LIFE IS A SPECTRUM

Two steps forward, one step back.

BillyB-day_VHappy

It happens. Sometimes it feels like one giant step back. Sometimes you wonder whose feet are being used to measure these steps. But rest assured, you will start moving forward again.

Let me explain: At the beginning of the summer, my son morphed into the Tazmanian Freakin' Devil for about three weeks or so. It wasn't his fault. He went through three or four different viruses, back-to-back and felt like crap for the better part of a month.

We had little-to-no schedule that month, since Billy's sleep patterns and energy level were affected by fevers, itchy hives and nausea. We were quarantined so that other kids wouldn't catch his highly contagious “cattle” virus, and we watched too much TV, ate too much sugar and got too little exercise and fresh air.

By the end of that month, he and his sister were both like a couple of feral children. And I was like that Golum character in Lord of the Rings, hiding from the light and fighting them for “my precious,” which was usually an ice cream sandwich or the remote.

As we approached the end of June and I was constantly complaining about raising a hobbit, I had a couple of experienced autism moms tell me, “Sometimes there's a period of bad behavior right before a big cognitive leap.”

And I thought, “Yeah, right. Then he's about to start doing calculus.”

So we actually started our summer around the end of June, and I did what I always do when I'm stressed and scared of the job of parenting: I started organizing. We had an obsessively structured schedule -- illustrated on a picture schedule -- field trips, craft projects, and group communication therapy on Thursday afternoons.

Occasionally, a giant happy face would show up on the picture schedule. That was Mama's “happy hour” (actually15 minutes) when I would lie on the coach, moan softly, pray and peel “Finding Nemo” stickers out of my hair.

I walked him and Willow almost daily to the campus of his new school, which was just around the corner (yay, Buck Lake!), introduced him to the playground and drew chalk graffiti on the basketball court. During our day, I tried to use language and activities that they used in school, so that he wouldn't forget the meaning of phrases like “circle time,” “table toys,” and “don't rifle through the teacher's purse.”

We had goals: potty training, improving handwriting (as in having some handwriting) and getting him out of his house bed.

The first week, I felt like I was trying to teach a wild badger to write his name. He protested almost everything almost all the time. When I brought out the Handwriting Without Tears sticks, he would scream, “Throw them in the garbage!” At first, I begged him to participate. Then I gave up and we played a game of throwing everything in the “garbage,” which was actually a big toy box.

To be honest, the next six weeks are kind of a blur. I have a vague recollection of breaking up fights, going bowling, visiting the museum and scaring the fish at Petsmart. And I have a few scars as reminders of incidents that resulted in some of my most interesting “Mom injuries.” At some point, he stopped using his HWOT sticks as weapons and learned to write pretty much every letter of the alphabet. And a week before school started, he was sleeping in a “big boy bed.” Occasionally, inside a net laundry basket, but he was in the bed.

We made some serious progress on potty training, but we're not totally there yet. He's still dealing with some communication barriers. Communicating the concept of something that's about to happen is a step he's yet to make – but he's getting there. I'm not stressing over this one.

Because we had breakthroughs that we never expected. We had a breakthrough bonanza this summer.

His imaginative play made huge strides forward. He uses more functional (non-repetitive) language than ever before, and he's telling us about things he did during the day, things he likes, emotions he feels. He's telling us in very simple sentences, but the sentences are his own – not Charlie Brown's or Nemo's or, the tow truck from the “Cars” movie.

He knows the alphabet, numbers to 20 and a few nursery rhymes in English, Spanish, French, German, Japanese and Hebrew. I'm not exaggerating.

He can put on his own socks and manage his potty process almost completely independently. He started eating turkey. He can draw a person and a spider and a house and write his name and the word “Mom.” He knows all the words and motions to “The 12 Days of School” and can do a pretty hilarious Boston accent.

He used to completely melt down if anyone went anywhere near his head, but he now lets us wash his hair. And (HUGE MOMENT FOR US) he endured a salon haircut without a meltdown!

He enjoyed his birthday! And made friends. He got a scooter and can ride it so well that he's now cutting doughnuts in the living room floor. From there, he moved on to riding his tricycle – a process that frustrated and upset him as recently as this past May.

