LIFE IS A SPECTRUM

Today the SITS Girls Back2Blogging Challenge has asked us to write about why we write, to blog about why we blog, to discuss what blogging means to us.

spock

Last night, I started making a list, and it goes a little like this:

1. I get by with a little help from my tweeps.

Blogging has been a means of giving and receiving support, exchanging information, laughing with friends. Let's face it: I don't get out much.

Some people who I know in the “real” world tease me about my obsessive social networking, the way you would tease someone with an obsession with shoes or Halo or somebody who collected potato chips that look like the Virgin Mary. But I have very good friends online. They buck me up, make me laugh and actually help me solve problems. Never underestimate the power of a virtual hug. (I also have two Facebook friends who I'm convinced think I'm somebody else, but most of them know me.)

Sometimes, things just seem less scary when you can get them down in print and contain the whole event or issue or problem in a few paragraphs. You can stare at the whole thing all at once.

And then sometimes, as a mom, you're bursting with pride and want to share your joy with the whole wide world ... web. Thanks to blogging, I can brag to millions of complete strangers ... or at least the 12 people who are actually reading my blog.

Some people don't even realize they're lending support; I'm just lurking around, laughing at their jokes from the sidelines and admiring the pictures of their kids. Now that I think about it, that actually sounds super-creepy.

Just a few of the online friends who get me through the week: Maura at 36x37, Lynn at AutismArmyMom, @NotSoSilentMike, BigDaddyAutism, @SherriPizza and Stuart at AutismFather.

2. 1 Degree of Separation

Theoretically, everyone on the planet is only separated by six other people: You know somebody who knows somebody who knows somebody who knows somebody who knows somebody who knows somebody who can get a meeting with the President, for instance.

The Internet cuts that way down. You can email just about anybody. When we started this blog – and I say “we” because originally, Dave and I were both going to be blogging – we were interested in being able to start discussions about autism treatments and invite scientific debate. We wanted to talk to leaders in research and autism science and get their feedback on treatments and theories on causes.

We do some of that. But since Dave really hasn't had much time to blog about actual science, that part of the blog has been limited to my opinions of therapies like Floortime, Therapeutic Listening and Kindermusic; the great response from Science-based Parenting about how Vaccines Are Not Linked to Aborted Fetal Tissue; more and more about vaccines and rants against celebrities like this one and this one who shouldn't comment on science and a lot of conversation about what happens when I try to cook.

But a new goal that we're setting is devoting at least one post a month to new scientific research and discussion of it.

3. I'm lazy.

Rather than solve problems myself, I can read and learn from other people's solutions. When were playing the Pajama Game night after night with Billy, thankfully, I read about a similar problem my friends at Both Hands and a Flashlight had solved. And then, a commenter left a link to inescapable pajamas. If I hadn't had my tweeps, I'd still be up to my elbows in ... well, you get the idea.

I've benefited from input around the globe on issues from ABA therapy to zip-up pajamas and everything in between.

4. I always listen to Spock and JFK.

One of my first assignments after I moved to Los Angeles, as an editor/journalist at Sci-Fi Universe Magazine (still perhaps the best job I have ever had, barring motherhood), was to interview Leonard Nimoy. I was actually late to the interview, because I got lost, I was flustered and hot and nervous and star-struck, and he was just about the nicest man on the planet.

In order to calm me down, he started talking to me about why I had moved so far from home, what I wanted to do. Embarrassed, I confessed that I was yet another hopeful writer in a city where even hobos are writing screenplays.

Rather than laughing or even offering some meaningless trite comment, he got thoughtful. He said that when he was a young actor, still driving cabs because his career hadn't yet taken off, he picked up a young senator named John F. Kennedy from a Beverly Hills Hotel. When he told the future president that he was an aspiring actor -- probably feeling a lot of the same embarrassment that I felt about calling myself a writer -- JFK responded, “There's always room for one more good one.”

