LIFE IS A SPECTRUM

"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

Security text:*

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

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

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