LIFE IS A SPECTRUM

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

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Snippets 'N Stuff

Sweet. :)

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Pinocchio_nose

Billy, what are you doing?!

I'm pinching Willow's head!

Billy, WHAT are you doing?!

I feed the TV a sandwich!

Billy, WHAT ARE YOU DOING?!

I'M WASHING THE TOILET PAPER!!

Ask a stupid question ... get an honest answer. That's one of the few “upsides” of autism: honesty.

There are others. My fellow autism parent/blogger Big Daddy has written about the fact that his 13-year-old son will still happily show affection and hold his hand while walking down the street. Other parents have mentioned the imperviousness to peer pressure and the dedication to subjects about which they feel passionate.

Where Billy is concerned we can also count an amazing memory, perfect pitch, perfect rhythm, and a scary-good sense of balance among his strengths; whether they can all be attributed to autism is impossible to say. After all, whether or not he was autistic, he might have still been a good singer, a good gymnast, or a spelling bee champ. But autism has impressed its indelible stamp on my son, so each of his favorite activities are enjoyed in a slightly different way because of his beautiful, unique brain.

I'm in no way, of course, trying to minimize the downsides, the challenges, the often heartbreaking difficulties faced by autistic people. But those are the things that usually get the press and attention, so I thought I'd mention, ever so quickly, a few positive things. And honesty is one of them.

By contrast, my two-year-old daughter is already discovering her inner sociopath. She can lie till the cows come home.

Lately, she and Billy have been physically fighting like cats and dogs. Usually over toys. And he'll come running, screaming from the other room, with her literally nipping at his heels like some kind of rabid badger. “No pinching! No pinching!” he screams as he tries to keep his Lightning McQueen car out of her grasp.

One morning, I sat them both down on the bed and ordered them to watch TV quietly while I finished getting ready in my bathroom. Poking my head back out of the bathroom a few moments later, I caught Willow, with her fingers in pre-pinch mode, ready to strike at Billy any second.

Her eyes met mine. Her hand froze. Then she wiggled her little fingers in the air. “I tickle, Mama.” Yeah, sure you do. Sure you do.

Because I now know how things look when they don't develop normally, I've come to appreciate, believe it or not, this deviousness in my daughter. I'll never have to worry whether she will wear all her feelings and thoughts openly on her face, making her a target for the con artists and bullies in the world. I'll never have to wonder whether she can understand the concept of lying at all and have to explain to her one day that everyone doesn't always tell her the truth.

Of course, I hope this tendency to fib is something she grows out of for the most part as she gets a little older – or at the very least, uses sparingly.

Maybe her brother will have a good influence on her.

Reader Comments

monster beats

Katie tries to lie, sometimes, and it is hilarious. She can't keep it going for 2 seconds. She instantly begins to laugh. She does try, though. Ben, isn't a great liar either, typical kid that he is. He will do it, but then come to me a few minutes later, seemingly guilt-ridden, and needing to tell me the truth..ha. Fine by me.

Great SIte

Great Site. Found you thru SITS. I have a sweet 13 y.o. boy on the spectrum. He has recently discovered lying. But he sucks at it LOL
He still holds my hand and runs to greet me at the door after work for my welcome home hug.

So glad I found your site!!! I LOVE IT! My son also has Autism (one psychologist thinks it's Aspergers), although he's already trying to do the lying thing. And the stealing.... pretty frequently, I might add. It's driving us nuts!
Very excited to read more!
Kelsi
Come say hi at modernmomredefined.blogspot.com

It really is interesting to watch how different kids learn about and test the concept of lying. Both my boys enjoy giving lying a whirl, but neither one has learned to do it with a straight face. I like to think they'll grow up believing I can read their minds rather than their tell-tale smirks. And if they never learn to lie convincingly, I'll never have to worry about them blowing all their hard-earned coin on poker.

I love Billy's innocence and Willow's street smarts. I hope you're right in that they'll learn from each other.

