LIFE IS A SPECTRUM

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

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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

S_Train_Bash

Sadly, the train broke down halfway around the baseball field.

This past Saturday was the Bash and Dash at Billy's school, the annual fundraiser for the school. (Let's save for another day discussion of the topic of WHY a public school finds itself in a position of having to hold multiple fundraisers.)

Bash and Dash was great: well-organized, fun, and amazingly well-attended. There were pony rides and train rides and bounce houses and carnival games. That's the "Bash" part of the day.

But we started with the "Dash." There was a race for each age group, including pre-Kindergarten, Billy's group.

We had been practicing "racing" for weeks. I'd shout, "Ready, set, GO!" in the back yard and we'd run from one fence to the other. During his ABA therapy, Billy would race Ms. Elyse, I would race Billy; sometimes Ms. Elyse and I would race each other. We talked non-stop about the race.

I still wasn't sure how it was going to work out. Despite all our rehearsal, whenever he hears "Go!" Billy is just as likely to run towards the closest available toy as he is to run towards the finish line. As usual, I debated with myself: about whether introducing him to the idea of competition at this stage was even healthy; about whether the crowds would upset him; about whether he might actually fall and get hurt.

I was ready to pull out of the whole thing. Then I got a package in the mail.

When I opened it, I pulled out a trophy. It was about 18 inches tall and engraved like this:

trophyinscription

My mom and dad.

I called them, and sure enough, my mom owned up. "I wanted Billy to know," she said, "that no matter what, he's a winner."

And she was right. Plus, I couldn't back out now that they had invested in what Billy lovingly referred to as "The Statue of Liberty."

Race day dawned bright and beautiful, and we arrived at the starting line with several minutes to spare. Several of Billy's friends turned up, including one beautiful girl who marched right up to him and grabbed his hand in hers, as though she sensed he needed a little reassurance.

As we had practiced, Dave stood with Billy at the starting line, and Willow and I went to the finish. When a volunteer tried to move me out of the way, I explained that my autistic son was planning to run toward me, and if I wasn't standing there, he was very likely to head for that little circle of unattended ponies (the pony rides hadn't started yet). I was allowed to stay.

The boys lined up (girls raced separately). When their little legs started pumping, I couldn't believe how excited I was. I was screaming and crying and shouting for Billy.

Even from a distance, I could see he was beaming with happiness. He was looking from side to side at the crowds lining the race path. Crowds. That was something we hadn't worked into rehearsal.

S_Race_Billy3

Billy's in the red shirt!

Rather than run flat-out, he kind of loped along, half-galloping, watching the other kids run in front of him. He likes to chase.

They all crossed the finish line in front of him and I could see Billy laughing with joy. He was happy for them. And he was inches from the finish line.

And then he turned around and headed the other direction.

He was out there on his own, the race was over for everyone else, and he was running the wrong way. I started shouting for him: "Billy, this way! Come this way, baby!"

At that moment, I just wanted him to finish. The other racers in his group were already getting their trophies and medals, and the older kids were already lining up for the next race, but I so wanted Billy to cross that finish line.

S_Race_Billy_Trophy3

No one raised an eyebrow when Billy got the biggest trophy.

Then something beautiful happened. Everyone started joining in. On both sides of the race path, kids and adults were shouting, "Come on, Billy! This way!" And waving him toward the finish line.

Laughing, he turned around. He saw me and Willow. And he started running toward us. As he crossed the finish line and leaped into my arms, there were cheers all around us.

Of course, everyone was proud of the kids who ran the fastest. I would never want to take away from their winning moments.

But at the moment Billy crossed that finish line, we all felt like winners.

Reader Comments

What a gift Billy's parents gave the community that race day. Your boy ran the race but you put your heart on the line.
Billy I suspect with go far.

?

Amanda, I wanted to tell you all a whole buncha lovely compliments, delightful insights, and inspiring poems ... But after I got through reading the 512 comments, my brain has been erased. Love your blog.

Go Billy!

I loved this! Definitely tearing at the end, and so happy he crossed that finish line with the support of a whole community behind him. And what awesome grandparents he has to think of that trophy.

I reposted this on Facebook, and this was my Aunt Connie's comment:
"Wendy, I read this and cried. I, too, cheered this little guy to the finish line. Your friend writes beautifully. You do, too. I love you. Thank you for sharing."

Wendy

Snippets 'N Stuff

I LOVE this! He has awesome grandparents, doesn't he!? :)

Awesom

Awesome from so many perspectives. Hooray for Billy's grandparents. And the other kids in his class. Most of all, hooray for him.

