Wednesday, July 28, 2010

Wide-Eyed Parents, Close-Minded Professionals

I began asking questions about my son's development at 12 months.  Pediatricians, friends, relatives, everyone brushed my concerns about his quirks off to age, genetics, my parenting style or just a maddening wait-and-see.  A parent knows.  Friends, relatives I cannot fault.  Of course everyone wants to see the best in a child, especially a loved one.  But professionals are seriously lacking in education, awareness and proactive care.  If a parent is asking questions, it should be automatic for a pediatrician to perform tests, have the child assessed by a specialist, or refer the parent to a group or organization.  I called psychologists, children's mental health centers and clinics.  I'd call a few, get discouraged, and call more again when G's behaviors ramped up to a fever pitch and I'd become desperate again.  Each call was met with the answer that assessing G would
A.)  Not be covered by insurance, nor would therapy
B. ) Cost hundreds/thousands of dollars
C.) Take several appointments
D.) Be futile since ASD is not typically dx'd until 5 or 6, because so many ASD-like behaviors are "normal" for a toddler or preschooler
No kidding, I received this answer time and again.  I must share that I don't live in the middle of an isolated island with 2 doctors and a mule.  I live within a day's drive of Detroit/Ann Arbor, Michigan.  University of Michigan, home to some of the brightest, most innovative doctors in the U.S.. Home of Dr. Catherine Lord,** developer of the ADOS, standardized test for ASD, utilized worldwide.  I discovered this recently, or I'd have tried calling Dr. Lord's program at the U of Michigan.

I continued my frantic research, asking everyone I could for insight or answers, and still did not get any assessments until G was nearly 3 years old.  He was diagnosed with Sensory Processing Disorder and Speech Delay at 3, and began Speech and Language Therapy, OT and a sensory diet at home.  OT didn't help much, though we loved the center and his bright OT.  Still I persisted to ask his pediatricians, therapists at the OT center, preschool, friends, everywhere.  I continued to notice more and more divergent behaviors separating him from his peers.  To their credit, G was not entirely ASD typical in his presentation.  He's social, but not typically so, which was noticed once I finally got some experts to listen and to observe him for longer stretches.  Through exhaustive efforts, and the help of his preschool director whose ear I caught, he was given a complete multidisciplinary ASD team eval at 4 years old.  On the parent questionnaire portion booklet done by the school social worker (ADI-R, about:, I answered "autism evident" to nearly all, with varying degrees, with numerous examples to validate, except 1 that I can specifically recall (harming himself, thankfully not an issue).  Do you think G fell through the cracks?  Do you think someone missed something critical?  I do.  And I blame myself for not being more insistent.  For not finding the right information, program, pediatrician, therapist, friend.  I only found out about the Early On program * through an overheard conversation at a playgroup.  The mother had won home visits for her daughter to work on speech.   I tried for  months to reach someone at the education center, and before G was even assessed, he had aged out of the home service.  We'd missed the window.

According to the Center for Disease Control (CDC), of parents of children with ASDs, approximately 50 percent notice atypical behaviors by age 18 months and roughly 80 percent notice atypical behaviors by age 24 months.  But currently, the average age a child is diagnosed with autism spectrum disorders is 5.7 years. This has to change!  Read on for some promising new developments on early diagnosis. 

*More resources listed at bottom of page.

From PBS Facebook page:  Peter Tyson is the editor in chief of NOVA Online. His son Nick is autistic. On the Inside NOVA blog he writes about a new study published in the Proceedings of the National Academy of Sciences.My pediatrician This study reports on a new technology that analyzes vocalizations in very young children that offers hope of early screening... of kids like Nick for autism, as well as for other children who suffer from a language delay.

(Click link) Detecting Autism Earlier: "My son Nick is autistic. My wife and I first began noticing something was off when Nick was 18 months old, but our pediatrician said not to worry, he's just developing slowly, let's see where he is in six months...."

About the vocal profiling study:

About the voice analysis device:

Another study to determine autism with low-tech methodology - pupil size:

More about Peter Tyson's son Nick, in a blog post by him:  very touching, so human. 

