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.
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
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 ...
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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?
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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.
Reader Comments
very good
I debate about the cost-benefit of having more money to put into therapy and extracurricular activities vs. being home with him full-time.Nice information, many thanks to the author. It is incomprehensible to me now, but in general, the usefulness and significance is overwhelming. Thanks again and good luck..
Mr
Good day! I could have sworn I’ve been to this blog before but after browsing through some of the post I realized it’s new to me. Nonetheless, I’m definitely happy I found it and I’ll be bookmarking and checking back often!
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!!
Mr
I'm the stay-at-home parent here, and you sound perfectly sane to me. Despite all the chaos, you are all to well-grounded in reality.
MR. Jen
I think you are right about parents that have never been at home full time.....
Mr
I'm the stay-at-home parent here, and you sound perfectly sane to me. Despite all the chaos, you are all to well-grounded in reality.
I miss you guys! Hopefully I will come to visit tally soon and be able to see the kiddos!
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Well...Congrats on creating me get all teary eyed at the start of this post and then ending it on a cheerful note that place a smile on my face.
Total 13 comments
Billy and his baby sister are thick as thieves these days ...
Reader Comments
Mr
Good day! I could have sworn I’ve been to this blog before but after browsing through some of the post I realized it’s new to me. Nonetheless, I’m definitely happy I found it and I’ll be bookmarking and checking back often!
Snippets 'N Stuff
Sweet. :)
Total 2 comments
While I don’t have the time or energy to blog regularly any more (I’ve told you time and time again that I’m inherently super-lazy), I didn’t want to just leave our story hanging. I couldn’t have you all thinking that we never recovered from that July virus.
Far from it. We’ve been living it up.
School started. We faced that possibility with trepidation and considered all our options. While many parents opt to educate their children with special needs at home through online classes, many public schools -- like ours, thankfully -- are making great improvements to their special education programs.
Well, Billster’s in kindergarten now and totally rockin’ it! He spends 50 percent of his time in a mainstream classroom and 50 percent of his time in special ed where he gets his academic instruction (reading, writing, math). He just aced two reading tests in a row (if you’re shocked they have reading tests in kindergarten, join the club. Kids are just smarter now) and did LITERALLY ten times better on his kindergarten assessment test than he was expected to do.
Of course, he still can’t tell me what he did at school – or he’ll tell me SOMETHING, but it generally bears little resemblance to anything that happened during the day. But we’re working on it. In terms of therapy, he’s getting speech and occupational therapy twice a week at school. His incredible ABA therapist, Ms. Elyse, is with him at home & school for a total of three days a week (she spends one full day with him at school, a couple of half-days and then comes to our house a couple of afternoons).
His school has also just hired a social skills teacher who works with the kids on those complicated issues of “fitting in.” That’ll be helpful, because he’s taken to chasing kids to school like a dog chasing traffic, and it kind of freaks some of them out. The ones that literally “run with it” are my favorite people in the world.
Billy is awesome at soccer! Our local soccer league started an outreach to special needs kids and he goes every Friday to play with his team. As it turns out, the boy’s got skillz.
And speaking of skills, he’s still taking gymnastics each Saturday morning, to which we’ve added another class: dance. Dave, The World’s Best Dad, actually takes his son to this pre-ballet class with a room full of girls and their moms and …. It gets better … my two boys will be performing together in the end-of-semester recital! I promise to take video if you can’t actually attend Dave’s debut as ballerina. God, I love that guy.
The greatest thing that’s happened, though, is Billy and Willow have become best friends. Best friends who occasionally try to strangle each other, but they’re definitely interacting. They play together with their dollhouse, their scooters, their back yard toys, taking turns and talking a language only the two of them understand.
Willow is the best therapy money couldn’t buy for Billy – and for me, too, for that matter. She doesn’t let him disappear into his own world. She sits right down in the middle of it. Heck, she won’t even let him use the bathroom by himself. She’ll stick her head in repeatedly asking, “Beedah? You all done? You all done and play with Willow?” so many times that we finally hear a scream of “Leave me alone!” That’s what I call functional language.
