LIFE IS A SPECTRUM

Billy_Swing

When I first heard the “A-word,” I was devastated because I thought my child was going to turn into some kind of robot. That he would refuse to hug me, become incapable of laughter, never have friends, never know love. That's what I thought autism meant. Because at the time, I had no idea what life on the spectrum would really be like ...

---------

INT. BEDTIME – LAST NIGHT

Billy is tucked into bed. My hand is on the light switch when he starts whimpering.

Me: Billy, why are you crying?

Billy: I’m crying because, because… because Mama is leaving.

Me: I’m just going to my room. I’m not going very far.

Billy: Can you hug me?

Me: Of course I can hug you.

And I jump up on his bed next to him and give him a big bear hug.

Billy: (muffled, into my shoulder) Can you hug me for a hundred minutes?

------------

We didn’t hug for a hundred minutes, but we hugged for a long time, long enough for me to remember how afraid I’d been that he would lose this, long enough for a tiny little spark of fear to tickle at the back of my mind: Would a day come when he wouldn’t want to hug for a hundred minutes?

Of course it will. And most mothers fear that day.

If anything, Billy's autism is more about a surplus of emotion, and how to deal with it, rather than a lack of emotion. Most of the autistic kids I know seem to be that way. Billy's emotional maturity is closer to that of his 2 1/2 year old sister than his kindergarten peers. He can go from zero to sixty -- happy to to miserable -- in about three seconds flat. But he usually gets over it just as quickly.

And he’s becoming more independent every day. This new wave of separation anxiety is caused in part, I think, by the fact I’ve been working more. I'm a working mom now, and there are a couple of afternoons each week that I’m not the one to pick him up at school. I put in a full work day each Friday now, and a wonderful grad student in the speech pathology program at FSU walks him home and plays with him for a couple of hours.

I worry about being away from him. I stress that he stresses. I debate about the cost-benefit of having more money to put into therapy and extracurricular activities vs. being home with him full-time.

I’ll be honest: Working is good for my sanity. When I stayed at home full-time with both kids – which I did until fairly recently – I was a crazy person. I am not cut out for that job, because I got steadily crazier with each passing day. I never felt like I was doing a good job, never felt like I finished anything … before it got covered in something sticky and I had to wash it or glue it back together or throw it away when no one was looking. Anybody who thinks stay-at-home parents have an easy job needs a punch in the face ... and a week spent as a stay-at-home parent.

Unlike parenting, at the office, each project has a beginning, middle and end. Even the hardest job just seems so ... easy. Occasionally, I get told, “That’s really good work!” instead of having a small, running, naked person scream, “I don’t want to poo-poo!!” at me. To date, no one at my office has screamed at me because they didn’t want to poo-poo.

Of course, none of them want to hug me for a hundred minutes either.

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I just found your blog (thank you Twitter! Thank you FSU Film!). This is a very heartening recount of your "hug" time and it made me feel like I was right there experiencing that wonderful moment with you. Will send supportive thoughts as you continue on your "working mom" journey. I still struggle with it every. single. day. (And my kids are 12 and 15). We all just have to help each other out!!

Total 14 comments

Billy has become really interested in feelings lately. "Mama, how do you FEEL?" is a frequent question.

feelingschart

And he squints his big blue eyes and seems to really concentrate as I give my answer.

He seems dubious of simple emotions lately: happy, sad, silly and tired no longer cut it.

So I've tried to introduce slightly more complex emotions like frustrated, peaceful, confused, etc.

Which brings us to ...

INT. BILLY'S ROOM - NIGHT

It's bedtime. We've just tucked in, had a final story and he has said his prayers.

BILLY: Mama, what are you feeling please?

ME: (thinking about it) I feel peaceful. That's a quiet kind of happy that's good for bedtime.

He squints his eyes as though he doesn't believe me.

ME: And hungry. I have to go have my dinner now. How do YOU feel?

He considers this for a moment, staring thoughtfully at the ceiling. Then his eyes return to mine.

BILLY: I'm concerned.

ME: Concerned? That's a big word. Do you have a problem?

BILLY: Yes.

ME: Tell me about it. What are you concerned about?

BILLY: (emphatically) Mascara.

A beat.

ME: Mascara? Why are you concerned about mascara? Do you not know what it is? Do you not understand what it's for?

Another beat. He considers.

BILLY: Yes.