I too have a terrible time lying...I feel really guilty, and can't keep a straight face...

I also hate being lied to...

Hugs,
Wendy

Pants on Fire

My NT daughter is not a cumpulsive liar like her daddy. Yet. But she is better at it than her big brother. On ocassion, Griffin will attempt to fib, but as soon as confronted, he confesses. He would make a terrible criminal.

What a Great Topic!

I should address this issue! LOL

I can't really get a read on Audrey yet. She's so godawful about answering questions or relating past events that it's impossible to tell if she's lying or just bungling the story. If it has something to do with scoring chocolate, I have a feeling that she'll learn quick.

Total 11 comments

I've been out of touch again because we've been on Spring Break. It wasn't that we didn't have Internet access; the condo where we stayed had wireless high-speed Internet. It wasn't that I purposely took a break from electronics in an effort to reconnect on a more personal level with my family – as much as I'd like to claim that as the reason. In fact, the reason I have not been blogging is #1 on my list of “A few things Mama learned during Spring Break 2011 ...”

SB_BillySmiles_beach

1. You have to be able to hear yourself think in order to write.

Who would have thought? I had all these wild and crazy ideas about our vacation at the beach ... before we actually left. As I packed swimsuits and running shoes and sunblock, I imagined myself starting each day with a meditative walk on the beach, followed by a trip to the spa downstairs where I would work out for a full hour before hitting the sauna. In my mind's eye, I topped off this indulgence in self-care with a full body massage and pedicure. Which brings us to ...

2. After 24 hours with my kids at the beach, I want to work out like a hole in the head.

And as for the sauna: HA! I was lucky to have time for a shower. The closest I got to a pedicure was rubbing my feet on the bottom of the pool while carrying a child on my back.

But it was phenomenal week. Last year at this time, we had a “stay-cation” for Spring Break. We just didn't feel that Billy was ready for sleeping overnight in a strange place. That was a great holiday too; we just stayed in town and “played tourists” in our own city.

This year, though, we took the next step: an actual week-long vacation. Number 3 on my list is something I've stated before ...

3. A year can make a world of difference in the life of a child, any child.

Please remember that -- and help me remember it -- when we get a bit down about the current situation.

We take so many things for granted now that were practically unthinkable a year ago: eating out in (certain) restaurants without meltdown, the kids (mostly) sleeping through the night, Billy being potty-trained, Billy enjoying the company of other children. It's important to look back and realize that, even if it seems slow sometimes, progress is being made. And speaking of other kids ...

SB_BillyPrances

Beach sand = yummy tactile input :-)

4. Sometimes when we back off for a little while, nudge our little birds out of the nest, they will make breakthroughs seemingly on their own.

I sat in rapt wonder at a playground this past week as Billy played for a good half-hour with another little boy. They threw a ball back and forth, kicked it (sort of) to one another, chattered away in their own little ways, laughed and had a big sporty little boy-time. He didn't need me to provide appropriate social prompts, encourage him to take turns or guide his behavior in any way.

Of course, this wasn't actually a miracle. It just looks that way sometimes. His devoted team of speech therapists, teachers, aides, behavior therapists, occupational therapists, and family members have been working towards this goal for YEARS.

So team, take a bow -- alongside Billy. Your hard work has resulted in one happy four-year-old enjoying a great day at the playground and making a new friend.

5. Vacation is no time for flashcards.

Willow_partyoutfit

Of course, that didn't stop me from packing them. I broke out the sequencing cards one morning (3-step cards to help him learn “first, second, last” storytelling), and asked Billy about one simple picture story depicting a boy getting a book off the shelf, “Billy, what does the boy want to do next?” Instead of picking out the picture of the little boy reading, Billy replied, “Go to the beach.” And I got the message.

As a mom, I have to work on “going with the flow” a little bit. It's tough. If you read this blog regularly (and thank you, if you do!), I'm a control freak. I readily admit it. I spend so much of my time trying to be three steps ahead of every meltdown that I forget to relax and let my kids be kids sometimes. I used to have “Every moment can be a learning moment,” as my mantra, but my new mantra is, “Every moment doesn't HAVE to be a learning moment.” Chill out, mom.