June 24, 2009
All About My Son

Date Submitted: June 24, 2009

Why is it that, when I’m not with Nick, my 12-year-old autistic son, something will make me think of him in a way that suddenly gets me all choked up? I’ll be reading a book, or watching TV, or listening to music, when a certain phrase, or something somebody said, or a particularly moving musical passage will set me off. It’s a sudden spasm, like somebody snuck up behind me and struck me hard in the back. Sharp intake of breath, heart in throat, moist, stinging eyes. Once or twice I’ve even started crying. It’s all very brief, usually over just moments later. I’m left wondering, What was that all about? Why did that just happen? Why do I get so choked up?

Is it because of all we’ve been through? Nick was diagnosed at age two and a half. (Initially it was with Pervasive Developmental Disorder, but at age five he was rediagnosed with autism.) That was 10 years ago, when his sister was four and his brother was 14 and his parents were decades younger than we feel today. Ten years. Never was such a simple statement loaded with so much freight, and any parent who has been through a decade of living with autism will know what I mean. So much has happened: Coping with the initial diagnosis and with a beautiful boy who regularly threw tantrums out of the blue and who found the world too much to handle. With the support of our families, visiting myriad specialists, some in other states, and trying every therapy and coping strategy, every diet and vitamin regimen under the sun. Sometimes seeing real glimmers of hope in Nick’s progress, and other times watching him slip backwards. Worrying about our other children and how they were being affected. Eventually having our marriage end under the strain of it all. And then there’s Nick: Think how much that innocent little boy has had to deal with.

Is it because Nick doesn’t live at home? By the time he turned eight in 2004, Nick was waking three or four times a night, screaming, kicking, slamming doors. Days were hard enough, but now nights? We felt terrorized in our own home, and after six years our emotional resources had dwindled to frankly dangerous levels. More importantly, we realized that Nick was crying out for help as best he could, and that we could no longer help him to the degree he needed. Or even ensure the basic safety of a child who, in the rare times when he slipped out of our grip, would run straight across our busy road. The decision to seek a residential placement was one of the hardest of our lives; even after we decided we had no choice, it took a year to make the first phone call. Would he be loved there? Would he still love us? In the end, we found a wonderful school, the New England Center for Children, and with the help of a good lawyer and great therapists and evaluators, we were able to put together a solid case and win a residential placement at NECC. Nick has lived there full-time since October 2004. It was a godsend for everybody, first and foremost Nick, who now gets round-the-clock structure, safety, and care—from absolutely saintly people, I might add—and who has begun to blossom, drawing his favorite Sesame Street characters with ever greater artfulness, communicating his wants and needs more effectively, and singing up a storm in his perfect pitch.
Is my sensitivity because of the tragic nature of Nick’s story, as that of any child on the autistic spectrum? Nick developed normally until 18 months. He’d look us straight in the eye, he was very engaged, full of life—a perfect baby boy. But at 18 months, he began to withdraw into himself. The tantrums, the perseverating, the veering off into a universe of his own—all that began. What did he do to deserve this? What would he have been like without autism? It’s clear now he’ll never go to college or marry, have kids or a typical career. He’ll likely be institutionalized in some form his whole life. And the world will always be too intense for him. It must be like watching a large-screen TV from two inches away (which Nick does, by the way). How can you possibly tolerate, much less make sense of, what you’re seeing and hearing? One sure antidote is nature. I take Nick hiking, canoeing, camping, and he always grows calm and enjoys himself, in part because he gets the exercise he needs.

