LIFE IS A SPECTRUM

Occasionally, Dave dresses our children. Or tries. It's always an interesting experience. He doesn't bother with things like checking the size, whether

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its seasonally appropriate or matching the colors. He alternately puts too many pieces of clothing them or too few. He has a very open-minded attitude as to what constitutes an outfit.

He finds girl clothes particularly baffling. One morning, he got Willow up, dressed her and brought her down to breakfast.

Me: Why is she wearing that?

Dave: What? It's cute isn't it?

Me: It's a swimsuit.

Dave stares at Willow for a long moment, trying to absorb the fact that the two-piece bikini with a picture of Pooh Bear in a boat on it is not, in fact, an appropriate outfit for church.

Me: It has matching water wings.

Dave: Oh. That's what those are.

He has, on occasion, dressed her in her brother's clothes, nothing but a raincoat, and a dalmatian Halloween costume.

But one of the things that make him such a great dad is that he always tries. He'll fumble with tiny buttons and hairbows and little shoes and socks. And if our daughter occasionally goes out in public looking like a tiny bag lady, that's a small price to pay.

Hehe

That was super cute :) Happy Birthday to Dave!

picture

what a great picture.

Happy Birthday to your hubby!

And good on you for letting him try! Sometimes I can be such a control freak about that stuff...

Dressing our daughter

I can see your "control freak" and raise you one, my sister.

I've recently taken to laying out both kids' clothes a week in advance, in little labeled compartments in the downstairs closet -- from shirt to socks, it's foolproof.

Dave still managed to put one of Willow's outfits on backwards.

hahaha!

Hilarious! That water wings line just kills me!

What is it about men? My husband is so good at dressing himself--anything he throws together just looks right on him. And he does a better job shopping for me than I do. But when it's time to dress the boys, it's like his mind goes into fashion meltdown. Two different shades of red together! Crocs with dress pants! Putting swimsuits on the boys? I can definitely see that happening.

Let's sign these men up for a class or something. Surely this is a universal problem.

Dressing the kids

Dave did the "two shades of orange" on Billy this past week. My child looked like he was heading off to work in a 1970s Burger King.

There definitely needs to be some community education class "Dressing your children: for dads!"

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colorspectrum

Dave (my husband) is English and graduated from Oxford University with a degree in biology. It's a pretty major thing to get recommended for Oxford, and Dave's math teacher, an alumnus, recommended him. Not because he thought Dave was excellent at math. “You get it wrong a lot,” he told Dave about his class work, “but you get it wrong in an interesting way.” He thought Dave had a unique brain and that Oxford could use more of those.

I think about this story sometimes when I watch Billy. A unique brain. Not less, just different.

I didn't always feel this way. When we first got the autism diagnosis, I was scared and angry and all I wanted to do was “cure” my son. I thought it was my duty to find some magic bullet that would wipe the autism right out of his system. And we went through a lot of them, as you can read in this blog.

But as an autistic scientist named Lisa Daxer said in a wonderful article I read this week, autism is a fundamental part of who my son is; it's a way of describing the way his unique brain works.

The wonderful thing about this past long, hard, rewarding, exhausting, surprising summer is the close bond I've formed with both my children. With Billy, it was an invaluable opportunity to really get to know my little mystery, as he sometimes seems to me.

My focus has shifted from trying to cure my son to trying to support him, encourage his learning, and nurture those sparks of interest and passion I see in his eyes. In that way, my job is no different than that of the parent of a normally developing child. Of course, some of our supports will include some speech therapy and occupational therapy and extra assistance with social skills.

But we no longer expect to spend every waking moment in therapy. As Lisa Jo Rudy describes so well in her book Get Out, Explore and Have Fun!, our support of our son also includes taking him to the museum and the park, encouraging his interest in music and getting him lessons in gymnastics (which we hope to start soon) and swimming.

I'm not saying that it's not hard sometimes. Clearly, Billy has communication problems, and life is always going to be difficult for someone who has difficulty communicating what they're thinking. (But he'll be in good company with most men on the planet in that respect.)

Billy has difficulty responding to or asking questions. He confuses pronouns. But he can remember verbatim a story or TV show he hasn't seen for months. He easily picks up phrases in any number of languages; he can now count and say the alphabet in Spanish, French, German, Japanese and Hebrew.

Socially, he's about a year and a half behind his peers. He's learning how to share, greet people, join a game. That may always be a challenge, on some level, for him.

But he's loving and funny and charming. He's just as devoted to his family and friends -- and even almost-strangers (like the school crossing guard) who might not realize their impact on him – as any normally developing child.