6. It's Willow's vacation too.

Wait a minute, I have another kid? Sometimes, it still kinda surprises me, because so much of our planning goes into giving Billy the support he needs in any situation that I forget that Willow has "special needs" too. Even her birthday party gets planned around Billy's schedule, challenges and preferences. She's NEVER managed to blow out her own birthday candles without him getting there first.

Condo_party

Cool digs, huh? Thanks, sis!

Willow's few needs are for a moment of individual attention each day, a handful of birthday cake, and then she's good to go. The rest of the time, she's happy to make it all about her “Bee-dah” too.

7. Billy is pretty funny.

This isn't a revelation, but I was constantly reminded over the past week. One day, he was passing a stone-shaped speaker by the condo pool, he stopped pointed, and said, “I think that's ROCK music!” Then he nearly fell in the pool he was laughing so hard at his own joke. It was a pretty good joke.

8. Autism can still surprise me. And hurt. And confuse us.

pirate_sloaniebear

Are these the "captains" that have so terrified Billy? Possibly.

pirate_booboo2

Out of nowhere, Billy became incredibly fearful in the middle of our vacation. He suddenly balled up in a corner, with his fingers in his ears, screaming, “I'm so scared!” He stayed that way, off and on, for most of the next 24 hours. When we coaxed him into talking to us, the most we could get out of him was, “I'm scared of captains.” He had seen some cartoon about pirates, and we had been to a restaurant called “Peg-legged Pete's,” neither of which seemed particularly scary.

All we could figure was, like his fear of kangaroos, the fear of “captains” really means something else, some mystery made up of sensory overload, unpredictable schedule and general weariness born of several days of non-stop activity. All we can do sometimes is sit close to them, talk softly and wait it out.

Or, in Dave's case, promise Billy that if we see any captains, we'll “kick them in the peg leg and laugh.” I don't know what sort of effect this is going to have on Billy's ability to empathize with disabled mariners, but as Dave pointed out, peg legs are a bit thin on the ground these days. And it did make Billy laugh.

 

9. Sometimes autism's surprises are really good ones. For instance, even a naval air museum is fun, exciting and hilarious when viewed through Billy's eyes.

SB_Billy_Cockpit

Let's just say that on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation. The idea of spending an afternoon touring various types of aircraft is likely to send me to my bed with the vapors.

DSC_0420

Until I visited one with Billy. He went completely monkey-poop over the National Naval Aviation Museum. He danced around under the giant planes and literally trembled with excitement. He hugged the end of one plane or jet or whatever you call it and said, “I hug you! I love you, big jet!” Then he tried to insist that I close the ceiling bubbly thing over the driver's seat so that “Billy can fly. Billy can FLY!” Dear lord. I don't think so. The sight of an old bi-plane made him fall on the floor in hysterical giggles. Really?!

The museum was free and had an awesome kids play area with a kiddie aircraft carrier, complete with slides (Are there slides on an aircraft carrier? I'd like to think so.) and little helicopter that the kids could sit in. Willow quickly took command of the ship and bossed around children twice her age. I think she has a scary affinity for the military.

So it was a great Spring Break, despite the fact that I never darkened the doors of the spa or the gym and my toes still look like they've been mauled by beavers. As usual, I learned at least as much about myself and what I need to work on as what I learned about Billy. Which brings me to the end of this year's list ...

10. I should really stop making lists.

Who am I kidding? That's never gonna happen.

Reader Comments

Welcome back to Blogland, Amanda! It sounds like you guys had a fun vacation!

"on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation." Best. Line. Ever. I feel the same way! A couple of summers ago while visiting my brother, he decided it would be a good idea to tour the Diefenbunker, which was built during the Cold War to house the Canadian government if there were a nuclear attack...it is now a museum. Let's just say the kids faked interest as long as they could...