Most of this seemed to happen almost overnight. It really was like a breaking through process. Maybe there really is something to the theory that a cognitive leap is preceded by a period of bad behavior. Maybe the last two years of therapy prepared him to make this big jump. Maybe it's all down to what my dad calls “scooter therapy.” I really don't know. That's all part of the autism puzzle.

But I'm writing all this not just to brag about my super-awesome son. I want you to know that a change is gonna come. Usually, the changes are so gradual and steady that you might not notice them. You'll just suddenly find yourself looking back on a picture of a day a year ago and thinking to yourself, “Wow, this year he didn't kick any of the pumpkins from the pumpkin patch into moving traffic. Score!”

But sometimes, a plateau will come. Or maybe worse: You'll feel like you're taking a step backward. Behaviors you haven't seen in months pop back up and a couple of positive things seem to disappear.

Absolutely mention these things to your therapist(s) and teachers and other people on your team. They may have some thoughts about what's going on. And talk to other experienced parents and caregivers. Chances are, they'll tell you they've seen the same thing, and that it'll pass. They'll tell you what I'm telling you: Don't panic. Keep doing what you're doing.

And when it does pass, you might find yourself gifted with some new, glorious breakthrough.

Billy's had a great couple of weeks at school. He's also had some bumps on the road. The first couple of days of school, we heard all echolalia, all the time. I was suddenly living with Leo from The Little Einsteins – and he's not even my favorite Einstein. There were so many changes, Billy was stressed – both good and bad stress – and he didn't really know how to deal with it.

There was a time when I would have run screaming to the nearest snake oil salesman to try and devise some crazy rain dance to make the echolalia go away. And there are times, during the dark night of the soul, when I'm still tempted in that direction.

But by the end of his first week, Billy was napping at school, participating in activities, and climbing in my lap at the end of the day, wrapping his arms around me and whispering, “Love you, love you, love you...”

Hang in there. On the other side of this bump in the road, there may be something beautiful.

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Breakthroughs

That's a great message Amanda. We've certainly never experienced a burst of breakthroughs like you describe but it good to know that it's possible! Progress with Audrey has always been pretty glacial so that we can only see it from year to year most of the time. Like you describe with the pumpkins... The different seasons and holidays are good benchmarks. Will she say what she wants to be for Halloween? Will she be able to handle the overstimulation of Christmas compared to last year? As long as we are moving forward I've learned that I can't get to hung up on the pace.

Breakthroughs

This summer was a particularly good one for breakthroughs -- and they all happened near the end. We had never had that happen before. Suddenly, Dave and I found ourselves just sort of staring slack-jawed at Billy as he asked us questions, rode his trike, tried turkey, easily moved into his big boy bed -- there seemed to be a little progress in almost every area. We almost didn't want to mention any of it, for fear that we would jinx it somehow.

We have learned one thing about him: He likes to do things on his own, rather than under pressure and on command. Not that we didn't know that at all before, but we found out over the summer how much he could actually accomplish on his own.

The start was the scooter. Unlike the trike, we never pressured him to ride it or taught him how. He rode it when he wanted, how he wanted, because to be honest, neither of us are even capable. All of a sudden, he was whizzing around like a trick rider.

We decided to try that technique with the trike. We backed off entirely and just left it in an empty room where he could find it and ride it if he wanted to. Sure enough, within a couple of days, he came peddling it out into the dining room.

I'm not sure that the "leave him alone and let him teach himself" approach will work with everything but it's given us a new perspective on where his deficits lie: In some cases it's not the physical ability so much as the emotional stress and pressure to perform that's the problem...I think.

Total 2 comments

"There was never a child so lovely but his mother was glad to get him to sleep."
-- Ralph Waldo Emerson

BillyHouse08

An old picture of Billy in front of the "house bed."

My son's in the closet.

Literally. Right this minute he is sitting in his closet with the light on. Playing with socks.

For the last couple of years, he's had this bed that looks like a little playhouse. It has a top bunk. Ahem, it had a top bunk. Now it has a messy storage area full of crap we try to keep out of his reach. Like the ladder to the top bunk.