And he's happy. We all are. We're not just surviving; we're thriving. Some days we're happier than others – but then again, so are most families. Happiness is a spectrum, just like autism. So is intelligence. So is fulfillment. And acceptance and understanding. "Normal” is most definitely a spectrum.

We're a long way from Billy attending Oxford, but we are approaching the end of his first of week of Pre-Kindergarten at Buck Lake Elementary. It's been a great start to an important year for us. We'll be watching his development and behavior – and the classroom dynamic -- closely to determine whether another year in the public school system makes sense – or if we should start pursuing other options. So far, we're cautiously optimistic that there's a place for Billy's unique brain in the Leon County School system.

A unique brain. Maybe that's what the world needs – or will need – to solve big problems like cancer and AIDS and world hunger and global warming. Maybe hard work and intelligence alone won't be enough. It'll maybe take someone who can see patterns and make connections that a “normal” brain would never make.

I'm not saying that autistic people are going to cure cancer. Or that the only valuable autistic people are those savants who bring some super-skill to the table. All people are valuable. We are each truly unique and special. And we are all on a spectrum.

Life is a Spectrum

So wonderfully written Amanda. And I so relate to everything you said here. I don't want to cure him, just want to help him be as functional as possible in the world, and to nurture his strengths and work on his challenges. This could be a big year for both our kids, as they are trying to find their way with peers, and learning new skills. It's been quite a year for Milo, as I am sure it has been for Billy... and they do have unique brains and we can cherish this in our boys. I liked you sharing about the languages... Milo can count in Spanish and say some words in Spanish, but not other languages.. that is great. Milo is quite the whizz at Maths, (addition, some subtractions and learning multiplication) he can read and write already. It's amazing how the brain is advanced in some areas. Milo also loves music. Billy sounds quite the character.

normal is also subjective!

as usual, love watching your mind work to reach beautiful conclusions. I think you have a unique brain too!

Life is a spectrum

Thanks *so* much, guys.

Sarah, I really look forward to hearing how Milo -- AND his parents -- are doing this year :-) I feel so blessed that I have so many wonderful new friends among the autism parents out there on the Internet. Comparing our stories and the similarities/differences in our special little guys' (and gals') minds, is a source of constant fascination to me.

Life is a Spectrum

I share this perspective with you, but unfortunately not everyone in my household does. I feel that I've come to terms and reached a level of acceptance for Audrey just as she is...which as far as I'm concerned is a nearly perfect joy in every way...but it sucks big time when your partner still wants to fix fix fix. I hope that he'll get to where I am someday.

so insightful

I have recently discovered your blog and absolutely cherish the insights you share. My little guy is 2 1/2 and the experts are pretty sure he is on the spectrum. (We're working with First Words in Tallahassee). I've avoided reading much about ASD because it always makes me cry. But when I read your blog, it puts everything in such amazing perspective. I appreciate your positive take on your experiences with Billy and the gifts he has. I'm still working through that wanting-to-cure-it phase. I'm striving to work towards just enhancing the gifts Mikey has, which are abundant, rather than just seeing the deficits. Thank you for the gift of this blog!

Life is a spectrum

It's such a joy to be able to connect with other parents -- particularly other parents of ASD kids -- and hear your stories, share your joys and sorrows, and support each other. I meant it when I said that "acceptance" is a spectrum too.

I will say this: I'm happier now that I don't see autism as the enemy. But I wasn't able to get past that without the confidence that develops with the simple passage of time. Over time with a child on the spectrum, you become impossible to embarrass, you finely hone your "Mama bear" skills, and you just learn a lot more about what's out there, what's available, what works, what doesn't.

Thank you for reading and sharing and being that virtual support that helps me laugh my way through the week :-)

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coffeemug

COFFEE!

  1. Take my son to the potty and back to bed.
  2. Repeatedly tell him that “What is the opposite of elephant?” is not a question I can answer before finally answering, “Dog,” just to get him to go to sleep.
  3. Repeatedly curse the Baby Bumblebee “Opposites” DVD.
  4. Fidget nervously in bed for so long that Dave, still sleeping, literally kicked me out of bed.
  5. Change my clothes three times. What outfit says, “Take care of my baby. I'm right across the street?” I assemble an outfit. Then change again, because I realize I look kinda like a ninja. Sundress it is.
  6. Drink a very large cup of coffee.
  7. Fueled by caffeine and nervous energy, update my Facebook status twice, tweet about the joys of coffee, and write about 40 million posts on MomsLikeMe.com (sorry, ladies). Expect to receive a couple of calls and emails later questioning my mental stability.
  8. Drink two more very large cups of coffee.
  9. 10 minutes until wake-up. I rearrange some of the living room furniture. And then put it back because I can no longer get to the bathroom.
  10. Wake Billy up for school! With the song “Good Morning To You.” His response: “Please stop singing.”