I'm a control freak too, but I almost never make lists...

Wendy

I like your lists!

Especially when they're like this! Loved this post - keep 'em coming!

So much better than our Spring break...

Sounds like a great vacation! I agree with your husband...I think peg-legged pirates should be the one prejudice that Billy is allowed. So awesome that Billy has made such great progress! That spontaneous play date is like a dream come true!

I needed to read this

#3 really hit me between the eyes. Right now I'm so wrapped up in the "what we can't do's" that I can't even fathom the future. Thanks for giving me hope!!!

Oh..and my little one has the weirdest fear of cows (cartoon and real). Makes every Ipad game with animals fun. And Chik fil A is on the banned list right now! ha! Glad we not alone in fears of things that have no rational explanation.

Sounds Like a Great Vacation!

It sounds like you had a great time! I'm so glad. Billy's progress is also fantastic!

Lists

A year can make a huge difference. Last year I couldn't stop making lists. This year - not so much.

All things considered, sounds like a great vacation was had by all.

Looks like a really great trip! Beautiful pictures. Have any tips/tricks for the car ride there and back? I think that's our big hang-up. Our kids (both of them) do not do well for after about 40 minutes. We do fine once we're there, but good grief it has to be a great place we're going to make it worth the hours in the car!

I enjoyed this post... I have a daughter who is a list maker and used to be a control freak. That has been adjusted since baby #1 came and she's the one that is due with baby #2 so her grip on control has slipped significantly. My favorite line in this is " toes still look like they've been mauled by beavers." LOL. I'm with you.

Total 9 comments

Billy_Dandelion

I don't get it. Where's the button to make it talk?

I'm absolutely serious about putting a moratorium on toys in our house. This Christmas is going to be different. They're still young enough that spending time with their parents isn't an eye-roll-inducing exercise and I want to focus on experiences this year, instead of stuff.

Maybe we'll create some new traditions – at least one or two – that we'll keep up. At the very least, no more EVIL toys will lurk, hidden, in my home and as soon as the batteries wear out on all the talking toys we own, they're going mute. If anybody wants a doll or train to talk in this house, they're going to have to develop some mad ventriloquism skills.

Besides, few of the toys we've spent good money on even get played with; most are lying around in piles or lurking in the dark, waiting for me to step on them and develop weird lower-case-z-shaped bruises on the bottom of my foot.

No, my kids favorite playthings are the following:

1. The box in which any one of their thousands of toys was once packed – as well as all the other empty boxes and plastic containers in the recycling bin.

2. Our yard full of colorful dry, crispy leaves.

3. Actual pots and pans – so much better than their cute plastic ones that FIT the play kitchen. We keep having to rescue actual kitchen utensils from the sand box. Who knew what a good digging tool a potato masher could be? Actually, until Dave told me, I didn't even know what a potato masher was.

4. Bugs. Willow lies on her stomach next to them, waves and says, “Hi, bug!” to every single one.

5. Sand. Any place. Any time.

6. Water. Ditto. Bath time in our house is part rave, part badger fight.

7. The expensive shutter blinds that used to beautifully adorn each window (installed by previous owner; we're not that stupid) -- until Billy played “Window Circus” (you'll have to ask him) and tried to ride them.

S_BillyWilly

This doll smells funny.

8. Squirrels. Luckily, they can't catch them. We have, though, had a few close calls.

9. Each other.

10. My bras. (??!!)

One big gift we're going to give ourselves is a back yard makeover by our incredibly talented friend Meghan Mick at Design From The Ground Up. Meghan, who blogs at Play of the Land, designs natural play spaces -- for individuals, preschools, churches, community parks, you name it. She uses natural materials and local plant life to create play spaces that inspire imaginations -- and don't require batteries. Check out her gallery of creations; it's breathtaking!





Reader Comments

Hi Amanda:

I love that you're putting the garden in...will satisfy Willow's bug fascination (I have that myself), and their love of water and dirt. It will also give them a feeling of accomplishment if they're allowed to grow their own stuff!

