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.

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 ...

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.

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.

Raindrops Keep Falling on My Nikes

When I was a kid, I loved music and I loved to dance. But I hated P.E.

So I was thankful when junior high came around and I could replace P.E. with band.

No more running in front of peers.
No more feeling slow and awkward.
Yipee.

Last Sunday, I ran my third half-marathon.
The temperature was around 39 degrees.
And it was RAINING.

I finished in two hours and 46 seconds -- a personal best.
I finished 165 out of 981 in my age division.

Five years ago, I never would have thought of running a half-marathon. Maybe a 5K. But a half? In a cold rain? No way. I am too slow, too big, too clumsy ....

And then came autism. The kind of autism I could no longer deny.
With it came personal disappointments galore. Another child with a birth defect, a marriage in trouble, fear, stress, loneliness ... sadness.

If I hadn't started running, I am not sure where I would be.

Here is what I will take away from my last race:

(1) Maybe running a half marathon sub two hours isn't such a pipe dream, after all;

(2) When your knee starts to hurt, and then you see somebody pass you who is running with just one leg, you really don't feel like complaining;

(3) I really appreciate people who get up early and stand in some crap-weather to cheer;

(4) As difficult as it is to run 13.1 miles in a cold, non-stop downpour, it is not nearly as tough as parenting a child with autism, and it pales in comparison to the challenges my son faces every day.

And what do you know?
I don't really suck at this running-thing.
Yipee.

To Josh, from Round Rock

In the spirit of Thanksgiving, I write this to sixteen-year-old Josh, from Round Rock,Texas.

Thank you, Josh, for playing with the boy who took such an interest in you in that hotel pool.

Thank you for not questioning why he invaded every bit of your personal space and clung to you like you were a long-lost friend, even though he had never seen you before.

Thank you for returning his laugh. Thank you for looking him in the eye. Thank you for talking TO HIM, and not around him.

When I told you that he has autism, thank you for responding as if you already knew.

When I told you that he is non-verbal, thank you for again responding as if this wasn't some kind of strange news.

And, mostly, when I told you that my son loves being thrown in the pool by his dad, thank you for throwing my 65-pound child around that pool.

After watching you interact with my son for just a few minutes, I knew you had to have some type of connection to at least one person with special needs.

You told me that you volunteer, through a program at your high school, to work with kids with autism.

Of course you do,

Because look at how wonderfully you interacted with my son -- a boy who usually keeps to himself in that pool and draws the occasional glances when his differences become apparent.

Thank you for welcoming his attempt to interact. As you saw, he doesn't have the skills to approach people in typical ways. Thank you for accepting his clear interest in you and returning the attention.

Thank you for commenting on his strong swimming skills.

Thank you for saying that "he seems high functioning."

He is not -- at least not according to the traditional indicators employed by school districts and educational evaluators. Daniel struggles. We struggle as his family. BUT thank you, thank you, Josh, for reminding me that someone who knows a little something about autism can see Daniel and see a lot of great things.

Thank you for talking directly to my daughter, who too often gets overlooked. Like me, she wishes her brother had friends. Like me, she loves watching her brother being happy. She was thrilled watching you interact with him in the fun, positive ways that you did.

Thank you for reminding me that there are kind, golden-hearted people in the world who can look at my son and see more than just a nonverbal child with autism.

If you read this, Josh-from-Round-Rock-who-was-in-DFW-for-the-Cowboys game, show it to your family and tell them how lucky they are to have a kid like you. And if you are still single when you are 35, look us up. You are, after all, only ten-years older than my daughter. ;)

He is eight-years-old.

“Autism” has been spoken in my home for seven of those eight years.

Autism has wreaked havoc – on my son, on his sister, on my family, and on me.

My life, when I choose to go beyond the confines of my home, is a never-ending public service announcement.

This is what autism looks like, it says.
Real, down in the dirt, never let up, autism.

I am tired, and so this post might seem cliché. But parenting a child with autism is a lot like swimming upstream -- or floating in the ocean.

He is eight-years-old.

And I am still wondering: what is it that I am going to hang on to?

I look in all directions.

I take note of moms who embrace their faith, who turn to scripture and prayer and find not only strength, but reasons to hope and reasons to praise.

I take note of moms who embrace the fight, who spend their midnight hours reading every book, who wear out the tread on their tires by taking their children to people who claim to have found answers for others, who buy the supplements and the gluten-free foods.

I take note of moms who embrace a mission, who battle the insurance industry and lobby Congress members, and raise their voices in support of this growing community of families who see autism impact the lives of our children in debilitating ways.

I admire them, all of them.

But I am not one of them.

It is not something I am proud of.

I am part of that barely-hanging-on group.

I once fought with an insurance company, only to be shot down.

I have requested more services from a school district, only to be shot down

I have moved with my children so that my son could have ABA services, and I have driven him to multiples therapists … and there is autism, so very real, so incredibly disabling, still such a royal pain in the ass, robbing my son of so much.

I wish I could say that I have found resolve and strength from a renewed faith in God. But I have not. I do not hate God. But I have questions, big-time questions, for Him should we ever meet.

I wish I could say I have searched tirelessly for answers.

I wish I could say I have really advocated for my son in the way he deserves.

But I have not done these things.

I am living in the day.

He is eight-years-old.

And I am still wondering: what is it that I am going to hang on to?