May 30, 2013

The Waking, Dreaming, Fear

Years ago, I would have dreams where Daniel would talk to me.  He would just ... talk.

And it was beautiful.

And in my dreams, I would think, "See, I knew you would talk some day.  I always knew."

Somewhere along the way, the dreams stopped.

I can't remember the last time I had a dream where my son talked to me.  They are distant recollections, sort of like the feeling I had after he was born: that my life was so close to perfect it seemed unfair.  Why me?  Why did I deserve such an easy road?  Why was my life so golden when the world is filled with so much that is unfair, evil and unthinkable.

I had a dream last night where I was trying to escape something dangerous.  I am not sure the dream-me even knew what it was.  But I had to get away.  I had Daniel with me, and I was trying so hard to make him understand the urgency.  I was trying to shield him, move him along quickly, and, at times, hide him.

Then I woke up.

I was struck by the irony.  The feeling of danger-- that feeling of fear -- that I had in my dream is part of my every-day.  It has to be -- because I am Daniel's mom.

I read the stories in the news of parents who have lost their children with autism.  Beautiful children -- inquisitive like all kids, even though they do not have the words to express it.  And in seconds -- the time it takes for a sibling to run from a bee, or a parent to take a bag from a car --they are gone, walking without words, and without an awareness of what might happen.  My heart aches for these parents because I know that their dreams, too, were replaced by feelings of fear -- feelings that they never let go of and then were forced to face in the worst possible way.

I never let go of my feeling of fear, and, yet, how many times has Daniel darted toward a water fountain in a crowd of people and I could not see him?  How many times do all of us take our eyes off our children, if only for seconds, and look up to not see them where we expect them to be.

Because my daughter is a "typical-kid" I live in two worlds.  I go to Girl Scout meetings and dance recitals and basketball practices with Olivia.  I listen to parents discuss things about kids, and I marvel at the inability of some parents to "get real"  --  the "problems" of which they speak wouldn't even register as a blip on my parenting radar.  They are not only insignificant in the grand scheme of life, they are frequently humorous.  These parents do not know my feeling of fear.

If I weren't such a social dynamite in great need of strong friendships, it would be enough to make me shun them all and lock my doors. Instead, I search for those parents who actually see my son, who notice his enthusiasm for life, his infectious grin and his gorgeous eye-lashes.  They are easy to identify in time.

They are the people who keep me from being consumed by my feelings of fear.

I doubt I will have any more dreams where Daniel talks to me.  It has just been so long since the last one, and other things have happened that shattered the feeling I once had of living the golden life (though I still have many reasons to be grateful).

It makes me sad, in a way, and, yet, is it not a sign that I am "getting real"?  The person I was several years ago -- the mother who cried herself to sleep, who could barely bring herself to say "the A word," who wondered how she could effectively parent a child who might never talk -- has done a lot of growing up.

I may never be able to completely let go of my feeling of fear, but I have made a place for it at the dinner table.

Hopefully, one day, my dreams will be much less about fear, and much more about a different kind of hope for my child.   In the interim, I will cling to the people who understand my fear, because they live it, and those who try to understand, because they are such darn good friends.  I will be thankful I have learned how to spot those who fall into these camps, and those who do not.  And I will try to focus on the courage of my son -- who is, by far, the bravest person I know -- when I start to feel overwhelmed by my feeling of fear.

April 18, 2013

Doing Right By Daniel

I have learned from Charlie that love doesn't always come from what you say.  It can also come from what you do.  And so we do right by Charlie.  We love Charlie strong We watch over him with the might of angels.  We have to.   

-- My Brother Charlie, by Holly Robinson Peete and Ryan Elizabeth Peete

This afternoon, I will speak to two classrooms of first-graders.  My daughter will be among these bright children, who are learning to read and write in not just one, but two languages.

I will do my best to explain to them about my son, who struggles to communicate at all.

I will try so hard to explain this mysterious beast known as autism, to help them understand that Daniel is much more like them than he is different, and to inspire them to do right by kids like Daniel.

My words to these kids is my way of doing right by Daniel, my way of trying to make up for my many failures. Because as much as I hate autism, as much as I wish my son was not affected by the disorder, it is Daniel's spirit -- his pure love for life in spite of his challenges -- that makes him the bravest person I have ever known.  