ME: Well. Mascara. It goes on ladies' eyelashes to make them ... um, darker and longer ... it's kind of like ... paint?

Billy's look has evolved from concerned to what I would call "alarmed."

ME: It's dress-up. Let's just leave it at that. No cause for concern, OK? Absolutely nothing to worry about with mascara.

Then I kiss him on the head and turn out the light.

BILLY: (in the dark) Mama? Are you peaceful?

ME: Yes I am.

thewayIfeel

INT. BILLY'S BEDROOM – MORNING.

It's one of my favorite times of day. The room is dark, and Billy's still warm and snuggly from sleep.

Me: Time to wake up, big guy. Time to get ready for camp.

He rubs the sleep out of his eyes and whispers to me.

Billy: Mama, how do you feel?

Me: I feel like I love you.

Billy smiles.

Billy: That makes me feel thankful.

My heart bursts and I hug him deeply.

Me: I'm thankful too. I'm thankful for you.

Billy: I am not frustrated.

Me: That's good.

Billy: I am not very shy.

Me: Truer words have never been spoken.

##

Proud

The illustration for "Proud."

Billy and Willow love the book, The Way I Feel, written and illustrated by Janan Cain. Both kids have started using words to identify their feelings, a major goal for us this year. A book can't teach these ideas all by itself, but as a visual reinforcement of conversations about these vague concepts of emotions, I think it can be very helpful, particularly to preschoolers and/or those kids with developmental delays. The illustrations in The Way I Feel are engaging and colorful, and the little rhymes do a great job of capturing the essence of feelings such as “jealous,” “shy,” “silly,” “frustrated” or “excited.” I recommend it, if your kids are working on these concepts.

FYI, I bought this book with my own hard-earned cash, and all opinions contained herein are my own, un-sponsored objective perspective. However, had anyone offered to pay me for it, I would have happily taken their money.

Sigh.

Reader Comments

I think I'll go look for this book as this is the 3rd time it's title has come up this week. We are still working on identifying feelings and the subtle gradations of...
I hope you are well Amanda. It was good to see your name on a list somewhere today so I popped on by to say hello!

Teacher gave it to me

My son's teacher gave us this book as well and he loved it till it fell apart. I think it was very useful in teaching him about feelings, which we are still working on.

Snippets 'N Stuff

Good to know. I'll pass this information on to the teachers I work with.

Yeah, I'd happily take money too!

Too bad nobody is offering!

LOL

Very sweet!

Total 5 comments

Apparently, we're teaching our autistic kids about emotions so that they can grow up and fit in with people who think they've had a "bad day" if a bunch of people they don't know lose a game they watched on TV. If Billy grows up to understand that, maybe he can explain it to me ...

Reader Comments

I've got spirit, yes I do!

@BigDaddy: The next time someone assumes I have sports knowledge, I'm going to tell them that I follow MMA instead. That'll shut 'em up.

I want you to know that sometimes when you talk about Griffin, I get this little tingle, like I'm getting a glimpse into something like Billy's future. And it's a beautiful thing. If I can be half as good a parent as you and Mrs. BD by the time Billy enters middle school, I'll consider myself a huge success!

@Ashley: I have a soccer fan in my house too. I thought that was all I had. Little did i know that he was going to adopt all OUR country's sports too when he moved here. Now there is no season that ISN'T a sports season!

@Cheryl: I'll admit it: I'm a big fan of the bowling and poker games on the iPad :-) AND the fact that I can get my magazine subscriptions there. There's something for everyone!

@Lynn: Next week I interview the iPad about it's opinions on health care ...

@Heather: Great minds think alike! Thanks :-)

Frivolous Mom

Oh I SO agree! I love this! You said it exactly how I would have. Love the Vlog!

Still loving the v-logs!

It's so nice to see you every week. Quit showing off that iPad!

I Love your Vlogs!

My daughter does a pretty good job with identifying emotions also, which is really cool.

I really want to get an iPad. Not for my daughter, but for me! LOL

As the wife of a former college soccer player, I do have to question the utter sanity of some of those fans. But at least the fanatics in Europe and South America have grown up with that level of intensity. I really question the emotional health of my hubby who willingly and actively longs to be a part of the madness. =) A World Cup is on his bucket list and I would love to make it happen...I just don't know that I want to be there!

I also graduated from FSU and grew up on Seminole football. But I guess we really do have limited space on our list of emotional investments because it's been a while since I've had the energy left to care. Much.