There you have it. Those are now my words to all of you: my tweeps, fellow bloggers, friends and writers in the “real” and virtual world. There's always room for one more good one. If you concentrate on being a "good one," then it doesn't matter what the odds are; you've already beat them.

I don't mean that in the sense that the world is just waiting for me to arrive and that I'm gonna shake it up JFK and Spock-style. But as many voices in the blogosphere as there are, there are never too many good writers.

There's always room for one more good one. Now go get 'em.

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I have had a blast during the Back2 Blogging Challenge this week. Big thanks to SITS Girls, Standards of Excellence, Westar Kitchen and Bath, and Florida Builder Appliances for sponsoring this opportunity. Whether I win Thelma and Louise or not, I feel like I've already won.

Reader Comments

Today's SITS Girls Back2Blogging Challenge asks us to write about a woman who inspires us. I'm overwhelmed by options to fill this slot: strong, smart, loving, creative women have been holding me up and helping me grow as a person, a professional and a mom all my life.

meandsis

But considering the SITS Girls are all about sisterhood in the broader sense of the word, I think it's appropriate that I tell you about my rock, my sister, Sami.

When I was six years old, and my sister was 2 1/2, we moved into a new house. In the midst of the hubub of moving, apparently Sami wandered away.

Actually, "wandered" is the wrong word. She marched determinedly from house to house demanding, "Do you have any kids who can play with me?"

I'm not sure how many houses she visited before some adult thought that maybe it was a good idea to find her parents. It was more than one, because she still hadn't located any new friends by the time she got back.

"NEVER leave our yard by yourself!" my parents scolded her when she was safely back in their arms.

"I wasn't by myself," she replied. "I was with Teenie Uglondis."

This anecdote sums up my sister perfectly, I think: She is fearless, precocious, creative, pro-actively social and you absolutely can't win an argument with her.

We had never heard of her imaginary friend, Teenie Uglondis, until that day. She may have made him up on the spot. But what an imagination. He sounded like a Sardinian mafioso. One could imagine him hulking silently and invisibly next to her, punching one fist into his other open palm like her own imaginary bodyguard. (I had an imaginary friend named Shannon who played golf. And I'm supposed to be the writer.)

As time went on, we did make friends in the neighborhood – and beyond – and they all came to know another fact about Sami: She is fiercely loyal, and if she counts you as one of hers, she will fight your corner to the bitter – or happy – end. In some ways, Teenie Uglondis is her other self, the bodyguard we all count on – her friends and family – when the going gets tough.

I was reminded of this fearless child recently when we hit a roadblock with Billy's school placement. Despite the fact that there is an excellent elementary school across the street from us – part of the reason we bought our house here – we were told we would have to drive 25 minutes to a different school. The reason: “Sorry, there was a clerical glitch. And now it's too late to change it.”

I was a basket case. Not because I minded driving 25 minutes to take Billy to school. But because we'd spent the whole summer walking him to his new school, getting him ready for the change, getting him used to the playground. We were excited that Billy would have classmates in his own neighborhood with whom he could have play dates and walk to school in the morning. And an administrative error was going to throw all that out the window.

“Not a chance,” my sister said, and I could just imagine Teenie Uglondis at her side, nodding his head, ready to bust some kneecaps.

Which turned out to be totally unnecessary. My sister has a network of about 800 of her closest friends, and they all love her almost as fiercely as we do. And when I say they are friends, I mean it – not in the vague “Do-I-actually-know-you?” Facebook way, but in the real “I got your back” kind of way. My sister can truly love and nurture hundreds of people; she would have made an awesome monarch.

Needless to say, after calls to the right people, a place was found for Billy at his new school. I would single out my new best friend at the Superintendent's office for special acclaim, except that I don't want to put him in the headlights of every parent with a problem with Leon County schools.