    Happy first day of school!

love it

lol I love it! I look forward to our first day of school in a couple yrs!

1st Day of Pre-K

You're a great mom. Billy will be fine. Put your feet up and relax. Take a nap when Willow naps. Our boy will meet and greet you with a huge smile on his face. No doubt! But, the minute you get him home.....CALL ME!!

First day of school - thumbs up!

Thanks for all the good wishes! It turned out REALLY well ... Ms. Jade said he had a very good day, and while he was very tired by the end (he was too nervous and excited to sleep much the night before), he really participated in almost everything. He was talking about one of his friends from class last night. We're looking forward to Day #2 being even better. He slept MUCH better last night.

First Day of School

Hahahahhaha! Awesome. I'm with you on that Baby Bumblebee DVD.

So how did it go? And I'm not just asking about Billy, I'm asking you, too? How'd you do with the drop-off? :)

Hugs to all our babies. How lucky are we to have a front row seat as we watch them grow!?

FDOS

Haha... Super funny... I know that feeling-what should I wear?!?- so well. Glad Billy had a great first week!

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Something else he'll have to leave at home: my now stretched-out black nightshirt. "I'm the Black Beast," he told me. Indeed.

We've had a wonderful summer. More on that once I've safely gotten him off to school tomorrow.

Right now, I'm more nervous than a two-tailed cat. I feel like I've been shopping for school supplies for a month. But as I'm checking and re-checking the list of things Billy's supposed to bring tomorrow (two bottles of antibacterial soap, boxes of crayons and markers, an assortment of sponges, a ream of copy paper, etc.) I've been thinking about the things he might miss from home.

5. The witch hat
The quintessential image of my summer is Billy zooming around the dining room table on his scooter wearing nothing but Pullups and that pointed witch hat.

4. His Razor scooter
We used to think Billy had coordination problems, but he is crazy good on the scooter. He can weave in and out of furniture, narrowly miss my toes, spin circles and stop on a dime. I actually think it calms him down sometimes, focuses his attention. I just mention it in case any other parents with “sensory seekers” (and a lax attitude toward their hardwood floors) want to give it a try.

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Maybe they'll have a storage tub at school that he can relax in.

3. Peanut butter
One of his classmates has a peanut allergy, so no peanut-related products in his lunch or snack. And that got me to thinking how much harder so many parents have it than we do. That peanut thing is serious, scary business. Billy loves peanut butter, but he can have it after school.

2. The laundry basket
Second only to the witch hat, the laundry basket is his costume of choice. It's one of those net pop-up ones, so he can see through it, and he wears it over his head as “Robot Billy.” Sometimes he wears it while riding his scooter. Once, he fell asleep in his bed wearing it.

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Billy's best buddy

1. Willow
Billy's sister was barely one and barely walking when school was last in session. Now she is his best friend, playmate, sworn enemy, bath buddy, wrestling opponent, and fellow robot. She has been the third member of our circle during this summer's “circle time,” the world's most appreciative audience for his antics, and the hand he holds while watching TV. He has been the center of her universe. It's going to be hard on her. And me. And very quiet in our house.

Love all of it

And feel your pain. As a parent I can't bring me...that is hard...

Life is a Spectrum & Peanut butter

Wow what a great story! Really enjoyed reading your blog. I'm a single mother and have a 12 year old son with ADHD; ODD; ASD and anxiety. Which I usually say he's got a lot of alphabets. If you think about it everyone has some kind of alphabet connected to them. I haven't had a chance to read your article 10 things everyone should know about Autism but look forward to reading it tonight. I have struggles with him everyday and my boyfriend kind of understands it but he also thinks a lot of his issues are attitude related and I have to agree with him a little bit. My son is great with everyone else but the minute I walk into the house he completely transforms into someone else and the attitude kicks in, the disrespect comes in and practically every other behavior usually teenages have appear. Don't get me wrong he can be great around me at times but not always. Then there is the whole school thing. He struggles so much with practically everything and he hates home work. He's in public school and as much as he struggles he's done pretty well.

I thought my child was the only child on earth that LOVES peanut butter. My son can take a big spoon and scoop out a huge scoop of peanut butter which he usually does everyday. Glad to hear someone else loves peanut butter as much as he does.