Enjoyed your post, as usual!!!

V-Log

I am so with you on the professional / college sports thing. I used let that stuff eat me up inside until about twenty years ago I quit it cold turkey. I couldn't tell you who won the last Superbowl if I tried. I do watch MMA (Mixed Marital Arts) like the UFC, but only because I like watching guys beat the cr$p out of eachother.

Funny that Billy thinks he can change your emotions at will. Griffin does the same thing. Mid tantrum he will blurt out "YOU ARE HAPPY WITH ME! I AM GOOD BOY!" How wrong he is.

Total 6 comments

Billy was bawling his eyes out yesterday, faced pressed to the front window as his new play date and his mom pulled out of our driveway. "He's gone! He's not here! EJ, where are you?" The "you" is a long heartbroken wail. "He's not here and it's my birthday!"

Easter_Billysad

It's not Billy's birthday. That line came straight from a book called Little Bear. But the emotion is real. He made a new friend and watching EJ walk away at the end of the play date was devastating.

My heart ached, and I had tears in my own throat. I also recognized that rising panic that I feel when confronted with a parenting problem I'm worried can't handle. I looked at him and it was like staring in helpless horror as an injured baby bird flailed around in the middle of a busy intersection. No amount of organization, careful study or regular therapy will ever protect my baby's heart from being broken.

Most people are more familiar with the unemotional side of autism, and we get that sometimes. It's almost easier to deal with. When I pick Billy up from school some afternoons, he's clearly waiting for me. But when he sees me, his first response might be a blank stare. And then suddenly, his face will break into the most brilliant smile and he'll run at me, arms in the air. And at the last minute, rather than throw himself into my arms, he does what we call "the drive-by:" he breaks away and runs in the other direction. It's almost like the emotion of the moment is too strong. He has to back away, size up the situation and then come at me again. It might take three or four tries before he finally accepts my embrace, but when he does, it's whole-hearted. He feels very deeply and sometimes it's too much for him.

When the anticipation of a moment is too strong -- maybe it's a tense moment in a book or TV show he knows very well -- he'll sometimes put his fingers in his ears. Anything to dull the sensory overload, it seems. Like he'll feel it less if he can't hear or see things as clearly. I think we all have moments like that in our lives, when we'd like to put a hazy filter on things, to tone it down just a bit. Billy's heartbreak over the absence of his new friend was one of those moments for me.

Then I snapped out of it. My son may be autistic, but he's no injured baby bird; he's smart and strong. He can handle this, and so can I. "Find Mama's eyes," I told him, and after a last doleful glance at the empty driveway, he turned his tear-stained face up to me.

"Find Mama's eyes," he repeated and then wailed again, "EJ is gone! He's not here!"

"Yeah, I know," I agreed, giving him a big hug. "But he'll come back. He's coming back on Sunday for Willow's birthday. And you'll see him at school, at lunch and on the playground." EJ goes to the same school, but is in a different pre-K class.

"He's not here. He's gone," he says again, but he's not crying now; he's thinking. "He's not here and it's my birthday." But the gears are working in his brain; you can almost watch them move. "Willow's birthday," he seemed to correct himself, and something clicked. "Where's Willow?"

Good point. Crap, where is Willow? In the midst of the drama, I momentarily forgot all about my one-year-old.

We find her playing happily, as usual, in her play yard. She looks up at her brother, squeals with delight, and holds up her arms. "Up!" she shouts. Instead, Billy climbs in the play yard with her. He wraps his arms around her and squeezes, maybe a little too hard, but she's a robust little thing and loves every minute of it.

I watch them play together, arranging figures and furniture in the doll house, and thank my lucky stars that there is no filter on what I feel.


Reader Comments

Love Hurts

Oh, yes, we saw that sweet boy pining in the window. EJ kept saying, "Biwwy is not happy, he is sad". Looking forward to the party on Sunday; rain, rain go away!!

Thank You!

A mutual friend of ours (Sharon Urquhart) was the one who sent me to your blog and I have been reading steadily for days now. I am amazed at how alike our boys are and when I read about Billy's "drive-by's" I had to comment! You have no idea how wonderful it is to know that you're not alone and that someone else is sharing the same experiences, Reese has done the "drive-by" since he was a year old!! I really wish I had known you when we lived in Panama City, it would have been great to know someone in the same boat. But mostly, I just wanted you to know what a comfort your story has been to me. Thank you!

Total 2 comments

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