisterhood/brotherhood is intimate indeed.

I have such a friend.  Her name is Christy and, though neither of us ever dreamed years ago we would find ourselves on a similar path, she is now the reason I believe in destiny – that certain people are simply meant to find one another.  I believe that we both endured a summer of algebraic torture in college simply because the two little souls who were destined to affect our lives would one day be arriving.

Christy has been on this road for longer than me.  Her journey raising a special-needs child began in 2001, with a CMV affected child.  (Read her story.)  And, though we were friends, I didn’t truly understand her pain and isolation.  It wasn’t until last year that our friendship took on new meaning for us both.  When I began to face that Callum was on the spectrum, I reached out to her.  I sent her a message apologizing to her for all of the missed opportunities  to help her and for all of the times I could have been there more.  But , she already knew more than me and wisely informed me that I couldn’t possibly have known.  She, with open arms, welcomed me to a club you don’t imagine yourself joining.

And she gave me a gift.  A gift that I explain each and every time someone asks me about it.  A gift that makes me cry again just writing about it.  She pulled out of her purse a small box.  In it, was a silver ring.  It said, “Love Life”, and on the inside, “Be Brave”.

And then she stunned me.  She told me that she had a matching ring.  For, years earlier, she had seen the ring and knew, simply knew, that one day she would need to give it to someone else.   She didn’t know who, but she had kept it for years – until I emerged as the person who needed it.  I now wear that ring every day.  It has become as valuable to me as my wedding band.  It has become my mantra on hard days and my joy on the good ones.

Over the past few days, my readers have also taught me much about friendship and destiny.  To each and every one of you who have reached out via Twitter, Facebook, Email, and this blog, thank you from the very bottom of my heart.  All of you have also been placed squarely on my path in this new journey.  Your words and support are no accident; they are destiny.  Thank you for the open arms into which you have also welcomed me into The Club.   All of you have reassured me that it’s gonna be okay.

Thank you to my dear friend Christy and all of my new dear friends in the blogosphere.  You are all my heroes.

Love life.  Be brave.

Diplomats from Planet Autism

One of the things that I’ve noticed about published high-functioning people with autism is how uniquely insightful they can be about the rest of us – the neurotypicals comprising most of humanity.  Folks like Temple Grandin and Sean Barron have written not only about autistic people and how they see the world, but also have provided an objective analysis of the rest of us.  Some of their observations about how typical people socialize and view the planet are, at times, both fascinating and disconcerting in their honesty.

This morning, I watched a young man named Alexander explain what autism means to him (on thAutcast).  It’s funny, insightful, and inspiring.  In it, he methodically and endearingly presents his situation.  He says that sometimes people with autism can feel like aliens from another planet trying to interact with human kind.  (Which brings to mind Mae Swenson’s poem Southbound on the Freeway.)  Considering how odd human beings really are, I can see why he might feel that way.

I loved Alexander and his perspective.  And, when I look at him, it gives me hope for my son’s future.  No, I don’t think that my son must become verbal to be happy.  But I do so wish for him that he is able to communicate to others who is is, how he sees the world, and inspires others to want to be his friend.  For Alexander strikes me as someone I would want to have as a friend.  I want Callum to be appreciated and valued for Callum, not merely defined by his autism.  I want him to enjoy his uniqueness and be proud of the person he is.

So I’d like to give a big shout out to diplomats like Grandin, Barron, and Alexander.  They come bearing friendship and gifts from their world and seek to make the connection to ours.  They educate, de-stigmatize, and encourage us to realize that autistic people – like everyone else- have great things to offer those of us willing to accept them.  Thank you.