So what’s the answer? Why am I vulnerable to instantly, unexpectedly getting all choked up? I get those abrupt heart tugs certainly because of all we’ve been through, because I only see Nick on Sundays, and because autism is tragic. But the main reason I suddenly get all emotional is because I love that boy no end. Like his mother, sister, and brother, I adore him, and for exactly who he is. Nicksterama. Slim Boy. Dr. Cute. I have a thousand nicknames for him, which you do when someone doesn’t speak much. And when something reminds me of him and I say those names and picture him in my mind, sometimes I get that whack in the back, and I start blinking and swallowing. He’s trying so hard

— Peter Tyson

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Tuesday, July 27, 2010

Berry Good

Love fresh veggies or fruit? Like to make picking it a fun family event? If you've never been picking, try it! It's a fun family day, and a wonderful way to teach kids about nature. Produce doesn't just magically appear in the grocery aisle. :)

Check out his great website:
You can find farms/festivals by state, listings by veggie or fruit, by season, etc. For each fruit/veggie it has recipes, picking tips, canning/freezing tips, nutrional values and health benefits. Truly a wealth of info.

Here's what we're picking this week:
(click link below for berry good blueberry tips)

Blueberries, Blueberries: Blueberry Facts, Festivals and Picking Tips

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Sunday, July 25, 2010

Jumping G's

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As a parent of a special needs child, I find myself constantly, helplessly, shamelessly hovering: a Helicopter Mom.  Yes, it's necessary for his safety; I still cannot afford to trust his judgement.  I watch his actions and interactions to be sure he won't be hurt mentally or physically or act inappropriately.  But I also watch to note teachable moments for later, to marvel at his progress or agonize over backslide.  Sometimes we need to step back and let someone else take over.  Even (gasp!) to let our special needs children find their own way.

Love this pic: the focus on G and his purposeful stride as the world around him blurs by.

The decision to move forward into Tae Kwon Do came entirely from G and his desire to be like his older siblings, who are 2 belts away from black belts (yippee!).  My husband has been pushing; I did NOT think G was ready. I feared that he wasn't yet ready to handle the rigorous, disciplined acumen that TKD demands, especially in a neurotypical setting with a Master unaccustomed and untrained in special needs.  I checked into specialized TKD classes at therapy centers, not finding any close enough or within our budget.  My husband took G to watch his 2 older siblings at TKD when he could.  I'd tried for 3 years to sit on the sidelines and remain controlled and quiet like the other parents and siblings - ha!  What a losing battle that was for my no rules, no boundaries, tantrum-prone, ASD, sensory seeking/overloaded G.  Just getting him to stay off the gym floor, away from sleeping babies, or from tumbling childrens' board games, from playing on the equipment smashed into the corner - became a tantrum mess.  G would scuttle from disruption to disruption in the crowded small space.  He'd take a cell phone from a parent's belt and play with it.  He'd nestle up to someone working on their laptop and punch buttons.  He'd pull out all the games from the cupboard and dump them, then climb the cupboard.  He'd run in the bathroom and wash his hands for 5 minutes or flush the toilet over and over.  He'd try on everyone's shoes and coats in the corridor, mixing them up.  Then he'd throw them.  He'd drink from the exercising kids' water bottles.  He'd run to the door and out to the parking lot and into traffic, me chasing behind, panic-stricken.  All of this in a 10 minute time span, with no words, only grunting or laughing in reaction to my frustration and attempts at redirection.  I finally gave up in exasperation, only going inside the gym with G when I needed something urgent. 

So my husband took over a few months ago, heartily believing that TKD would win over chaos.  He began taking G for a few minutes near the end of TKD class, then 5 minutes, 10, 30, and recently the whole class. He started to report that G was copying the students' movements.  Then G joined in for longer sequences, standing way back on the gym floor.  Then he delighted that G and the TKD Master  had "connection", they seemed to enjoy each other and G sought the Master out.  At home, G began donning the kids' old outgrown uniforms and play-acting with them. Next - what really was the clincher for me: he sat through an entire testing, a 2.5 hour, hot ordeal sitting on the cramped hard gym floor.  He watched kids do their forms, get tested on terminology, break boards, and the final belt presentation ceremony.   That's not to say he didn't fidget (with my always-present bag of tricks) or that we didn't have to be firm, but I would never have imagined that he'd sit for that.   Heck, most of the adults were squirmy and "playing" with electronic devices.