I started this blog to let people know that there’s joy after autism diagnosis. Boy, is there. There’s so much joy that I rarely have time to write it down any more. We’re wallowing in it every day.
And I want you to feel that way too. Though I sure won’t judge you if you don’t. If you read enough of this blog, you know how frequently I’ve been down a dark hole. If you’re there, holler out to me, and I’ll crawl on down with some ice cream and several seasons of The Hills on my iPad so that we can spend several sugary, brainless, worry-less hours before returning to reality. I can’t solve any of your problems, but I can cry and scream with you and I have always got food.
I won’t be blogging very often for a while. I’ve got a “real job” (and by real job, I mean one that actually pays me to write – score!) but if you want to keep up with Billster and the rest of us ‘Feet on a more regular basis, please join us at Facebook.com/lifeisaspectrum.
Where I will share scenes like this one:
INT. BILLY’S BEDROOM – AFTER BED TIME
ME: Billy, get back in bed! It's late!
BILLY (pointing at me): What are you feeling?
ME: I'm feeling frustrated because you're not in bed. What are you feeling?
BILLY: I'm feeling happy because you're crazy.
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Yep, life is a spectrum … and I wouldn’t have it any other way.
Reader Comments
Mr
Good day! I could have sworn I’ve been to this blog before but after browsing through some of the post I realized it’s new to me. Nonetheless, I’m definitely happy I found it and I’ll be bookmarking and checking back often!
Thanks!
Thanks so much for all the great feedback, guys! And Jill, thanks a lot for the ideas ... Billy is very echolalic and that is one of our biggest challenges at the moment. We're currently in the "taking data" stage in the hopes of trying some stuff to manage it soon. I'm going to try out your suggestions, because we can sure use some ideas!
I'm keeping up with everyone else's blogs -- even when I don't leave comments to let you guys know -- one of these days I'm going to get caught up with all my commenting! But in the meantime, keep writing, for my sake, ok?
Yay for mad skills!
Glad things are going so well!!! I am thinking the hybrid kindergarten will be what we try too. I can't remember- does Billy have echolalia? We had a hard time getting Kekito to tell me about school. It is still a work in progress, but I have a tip that worked wonders for us!
One of K's skills trainers told us to "teach him to talk like a parrot" to reduce the echolalia. I decided to apply it to the idea of teaching him to tell me about school. So in case you don't already use that method, you say to Billy whatever the Q&A is like this: Amanda- "Question Answer Question". Billy:"Answer" If you aren't already using this- it is RIDICULOUS how well it worked for Kekito.
So as far as telling me about his day, I started with asking, "What did you eat at school today? I ate a sandwich and grapes. What did you eat at school today?" then Bam! The light flickered and having answers modeled for about a week he began to answer me. His teacher also sends home little notes each day about what they did, so I ask, "What did you do at school today?" and I promt with those things.
Now about 8 months after I started trying this, I can ask what he did (and while I may not get ALL of it yet or what I would think is important...) and he tells me what they did or what certain people said. Last week he told me about Art class and that they made paint with balls (marbles) rolled in paint. =) (here is a related ? post I wrote this week. http://www.sublimedream.com/2011/09/things-kids-say-asd-style.html )
Hopefully that is something that could help you guys?
I've missed your entries! Keep 'em coming when you have the time, and best of luck with the new job!
Hugs
Big hugs to you, Amanda! I'm so happy that everything is going so well with Billy and with your new job. You're an inspiration!
Congrats on the REAL JOB! I have missed your regular posts, but try to keep up with you on your various other outlets. Keep posting here and there, I love your stories!!!!
Total 6 comments
Tuesday May 15 2012 08:15:25 am
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Monday December 19 2011 02:12:54 pm
Rachel
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!
Wednesday December 14 2011 09:46:43 am
Papa Bear
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.
Wednesday December 14 2011 09:43:40 am
writerwoman61
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.
Tuesday December 13 2011 10:00:37 pm
Ashley
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. ;)
Tuesday December 13 2011 09:55:12 pm
Paula Kiger
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 6 comments