Billy sleeps in the bottom bunk, inside the house. And for a couple of years, we had to lock it to keep him from getting up at night, turning on the stove, starting the car, or any number of other horrors that went through our heads. The staircase in our new house, also known as the “death plunge,” is so steep I practically have to rappel down it. Sometimes carrying two children. I now have the quads of one of those guys who can pull a tractor with his teeth.

So you can imagine why we didn't want him capering on the staircase in the dark. At the best of times, Billy's progress down a flight of stairs looks a bit like those guys who chase a wheel of cheese down a hill (it really happens – in Dave's home town).

Baby gates don't work. He uses them as hurdles. They keep my mom off the stairs, but even Willow has figured out how to open them.

But we decided that this summer, after his fourth birthday, it was time to set Billy free. We committed ourselves to taking him to the bathroom each and every time he exited his room, which we were sure would be frequently, at least to start. But we theorized, at least he would learn that if he needed the potty, he could leave his room and find Mama and Daddy.

We opened the door of the “house bed,” as we call it, and Dave took the first shift, stationing himself outside Billy's bedroom door, between him and our Black Diamond slope. He was told, in no uncertain terms, that any time he left his room, he would have to go to the potty.

Thirty minutes passed. No Billy. Then forty-five.

Dave put his ear to the door. He could vaguely hear something, so Billy was awake. He pushed the door open and could see a light on under the closet door.

He flung the door to the closet open and a wide-eyed Billy stared up, from his perch on a mountain of white socks. “Back,” Dave commanded him, and Billy dutifully returned to his bed.

I won't bore you with the repetitions of this scene that took place every 15 minutes for the next two hours. We threatened, we locked the closet door (Billy's closet door locks from the outside; we have no idea why – something left by previous owners – we assume they kept rabbits or embarrassing relatives in there). But every time he returned to the closet, pulled out his sock drawer and went to town.

The next night we started the process all over, no longer bothering with sitting outside his door. Clearly, he had no interest in anything outside his bedroom.

On my first “shushing” visit, as we call it, I found him in the closet, wearing three pairs of socks on each foot and pulling on another. Startled, he threw all the socks into the air and ran for the bed.

Take two: Billy hears me coming and runs for the bed before I get to his room. I know what he's been doing because when I enter the room #1: The light is on. And #2: A cloud of white socks comes flying out the window of the house bed, like a junkie trying to get rid of his stash:“I don't know whose #%*@ socks those are, officer. Don't try to pin that #%*@ on me!”

Take three: I find him in the closet, wearing enough socks on each foot that he could safely walk on hot coals. He looks up at me with those big blue eyes welling with tears and says, “Hug,” holding out his arms to me. He's wearing at least six pairs of socks on each arm.

At that point, I gave up. I told Dave he could be the bad guy for a while, because I could no longer keep a straight face.

I woke up at about 3 a.m. that night and had a crazy, obvious, miraculous thought: He put on his own socks.

He put on his own socks. We've been trying to get him to do that for two years! How did that not occur to me?

I fell asleep with a big grin on my face, realizing my glass was, indeed, half-full. My sock drawer might be empty (everyone's sock drawer is now empty, as this temporary obsession has spread throughout the house) but my cup runneth over.

Reader Comments

I love...

That you find such happiness in parenting, from what at first seems as an awful situation, and then write about it and share it with the world :)

Thank you, Maureen :-)

I hope that by writing this blog one of the things I can do is show people that there are a lot of different ways to be autistic. While we certainly have our challenges (and what parent of ANY child doesn't?), most days are full of laughter. We don't mourn; we feel truly blessed. Quoting another parent of an autistic kid -- and I've forgotten exactly which one -- "I feel like I won the lottery when I became his mom." Truly. I can glimpse the world occasionally through the eyes of this brilliant, unique little soul who sees things an entirely different way than those of us who are "neurotypical."

I have no doubt that there is an amazing path ahead of Billy and his unique gifts will prepare him for it. Autistic people, both children and adults, can and do make essential contributions to our society. Look at all Temple Grandin has accomplished. Her ability to see the world in pictures helped her revolutionize her industry.

And one day, the cure for cancer or AIDS or world hunger might take more than just a really intelligent scientist working hard. It might take a unique way of looking at the world that one of our autistic friends can provide.