Sami is an amazing mother, truly devoted friend, loving wife, successful marketing VP, and the kind of caring, honest human being that I feel honored and inspired to call my sister. If I started naming all the causes she supports with her time, energy and financial resources, I'd be here all day. Pretty much every member of our family and most of our friends have felt themselves lucky enough to be one of those “causes” at one time or another. And somehow, she always make us feel like we're doing her a favor when she helps us.

She learned from the best, of course (not just me, but also our incredible mother :-) And she makes it all look so easy and joyful and fun.

I love you, Little Sis.

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Thanks to SITS Girls, Standards of Excellence, Westar Kitchen and Bath, and Florida Builder Appliances for sponsoring this Back2Blogging Challenge this week. I've made new friends, been re-inspired to write, and developed a fierce desire to win that washer and dryer :-)

Reader Comments

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Really Nice Post!

I'm sure you made your sister very happy today!

Sisters are awesone!

What a great story! Thanks for sharing.

So VERY True!!!!

I love you both. You will both always be my big sisters even if we don't see or talk often. I love you guys and am blessed to have been a part of your lives!

Looking up to my little sis

Your sister sounds great...does she happen to be a Capricorn? By your discription, that would be my guess...we are extremly loyal! Thanks for stopping by Organized Chaos!! It was great hearing from you!!
Blessings, Monica

My sis

Actually, Sami is a Gemini -- we both are! Even though we're completely different in so many ways. Really glad we connected blog-to-blog :-)

Liza, we miss you, and I wish you guys lived over here so that we could see more of you and your family. But I'm really glad you're there to help mom at church when Billy stays over at her house. I hear he had a great time, but as you know, it's all hands on deck with our Billywigs :-)

Thank you so much to everyone who stopped by and left comments this week. I've really felt the love. And if I win that washer and dryer, I will absolutely do a load of your laundry. And even if I don't, I hope we can all still stay in touch.

Stay tuned tomorrow when we all blog about what blogging means to us ...

Teeny

Wow, what a post!

Teeny Uglondis the Sardinian mafioso? I literally snorted over that one. And the "awesome monarch" line? Snorted again.

Sibling relationships are so interesting to me. I have friends who grew up hating their sisters and they never really got over it. And then, I hear about sisters like you and Sami who will fight for each other to the bitter end. My brother and I are that way, too. We grew up bickering and getting on each other's nerves, but we also always stood by each other fiercely and loyally and unshakably. So maybe that's the measure of sucess for sibling relationships: Both siblings have to reciprocate loyalty and kindess and caring or it all falls apart.

How great to have someone like Sami on your side. It's always nice to have someone at your back who can crack some skulls.

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Total 7 comments

Back2Blogging1

Today's the SITS Back2Blogging Challenge has asked us to re-publish a blog post with a title we really like. And then we can explain its significance.

I started to post "Life is a spectrum," because I liked that one so much I changed the whole blog to that title. But I posted that so recently that it might be as irritating as when they keep re-running the same episode of Seinfeld once a week. I swear I've seen that episode about the close talker 100 times.

So instead, I picked the post below. It happened this summer, so it hasn't been that long ago. But it was a milestone day. It was the first time I caught Billy making up a game of his own. Since that red letter day, we've had lots and lots of imaginative play. Some of it has been re-enactments of his favorite books or TV shows, but some of his games are recognizable -- and understandable -- only to him. There's one that involves Batman, Noah's ark and the planet Saturn, which I still haven't figured out. But it all started with the day ...

"So a pig, an astronaut and a tractor got into a race"

originally posted 07/06/2010 08:17 pm

 

toybarn_medium

Today Billy staged a race between a small plastic pig from his toy farm and a tractor. It went on for quite some time. During this race, which went around and around the dining room table, he hummed the "William Tell Overture" (the Lone Ranger song). The pig won -- which might have had something to do with the fact that the tractor was pulling a trailer carrying an astronaut and Linny from the Wonder Pets -- but that's not the point of the story.

Billy is really starting to explore his imagination. He's starting to make up his own games and tell stories with new endings -- in his own way.