So I started to take G to watch the kids at TKD and to grow the relationship with the sport, the gym, and most importantly: the Master. This week I took a nap one afternoon (an almost-never luxury, and only because I have a raging sinus infection).  When I awoke, my daughter and G ran into the family room to show me their lively activity during my nap. They were both fully outfitted in sparring equipment and had been practicing sparring in the hallway upstairs (it's a wonder my priceless family photos are still intact!). G insisted on wearing the uniform all afternoon and cried so hard when I tried to get him to change to go watch the kids at TKD, that I simply gave up and let him wear it, green belt and all. The Master laughed and asked G if he wanted to do TKD. G replied, "Yes, I want to go to class like N and M!  Look at my uniform!" So, I asked the Master if he thought G was ready, and he agreed to let him participate in a trial class. On the day of his trial class, I was nervous, so nervous that G would break into tantrum, or get distracted.  I was prepared to leave on the fly with him if necessary, at-the-ready with a backup reward of going for ice cream to soothe him if it flopped. Or worse, what if he loved it, but the Master told me that G wasn't ready yet, causing hurt and rage and major difficulty. How would I be able to manage taking the kids to TKD if G was shunned?

Here, the opening 2 minutes of class, warm-ups. I nervously laugh, his sister giggles and whispers as we watch our little cutie try with all his might to keep up with the jumping jacks.  I say, "We'll have to work on this," Yup.  Happily.

G's 1st Tae Kwon Do warm-up, he's far right back row:

Only after I got home and viewed the video I'd taken a few times did I notice that all of the kids in class were doing their own version of jumping jacks, no 2 perfect or the same.  I've since learned from a PT that jumping jacks are one of the hardest skills to teach or master.  All I know is that we got such a kick out of our little guy trying and sticking with it.  He didn't get frustrated or tired or discouraged, he just kept going, and loving it.

No worries.  G did an amazing job.  He kept his focus, stunned the Master, me and his sister.  He was enthusiastic and tried, though at times with a lag to process some instructions.  I believe that his mental and physical processing will improve when the movements get more rote, when he begins to feel the patterns.  I also think that TKD will help with pathways in his mind, to speed his processing time.  I know it has already given him confidence.  That's the reward that I'm most thrilled about.  Shout out to G, and to my husband for his persistence when I was not able to deal with yet another hurdle, another tantrum, another failed attempt at an activity.  It worked, and I can't wait to see where TKD takes my G!

Friday, July 23, 2010

Creative Fun: tap into your inner child

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This is way I'd like to shop...

This would be a great way to let off a little energy in middle/high schools...

These creative guys hit it big and you can see why... 

The viral that got them noticed...

Wednesday, July 14, 2010

Matisse Musing

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Purple Robe and Anemones
by Henri Matisse

There are always flowers
for those
who want to
see them.


Ivy in Flower

It has bothered me
all my life that
I do not paint 

Harmony in Red

takes courage.

He who loves,
Blue Nude II
flies, runs, and rejoices;
he is free
and nothing holds him back.

Still Life with Vase of Flowers and Plate of Fruit

My curves
        are not crazy.

Matisse Bio:

In NYC?  Don't miss
Matisse: Radical Invention, 1913–1917
July 18–October 11, 2010

About the exhibit, from Art Institute of Chicago.  Don't miss the videos of Matisse drawing and painting.  The painting video is particularly interesting because it ramps down into slow motion.  How cool is that -to watch his creative approach and connection between eye, mind, brush, and finally canvas.

A short interview with the show's curator:

Monday, July 12, 2010

Temple Grandin HBO Movie Receives 15 Emmy Nominations

From Autism News:
Temple Grandin HBO Movie Receives 15 Emmy Nominations

Guess I'm not the only viewer with 2 thumbs way up!

Very deserving. Well made, touching, eye-opening awesome movie. In interviews and the lecture I saw her present, she admits that the movie is very close to reality and she loved Claire Danes' acting.  After seeing her in person and video interviews, I'd agree that Claire Danes acted wonderfully.  While not every autism story is this successful, Temple Grandin is bringing much-needed attention to our world.  Different, not less.

Making of:

A full list of the nominations and other great interviews and Temple news can be found on Temple Grandin's website:

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Saturday, July 10, 2010

Pee Stick Memorabilia?