October 30, 2012

Another Shout-Out to Republican Barbie

Republican Barbie -- you know, the woman known for being caustic and abrasive while speaking in support of Republican candidates and viewpoints -- caused a stir recently when she referred to the President of the United States as "a retard."

Many people have responded to Republican Barbie. I will not pretend that my own words will come close to their eloquence.  (Here is my favorite.)  And, without a doubt, I believe Republican Barbie planned the "retard" reference days in advance -- what was disguised as an off-the-cuff attempt at humor was really one of many scripted remarks guaranteed to bring attention to a woman who must worry a bit more about her continued appeal, even to the most hateful members of her political party, with each shot of Botox.  So perhaps I only add to her smug self-satisfaction  by mentioning her at all...

But here I go ...

Republican Barbie, Ms. Let's-Convert-the-World-to-Christianity, my question for you, if God-forbid, I ever found myself in the same room with you, would be this:

Where in the Bible do you find God making jokes about persons with disabilities?

Oh, so you weren't poking fun at the disabled, you say -- just the president?

Well, where in the Bible do you find God using a term that describes a type of disability to insult/degrade/belittle ANYONE?  

After He laid hands on the sick, the lame, the blind, did He turn to his disciples and say,"Hey, guys, don't you approve of me being kind to this retard?" 

Because if He did, I somehow missed it.

I know that Republican Barbie is not worth the effort it takes to write a sentence.  She doesn't care what I, or anyone, has to say, any more than she cares about, well, anyone other than herself.  But what bothers me most about her comment -- and the ones that followed -- is that it arguably reflects the last area of broad social acceptance for hateful, discriminatory speech.

Don't get me wrong.  I was raised in Northeast Texas.  I know racial and ethnic slurs are far from a thing of the past.  People still throw derogatory words around about women, and gays and lesbians are obviously a long way from acceptance when so many people celebrate a chicken sandwich in the name of "traditional marriage."

But, geez, y'all, something is not right.

There are people -- lots of people -- who would never insult a person based on the color of their skin, their gender, or their sexual orientation, but they let the word "retard" or "retarded" fly from their lips in a hurtful manner without a second thought.

All you have to do is look at Facebook ....

How many of you have seen "the joke" shared God-only-knows-how-many-times on Facebook.  You know the one I am talking about. It has been recycled numerous times and with numerous targets.   People have used it to make fun of people with different political views, annoying habits, opposing team loyalties. And they make fun of these targets by comparing them to -- you-guessed-it -- people with mental retardation.

They start off something like this:

Voting for (that party) is like running in the Special Olympics ...

OR

Arguing with people on Facebook is like running in the Special Olympics ...

OR

Cheering for (some football team) is like running in the Special Olympics ...

And, well, surely you know the rest of the "joke."

These shared posters tick me off, and they are so much more hurtful than the garbage coming from Republican Barbie -- because they come from people who don't live their every-day by promoting hate.

So let me say something to anyone who has ever chuckled at a "retard joke", or referred to someone who was getting on their nerves as a "retard," or even referred to a differing point of view as "retarded."

It is NOT OK.

My son has autism.  He is gorgeous and energetic and loves the people in his life with the might of the angels.

His autism is, by many measures, severe.
He struggles to communicate.
He doesn't understand a lot of things about societal rules.

He also would never understand why somebody would want to make fun of another person.  He wouldn't understand why anyone would ridicule, would insult, would degrade another human being.

He simply likes people who are nice.

What a concept.

And when he likes you, he really, really likes you.

No exceptions.  No judgments.  No what-have-you-done-for-me-lately scales.

When you seek to ridicule people by calling them "retarded," you do, indeed, insult my son, and so many people like him --

people who have to work harder to accomplish things the rest of us take for granted,

people whose feelings are every bit as strong as your own,

people who would never return the insult -- because they do not see any value in seeking to hurt another person.

Where in YOUR Bible do you find God making jokes about the disabled?

And if you still believe, after taking some time to think about it, that it is OK to make jokes at the expense of persons with disabilities, then it is not my son who has the more profound problem.