Attitude, behavior, and the ABCs of autism spectrum

Hi, Sheila! Thanks for getting in touch :-)

One of the hardest things of parenting a special needs child is figuring out what is behavior and what behavior is related to the disorder. You're absolutely right: Everything they do is not caused by autism or AD/HD or whatever disorder they're dealing with.

And yet, we don't want to punish them for something they can't help. It's really tough. Did it get easier to tell the difference with your son as he got older and was able to talk to you more? Right now, Billy is so frustrated by his limited ability to communicate that he just tantrums when he's upset. Sometimes, it's just a four-year-old ticked off that he's not getting his own way. And sometimes, it's an autistic child frustrated that he can't communicate. It's an ongoing problem for us, dealing with it appropriately.

And YES, he LOVES peanut butter! He's such a picky eater that we were delighted when he started eating P.B. He would eat it every meal if I would let him! If I had his metabolism, I would too :-)

My 13 yr old son has Asperger's and loves peanut butter!!!! Unfortunately he has no control over his eating and will gladly polish off a full jar when your back is turned. Although he was not diagnosed until he was 11, once we learned about ASD we realised and understood all them tantrums as a younger child, and the guilt of not realising your child was not the antichrist that strangers in Tescos etc thought he was with me as the worst mother on earth made me cry as much.
Yes it is near impossible to work out whats autisms "fault" and what is basic human nature.
At the min we cant get our son to sleep and we cant get him to go to school. No help from anywhere, but realistically if we his parents cant get him to go to school, who can??? Autism support is rare in Northern Ireland and im guessing its not too great in rest of UK.

Autism support in the UK

Hi, Jennifer!

Thanks so much for getting in touch. I'm really interested to hear what you said about the lack of autism support in the UK. My husband is British (from England) and we occasionally talk about whether we'd be better off going back to the UK where we wouldn't be at the mercy of insurance companies for health care coverage.

Does your son receive therapy? Behavior services, occupational therapy or speech? Since he has Asperger's, he may not even need speech therapy. But I'm just curious to hear more about your situation and how the coverage of therapy compares.

Again, thanks for checking in and I hope you'll stay in touch :-)

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INT. DINING ROOM - DAY

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Disastrously messy house. Four-year-old BILLY glides in on his scooter, wearing nothing but a Halloween witch hat and a pair of Lightning McQueen Pull-ups. He puts his face exactly one inch from his mother's, who is trying to type.

BILLY: I want to be a great actor.

Mother fingers immediately freeze over the keys and she spins toward her son.

Mother (shocked): You want to be an actor?! That's WONDERFUL! I think you'd make an awesome actor! After all, you're great at learning lines and, clearly, you love costumes.

MOTHER'S DREAM SEQUENCE: Insert 30-second montage of handsome young man accepting Oscar. He blows a kiss to his tearful mother, who hasn't aged a day.

BACK TO SCENE

BILLY: A great artist.

MOTHER: An artist? So we have options. That's good. I wouldn't call it a “fall-back plan” but artist could be an alternative if Oscar winner doesn't pan out.

BILLY: A world-class athlete!

CLOSE on the Mother's eyes narrowing suspiciously.

MOTHER: Billy, what do you want to be when you grow up?

BILLY: An acrobat in the circus! An astronaut!

MOTHER: You're going to be an acrobat and an astronaut?

Her gaze lands on the top book on a pile on the floor. The Sesame Street "A Book."

BILLY: I'm going to be an ALLIGATOR!

Billy pushes off on his scooter, still wearing his witch hat, now cackling maniacally, as though he's said the funniest thing in the world.

Re: The Witch Who Would be Astronaut

I LOVE THIS CHILD! and this post. love. love. love.

Smart!

Ha! Billy is so smart. I like the Oscar-winning scenario, because of COURSE you won't have aged a day!

My oldest still claims he wants to be a Rock-'n-Roll Astronaut. I'm still not sure what it is, but it sounds like it pays well.

My witch-astronaut-alligator

Thanks, Emily and Maura! Billy has now taken to sticking his head through one of the armholes of one of my black pajama tops (so that only his head is visible) and racing around the house. I asked him, "Billy, are you a ghost?" And he said, "I'm the Black Beast!" I have no idea what this is about; I hope it's not another potential career choice. Pictures of the Black Beast to come soon ... :-)

more pretend play

Wow, he really does have the pretend play thing down. I think an actor is not a pipe dream at all. I'm so glad that accountant wasn't in that book....way too boring for him.

Great story. I could just picture it all. Love your writing style.