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Ok admit it - who saved their home pregnancy test?
Was the Facebook question.

My answer, a story I'll tell over and over until everyone is tired of it. 
I'll write the embellished story later.

After years of infertility treatments, dozens of pg tests,
giving up on the bio route and 2 wonderful adopted children; no.
But 4 years later when I took a test and it read +,
I went and bought 4 more, just to be sure.
I took photos through my tears, and still have the tests. You betcha! ;}
Little G was our 3rd little miracle, a bio-miracle. 
Ok, crying now...

Check out what EPT is doing to help you cherish those pee sticks forever.
They're offering a gift with purchase to "Remember the Moment You Knew" .
Maybe I'll order one, especially since they're purplicious. 
Only problem is, I don't need any pregnancy tests!  ;}

The offer (coupon outdated!):

The fun article:

Friday, July 9, 2010

Blu and Banksy

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Got 9 minutes? 
Catch this thought-provoking, spectacular stop-motion videotorial.

BIG BANG BIG BOOM - the new wall-painted animation by BLU
from blu on Vimeo.

More BLU:

How does stop animation happen?
Here's a VERY simple explanation:

How Stop Motion Animation Works from 365 Video Blog on Vimeo.

Another Blu collaboration which shows the process here and there,
so you get the tiny glimpse of the extent of painting, moving, repainting,
setting up cameras, shooting photos, then producing the video, soundtrack, etc.

If you enjoyed Blu, check out graffiti with a message by Banksy:
His work on right was recently discovered in Detroit...

Thursday, July 8, 2010

My Champs

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Congrats to my 10 year old M, whose softball team won the final championship game tonight against the only team they'd lost to all season.  She had a great game with key plays, which made it even more exciting...especially since Grandma and her Uncle travelled an hour to watch her.  Plus her whole family. Huge shout out to G for this, since we haven't been able to sit through a whole game, activity or function in years with him.  Of course I planned and packed enough activities, snacks, and drinks for a week; my husband I tag-teamed it; I walked way around the park with G to follow the magnificent flight of a hot air balloon, but we made it work.  We were there for my M, to support, cheer and take photos.  Yippee! 

How sad for my 2 older NT (neuro-typical) kids that this was a unique event, and not routine.  Most kids have a parent or two or their whole family for each game.  Not my kids, not this year.  Talk about feeling like a loser parent.  This season's games have been at fields without playgrounds, which makes G get into mischief/danger or create it.  His activity and judgment level is that of a 2 year old.  Unfortunately, he's also very big for his 4.5 year old self, and looks 8.  This only serves to have him appear more ill-behaved.  He has boundary issues with dogs, babies or people's items, which makes me flustered and apologetic.  He loves bleachers, but is not coordinated and falls.  He follows other kids under the bleachers, but gets hurt because of his clumsiness and lack of judgment.  He has a penchant for throwing sand, rocks or wood chips. A few weeks ago he threw rocks at a car, with a family inside, scaring the children.  Not good at all. Sigh.  When I try to redirect/stop him from any of these behaviors, he's likely to fly into a huge tantrum, screeching, crying and kicking; causing stares and angry looks (especially his siblings, who are mortified).  Not worth it.  Instead I drop off the N & M, thankful for the parents who cheer loudly for them, knowing they don't have family there for support. 

My husband works ridiculous hours, so most practice and game nights I take both kids to their fields and take G to play somewhere until I have to go pick them both up.  I'm so glad to be done for the season!  No more juggling and rushing around!  No more apologizing and feeling guilty - utterly exhausting.  Just back to a single sport now - TKD (Tae Kwon Do), which we may start him on soon.  My husband has been pushing for G to start TKD, but I've resisted, thinking he wasn't ready.  Then I took him to the kids' belt testing a few weeks ago, which was 2.5 hours in a crowded gym, sitting on the floor watching.  He kept quiet and peaceful for the most part.  Who was this boy and what did someone do with my wild G????  I've never been able to sit for more than 10 minutes with him to watch them in their TKD class.  That was enough to convince me!  I'm all for it if TKD holds his interest.  Some therapy centers offer TKD for ASD.  It may teach him responsibility, respect and discipline, but I worry the the master may be too hard on him and not understand G's issues/needs.  But maybe he'll be better for him than he is for us.  He did great at gymnastics - I believe the routine aspect appealed to him and regulated him.  The same may work for him in TKD.  I hope so.

