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?

My Visit the Second Graders: Part Five

The last thing I want for you guys to know is that people with autism are a lot more like you than they are different from you.

If Daniel could talk, I think these are the ways he would tell you that he is like you.

I think he would say:

Hey guys, I really love to swim. I would swim every day if my mom would let me.

And I love waterslides, especially the really fast ones.

I also love rollercoasters. I love to go to Six Flags and ride all the scary rollercoasters, even the Shock Wave and the Titan. I love it when the rollercoasters go really fast and when they make me go upside down.

I love pizza and popsicles and popcorn. But my absolute favorite food is cupcakes and my favorite candies are Sour Patch Kids and peppermints.

I love to climb, and I love to watch the otters at the zoo.

I love to go to football, basketball and baseball games and I love watching videos on my I-pad.

I think that Daniel would tell you that he really likes going to school and that he is paying a lot more attention to you all than you realize.

And here is what I would tell you about Daniel, as his mom:

Daniel loves people more than anybody I know. He loves people very deeply. He doesn’t care what kind of clothes you are wearing, or whether you passed your spelling test. He doesn’t care about any of the things that don’t really matter. He just loves people who are nice to him.

And Daniel is also the bravest person I have ever known. He started riding the big roller-coasters at Six Flags, even the one that goes upside down, when he was just four years old. He wasn’t even scared. That is one of the ways he is brave. But there are others.

Every single morning when I tell Daniel it is time to go to school, he puts on his shoes and gets in the car with a big grin. And if I were Daniel, and I knew I was going to this great big school each day and I couldn’t tell people what I needed – I know for sure that I would not be as brave as Daniel.

I don’t think I will ever meet anybody as brave as Daniel for the rest of my life.

And I think Daniel would tell you that even though he is a lot different from you and even though he can’t talk to you, he likes it when you pay attention to him. I think Daniel thinks that all you guys are really awesome. And every time you try to help him, it makes him feel really good.

My Visit with the Second Graders: Part Four

My answers to the rest of their questions:

Why does he run around the classroom and run away when people are trying to help him?

Oh, I LOVE this question. Because it tells me that you guys are trying to help Daniel. And that really means a lot to me as Daniel’s mom.

Well, I think there are a couple of reasons. And I think it depends on where Daniel is and who he is running away from.

Sometimes, I think Daniel is trying to get away from work!

Daniel is really good at escaping when he is tired of working, and I can hardly blame him. We all have things that are hard for us. When Daniel comes to school, he is being asked to do the things that are the very hardest for him -- like listening.

Another reason I think he runs away, especially if he is running away from you guys, is because he is a little nervous. He KNOWS he is different. He knows he can’t do all the things that you guys can do. But he doesn’t know how you guys are going to respond to that. So that makes him a little nervous, and probably even a little scared.

You guys are so great at talking and listening that when you are talking to each other it probably sounds a little something like this:

HEY! OH MY GOSH I HAD SUCH A GREAT WEEKEND AND DID YOU SEE JUSTIN BEIBER ON TV THIS MORNING AND CAN YOU BELIEVE ALL THIS HOME WORK WE HAVE TO DO IT IS RIDICULOUS.

Imagine how you might feel if one day you moved to a different country where everyone spoke a different language. And imagine if everyone in this county was talking that fast and you couldn't even ask them to slow down. I think that is sort of what it is like for Daniel every day, and sometimes he just wants to escape and take a break.

Why, in PE, does he squeal and cry out when the teachers are trying to help him?

So you guys have noticed that sometimes places like the gym can be hard for people with autsm.

And here is something else you should know about autism. Does anybody know what the five senses are?

(With a little help, they named them all.)

People with autism sometimes experience things with their senses a little bit differently, because the connections in their brains are different. So, sometimes people with autism see, hear taste, touch or smell things differently that the rest of us.

I know Daniel does sometimes. I know that when he looks at a waterfall, he sees things that I don't see. I think it is because he looks at it so much more closely while I am busy listening to what people are saying around me or thinking about a story I want to tell my best friend. Daniel is only looking at the waterfall.

I know he hears things differently sometimes too. I think he hears things louder sometimes. I have watched him before when we are outside and noticed that he is really listening to something. So I have stopped what I am doing and tried to listen really hard. And it is usually the coolest sound – like the pretty whistle of a bird in the distance or the buzz of a bug – something I never would have heard if I hadn’t really stopped to listen.

I think Daniel sometimes hears more things than we do and sees more things than we do, which, when you think about it, is really cool. But when language is tough, and when sounds are a little bit louder to somebody, someplace like the gym can be REALLY chaotic. It can seem SUPER loud and SUPER scary because what you guys are hearing sounds so much louder to his ears.

Why does he grab stuff and run?

I think the biggest reason is Daniel gets told NO a lot! The grownups in Daniel’s life are always pushing him to do things that are hard for him. We want him to listen to us all the time, so he will get better at listening and understanding. We want him to try to make sounds all the time. We want Daniel to try, try, try at the stuff that is hard for him so we tell him no when he wants to do something else. We tell him no when he wants to just grab something comforting to him, like those lids, and escape.

If I was used to getting told no all the time, I think I would probably try to grab stuff and run, too!