(NOTE:  My reference to "Republican Barbie" is not intended as an insult to women, skinny blondes or otherwise, but is merely a nod to the notion that there must be a big blob of synthetic vinyl right where that witch's heart should be.)

August 31, 2012

Finding the Words

Nine.

Daniel is nine, as of two weeks ago, and it sounds so .... OLD.

In nine years I have gone from a new mother who believed she was blessed beyond anything anyone ever had a right to expect ... to a very different person with a much more realistic view of the world and of people.  And I have watched my son struggle, through no fault of his own.

I cannot overstate the impact of autism.

It is so much more than a "neurological disorder."  It is a force that robs, that overwhelms, that leaves you feeling woefully inadequate as a parent.

When I look at my son, I am struck by all I do not know and cannot possibly understand about what it must be like to walk in his shoes.   Autism has placed a wall before him, between us, and it is there every day -- limiting what he can share with me, restricting what I can know about him.

With my daughter, it is so different.  She fills my days with countless stories about her friends and adventures at school.  She plans her birthday months in advance; she flies through the house like a tornado -- building fairy houses and setting up hair salons, constructing forts and making Barbie clothes from Kleenex.  She asks me about the meanings of words.  What is generosity?  What is harmony?  What is chaos?

And there is her brother ... lacking the words.

Words, words, words.

It is only recently that my gorgeous nine-year-old son has even tried to say anything.

Let me say that again:

My son is NINE.  And he hasn't tried to say real words until this current year.

For so long, I have wanted to hear his voice.  And now it is as if a window has been opened just a crack.  I  have to prompt him.  "Use your words, Daniel," I say to him, like a mother might say to a toddler.  And I help him -- or at least I try -- find the words.

When he tries, he tries so hard.

In addition to autism, Daniel has apraxia.  So the oral-motor planning that most of us take for granted is a struggle for him.  But he is thinking about it ...  you can see it when he tries.  It is as if I can hear the thoughts going through his head:  stretch my mouth into a smile and tighten my jaw to make the long "e", gently purse my lips together and let out just a little air for "puh", stick that bottom lip behind my teeth for "f."

Just imagine having to stop and think about every little thing your tongue/lips/jaw have to do to make every little sound.

We go through this routine countless times, every single day.  Because if he can learn to say, "I want pasta, please" this year, then maybe ten years from now he will be able to say much more.

Though it will never be like his sister ....

There is so much I do not understand about Daniel.  I know there is no hierarchy of parental grief when children struggle, but autism is especially cruel to the children it impacts, and to their families, because it robs us of the essential foundation of human relationships -- shared communication.

And, yet, even as I confront the grief that surrounds all that has been stolen from my son -- and I confront that grief daily -- I am struck by the irony:  I know about every emotion my daughter experiences, as she fills the air with words from the moment she rises until the late hour when she, finally, gives up the battle to stay awake ... I hear about her friends and disappointments and dreams...

But Daniel is the child who can make the rest of the world go silent when he looks into my eyes.

And so we will keep trying, my son and I ...

to find the words.



March 1, 2012

What Do We Tell Those Parents....

I sat near the back of the room. The focus of the workshop was children with autism, but the audience was not "my people" -- the presentation was targeted to educators, not parents.

I listened to the speaker, a man who knew me and my son. I watched the videos he presented. And I looked at the others in attendance.

Would one of these people be working with my son one day? Did they seem to be paying attention? Were they there because they cared, or were they merely fulfilling a continuing education requirement?

My son was in pre-school at the time. Four years have passed. In that time, I have had my world turned upside down, and I have struggled to prop it part-way back up. My mind, my memory, and my will aren't what they once were. But ....

I remember one of the final questions from a teacher in the audience so clearly. It went something like this:

I see parents who feel like they must be spending every moment of the day working with their autistic child. What should we tell those parents, the ones who feel like they need to always be doing something to engage and teach their children?

I turned my eyes to the speaker. When I heard his answer, I think I may have stopped breathing for a moment.

I would tell them that they are right -- that keeping their children engaged throughout the day is the most important thing they can do for their child; that, to the extent they can, they should be finding ways to teach their child and work with their child all day long.

The teacher, God bless her, pressed a bit:

But that is so hard. These parents put so much pressure on themselves.