Mandy, I love all your articles, but this one especially touched me today! You are such a special mommy and Billty is such an exceptional little boy. *I'm so glad he "won" - I n our eyes he is a winner every day. God gives special children to special people - I truly believe this.

Yay for Billy! And everyone that cheered him on! This is a great story about never giving up and receiving an award that is much more than a trophy (but the one from your parents is especially nice)! Thanks for sharing such a wonderful day.

Total 14 comments

footstepsbeach

As I write this, it's the middle of the night – about 2 a.m. – and I can't sleep because my nose is stuffed up and I have this annoying scratchy cough. We've been through several restless nights now, with one child or the other unable to sleep due to this nasty cold. Now I have it.

 

I knew three nights ago that I was going to catch this thing. Willow straddled my chest at 2 a.m., nose running, unable to sleep, and after counting my eyes, ears, nose and mouth, she leaned her face very close to mine, took a deep breath ... and sneezed.

 

Ah, well. It's a mom's job to inhale the germs, gather them in our arms and walk the floor with them all night long, if necessary.

 

I wish I'd known about the headache a few nights ago. I should have given Willow Tylenol, in addition to the Vick's Vapor Rub. She couldn't tell me that her head hurt, but if my symptoms are anything to go by, she had a killer of a headache.

 

If Billy wakes up, should I give him Tylenol? I could ask him, “Does your head hurt?” But then again, I can't really rely on his answers for accuracy. Half the time, he repeats whatever words I put his mouth: "Does your head hurt?" Billy: "Head hurt."

 

If I get sick first, I have a better idea how they're feeling when it's their turn. I know what to watch for, what to medicate, how to empathize. I understand why they're cranky and sleepless and angry, because I've been there.

 

It's late at night and my mind is wandering; I'm tired and I've just taken cold medicine, and I'm wishing that autism was something I could catch for a few days. I wonder what it would be like to walk in Billy's shoes, live in his world, feel what he feels even for just a few hours.

 

Maybe if I could think with his brain for a day or two, I could learn to speak his language. And better teach him how to communicate in mine. Maybe I would understand his fear of kangaroos and feel the pain he feels at certain sounds.

 

And food: Is it the smell or sight or texture of some things that makes him physically sick? I would gladly be sick like him to feel what he feels and just be able to tell him, like I do when he has a cold, “I know. Here, this will make it better.”

 

I would love to understand his anger. He is a joyful child, and sometimes his anger surprises and confuses me. It seems to come from nowhere, but I know that's not true. Inside his mysterious and beautiful mind, there is a hidden source of his unhappiness, and I'd like to climb inside there, hunt it down, and deal with it, like I try to deal with the sadnesses and angers and unhappiness that I can see.

 

But most of all, I would like to feel his joy. When he closes his eyes, scoops sand between his fingers, lifts his hands to the sky and belly laughs as the grains filter back to the ground, I would like to inhale that happiness. I would like to dream what he dreams and catch a little bit of the giddiness that bubbles up in him so strongly that he wakes up literally in the middle of singing a song.

I can't walk in shoes. The best I can hope for is to stay close, walk alongside him, so that should he need me, all he has to do is reach out and take my hand.

Reader Comments

Sending You Hugs...

I hope you and your wee ones are feeling better soon...this piece moved me to tears, Amanda...

Wendy

The Guilt

You are so right about the guilt. I hate it. At least when we are ill first we have an idea. I hate second guessing. I am from the UK and my son Ben is 7 and a half years old and severely Autistic. He is non verbal, has challenging behaviour, is aggressive, self harmer etc etc. Over Christmas he was ill and he was really poorly for 2 weeks. I medicated him (we can only use suppositories) and I chose the middle strength. Later my Husband and Daughter were as ill and all they kept saying was how bad their heads were and there aching bodies, that they never felt as ill in their lives. They were diagnosed with flu and I hated myself. I get the same thing with new shoes. Bleeding blisters that I didn't know were happening as there was no wimpering or limping and worst of all he almost choked on Monday ....

Love this blog (I found you on Twitter) and have been reading it as have been up since 3am with Ben.