Many of you have been on this journey with us since I started this blog -- and some before that. You know already that we're practicing Floortime therapy, which encourages us to follow the joy of our child. Imaginary play is highly encouraged by this philosophy of autism therapy, because it encourages not only communication, but also problem-solving and thinking more abstractly.

Billy is getting it. He's making progress.

He's still a pretty concrete thinker. He can memorize anything – and I mean anything – that has a name or a number or a specific concrete label. He's not yet four and he has an encyclopedic knowledge of road machinery.

So tell me how a kid who can identify a “steel wheel soil compacter” at 50 yards is incapable of knowing when he needs the bathroom. He's messing with me. I'm telling you that he could use the potty if he wanted to, if it didn't amuse him so much to see me unravel at the seams.

But I guess knowing when he needs to go to the potty – or telling you what color a carrot is, if there's not a carrot in front of him – is still hard. Telling you what he did earlier in the day or yesterday, understanding those vague concepts of time, is next to impossible ... for now.

It's like he lives absolutely in the moment, completely immersed in whatever or whoever he's with. He's not worried about what's going to happen tomorrow, and he's not bothered by what happened yesterday. He is totally with that pig as he crosses the finish line.

I could learn a lot from him.

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This week has been a wonderful walk down memory lane. Thanks to SITS Girls, Standards of Excellence, Westar Kitchen and Bath, and Florida Builder Appliances for sponsoring this opportunity to re-share some of my favorite memories.

Reader Comments

Love it!

Love the title, love the post. Isn't the back to blogging week fun? I'm doing it too.

My Daugher Was so Similar!

She didn't really potty-train until she was 4.5. Even now, at 6.5, she has more accidents than I think she should! I totally think it's her Asperger's that caused this. She gets so engrossed in whatever she's doing, that she totally forgets to listen to her body! It's pretty strange!

Billy

I love this story of imaginary play with Billy being 'in the moment.' I can think of 3 activities he does that keeps him engaged and in the moment -
riding his push scooter, playing ball, and being tickled. As for his imagination, I remember when he was two, he squeezed a magnetic oval
over the top of a ball and called it "Saturn." He is always a joy to be around.

Awesome Post

Thanks so much for your comment on my post on One Busy Moma. I really like your blog. Great post. Being a Mom is wonderful. I look forward to reading more on your blog. Oh and sprinkling toilet paper on his head, that's cool my kids did that too. When we first moved to TN it barely snowed the first year we were here so on Christmas day my daughter shredded up toilet paper and threw it on everyone!!
Have a great day

Imaginative Play is Huge

The close talker episode is a classic. I can watch it over and over again.
The imaginative play is such a huge step forward. At almost 13, my son still does almost none of it.
Love the title to the post; sounds like a joke I heard at a bachelor party years ago. Although there was a farmer's daughter thrown in there somewhere.

Awesome!

Hi! I love the title of your post. Really draws one in. I never knew of I think it was Floortime Therapy? Something like that. I will have to look into that for my 17 month old. I'm starting to get more creative with play with him.

Also, thank you so much for stopping by my blog (Sippy Cups and Cloth Bums http://the-chunkymonkey.blogspot.com)! You really gave me a new lookout. I love the comment : "With each step we leave behind with our kids, we step into something new and wonderful." I am putting that on the fridge. Thanks a bunch!

Beautiful Post! PERFECT title!

We could all learn a lot from the children in our lives! And I applaud you for pouring so much of yourself into your precious son!

Total 7 comments

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

Electrolux-Set

I want them!! (Thelma and Louise)

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

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

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

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

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

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

S_FB_MAndiBilly

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

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

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

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

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

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

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

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

Oh. OK.

I can say it: My son is autistic.

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

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

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

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

___________________________________________________________________

S_Billyalien

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

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

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

A few thoughts:

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

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

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

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

Reader Comments

The A-Word

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

Comment

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

Time Travel

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

The A Word

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

Total 4 comments

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