The speaker nodded as if he understood, and followed up with:

Yes, it is, but the nature of autism is such that these kids need somebody keeping them in this world, as much as possible, all day ...

OK, so he didn't say anything ground-breaking. He didn't advise anyone to ignore their other, neuro-typical children. He didn't tell anybody to forget they had a spouse.

But he didn't mention those people either.
Nor did he acknowledge parent-fatigue.

I sank in my chair.

I watched the people in attendance gather their things and prepare to head to their cars, and I wanted to scream:

WAIT! But wait! That answer SUCKS. Seriously, it stinks! Don't say that. Certainly don't leave it at that. No, no, no, no, NO!!!

But I didn't. I just sank in my chair. I listened to the chatter from the teachers as they left the building, and I thought about how nobody in that room that day -- no matter how much training or education they had -- could really "get it." Unless they lived with autism day to day, they could never grasp the impact of autism on parents and families.

For a time, I was one of those parents the teacher described that day. I felt like every moment that my son was with me, I needed to make sure he was learning. I knew I couldn't spend hour upon hour "teaching him." But I believed that a significant portion of every day should be devoted to me trying to improve his concentration and pre-academic skills. And the rest of the day needed to be spent doing something "normal" -- something active and fun -- ANYTHING but stimming and otherwise "being autistic."

And what did I get for those efforts?

A lot of guilt about not focusing enough on my other child. A lot of resentment from a spouse who thought I was not devoting enough attention to my marriage. One heck of a lot of exhaustion. Oh, yeah, and my son still has autism.

Do I wish I had spoken up that day. Yes, I do -- although I would have been speaking to the wrong crowd. And so I say it now, to anybody who might still -- God bless them -- be reading. To every parent of a child with autism, and most especially to those whose children are on the severe end of the spectrum --

Give yourself a break.

Don't lose yourself, and don't lose your marriage. You are a parent first: NOT an ABA-provider, NOT a special education teacher. When your efforts to teach your autistic child start to leave you frustrated - when your efforts to "modify behavior" have you displaying your own autistic-like symptoms -- it is time to stop. Don't even let it get to that point.

Autism is so incredibly hard, and it is not your job to kick its ass. You can't.

So hang up the cape. Just be a mom. OR a dad. You know -- a person who is loving your child in this world, and in his world, as much as possible, all day ...

February 22, 2012

My Not So Amazing, Amazing Race

On Sunday, I ran another race, a half-marathon. I ran in my hometown, passing the sights and landmarks from days that seem so long ago, when life was simple.

At mile 10, I passed my children.

They stood along a residential street with my parents, who got them ready and out the door in time to watch this group of half-crazy people who paid money for the privilege of climbing out of bed and running 13 miles in the early morn.

Olivia has been to a couple of my races, but just a few, and always at the end. She has seen me at the finish, but this was her first time to stand alongside the race route, and it was the first time she has been to a race event longer than a 5K.

I am always so happy to have her there. She is my greatest joy, after all--the child who fills my life with words, the one who can say, "I love you, mama," the one who provides the kind of rewards I envisioned when I imagined myself as a parent.

But it was just as important to me to have Daniel there on Sunday morning, even though his understanding of what was taking place was limited.

At mile seven, I passed the spot where I thought they were going to be. I was a bit disappointed to not see them; I wasn't sure how difficult it would be to find them somewhere else along the route. But at mile 10, even my terribly near-sighted eyes could make out the four figures in the distance--two children standing close to their grandparents, one watching each runner with an intense focus, the other holding a sucker and looking every which way.

I smiled and waved, and the cheers rang out--from the three of them who can cheer. And then there was Daniel, still looking all around, taking in the bright sun, I suppose, or the slight chill in the air ... who knows for sure.

It is a peculiar thing when you see the people you love cheering for you during a race. Your feet really do start to move faster without any conscious direction from your brain. In an instant you feel ten pounds lighter, and you just GO, even though you would like the moment to last. In a flash, your loved ones are behind you, and you wish you could still see them, still hear them. Three miles left, my body was starting to feel a bit tired, my right knee was predictably starting to twinge, and I could've used a bit more cheers, a bit more love.

But in that moment--that fleeting moment when I passed my children--I witnessed something so typical of my daughter--so amazingly, wonderfully typical of my little dancing, singing six-year-old girl.