Karen xxx

So beautifully written. Very touching. I hope you feel better soon. That funk has gone around town at least 17 times already. It needs to go visit a new town. Loved the part about Willow sneezing. Caleb has learned to use his cough as a weapon of mass destruction. He actually premeditates a coughing attack aimed right at your face. It's horrible. I wonder if that's something ABA could address if we ever get our referrals out... =)

Walking with them

@Maura: You're absolutely right my friend. I have friends who have had to walk with their kids through unimaginable pain, all the while, praying that they could take it on themselves. My walk doesn't begin to compare. We all have those moments, though, like you said, when we wish we could take the walk FOR them.

@BD: As my mom says below, we're hoping that Willow has that kind of connection with Billy. She adores him so much, and as I was saying to someone recently, she's the best therapist that money can't buy. I'm waiting for her to get to the point that she can explain the kangaroo thing to me.

@Jen: I feel your pain. It would be great if we could feel theirs. It seems the least we moms of kids on the spectrum should be able to expect is a little bit of telepathy.

@Gina: Thank you for your words. That means a lot to me.

@Nan: Billy's lucky to have you. I've met so many parents of kids on the spectrum who are doing it alone, and I'm very lucky too to have a mom who has been walking with us all the way.

@Domestic Goddess: Tru dat.

@Jen: You bring up a very good point. I would hope that I would be able to relate more, but if there was nothing I could do to help, that would be a curse indeed.

I really appreciate all the support and feedback. It's been a long week ... but I know we all have those :-)

FYI, Today was the 14th day since I emailed Disney about our New Year's Eve troubles at Hollywood Studios. I received the automatic response saying that someone would contact me within 14 days, but as yet, I've heard nothing else. Watch this space ...

Guilty

I recently had a similar experience with catching a cold after the kids. It was a nasty one and I felt terrible for being so frustrated when the kids weren't sleeping! Oh well, there's always something to feel guilty about :(

To be in our kids' heads even for a day - I think it would be a blessing and a curse, especially if there still wasn't anything more we could do for them after.

I'd do anything, ANYTHING to get inside my kid's head. Just for five minutes. Just so I could understand.

FWIW

GL always denies pain. Even post-surgery, he insisted he had no pain. But when he is angry for no apparent reason, it's amazing how often Tylenol improves things. I figure when he's showing signs of distress of unknown origin, the recommended dose of Tylenol won't do any harm, and might help.

Beedah's 6th sense

I've always said that Willow will be Billy's best teacher/friend/guardian as they grow up. She adores her Beedah (brother) and makes every step with him. In time, she will be a big help to him and to you in understanding him, I'm sure. You are an outstanding mother.....and writer.

Total 12 comments

peas

You have no idea what I'm willing to do for my kids' nutrition.

If you'd seen me in Sonny's Barbecue at lunchtime recently, you would have felt sorry for me. You might have thought that the whitest girl on the planet was auditioning to be one of Beyonce's backup dancers ... in a barbecue restaurant, for some reason.

But my goal wasn't VH-1 stardom. It was to get my son to eat chicken.

When my kids came along, along with the last shreds of my career and my pre-baby body went any sense of shame. I'll make an idiot out of myself to end a tantrum and get a smile. And to get Billy to eat? Well, let's just say I've ruined barbecue chicken for a good portion of Northwest Florida. Billy is the only person alive whose appetite is increased by the sight of my booty dance.

I know some of you are probably thinking, "Maybe you could try just being a better cook." But since that isn't going to happen, we've been going with the dancing.

It's working, though. Last night, Billy ate an actual serving of PEAS!

I'm not talking about peas disguised as something else, peas mashed up and hidden under something else, peas baked into muffins (yes, I've actually tried this – don't recommend it). I'm talking about real, honest-to-goodness straight-out-of-the-can (do they come any other way?) green peas.

S_billyartraisins

Favorite food: raisins

Like many parents of autistic kids, I have become semi-obsessed with food over the past few years. Heck, who am I kidding? I've been semi-obsessed with food most of my life.

My recent food obsession has less to do with fitting into skinny jeans and more to do with seeing that my son gets slightly more nutrition than what is contained in a Pop-Tart.

When Billy was a baby, he would eat anything. About the time he was supposed to move up to chunky foods, though, he started rebelling. Looking back, it should have been a sign, but we just thought it was hilarious when he would suck the cheese off macaroni and spit the noodle out.

He got to the point at which he'd eat macaroni and cheese, but that was just about all. For a while, his entire diet consisted of cheesy mac, cheese sandwiches, raisins (don't ask me), chicken nuggets and fish sticks. Oh, and peanut butter. Big fan of peanut butter.