In the meantime, I -- and thousands of other autism parent bloggers -- hope to help the world understand and accept our special children.

Thank-YOU

I just wanted to pop by to give you a (hug). First of all I want to thank-you for listing our blog as one you love! (Blush)
Secondly I wanted to say thank-you for leaving a comment on the Brown Bear post from today!
You seem so happy despite the circumstances and that is simply wonderful!

Have a great day!

Same Lake, Same Boat :)

That is a great story. Had to chuckle as we have and are still in the same boat. My husband and I had several nights of taking turns on "Nate duty". It has been close to 2 years now that "Nate duty" is no longer required. Be encouraged, there is a light at the end of the tunnel! (I never thought I would be able to say that since our nights used to be so rough.)

Our children are absolutely amazing. Every time I spot another autistic child I have to fight back wanting to run up and hug them. (That wouldn't go over well. Haha) Nate has changed our world in such a wonderful way. There is no way I could be the person I am today without him in my life. He is my wonderful catalyst for change. I can tell that your son has done the same for you!

I hope to meet you sometime, if I have not already met you at a local support group.

Rachel Peck
www.FindingNathaniel.com

Total 4 comments

If you look around our house these days, it looks more like we're digging in for the nuclear winter than preparing for summer vacation. But getting ready for a holiday period with an autistic child, a period with schedule and scenery changes galore, is a bit like going to war. The options include Extended Year Services through the public schools, a new preschool, or developing a summer program of our own to implement at home.

SMALL_Billy_Mudpile4

I don't mean to suggest that we're going to war with our child -- or even with autism, with which we've made a comfortable truce. We're battling “regression,” a term with which every parent of a special needs student becomes familiar eventually.

When the school system – most likely your IEP team – makes a decision about whether or not your child should have Extended Year Services (EYS), their concerns about regression play a big role in that decision. “Regression” refers simply to losing skills your child has attained throughout the year. (I wrote an article about EYS for the Special Needs Examiner, which you can read if you're interested in summer services, but for a variety of reasons, we decided that Billy was better off at home over the summer.)

Billy could happily spend the summer in the middle of a pile of mud with us occasionally throwing fish sticks in his direction. But we want to make sure that the stress of the summer schedule changes doesn't cause him to lose the ground he's gained in academics and life skills this year. Dave and I sat down and talked long into one night about our hopes for the summer, and eventually boiled down our goals to three simple ones:

Potty Training: If you have any suggestions at all in this area, I will pay you for them.

Sleeping: We want to get Billy out of his elaborate enclosed crib-style bed and into a “big boy bed.” Again, suggestions? How do you keep them in the bed if they don't want to stay there? Currently, he goes to bed each night at 7:30 p.m. but stays awake sometimes for an hour reciting books and TV shows and singing the soundtracks of every Charlie Brown holiday special from “Happy New Year, Charlie Brown” to “A Charlie Brown Christmas.” If he weren't in an enclosed bed, he would probably run around his room all night long. I guess we'll find out soon enough if that's true ...

Handwriting/Drawing: Billy has made HUGE strides in this area this year. At the beginning of the year, if handed a crayon, all he'd do is peel it or perhaps chew on it. Now he can write his name, copy some letters and shapes, and he really enjoys drawing.

We wanted to build on that interest and success, so we invested in a couple of different products. The first, “TV Teacher/Alphabet Beats,” is a DVD-based handwriting program recommended by his private occupational therapist. I wrote a detailed review of it here. Billy loves the little rhymes and songs, and I credit “Ms. Marnie” with teaching him to draw a spider.

When we attended his end-of-year conference at school, though, we were introduced to the program he's been using throughout the past year. A really impressive mult-sensory program, “Handwriting Without Tears” addresses what I'm told is one of the biggest problems with special needs kids and handwriting: They get frustrated because holding a writing utensil is difficult for them, so they can develop an aversion to handwriting and just refuse to do it.

“Handwriting Without Tears” doesn't even require them to touch a writing implement until they're ready. Instead, they learn to form shapes and letters first with wooden pieces and then Playdough. Then they move on to magnetic letters on a magnetic erase board before eventually moving up to a slate and tiny pieces of chalk. There's an easy-to-follow teacher's (or parent's) guide and a workbook with fun pre-writing exercises in it.