I think Daniel grabs things and takes off for the same reason his sister will grab a big bag of chocolate cookies and take off to her room. Because she really wants those cookies, but she figures she is probably going to be told no.

Why did he bite the teacher?

Oh, no, I really hate this question guys because I hate to hear about Daniel biting anybody at school. BUT I am still really glad somebody asked this question because it allows me to tell you something very important. I want you guys to know that Daniel never wants to hurt anybody.

I want you guys to think about the last time you had a rotten day. And if you can’t remember, then just try to imagine some things that would make your day really crummy. Maybe your dog is sick. Maybe your mom is sick. Maybe you missed seven words on your spelling test. And you just found out your best friend is moving away. I want you to think about some of the things you do when you are feeling just so sad and down and scared.

I'll tell you what I sometimes do when I get feeling super crummy or sad: I yell.

I even yell at people that I really love. I might even yell at my kids. I don’t mean to hurt their feelings, and I don’t want to hurt their feelings. I am just feeling so terrible in that moment that the words just come out, and they come out loud because I am feeling so badly.

Well, bad days for Daniel are even harder than my really bad days because he can't talk to anybody about why he is angry or sad. I think Daniel bites for the same reason I yell. It is his way, sometimes, of expressing his frustration.

One last post about my visit coming up

My Visit with the Second Graders: Part Three

They were an enthusiastic audience, this group of second-graders who spend part of each school day with my son -- these kids who know very well how different Daniel is and wonder why. As I moved from their most fundamental questions -- was he born with autism; why doesn't he talk -- to those focused on his behavioral characteristics, I wondered if I could even begin to explain the things that are so mysterious to me.

I "know" Daniel better than anyone else "knows" Daniel. To know Daniel is to worry in immeasurable amounts, to accept that love transcends words, and to wonder about all the things you can't really know. When you think about it, you can say the same for all of our most treasured relationships. Autism just makes relationships so much more complicated, because -- and I speak for myself here -- it leaves you longing for the opportunity to communicate with your child in the typical ways that bond people together.

Just as Daniel is complicated, so is knowing him ....

... although he is so worth knowing.

So I did my best.

Why does he want to spin things?

Here is what I think: this world filled with words is tough for people with autism in a lot of ways. You guys are so good at talking, and when you are talking with somebody, you are really good at being able to tell how that person is feeling and what they might want to talk about next. People with autism are good a lot of things, but that kind of stuff is hard for them. So, I think they take comfort in things that are predictable to them.

And we all do that sometimes. I will give you an example. Do you guys have a favorite movie?

(Yep, they did.)

How many of you have watched you favorite movie more than once?

(Well, duh, they all had.)

More than twice?

(Yep. The hands stayed up.)

More than five times?

(Yep.)

How many of you think you have watched your favorite movie more than TEN times?

(They all looked around the room at each other, and they all seemed to be on the same track. These kids really liked their favorite movies.)

So, even though you know everything that is going to happen in that movie,even though you can probably repeat lots of it word-for-word, you still like to watch it.

And I bet that when you guys aren't feeling well, you'd probably like to just sit on the couch and watch your favorite movie, even though you have seen it so many times. Even though you know that whole movie by heart, watching it brings you comfort. It is familiar to you.

Well, its the same for Daniel: things that are very familiar to him bring him comfort. He knows that when he picks up a lid, or something else that spins, he can make that lid spin every single time by doing the same thing each time. It is predictable. It is easy to understand. And when he is spinning a lid, he can get lost in it, and he sometimes will tune out the world around him – just like you guys tune out the world sometimes when you are watching your favorite movie or TV show.

Why does he grunt and say uh?

Do you guys mean when he kind of screams like this: AAAHHH!

(Yep, they did)

You guys have noticed that sometimes Daniel can make a lot of noise. And sometimes, I bet, all this noise really surprises you! It surprises me, too. I can be sitting in Chic-fil-a with Daniel and he will see a picture of ice cream on the wall, and he will shout "AAHH" so loudly that I nearly fall out of my seat onto the floor!

But even though all that noise can really startle me, it is also exciting, and here is why: Daniel hasn't always used his voice box to get attention. When he was younger, whenever he wanted something, he would either try to get it all by himself or he would come and find me, take my hand, and lead me to whatever he wanted. And he would put my hand on what he wanted to show me. Now, he is really trying to use sounds to get peoples' attention. But it is hard for him.

I want you to try something with me. I want everyone to make the "t" sound. Like this. Now I want you to think about all the things your mouth is doing when you make that sound. Your tongue is going up to the roof of your mouth, right? And what else?

("My mouth goes tight, kinda like I am smiling," says one child. "And I am blowing air out of my mouth," says another.)

That's right! And you have to do all that stuff just to make ONE SOUND!

Well, remember those roadblocks we just talked about? They are making it really hard for Daniel's mouth and tongue and lips to do all that stuff. So, right now, he is making the sounds that come easiest to him. And he really wants to be sure he gets your attention, even though he can't say things the right way, so he is LOUD!

When he really slows down and tries hard, he can make a lot more sounds and he can say some words. I am hoping that some day he will be able to say a lot more, and that he will use a machine to help him with the words he has trouble saying ...

UP NEXT: the last of their questions and the ways that Daniel is so much like them.