An unfortunate symptom cropped up about this same time: When he watched other people eat something, particularly if it were some food he disliked, he would upchuck. Hurl. Any time, any where. It was almost as though he empathized so totally with the person he was watching that he imagined that he was eating the food. And so he did what he would have done had anyone stuck a blueberry in his mouth.

We were introduced to the concept of the gluten-free, casein-free diet and tried that for a while. After all, it made sense. If there were ever a child who had self-limited his diet to carbs and dairy, it was my son. The idea that his food might be serving as a kind of drug to him made enough theoretical sense that we decided to give it a shot.

That was six months of living hell. I am not a cook, but I home-made chicken nuggets and fish sticks every week with gluten-free bread crumbs. (My homemade fish sticks bore an unfortunate resemblance to something you might find buried in a litter box.) I baked gluten-free bread and bought expensive casein-free dairy products. The ninth circle of Hell for me would involve being locked away somewhere endlessly rolling up stuff in gluten-free bread crumbs.

chreese

Get it? Chreese?! Sounds like trees? Cause that's appetizing on your macaroni. (Appetizing = so gross)

We took food with us everywhere we went. Wanna see some black looks? Start unpacking your own picnic at a fancy restaurant serving Mother's Day brunch.

After six months and no real behavior changes – other than those you get when a child ages six months – we slowly started adding first gluten and then dairy back into his diet. Still, we saw no behavior changes.

Now I'm not saying that I don't believe the diet works for any autistic child. It must: There is a certain portion of the general population that is intolerant to dairy and a small portion with celiac disease. It stands to reason that some autistic people would also suffer those intolerances. When you feel uncomfortable – whether you're sick or tired – it affects your behavior. When Billy's sick, things can go completely off the rails: the echolalia gets worse and he's in a bad mood. I absolutely believe that a child with an intolerance to wheat or dairy would feel much better – and behave much better – if those irritants are removed from his diet.

Billy's just not one of those kids.

We decided to make new foods one of our ABA goals. At the prompting of our awesome therapists from BMC, we implemented an eating routine:

At the beginning of every meal, Billy is offered a non-preferred food (non-preferred = loathed), such as corn or peas, in five super-tiny bites on a separate plate. Next to that plate, is his preferred food. For him, that's ice cream in a little cup. For every bite of the non-preferred food, he gets a bite of ice cream. After he finishes his corn (or 15 minutes are up, whichever comes first), then he gets the rest of his meal (bring on the cheese sandwich!), followed by the rest of his ice cream.

For a few weeks, every dinner (we only did this one meal a day) felt like the opening scene of Saving Private Ryan. But he ate his tiny bites in order to get his ice cream.

I was so excited by his progress that when the therapists weren't there, I added extra rewards for each bite: a YouTube volcano video for every bite ALONG with the ice cream, a few minutes on the iPad, and then, I started dancing.

The dancing had a miraculous effect. He started laughing and eating things that prior to this had made him scream like he'd been poisoned. He ate pizza and peanuts and barbecue chicken. He suffered through bananas, though we've since decided he just doesn't like them – which is fine.

S_BillyBday10_LUN2

I'm trying to figure out a way to disguise nutritious food as birthday cake.

My dancing got more elaborate – until the day our ABA team put the breaks on it. Apparently, dinner isn't supposed to become a poor off-Broadway musical. And apparently, it could cause other problems later if I had to follow him around everywhere doing the Roger Rabbit or The Sprinkler. He's going to have enough challenges in the school cafeteria without having to explain that to his classmates, I guess.

I was convinced that the second I stopped entertaining him with my nightly one-woman show, he would stop eating. In my mind the only thing motivating him was my Humpty Dance.

But no. Ice cream is apparently as motivating as The Worm. Which is probably no bad thing. I got close to injuring myself a couple of times.

One of the biggest realizations I'm come to through this process is that Billy's self-limited diet was, in his case, behavioral and not related to any physiological problem. That being said, I think he started limiting himself because he used to suffer much more pervasive sensory problems related to smell and taste and texture. So we take it very slowly.

And it's been great to see him add things to his diet that he has discovered he likes. I don't force him to eat. I encourage him to eat. My job is “attaboys” and the ice cream currently provides the motivation to try.

Our New Year's resolution has been to eliminate the words “stick” and “nugget” from our kids' diet, to eat fresher, less processed food and to try and bridge the gap between “Billy” food and our food. It's been more successful, more quickly than I could have imagined. Tortellini has replaced mac-n-cheese; soy nuggets have replaced those containing Frankenchickens, and vegetables are easing their way into the rotation on a small scale.