My Facebook friends likely think I'm a braggart, posting about the kids' achievements. This is my way of giving them kudos. I can't be at their games, but I can post photos and show them how proud everyone is. I have to make it up to them somehow.  As I downloaded tonight's game photos, I cried when I saw the photo of G holding M's trophy.  He was enamored with it, just gazing in amazement.  When the team's huge trophy passed by he wanted to see it.  The coach's daughter knelt down and patiently explained it to G (what a sweetie!).  He listened, then walked in a full circle around it, checking it out thoroughly.  So awestruck.  His 11 year old brother N and I shared a moment of noticing the cuteness of him in that moment.  I worry that G may never get the chance to achieve an award.  I worry that he'll not be able to regulate or mainstream enough to last through a whole game of anything, not follow rules, not be a team player, blow a gasket or hurt someone.  Sure, there are lots of kids who don't get trophies, but he's got talented siblings who get awards for their achievements. He'll notice.  Logic and reason don't work with G, he only understands black and white, have and have not.  Not will get or may get.  All I can do is try, check out a few sports or activities to find a good fit.  If that doesn't work, we'll try for an academic or creative talent.  He gets negative feedback for his actions so often, I'd just love to boost his confidence/pride with kudos.  In any case, he's my champ, the same as my other kids.  He gets his kudos daily from us, and he returns them with his smile and hugs.  We all win, we're all winners in my heart.

Tuesday, July 6, 2010

Google Doodles

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Love Google Doodles?  I'm decidedly a fan. 

More info about the Google Doodles:

A full vivual history of Google Doodles:


Get doodling...or googling. 

Google doodling? 

Doodle googling? 

Just have fun!

Caught in a Rainbow

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Caught in a Rainbow, Ruth Palmer

☀ Even after all this time
the sun never says to the earth, "you owe me".

Look what happens with a love like that.
It lights the whole sky. ☀  Hafiz

Happy Sunrise, Ginette Callaway

Color Your World Orange, Sari McNamee

Orion, John Naylor

the beauty, wonder and inspiration
of parenting on the spectrum.
☀ my sun. my sky. my light. ☀

Monday, July 5, 2010

Tell Someone : Happiness is a Journey

Click-spiration. Begin your journey, stay on course.
Tell Someone : Happiness is a Journey

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Tell Someone : You Are...

Click link if you need a little love.  Don't we all?  Pay it forward.
Tell Someone : You Are...

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Saturday, July 3, 2010

Snickers Caramel Apple Salad (not-so-salad, oh-so-dessert)

Happy 4th of July Holiday weekend!

Thought I'd share a fun dish to take to a potluck. A few years ago, I fell in love with this at a chili cookoff.  I subsequently played around with the recipe each time I attended a potluck that year and finally hit upon a winner. Delish! This is a salad by name only, so totally dessert.  Let's face it: a salad with Snickers?  Don't even think about calories, fat, or carbs; but it has plenty of FIBER!  Plus appeal (and a-peel) for all ages. :}

Snickers Caramel Apple Salad - 105580 - Recipezaar is the first cooking/recipe website I joined years ago before there were a gazillion.  I've strayed, searched and tried others, but always go back to RecipeZaar.  Love it.   

Second choice recipe site:
Excellent family everyday recipes plus cool party recipes, many very simple - gotta love that!
Here's a simple recipe for Red Lobster Cheesy Garlic Biscuits - another good potluck item:
And their 4th of July idea page:
If you've ever seen their magazine Food & Family, it's packed with great recipes and how-to's.  So many ideas.  It used to be a free subscription, now it's still pretty cheap ($14/year).  The kraft website has all the same recipes I think, but the magazine is fun to breeze through and see gorgeous photos.

Happy Potlucking, Happy Cooking!

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