Smiling hugely

I love this! =) I wish we spring chickens lived in one place so the kids could play while we hens cluck about! =) I think Billy and K may fight over the hats though!!!! ;)

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"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.

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

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8LZBI1

 

This Friday, I find myself unusually broken and battered. None of these injuries is particularly bad, but I can imagine, if my body was a corpse on CSI, they would instantly recognize me as a mother of small children because of the following:

 

mama_babies_bday

They look so innocent here. They are not.

5. Two bite marks that are healing: Willow has discovered her weapon of choice.
4. Repetitive stress injury in my shoulder from pushing 75 pounds of kid around in the double stroller.
3. Lower-case-i-shaped bruise on the bottom of my foot from stepping on a #%*@! piece of the magnetic Leapfrog alphabet in the dark.
2. Twisted knee from slipping on the kitchen tile after Billy discovered the ice maker and left a puddle of melting ice in the middle of the floor.
1. Bitten tongue from being tackled unexpectedly from behind after an inexplicable scream of “Get the bumblebee!”

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A typical problem for families of autistic children is isolation. We can start to form a cocoon around our child and ourselves to protect against both real

RudyBook

and imagined physical and emotional dangers. We can lose touch with friends and the community around us as we shuttle our child to and from therapy and school and back home again. In our efforts to protect our child, we can succeed in cutting him off entirely from the real world.

Lisa Jo Rudy's new book, Get Out, Explore and Have Fun!, is an antidote to autism isolation and a great tool to help parents engage with their autistic child in a variety of real-world settings. The mother of a 13-year-old autistic son (as well as a neurotypical daughter), she gives practical advice on choosing and enjoying community activities and settings.

Rudy makes the case that not only can you visit the museum, participate in sports with your child, enroll your child in piano lessons, etc., but you should. A life in which your child does little more than work on his deficits in a variety of artificial supported settings (like therapy), Rudy contends, is hardly a life at all, for your child or you.

Beginning by helping parents pinpoint their child's individual passions, Rudy moves on to hand-hold parents of autistic kids through the process of selecting community settings; trying out various sports; participating in youth groups (like 4-H or Scouts); visiting museums, zoos and aquariums; attending performing arts events; engaging with your faith community, and much more.

In each chapter, Rudy introduces a variety of options – such as, in the Sports chapter, the various kinds of sports a family might try – as well as tips, issues to consider, and questions to ask both yourself and the organizer. Inspiring “success stories” are also included, illustrating the blossoming effect that a passionate pursuit can have on an autistic child.

Articulate yet conversational in style, Rudy rejects the idea that a family with an autistic child can't be joyful, energetic, involved and fun-loving. Get Out, Explore and Have Fun shows how parents of autistic kids can expect more from their child and their lives.

 

Ready more about Lisa Rudy and her new book at www.LisaRudy.com.

community outings

I haven't seen this book, but love the concept. There are many many days when I just don't wanna, but you've gotta gotta gotta make yourself do it. And the majority of the time it works out better than we think...and if not, it's still pretty survivable.

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Albert Einstein – who many believe was on the autism spectrum himself – once said, “Imagination is more important than knowledge ...”

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Most children don't have to be taught to imagine; play is as natural to them as breathing. They push a car – or a block that they imagine is a car -- along the floor and say "vrroom, vroom" as soon as they can utter a sound. They cuddle baby dolls or pretend to eat or drink from toy cups and saucers. As they play at these things and imagine, they communicate, they connect with people, and they practice life skills.

Imaginative play is typically a challenge for kids on the autism spectrum. When most kids were starting to pretend, Billy was putting together the wooden track on his train table or linking up the trains and driving them along the track. When he played with blocks, his favorite game was "dominoes," in which he lined the blocks up one after another and knocked them down.

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Before we knew better, we'd try to force him to act out stories with us. We bought herds of plastic Little People, toy soldiers, Disney characters, astronauts, Thomas trains and ark-loads of plastic animals. We have two doll houses, three barns, an entire plastic amusement park, a medieval fort, a Mars rover, a space shuttle, an elaborate toy kitchen, two play houses, and yes, a Noah's ark.

The lesson we learned: You cannot buy a child's imagination. At least, not Billy's.

The second lesson we learned: We can buy Willow's imagination. She jumps on any new toy like a duck on a June bug.

Following the Floortime model of “following his joy,” we invested, instead, many hours lining up both trains and blocks. Slowly – and I mean slooooooowly – things started to change.

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At first, we were able to add a few minor “playful obstructions,” little challenges that complicate the game: Something is blocking the train track; the dominoes travel over and under objects, etc.