Wendy

Baby steps in the yard

Dave said I should probably let everyone know that we aren't having a world-renowned playground installed in our back yard. We don't really have that kind of dough to throw around. But the great thing about Meghan's company is that she can do something as simple as design the layout/plantings so that you can do a lot of the work yourself -- all the way up to the whole kit-and-kaboodle.

We're going to start with a few introductory steps: Rain barrel, butterfly garden, vegetable garden, some pathways with native plants. And slowly add elements as/when we can.

Her whole philosophy is something I really believe in -- the idea that kids NEED to interact with their natural surroundings. It has an amazing calming effect on kids with all kinds of issues.

We could do sand and water over here all day all the time and the blinds are the main attraction in our new house.
I'm excited for you over your new yard, her designs are amazing!

Oh I hear you on this list! My daughter was, and still is (at age 9) a lover of boxes. One of her favourite activities as a toddler was to unpack the drawer where I kept towel, cloths and flannels - those cloths used to become everything from hats to dolls. Just lovely to watch :)

Gosh!

Goodness! ... from the ground up is designing your back yard! I 'm so jealous. I have no doubt it will look amazing, I love their work :)

Great Playthings

My daughter likes a lot of those playthings too! Maybe I should forgo shopping for toys and just bring in a bunch of bugs! She'd like that more!

Nah, I don't like that idea.

Enjoy your backyard makeover! That should be awesome!

I hear ya!

Its nice to know I not the only parent with kids that have it out for our blinds. We are currently down to 4 blinds out of 11.

What no iPad?

I can't believe you missed another excuse to showoff! At least I don't think it should qualify as a toy per se. Audrey is with you on the sand, water, and squirrels. Bras? Hmmm...only if they're on me.

Total 12 comments

Slow-Poke-AHontas2

Slow-Poke-A-Hontas: So named for the speed with which she moves when we are trying to get anywhere quickly.

I took a vacation today. Nowhere fancy, and the stay wasn't long, but for about two hours, I took a vacation from special needs parenting.

At first, I didn't know where I was. I mean, I realized that I was at my daughter Willow's preschool for her first-ever Halloween celebration, but I missed the sign that said, “Now entering the Normal Parenting Zone. Please stop hovering.”

School volunteering is old hat. But I'm always there as “Billy's shadow.” I'm so used to running interference, making apologies, settling Billy down, explaining why he doesn't want a candy cane or anything yellow or pudding to eat, that it truly didn't hit me until 30 minutes into Willow's party that she is FINE.

And I felt then what I'm feeling a little of now: Disloyal. The disloyalty came after the overwhelming relief but it was there, surprisingly, under the surface.

I felt like I had defected to another country. In this country, parents don't keep their hands on their children at all times. They stand back against the wall with their cameras, smile at their kids' shenanigans and occasionally glance at their watches.

There were occasional tears or tantrums, but looking into the faces of the parents consoling those children with a slight upturn at the corner of their lips, I saw no sign of the panic of the special needs parent. No, these tears were normal. These tantrums age-appropriate. No one was darting scared, paranoid glances around the room, afraid to see judgment in the eyes of other adults.

Standing there among them, taking occasional snaps of my child participating in the singing and dancing, sitting with her class, eating her snacks and fighting briefly over grapes, I allowed myself to take a few deep breaths and let my heart rate decrease.

There it was. The guilt. I felt guilty that I was enjoying this party more than I had ever enjoyed Billy's school parties. Not that I don't enjoy hanging out with my son – far from it. But school parties are rarely fun for him or us. Crowds of new people, an upset in schedule, weird food, a strange set-up to the room – it can spell disaster.

I felt guilty not just for Billy's sake, but on behalf of all my friends in the special needs parenting community who would never have this experience. I don't think for a moment that they're looking at my normally developing child longingly (particularly when I have two screamers at once). But this morning I felt like I needed to call each of them up and describe the sights and sounds of this whole new world, the way you might describe your first view of the Eiffel Tower or the first time you see a McDonald's menu written in French.

