LIFE IS A SPECTRUM

If anyone had told me this moment would be possible even a year ago, I wouldn't have believed it. But autism or no autism, we have no idea what is possible ... Life is a spectrum, yes, but it is so much more. It has dimensions we can't see and takes us on a journey that has as many ups and downs as it has steps forward. Ask a parent to describe a moment so joyful that she can't swallow the tears fast enough, and we realize how inadequate words are to describe life. Luckily, we have more than words. We have iPhones. And we have music ...

2011_Billy_party_Madeline_SWING3

Neighborhood. It’s so old-school, right? Most of us probably live in places where there is very little within walking distance. We probably have to drive to school, to the grocery store, to the office.

 

I’m lucky enough to live in an American community in which I can walk my son to school. When I first realized that was possible, I thought it was cool, kind of a novelty. I thought it would potentially be an outlet for all the energy Billy needs to exert before he can settle down in the morning. I thought it would be a great way to talk about things we see, things we plan to do, where we are going.

 

All these things turned out to be true. But I had no idea what I would come to value most about our walks to and from elementary school.

 

High Fives
Every morning, Billy meets Mr. David on his walk to school and gives him a big high-five. Or a small high five. Or he just buries his head in Mr. David’s chest. It depends on his mood. Mr. David is his neighbor, and his hands are up, or his arms are open, depending upon whether Billy needs a high-five or a hug.

 

Santos
Billy used to be dog-phobic. SERIOUSLY dog-phobic. Still is with some dogs. But every Wednesday, we look forward to an encounter with the world’s sweetest and most docile Golden Retriever, Santos, and his owner. Because of this kind, patient neighbor, Billy is no longer completely dog-phobic. Though Chihuahuas still kinda freak him out.

 

Holidays
It helps to be known around the neighborhood if your child is going to Trick or Treat with the opening line of “Look at that Grandma! She’s a witch!” Particularly, if the woman in question is, at most, around the age of 40. It helps to be known if your autistic child decides that one particular house deserves to be Trick-or-Treated five times in a row. If you can act genuinely surprised and delighted the fourth time that autistic Peter Pan tricks and treats your house, you will absolutely be getting a holiday basket from the ‘Feet.

 

Outdoor Safety
Because we walk to school, I’ve had the chance to practice road safety with Billy. He’s learned to “wait at the edge” of the road and look both ways for cars. And when he ignores all my warnings and barrels toward the intersection, Mr. Cedric, the school crossing guard, has a few words with him. Mr. Cedric is one of the kindest, most thoughtful people I know, and he has a personal and encouraging word for Billy every morning. And in the afternoon, if Billy has had a good day, Mr. Cedric is one of the first people to celebrate that fact.

 

Nothing warms my heart more than the moments when the people in my neighborhood help me keep my son from running into traffic. Mr. Cedric is a god in our household. He’s like Santa. All I have to say is, “Billy, this is Mr. Cedric’s sidewalk, and he is watching you,” and immediately, he slows down.

 

Friends
Billy has a few friends he sees only on his walk to school. They’re all neurotypical. Some walk. Some ride bikes or scooters. Many of them call him by name. One truly beautiful big-eyed girl actually makes a point to knock on our door a couple of afternoons a week. She plays Wii with Billy, helps me feed the fish, chats about her school day, and generally renews my faith in the human race.

 

I’ll be honest with you: There are moments when I think it would be easier to NOT be out “in the neighborhood.” It would be a lot easier to pick Billy up and drop him off by car, because every moment and encounter is not positive.

 

But my neighborhood has shown me how understanding a community can be. And not just understanding, but also rewarding to both me and my son. If I do my job correctly, then he’ll be as independent as is possible for him; he’ll have to be comfortable interacting with the world around him.

 

I can only hope that he’s lucky enough to live in a neighborhood like ours.

 

Reader Comments

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It is special to live in that kind of neighborhood. But even more importantly - how nice that you take the time out to walk your son to school. I did the same thing with my son, even though every other child his age walked by himself.

We had some special moments, that I treasure to this day.

Good to see you back!

This is so much like Goldilocks' walk to school. And he too finds small dogs more frightening than larger ones. I think it's a sensory issue—all that yapping hurts my ears, too.

I love this post, Amanda! How fortunate you are to live in such a great neighbourhood!

Have a wonderful Christmas!

Hugs,
Wendy

Chihuahuas freak me out, too.

That sounds so amazing. That's a lot of holiday baskets, though. I guess that's the one bright side of living next door to Mr. Meth Head instead of Mr. Cedric. ;)

What an incredible testimony to everyone you mentioned in this post. Our neighborhood is kind of the opposite - our houses are so far apart that there's not much dropping in and visiting - the school is definitely not a walkable distance away. What a gift that you have an arrangement that works so well for you and Billy --- I have a feeling all of those people (and canines) you discuss are getting as much out of the deal as you are. Thank you for sharing all of this.

Total 5 comments

It's Wordless Friday, because I was too inept to get this up on Wordless Wednesday ...

Billy is LOVING the soccer now!

Reader Comments

Hi Amanda:

Just checking in...looks like Billy is doing well!

Wendy

Mr

Wow wow.
Very great video.
It's so amazing!

Hi

Oh WOW he is so amazing ( and really really adorable )

AWWWW!

That is so sweet!!! I love the little victory hop at the end!!!! :) soooo cute! I am crazy impressed by him getting through the obstacle thing so well! Insane! I'm not sure if I could even do it! :)

Total 4 comments

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 and his baby sister are thick as thieves these days ...

Reader Comments

Snippets 'N Stuff

Sweet. :)

Total 1 comments

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