I still occasionally break out my Cabbage Patch, but now we save that for dessert.

Reader Comments

LMAO

This is hilarious; that 9th circle of hell line: GOLD!

We tried the diet, too, but not nearly as long as you did. I just didn't have it in me to keep it up for very long, especially since at the time the only thing he would eat was Mac & Cheese and this was before GFCF stuff was trendy so there was no rice pasta alternative. Luckily it made no difference, I can't even imagine being GFCFSFEFWFTFRFQFFF

Sprinker vs Grocery Cart

Aww! Look at that face?? He's lovin' it... Ok, so you do the sprinkler, I'll do the grocery cart and he may just eat an entire thanksgiving dinner! Btw, I once heard of a kid who would only eat when he was sitting on his dad's shoulders. So every morning for breakfast the kid would sit on his shoulders balancing a bowl of cereal on his dads head... so when you put it all in perspective, you don't have it so bad!! ha! Good luck!

Cheesy Mac

Oh, Amanda, I can really relate to this. Lately, I can't talk Henry into eating anything but carbs. But I have someone to blame; me likey the carbs myself.

I'm so glad you're having success. Peas? That's a real milestone! If your dance is working the magic you're describing above, then I'm going to have to insist on a vlog where you show us the steps...

Please come over to our house and dance... ;)

Peas!

Have you tried frozen peas with Billy? Canned peas make me want to upchuck...gross!

One extra benefit of the dancing is all the exercise you're getting!

Wendy

Hmmm....

You MUST do the Cabbage Patch for me!!!! Bahahahaa...love it! Great post. =)

I'm so glad he ate peas! What a victory! My husband is gluten free, and for awhile we tried going dairy-free, too. It was REALLY hard. It was a relief when we realized dairy doesn't affect him.

Apparently, I need lessons...

I tried the dancing thing tonight and for all my efforts, there is a stone cold pork chop sitting on my table... my son was not impressed at all. I am thinking we need video of the dinner dancing! On the bright side I laughed myself silly reading this post! This is so our life right now!

Total 14 comments

Quite a few mom bloggers took a hiatus, or at the very least slowed down their productivity, over the summer. That's one of the reasons The SITS Girls are hosting a Back2Blogging challenge this week. Many of our kids are in school (I'm writing this while Willow naps) so it's time to build some writing momentum.

Electrolux-Set

I want them!! (Thelma and Louise)

AND we get entered into a sweepstakes to win the lovely ladies directly to the left, Thelma and Louise. As my dryer just broke and I've been hanging laundry out to dry all over the house, I would really like to bring either Thelma or Louise (whichever one is a dryer) into my home.

So each day there's a different writing prompt: Today, we're supposed to republish our first-ever blog post.

As soon as I read that, I got kind of a funny feeling in my stomach. I remember that first post. I actually wrote it long before I had a blog. I can't even remember why. My son's autism diagnosis was still new, and the “A” word still had a bitter taste in my mouth:

“Saying the A Word”
(Posted August 2009, written January 2009)

For the past 18 months, we've been chasing a diagnosis for Billy's delays in speech, his differences in motor function, his quirks of personality. My emotions have run the gamut from an extreme skepticism that there's anything "wrong" with him to a growing fear that our early doubts are entirely justified. I've worried, cried, screamed and pleaded with insurance companies, prayed, laughed at myself, and started the process all over again.

Actually, if I'm completely honest with myself, what I've been looking for the past 18 months, is an expert who will say, "Your son is definitely not autistic." I would demand of the therapists and doctors, "He's not autistic, is he?" because to me, that meant the end. That I would lose my son. That he would slip away from me and lose his smiles and affection and love of life -- all of which he has in spades.

S_FB_MAndiBilly

Ignoring my crazy eyes and too-long sister-wife hair, the point of this pic is that it was difficult back then to get Billy to look at us.

Well, Billy's three now, and he's not slipping away -- but some of his differences from his peers have become more apparent. He's a bright, beautiful, extremely funny boy. He has an amazing memory and vocabulary. He can answer the question, "What is that?" almost every time. He recognizes animals, plants, people, the planets, food ... but he can't tell you what he did today, what he likes to do, what his name is. He doesn't ask any questions. He spends most of his time repeating entire books, the dialog of a whole cartoon, the question you just asked him.

I know what you're probably thinking: "All kids develop differently. Don't worry about it. Let him develop at his own pace ..." Believe me, I've heard it all. I've said it all to myself.