You see, as I glanced at my family, the person I focused on--the one whose face and eyes I sought--was Daniel... Daniel, the boy who has broken so much of my heart, but never with such intention ... the child who has taught me what it truly means to be responsible for a child ... dear Daniel.

I wanted him to see me.
Would he see me?
Would he be able to focus, with all that was going on around him, with the crowd and the noise and the unfamiliar setting ...
Would autism keep him from seeing me in this moment when I wanted it so badly?

Please, let him see me .... run, run, run... Daniel! Daniel!... run, run, run ...Please let him look ... Daniel! Daniel!...run, run, run...

And there it was: my daughter being her typically amazing self.

She turned to Daniel just as soon as she saw my face.

"Daniel'" she said, pulling and tugging and tapping at his arm with one hand, while pointing at me with the other. "Daniel, THERE'S MOMMY."

She knew.
She is six years old, and she knew.
She knew how much I wanted my boy to see me, and she did everything she could to make it happen.

And he looked.
And my feet soared.

After the race, Olivia took the finisher's medal from my neck and the race-bib from my clothes, just as she always does. She once suggested that perhaps it wasn't fair, that perhaps I should give some to Daniel.

"They are for you, Olivia," I told her. "And it is OK for me to have something special that I share just with you."

Yes, it certainly is. Because my girl knows so much more than I did at her age. She knows about differences and disability. She knows about unfairness, and she knows about fear. She knows so much about her brother, and, God help her, she knows so much about me. She knows that I worry so very much about Daniel. She knows that I long for him to be happy, that I hate it when he is not, that I apologize more than I should I ever need to, to both of them, because I sometimes let frustration get the better of me.

She even knew, in that flash of a moment, how much I wanted to feel that connection to her brother.

My amazingly wonderful, typical Olivia made my race -- which was quite unremarkable by a true runner's standard -- truly incredible.
And my heart soared.

January 31, 2012

My Biggest Fear



There are so many things I have not learned how to deal with well when it comes to autism. Coping is a never-ending process, I suppose, and we all have our limitations. Mine are fairly gargantuan.

I still cringe when Daniel is having a billboard-sized autism-moment in public.

I sometimes display a total lack of patience when I am trying to get Daniel to stop the stims and participate in life the way I want him to ... the way his sister does ... the way I thought he would, too, back in the day when baby-giggles and first steps were enough to make me feel like I was the luckiest woman in the world ... in the days before autism entered stage-left and took over the show.

And I get frustrated at the end of a long day when he hollers. Screaming, you see, is one of his primary ways of getting my attention -- especially when we are in the car. He has something he wants me to know, and I should be sympathetic. If he could express his thoughts with words, after all, he would. And whatever it is, it obviously is important to him. But he can scream so loudly that one of these days, surely, I am just going to drive right off the road.

So many things I have not managed to do ...

And here is THE ONE -- the one thing I am not able to do that is of paramount significance:

I have not learned how to let go of the fear of what will happen to my son when I am six-feet-under.

I know there are so many special-needs-parents out there struggling with this fear -- this anxiety that can overwhelm you when everything is going relatively well -- emphasis on "relatively." This fear can sneak out of the dark and take you down. It is vicious; it is malicious; it is all-consuming.


I know that I can make plans for him. I can move to another state with better programs for adults with disabilities, and given that I currently live in Texas, I probably will. I can find a group home or some other living environment where I think Daniel will be safe. And even though I won't be around anymore to make sure that Daniel's days are dominated by the things that bring him the most joy, I can search for an arrangement where somebody at least promises trips to the pool, days at Six Flags, and Dairy Queen cones with chocolate coatings.

But when I am gone, will it really happen?

What will happen to this boy -- MY boy -- the baby who started moving in my belly whenever I turned on Norah Jones, the toddler who took his first steps from the couch to my extended arms, the eight-year-old who finds joy in so many things but who cries the tears that pierce my heat like arrows when he is struggling to tell me something and I just ... don't ... know ....

What will happen to Daniel when I am no longer here?

It is the fear that will haunt me, even though I have gotten fairly good at living in the here and now ... it is the fear that will haunt me until I take my very last breath.