Despite all the pieces and parts, “Handwriting Without Tears” is actually less expensive than the “TV Teacher” program. For a complete set, both are going to run in the $100 range. However, you don't have to buy every piece at once.

We're going to use a hybrid of the two over the summer. Billy likes to watch the DVDs and draw along with Ms. Marnie, so we'll let him have that as a reward. And for 5-10 minutes each morning, we'll work with the tools in the “Handwriting Without Tears” program.

Who knows? Maybe by the end of the summer, maybe Billy will be writing this blog for me. Wish us luck! (And I'm serious about those potty training ideas – PLEASE post them here!)

Reader Comments

Potty Training

I have no experience potty training boys. This worked for my girls. During the warmer months, let them run around with a t-shirt on. No underwear, diapers, or pullups. Prepare to clean up a lot of messes. Have your choice of potty readily available. We used a regular toilet with a seat over the top to keep them from falling in. We used a reward system that consisted of stickers, toys from the dollar store, and lots of hugs and praise. Through trial and error, the girls learned to listen to their bodies. My younger daughter (who has the delays), wasn't potty trained until 3 and 1/2. I really don't think that she had the muscle control, nor the awareness until then. I hope this helps!

Sleeping

I had to sit outside my son's door for a week to get him to stay in his bed but after that he pretty much started going to bed and staying there. We still have problems sometimes, but not as bad as that first week. It's going to get worse before it gets better but stick with it and stick with his routine and he'll get it.

Potty Training & Big bed

Amanda.. what have you tried so far with potty training? As for the big bed.. we got him one over a year ago, and at first it took him a while to stay in the bed, and "get" that it was time to sleep.. maybe 2-3 weeks.. but after that, he just got it, and stayed there and went to sleep.

From Amanda Broadfoot

Hi everyone! Thanks SO much for the input!

Leah: I think Billy may have lacked the muscle control until recently too. But he has just started sleeping (mostly) through the night without wetting his Pullup, so I think we're finally ready. Now that school's letting out and I'm going to have him at home, I'm going to give that technique of letting him go naked a try.

Sarah: I'll be honest: we haven't tried anything with real consistency. He does have a picture schedule for the potty and understands -- and can complete -- every step of the process by himself. The problem has been getting him to WANT to. The second I bring up going to the potty, he hits the floor screaming. Once we're there, he goes through each step (except poop - we haven't had any poop on the potty yet) by himself.

But I think we've come to understand over the last few weeks that he needs to feel more control over when he goes. A couple of times, we've left the door open to the bathroom and let him wear "big boy pants" and he actually went to the potty on his own! Also, at school he goes at VERY predictable times. It's on a picture schedule and he has a timer and he knows exactly when he's going. AND he doesn't give them a moment's trouble about it.

His speech therapist at school suggested a social story explaining that usually we go to potty on a schedule but "sometimes we have accidents" and that's when we have to go to the potty unexpectedly. And then have a picture of the potties that we sometimes have to use: at therapy, at a fast-food restaurant, etc. I'm going to create this social story this week, and I'll let you know how it goes.

Thanks again everyone for chiming in!

Potty training video?

Have you tried getting a potty training video for him? As much as he loves his shows, maybe a video about potty training would be helpful???

Potty training video

His wonderful aunt sent him an awesome Elmo potty training video, which he and Willow are now both obsessed with. I'm hoping this translates to impending potty success. Watch this space ...

Total 6 comments

Five things I liked this week ...

5. Martha Stewart Baby: Sleepytime

Most parents spend at least half of their waking hours obsessing about their kids' food, poop or sleep. If you have a child on the autism spectrum, you can double that time commitment -- at least. We've been on a sleep-obsessed phase over the last few months. I'm a firm believer in bedtime routines and using music as a wind-down cue. Music always works well as a cue for Billy: He has an "All done" song, a "time to go" song, a "taking turns" song, etc.

We've tried a variety of lullaby CDs to set the mood for bedtime. Most of them are just unbearable after a few hundred listenings. Too cutesy with drive-you-bananas-stick-in-your-head melodies is a common problem -- not what you want before bedtime.