Slow-Poke-AHontas_Dance

Like it or not, I'm a special needs parent who happened to then have a normally developing daughter. Billy made me a parent. He molded my parenting style years before Willow completed our family circle. He taught me to be a better person and showed me that I'm stronger than I believed possible.

Because the demands of parenting my autistic child are so great, Willow rarely gets the undivided attention of either of her parents. She tags along to Billy's school parties, his therapy, most of his play dates, and they do Kindermusik together. And she loves it. There is nothing in the world she adores more than her big brother, her “Bee-dah.” But today, it was just the two of us, hanging out in Normal-town and site-seeing together. Because growing up with her unique brother means that she's just a stranger in this un-strange land too.

We haven't emigrated. At 2:30 this afternoon Willow and I will pick Billy and head to his group therapy. She will squeal with delight at the sight of him. And he will watch the videos from her Fall Festival party, with equal delight, over and over and over again.

For a couple of hours this Halloween, ever so briefly, I dressed up in the guise of Normal Parent. It was fun to wear a costume for a little while. But I know that it's not me.

Reader Comments

Oversharer over here too!

Wow Amanda! I love your writing style. I also love the fact that you embrace the oversharer title as I do! Hello Soul Sister!!

Congrats on a successful Halloween weekend. My heart goes out to you as a mom who shares custody with my former spouse. I am familiar with the feeling of being in one place but feeling a bit of guilt for not being in another.

Keep the stories coming!

I don't think any guilt is necessary - just enjoy the moment for what it is.
Life is filled with unique moments and special blessings - each of them different, but equally important.

this post touched me to the core. I love the way you captured the feelings of all special needs parents. No one is normal...most people's abnormalities are hidden and the Perfect Posse are just good at disguising their kinks.

Adorable! She has fantastic moves! Glad you got to have such a special day with your daughter. I'm sure you both needed it :)

How do you treat a person with a disability?

The above comment reminds me of a PSA from the '80s that said, "How do you treat a person with a disability? Like a person."

How do you treat the parent of a person with a disability? Like a parent, who's presumably doing the best he or she can. If they're obviously struggling, ask if there's some way you can assist. To those who say outsiders are not looking down on these parents, well, many aren't, but enough are to keep us on constant high alert whenever we take our children in public. If you doubt that, search "smockity frocks" AND "autism". She has since apologized, but there are millions more like her. We can never get away from them entirely. Imagine living in fear that someone would call the police and report you for child abuse every time your child ran a fever. Well, the neighbors have called the police on us because our son was having a meltdown, and meltdowns are far more common here than fevers.

How do you treat the parent of a child with a disability? Like a person.

jeanne @ inspiring ideas

What a sweet visit to "Normal Town." Although with kids, I'm not sure "normal" exists anywhere! :-)
I love the brother sister love relationship! What a lifelong bond that will be - invaluable.

This was a beautiful post. I don't have a special needs child, so this was a rare glimpse into something I know nothing about. I hope I say this right and I don't unintentionally offend anyone....

When I hear about parents with special needs children I wonder how I'm supposed to feel. Am I supposed to feel bad for the parent? For the child? Am I supposed to realize how incredibly lucky I am for having a "normal" child? If I feel lucky does that imply that a parent with special needs is not lucky?

I think this post helps clarify that "normal" is really just a relative term. And that we're all lucky, no matter what the circumstances because we have a child(ren) that we love regardless of anything.

FINALLY ...

...someone made fun of the song to which my daughter is bustin' out her Step Up 2 The Streets dance moves for. She seems oblivious to the fact that "backin' her booty up" in a song about "Jesus in the Morning, Jesus in the Noontime" is probably not appropriate. At one point, she kinda started doing karate, so I'm not sure what's going through her head.

And DJ Lance is totally awesome.

Total 21 comments

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