Billy still does a good bit of echolalia, repeating lines from books and TV shows. The next development step he made in imaginative play was to act out, in small ways, lines from books or TV shows. One day, several characters had a “jumping contest.” On another, an astronaut had a race with a pig. I couldn't have been happier if he'd composed a symphony.

So this summer I've made a point to spend a certain amount of time each day “practicing” imaginative play. Scheduling it might seem to defeat the purpose of following his joy, but there's method in my madness.

In the morning, I'll listen to whatever lines he's repeating. Then while he's napping, I'll try to set up the scene of that book or TV show with his toys.

For instance, one morning, he was stuck on “Where the Wild Things Are,” understandable since we'd read that as a bedtime story the night before.

While he was napping, I rounded up the characters from the story – or the closest I could approximate in our menagerie of plastic pets – and laid them out on the dining room table. Note: I moved this activity out of his play room so that he wouldn't be distracted by other toys while we were busy with our imagining.

I found one of his Little People to be Max and a taller female doll to be the mom. I found a dinosaur, a Shrek and a couple of other “wild things” and lined them up as well. I stole the bed from the dollhouse and dug out the toilet-paper-roll-boat we'd made in craft time the day before. Then I got a plate from the toy kitchen and put a plastic chicken leg on it, because as every parent knows, the story begins and ends with Max's dinner.

Billy surveyed all this with a suspicious eye. He suspected there was a lesson in it somewhere. “No circle time,” he informed me -- “circle time” is the way he describes any particularly boring lesson-like activity.

“No circle time,” I agreed. “This is about Max going to see the Wild Things.”

His eyes lit up. “Wild things!”

So I proceeded to tell the story with the characters I had laid out. I stopped to let him fill in some of he lines. His favorites: When the mother calls Max “wild thing!” and when Max threatens, “I'll eat you up!”

When we got to the part where “a forest grew” in Max's room, I felt a bump down at my thigh. Willow was holding a small house plant. I cannot say for certain that she was suggesting we use it for the forest, but I'm so used to things coming so easily to her (see her "Jurassic BooBoo" video for a masterpiece of imaginative play), that I didn't even blink at a 15-month-old making this leap. “Good idea,” I simply told her, and added it to the scene.

After a couple of rounds of Wild Things, Billy was getting a bit bored. At the next pause in my recitation, to my surprise, he changed the story.

“We have to find Saturn!” he told me and flew Max around the table.

“Saturn?” Then I realized that he was switching to his favorite episode of Little Einsteins. “No, Billy,” I corrected him, “This is Where the Wild Things Are.”

I tried to get him to bring Max back so that he could get in the little boat and sail to the window sill where Shrek and the plastic alligator were waiting. Completely forgetting that the point was for him to imagine something NEW, I was slightly irritated that my carefully laid out world wasn't getting used.

He sighed and came back to the table. We walked Max through his paces, sailing him back home to where his dinner was waiting for him. “And ...?” I prompted Billy.

He picked up the plastic chicken leg and bonked the mother on the head with it. The doll fell over. “She's dead,” he informed me, and hopped on his scooter and pushed off. I tried not to take this plot twist too personally.

Willow picked up the Mama doll, gave her a little kiss -- “Mmwah!” -- and put her in the bed. “Seepy (sleepy),” she said, pulling up the covers. She certainly is.

I learned an important lesson: Let Billy do the reciting. If he takes one look at the Wild Things set-up and wants to act out the Little Einsteins with Shrek and the dinosaur driving the Rocket, that's great.

I've gotten a little better at play time over the weeks. We used the toy barn and animals to act out the story Click, Clack, Moo. We used his Thomas trains and Little People to pretend The Little Engine That Could. And we've acted out Noah's ark ... with Batman.

And we made a Little Einsteins “golden pyramid” out of cardboard that Billy loved as much as any store-bought toy. He immediately swam all his Finding Nemo characters in and around it.

In fact, we find ourselves in a new development stage. While not inventing completely new stories yet, Billy is mixing and matching his favorites joyfully. A cow might say, “I think I can, I think I can” and a train might travel to the land of the Wild Things. Batman moves in an out of diverse roles with the ease of a plastic Lawrence Olivier.

On Monday we're going to make totem poles out of cardboard tubes, inspired by another favorite Einsteins episode. I wonder what Batman will make of those...

pretend play

So great that you put in all that effort...now I feel like a slug! Sounds like Billy and Audrey have similar loves...Wild Things and Little Einsteins. You do such a great job with the imaginative play. I find it so hard....I guess I'm rusty after like 30 years away from it! I literally have to watch other kids play to get ideas...they come up with some weird stuff!