He can sing beautifully -- perfect pitch and rhythm -- has a catalog of over 100 songs that he knows, and he loves to dance. But he'll have a complete meltdown if you touch his head or offer him anything to eat except macaroni, oatmeal or chicken nuggets. A symptom of his sensory processing problems is his *extreme* clumsiness. It's like he's always looking at where he wants to be, rather than where he is, and he'll fall over the huge coffee table -- which he doesn't see -- in his desire to get to his ball on the other side of the room. He didn't see the edge of the slide, and he fell off and got himself five stitches.

It's not traditional autism. Or at least what I've always believed autism to be. He's loving and affectionate and emotional and funny. But communicating is incredibly difficult for him. It's like he has all this information locked inside him, and he can't make sense of it. So what comes out, instead of what he wants to say, are these things that he's memorized.

So on the advice of a neurologist, we went for an MRI. It was a harrowing experience. The drug they gave him to sedate him had hardly any effect, and when they put in an IV, a meltdown of Armageddon proportions commenced. The results of the MRI: nothing physically wrong. So we get our diagnosis: autism.

I asked our OT, "Is that what autism means now? A lack of brain tumor or seizure disorder or stroke? None of that and you're suddenly autistic?"

She was kind when she responded to me. "No, Amanda. There are benchmarks for communication delay, motor problems and behavior issues -- and Billy meets all of those."

Oh. OK.

I can say it: My son is autistic.

I'm lucky. He's only mildly autistic. Most of his problems are sensory-related. And she's quick to point out that with therapy, he probably has a very good shot at a complete -- or near-complete -- recovery. That's a word that didn't used to be used with autism.

I don't know why the word bothers me so much. It doesn't change the person that Billy is. He's more than a diagnosis. He's a fantastic boy that any mom would feel lucky to love. I guess it's kind of like the way I don't want anyone to know my weight. The number doesn't make me fatter, but I'm not exactly going around with it scrawled on my forehead.

Every day I question every instinct I have, every treatment decision I've made for Billy -- every decision I make full-stop, for both my kids. But I'm starting to see that that's just part of being a parent.

But the A-word doesn't scare me any more. Much.

___________________________________________________________________

S_Billyalien

It's still not easy, but sometimes he loves the camera! And the camera ALWAYS love him.

I first posted this in August of 2009, but I had originally written it nearly 8 months earlier.

Now I read those words and the anger and fear is familiar to me, but I don't feel that way any more. My recent post, “Life is a Spectrum” is a reflection of how far we've come and how we managed set down a lot of those burdens of anger and stress along the way. It's such an accurate reflection of where we are now that I decided to change the blog to that title.

A few thoughts:

I would never use the term “mildly autistic” to describe Billy any more, nor to I talk about “recovery” any more. You don't "recover" from a differently wired brain. Billy is autistic. His brain is wired differently, in some amazingly wonderful ways, as well as some ways that cause him communication challenges. He's very highly functioning, but that makes him sound like that fancy washer or dryer and doesn't do justice to the fascinating child he is.

I realize now that saying Billy didn't have “traditional autism” was just my way of showing how ignorant I was. There are as many ways to be autistic as there are to be human. And my loving, funny, brilliant, gorgeous, HAPPY son is living one of them.

Also, I now know how much I weigh. Once you've faced your greatest fears for your children, stepping on the scale isn't nearly so scary any more.

Thanks to SITS Girls, Standards of Excellence, Westar Kitchen and Bath, and Florida Builder Appliances for this little moment of time travel. It's nice to be reminded of how far my brave little man has come.

Reader Comments

The A-Word

I remember when we used to refer to my son as "mildly" autistic or use terms like, not "traditionally" autistic. It only took you 18 months or so to realize those terms are kinda silly and there is nothing to be afraid of the words, "My son is autistic." Congrats. It's funny, nowadays I sometimes use words like "profoundly" or "significantly" to describe my son's autism. Strange how 12 or 13 years change your persepctive. If you win the washer dryer, I'll be swinging by to run a couple of loads.

Comment

Wow what a touching first post. I am sorry you had to go through all of that but I am glad to hear he is doing much better. Look forward to following your journey!

Time Travel

Breathtaking post, Amanda. I say you've earned that washer and dryer.

The A Word

You've come so far so fast. I used to say all of the same things. It's good that you wrote that early on so that you can go back and see how far that you've come. Recovery is not the right word, but it seems like Billy has a great prognosis. All we want for them is to be able to live independently and be a fully functioning (just like the W/D) member of society. If that happens, I don't care what they call them.

Total 4 comments

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