My mother bought Sleepytime as part of a batch on eBay, and it has been our go-to bedtime music ever since. Beautiful modern soft folk-rock from the likes of Allison Krauss, Natalie Merchant and Barenaked Ladies, the songs can bear repeated listening without making you want to throw yourself into moving traffic. In fact, I ripped the CD on to my iPod and have actually listened to it by myself on several occasions.

Until I looked up the details for this review, I hadn't even realized that it was a part of the Martha Stewart Baby collection. This CD is so not what I associate with the woman who did an entire TV episode about ironing table napkins.
Favorite tracks are Krauss's "Baby Mine" and Tuck & Patti's "Takes my Breath Away" (chokes me up every time). You can actually sample the tracks here .

4. Baby Bumblebee

Theoretically, Billy shouldn't be watching any TV, right? Well, we do our best. We limit it to no more than an hour a day, and try to use it as a reward -- for good behavior, accomplishing tasks, etc.

At first, I thought we would be stuck with Thomas the Tank Engine and Mickey Mouse Clubhouse, the educational value of which I find questionable (see my rant against Thomas). But it turns out, he really likes educational DVDs too.

Baby Bumblebee has a series of DVDs that teach vocabulary, question words, and concepts like opposites, numbers and colors. They use real children to teach the concepts -- and these are definitely not trained actors -- and include interactive games and lesson reviews on each DVD. A series of flashcards matches each DVD set, so if you're into flashcards, you can use these to reinforce the concepts. (Billy has about as much interest in being drilled on flashcards as he does in balancing my checkbook, but on that theoretical day when he does develop an interest, we're ready.)

I was overjoyed the day he started showing me "Up and down," demonstrating by standing up and squatting down, "fast and slow," which he shows me by alternately running and walking, "yes and no," nodding and shaking his head. Now if I can get him to stop saying "Visit us next time at baby-bumble-bee-dot-com!"

3. Audible.com
If you have an iPod and long car trips, this can be a lifesaver, particularly if you're trying to limit TV time. Dr. Stanley Greenspan, the creator of our Floortime therapy, strongly recommends audio recordings of stories, because it forces children to use their imaginations to create the pictures to accompany the words they hear.

Audible has a large collection of recorded children's books -- in addition to their volumes of adult bestsellers (I mean fiction and non-fiction for adults, not porn) -- ranging in price from a couple of bucks for a single book to more than $10 for a collection of stories. You can either buy the recordings singly at retail prices, or join their online club and get credits for a certain number of book per month.

Then you download them to your computer where you can either transfer to an iPod (or other mp3 player) or burn to a CD. The whole process was super-simple, and I'm a super-simpleton when it comes to electronics. We joined at the most basic rate ($7.95 per month) and started with a great recording of Dr. Seuss stories, featuring the voices of David Hyde-Pierce and Jason Alexander.

2. Dry rice and beans
This takes the old adage "the best toys don't have batteries" (Is that an old adage? Hmm, now that I think about it, maybe not.) to an extreme. Billy will play with a plastic bucket of rice and dried beans for as long as I will let him. Buried in the dry stuff are tiny toys like dinosaurs and trucks, and he digs them out, reburies them, drives the trucks around. This has -- can you believe?! -- become our substitute for TV when I need 15 minutes to load the dishwasher. Upsides: a lot cleaner than sifting dirt through this fingers; it's cheap; it doesn't make an annoying sound, and you never have to go searching through the house for trip-A batteries.

1. "Up in the Air"
Really liked this film (I got to go to an actual movie!), starring George Clooney as a guy whose job it is to relieve other people of their jobs. He's hired to fly around the country, delivering bad news to employees whose bosses are too scared to do it themselves. I heard Jason Reitman, the director, interviewed on NPR and he talked about how many of the "employees" in the film are real people who were actually recently fired from their jobs. He used their real stories and let them tell them. If I hadn't heard this, I wouldn't have known, because they were really good, really heartbreaking.

I didn't think this was a perfect film the way some reviewers had described it, but I did think it was a beautifully acted and subtly told story. My only big problem with it: The fact that the woman who was supposed to be George Clooney's love interest ever acted aloof -- instead of straddling his wheelie bag in the airport and refusing to let go.

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