From Amanda on Imaginative Play

Lynn, I'm on the same page, my friend. I was amazed to find how lost I felt the first time I sat down to do any imaginative play. I found it difficult ... and boring. I thought, "What happened to me?" As a kid, playing Barbies and "Let's Pretend" were my favorite games.

But my lack of skills in this area is one of the big reasons I started acting out his favorite books and TV shows: It turns out that BOTH of us are really more comfortable with a script :-)

Maybe over time, he and I will both advance to the next development stage!

pretend play

Amanda, there are two things I always love about your posts: 1) They're always full of hope. Always. Even when you're frustrated. That's awesome. 2) You approach Billy's development in the most creative ways! I'm taking what I'm learning from you, and applying them to my own boys.

It's just nice to have the reminder: Work with your kids, and help them be who they are. Nudge them, sure, but let them be themselves.

Kudos to you. Great post.

From Amanda on Hope

Hi Maura,

Thank you so much for your kindness. Nothing makes me happier than to think what I write reflects hope, because that's certainly what I feel: hope and joy. My kids drive me bananas sometimes too -- I'm not for a second pretending that every moment is full of hope and joy. We have plenty of tears and meltdowns -- and that's just me -- but I try to remind myself constantly, "We're ALL on a spectrum." Whether it be a spectrum of joy, normalcy, contentment, fulfillment, etc. We can't expect to live at the giddy end of the joy spectrum 24/7, but I'm happy to report that with each passing month, we spend more time there.

And it's a good point you make about certain ideas being good for ALL kids. I love the book "The Out of Sync Child Has Fun," because it has all kinds of ideas and games for kids with sensory processing problems -- but their normally developing siblings and friends will love all the games just as much. I joked to my sister once that most "therapy" for autistic kids is based on sound parenting principles; it's just "extreme parenting:" you have to do more of the same stuff, more of the time.

I hope you and yours have an awesome weekend!

A.

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Billy LOVED his birthday party this year! He turned four, and Dave and I got to experience what most parents love about holidays and special

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Sugar in the mornin' ...

occasions: Our child understood it was a special day, he was excited about it -- before, during and afterward -- and he had a great time.

That hasn't been the case in past birthdays, Christmases, Halloweens, etc. Generally speaking, holidays with crowds, new people and places, strange food and lots of noise have just set him off. We have two years of Christmas pictures of him lying on the floor screaming. Admittedly, one year he was forced to wear the cutest little Christmas suit with a plaid vest and a clip-on tie, and looking back, it does look pretty uncomfortable.

The parts most kids get excited about still probably aren't his favorites. Present-opening, for instance, is still stressful. But I understand his frustration: As soon as he opens something he likes, someone takes it away from him and hands him another wrapped-up package. Ripping open paper isn't nearly as fun as beating on his drum set, so he doesn't see the point.

Last Christmas, halfway through the process, he started singing the “All Done Song: “

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Sugar at lunch time ...

“All done presents, all done presents, all done presents, it's time for something new ... ALL DONE PRESENTS!!!!!” He repeated this with an “All Done Santa” song when my dad showed up, decked out in full Santa Claus outfit, dragging a new inflatable space shuttle behind him. Luckily, the space shuttle wasn't wrapped.

And just because Billy is singing, that doesn't mean he wants you to open your mouth. He still has some sensitivity where sounds are concerned, and he doesn't mean to offend when he occasionally puts his fingers in his ears when people start to sing or talk loudly.

In fact, on his birthday, Dave and I grabbed Willow first thing and sneaked into Billy's room while the lights were still out, singing “Happy Birthday” to surprise him. From the darkness, all we heard was, “Please stop singing.”

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Sugar at half past two!

I asked, “You want us to stop singing your Happy Birthday song?”

Billy: “It stinks.”

He doesn't pull any punches, my guy.

So we were especially delighted with his delight at his party. We held it at the Mary Brogan Museum of Art and Science. He ran around wildly as the party prep was going on and greeted most new guests by throwing a beach ball at them and screaming, “Happy party!"

The staff at the museum was fantastic. Our assigned “Educator” led the kids through an activity in the Ecolab where they got to pet a hedgehog, a guinea pig and a horseshoe crab. And other than one minor incident in which Billy attempted to catch his favorite colorful fish out the aquarium with his bare hands, it all went well.

