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.

Reader Comments

Security text:*

Enter both words below, with or without a space.
The letters are not case-sensitive.
Can't read this? Try another

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

We try to limit TV in our house. We really do. I know all the statistics: how too much TV has been linked to obesity and attention problems -- particularly in autistic kids -- and violence in children in general. One of the biggest challenges with autistic kids is getting them out of their own worlds and interacting with people; clearly TV can be an obstacle to that.

We never have adult TV on while the kids are awake. And by "adult TV," I don't mean porn (though you can safely assume that we aren't watching porn with the kids in the room). I'm talking about anything that isn't on Nick Jr. or Disney or PBS Kids. We don't even watch the news with the kids, because with all the news tickers and quick cuts and crazy graphics and split screens, it starts to give me ADD after about 15 minutes.

So, on the advice of our occupational therapist, we try to limit the kids' TV to about 30 minutes a day. The exception is when they're sick and feverish. When Billy feels so rotten that he just wants to watch cartoons, I don't have the heart to tell him no.

He's been sick for almost a month, off and on, and we've watched “Finding Nemo” so many times that it has become an alternative language for us. You can find a line of dialogue in Nemo to fit almost any situation, as it turns out. We had an unsettling couple of days when Billy spoke almost exclusively in “whale,” but luckily, that phased out quickly.

We also now tell time in “Nemos:” a “full Nemo” is a 90-minute block, a “half-Nemo” is 45 minutes, and so on. It takes about a “quarter-Nemo” to get both kids dressed with shoes on.

Now that Billy's feeling better, I have written a script of my own: It's called “Losing Nemo” and it lasts for the rest of our lives.

So we're going to start this week newly healthy and going cold turkey on the TV-watching. Only educational TV and only for 30 minutes a day.

I will say this about TV, though: Billy can learn stuff he sees on a screen about 10 times faster than something he has to hear some other way. He pays attention when it's on a TV or computer screen.

I'm not just talking about memorizing dialog – though he does have a catalog of cartoons in his head that could rival the Netflix kids' section.

I'm talking about learning skills, even motor skills, by watching someone else complete the task: handwriting, bike riding, dancing, etc.

We've been working with a couple of handwriting programs this summer (not too consistently, because of the illness): TV Teacher and Handwriting Without Tears.

The TV Teacher program is based on the idea that certain autistic kids learn very well from video. The host of the program is an occupational therapist, and she noticed that one of her clients, a young boy, improved a lot after his sessions were videotaped and played back. He would watch them over and over. And they taught him shapes and letters this way before creating the DVD series and selling it to other parents.

It's been a big hit with Billy. We've mainly focused on shapes over the past month. As she teaches each shape, “Ms. Marnie” will show how the child can use the shape to draw something fun: a circle becomes a balloon, a triangle becomes a pizza, and a heart becomes a valentine.

A couple of days ago, Billy and I were drawing with crayons on his easel. He asked, “Draw a heart! Draw a heart!,” so I did. Then I walked away, talking to my parents about something.

Then my dad got a funny look on his face, staring at something just over my shoulder. I turned around and saw that Billy had written “Mom” in the center of the heart. It was slightly wonky but completely legible.

My jaw dropped. No one had asked him to write anything. He had never written “mom” before anywhere.

I picked up the paper from the easel and held it out to him, asking, “Billy what does this say?”

He smiled and pointed at each letter: “M-O-M ... MOM!”

I couldn't believe it. I know that he saw it on TV, but it has been almost a month of non-stop Nemo-thon since he's seen that program. And no one prompted him to write anything. I didn't even know he could spell “mom,” much less write it.

So don't tell me that TV is all bad for children. It may not be a popular opinion, but I think video can be a great way for some autistic kids to learn; I don't understand the science behind it, but I think there's something there. The key is picking the right programs and using this tool strategically.