We returned to the party room on a high, and it was time for cake and [groan] singing. But to my amazement, when the room erupted into “Happy Birthday to You,” Billy stood there with a giant grin on his face, looking around and around the room, like it had just occurred to him that the party was for him.

Present-opening was still a mixed bag. He loved all the presents. ALL of them. He gives every item in his possession some attention at some point throughout the week. Yesterday, I found him lying on top of his new Toy Story beach towel, studying all the characters very carefully.

But at the time, he was frustrated, once again, by the unfair request made of him: Open up a totally awesome Hot Wheels workbench and then set it aside and open up something else awesome that you can't play with. Eventually, I had to help with the opening and just settle for showing him the presents while he – and all the other kids – put together his new Thomas track. Anyone else have any ideas about how I can better handle present-opening the next time it comes up?

After present-opening, the little kids and big kids (moms and dads) were each given two tokens to use in the Videotopia exhibit, an arcade disguised as a history of video games. Well, it does have a lot of history of video games in it, but the crowd of kids was around the Star Wars racing game, not the trivia quiz about the history of Sega.

They even have an old Pong video game. Delighted that there was a game the controls of which I could operate, I put my token in and relived my childhood. For a minute. Before staring dumbfounded at the game and wondering, “WHAT exactly is fun about this?” Surely, actual Ping-pong or tennis would have been much more entertaining.

Billy loves the arcade, though I'm not entirely sure he knows the difference between when the game is actually on and when the game is in demo mode. Nonetheless, we've dumped tons of tokens into that “exhibit” over the past couple of months, since it replaced the “Dinosaurs” exhibit. (FYI, I'm told “A Bug's Life,” by the makers of the animatronic dinosaurs exhibit, is probably coming in January.)

His favorite game: something he refers to as “Crazy Train” that he plays with Dave. I'm not sure if that's the actual name of the game or not, since he calls the “Whack a Mole” game “Gorillas!!” and won't be dissuaded that it's not a game about gorillas who jump out of holes in the ground.

At the end of the day, sleepy and happy, he asked Dave, "Do you remember the Crazy Train?" Yes, we remember. More importantly, HE remembered. And he ASKED us about it, something that had happened earlier in the day – the first time that has every happened.

Now we have something else to celebrate.

Present opening

Audrey is the same way with opening presents. She's getting better and better over time, but it's still not her favorite. For her 4th bday party, I actually said in the invitation that presents were not required (of course everyone brought them) and that we were not going to do the ceremonial opening at the party. Afterwards, I wrote a personalized thank-you note letting them know how much she loved their presents...because like you said, she DOES loves them...just, after the fact. I know that it's a social skill that she has to have, but at the same time...it's her birthday! I didn't want to be putting her through her paces at her own party!

From Amanda Broadfoot

What a great idea! I too tried the "please don't bring presents" route in the past, but all that happened is that most people did anyway, and the few people who actually followed my instructions felt bad and sent a present later.

But I love the idea of just sending a note later with a specific thank-you about the present that individual sent. That would make his birthday -- and other holidays -- a lot less stressful. I could probably even include a photo of him/gift with the note, since we take pictures of him with EVERYTHING. A friend of mine once told me that Billy would be the first child in actual danger of having his retinas burned out by exposure to the camera.

Happy Birthday, Billy! (And congrats, Mama!)

Billy looks so happy in these photographs! I'm so glad he had that "Ah ha! Everyone's here for me!" moment. But I'm even happier he was able to recall and talk about the party with you later. It must have really meant something to him. That's awesome on about seven different levels. Good job, Mama!

Two things:

1) I think birthdays are just as much a celebration for parents as they are for their guests of honor. You made it through another year of solid parenting, and the proof of your success is in that smile sprawling all over Billy's face.
2) I laughed out loud when I read your comment about Billy not knowing the difference between the actual video game and demo mode. My boys (3 and 5) are thankfully still young enough to sit in front of the demo and think they're actually playing. It cuts video game frustration by 100%--for them and for us. So funny. I almost wonder if demos exist mostly for that reason.

I hope you're having a fabulous week! Happy weekend to you!




From Amanda Broadfoot on Birthdays

Thanks so much, Maura. It was a wonderful birthday -- for ALL of us. I can definitely say that this year has been a true team effort. And on my team are a lot of awesome moms and writers, like yourself, who keep me motivated, laughing and inspired every day.

I'm so proud of my big boy. He's STILL talking about birthdays and parties and I can't wait for him to meet all the new friends in his class this year (in just two weeks!) and see how his newfound enthusiasm for other kids plays out at school.

Thank you again for all your support. I truly love reading your blog.

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