I'd love to hear any of your suggestions about really good educational programming, either online or on TV/DVD. Or do you think exposing kids to any TV is a bad idea? How do you choose the stuff you'll let your kids watch? I'd love to hear opinions!

Reader Comments

Tv

We limit tv too.It's easy to do once you get used to it, especially since we don't have cable or satellite. =) I will agree with you somewhat about some children learning from the tv. My Morgan learned her ABCs from Barney in a couple of days. I had tried to teach her them for MONTHS, and something about what Barney did made sense.
Our favorite programs are Word Girl and Sid the Science Kid. Both awesome for learning and reading.

YouTube and My Sister's Wedding

Don't know if I told you, but my youngest sister in DC became engaged last month and is getting married in late October (actually, it is the same day as our wedding anniversary!). She wants EJ to be her ringbearer and I said yes initially, but of course, after giving it some thought, I am having anxiety attacks over the idea. I have worked out the general plan to get him through a one and half hour high Mass (can you say Grandma's iPhone??), but I am still stressed over the idea of him not really "getting it" when it comes showtime, never mind how in the world are we going to get him to button a top button around his neck and then wear a tie.

We tried a "practice" run yesterday. I gave him a small pillow and then walked about 20 feet away from him; then I said, "OK, bring the pillow to me with a BIG smile!!". Well, he did fine the first time, but by the second time, he had decided that it was MUCH more fun to stop 1/2 way and then THROW the pillow to me. We did this a few more times, but I was afraid the throwing would become reinforced, so we quit.

Enter YouTube. I love YouTube for many reasons, but the main one is that you can always find at least one video of some neurotypical kid doing exactly what you want your kid to do (e.g. using the potty, brushing teeth, using utensils when eating, hitting a baseball, etc.). I thought, "I'll be there is a wedding video out there somewhere that he can watch and model the ringbearer.". I found one that was shot fairly close up of the kid (who had a huge smile on his face), so I showed it to EJ.

He watched it all the way through (about 1 minute) and then asked to watch it again. As the kid in the video started walking down the aisle, I said, "what is he doing?".

EJ: "He is being a ringbearer for Tia Tini and PJ's wedding."

Me: "What is he carrying on the little pillow?"

EJ: "He is carrying the rings."

Me: "Is he smiling?"

EJ: "Yes."

Me: "Why is he smiling?"

EJ: "Because he is about to throw the pillow."



MOM -- awesome!

Hey Sis, it's nice to know Billy has you in his heart!

By the way, JD in TLH, the pillow story is awesome, too. I needed a chuckle this afternoon and you provided it!

From Amanda Broadfoot

Oh man, that pillow story made me laugh so hard I fell off that couch! So great!

We do the same thing with YouTube -- finding neurotypical kids to model -- because Billy does seem to pay attention so much more to video. But he always surprises me by what will stick with him. It's not always what I have in mind.

Good luck with the wedding. Dave's brother had asked Billy to be ringbearer at his wedding and we were too chicken to try. Of course, that also required a transatlantic flight -- something we haven't tried with Billy since he was two.

Can't wait to see you guys again. We're just done with a bout of viral pink-eye so we're almost ready for public exposure again!

mom <3

Wow that's incredible. and the "losing nemo" line -- lol.

we try to limit tv too but I can't help but think that it can be beneficial in small doses.

From Amanda Broadfoot

Absolutely agree with you. My hat's off to those moms who firmly adhere to a strict "NO TV AT ALL" rule for their kids. However, I need a few minutes to take a shower sometimes, and I don't think a few minutes of Mickey Mouse Clubhouse is going to screw them up too badly :-)

Total 6 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

Subscribe to this blog!

...or grab my button!

Lifeisaspectrum.com button

BUY THIS BOOK!
(Billy and I are in it.)

Tags

Mon Tue Wed Thu Fri Sat Sun
1 2 3 4 5 6 7
8 9 10 11 12 13 14
15 16 17 18 19 20 21
22 23 24 25 26 27 28
29 30 31