Mistletoe, Merriment, and Unsung Heroes

12th Annual Mistletoe and Merriment Concert

Last night a child named "Cisco", whose favorite thing to do is "throw stuff down" got to walk across the stage using his walker, throwing down gifts to the tune of "Mr. Grinch"....until finally Cisco and his entourage made it to the Christmas Tree, a very, very large, heavily decorated Christmas tree, and to the delight of Cisco (who by the way, could barely even get out of his wheelchair 4 years ago), and the even greater merriment of the audience, Cisco, the Grinch, threw down the enormous Christmas tree and laughed!!

Then Missy Worden, the world's best music therapist, who just happens to work for Fulton County Schools, announced the next act, two students in 5th grade who have known and loved each other for years. Missy explained to the audience (another full house, by the way) that these 2 special needs students always missed each other when one was absent, and just were blue without each other. Missy sadly explained they would be in middle school next year, so this would be their last time in the Woodland Elementary School's famous concert, Mistletoe and Merriment, and then opened the curtain.

They sat happily on high stools in full hippie costume, a beautiful boy and girl, and lip-synched "I Got You Babe" (well actually they were singing along pretty robustly) to an entranced audience of parents of special needs kids, special education teachers and parapros, and whoever else has managed to figure out that this really is the best Christmas Concert in the whole world. Needless to say, they got an enthusiastic standing ovation and thoroughly enjoyed their song in the limelight, their last song as a pair in that wonderful concert we get every year.

When Tommy first got diagnosed, we were so devastated...and it took a couple of years to really recover from the loss of "our" dreams for him. But when your child is diagnosed with a disability, you meet a better class of people. They, along with fellow parents and the good Lord, show you you are not alone, and proceed to not only teach but really LOVE your child. They are not whiners (special ed teachers are the toughest, most practical people you will ever meet), they are not whimperers...they, their parapros, the therapists, really appreciate our kids and not only love but accept and even embrace their differences. Diversity.

And they have no patience with whiny parents who feel sorry for themselves, nor should they. Your child is a gift, they seem to say, embrace him, love him, and live your life. And they teach us to do just that. Although sometimes they would surely like to give us, the parents, a spanking to hurry up the process.

All the while teaching kids like Cisco quietly with strength and patience to walk. Teaching kids like the Sonny and Cher pals to take care of themselves, and teaching kids like my Tommy, to talk. And teaching ALL of these kids to sing, dance, and celebrate the holidays in a beautiful annual performance. They are unsung heroes...who teach our children to sing.

So thank you Missy and all the teachers and paras, for teaching our children to sing, and once again making the best concert in the whole wide world (Mistletoe and Merriment) happen for the 12th time! We love you!! And we DO know you are heroes.

The POOP Wars

We will NEVER forget the day that Dr. Pakula, Tommy's neurodevelopmental pediatrician looked at us over her glamorous reading glasses to tell us, "This is the hardest group to potty-train. You may need professional help."

Almost 4 years later, last week, I had a moment. Katie, Tommy's ABA therapist was here, and he RAN into the bathroom (with no prompting), pulled down his pants, pooped, SORT of wiped, then washed his hands (with some prompting he didn't flood the bathroom or drink sink water and then spit it into the toilet), and ran out. We looked at each other, smiled and just said, "Wow...." With a tear in my eye, I told her, "It's been a long haul," and she knew exactly what I meant.

It's one of those dirtly little secrets about autism that nobody likes to talk about, The Poop Secrets!! According to the National Research Council surveys, toileting issues and behaviors, including stuffing toilets with paper or items, playing in toilets, flushing constantly to the frustration of all, and smearing feces make toilet training more difficult and intensive for children with autism. I would add to this list the fact that motor control and hyperactivity prevent some children with autism from wanting to sit still long enough to "get the job done"....and challenges with sequencing steps of behavior require picture instruction and carefully planned reward systems.

2 years ago, Kessler watched me have an out-of-body experience with the poop wars...we had been briefly discussing Tommy, who had run over to jump on the trampoline....within minutes, he was COVERED, the trampoline was COVERED, he was naked, and as happy as a clam, jumping jubilantly covered in his own very interesting crap. I lost it....I screamed at the top of my lungs, NO....NEVER, NEVER, NEVER TOUCH POOP....POOP IN THE POOOOOTTTTYYY!!" and then spanked his bare, poop-covered butt. He then cried and threw himself on me, so we were both covered in poop...him crying, me crying, and the therapist staring at us wondering if this job was really going to be worth it or not.

I felt myself leave my body and float up over the trampoline, which was brown polka-dotted by then, I saw my crying, brown, polka-dotted child, and my own brown polka-dotted self, and I wallowed in self-pity and frustration and Yes, Brown Polka-dotted POOP despair, that's right.

We read all the books, we got advice from everyone, we entered him in the Marcus Institute because Dr. Pakula said they were excellent at getting "these kids potty-trained..." NOTHING worked....

We prayed for grace and developed a level of patience that only that guy Job from the Bible could attest to. We timed our outings carefully and tried to control our anxiety about what might happen with pooping in other places. We did our very best to keep our dirty little secret to ourselves.

We would spend HOURS in the bathroom with Tommy, KNOWING he had to poop, and he would sit there happy as a clam watching DVDs...and then after 2 hours, we would give up, and he would run outside and crap in his pants in a corner of the yard while we cried in desperation and exhaustion. We learned to "Fling Poo" in the woods with leaves, through the air, we flung poo, and we wept.

Finally one Christmas, I said, "This is it, I can't take it anymore, I know it's the holidays, but he is NOT LEAVING THE BATHROOM UNTIL HE POOPS IN THE TOILET." My family was concerned, but I was determined. This is baby bootcamp, I told them, and this Christmas, by God, IT'S HIM OR IT'S ME. I set up camping gear in the bathroom, snacks, sleeping bags, and books. We did not leave for 5 hours...he clearly needed to poop, but.....and then finally, with me holding him on the toilet, HE POOPED IN THE TOILET. I celebrated, Mark celebrated, and my family decided we out of our damned minds, and you know what? At that point, we pretty much were. Well, that Christmas battle wasn't the end of the POOP WARS, but at least it was the beginning of the end, and just to let you know? Camping out in the bathroom and living there until they poop DOES get the job done.

Dr. Pakula's comment, I had thought, was RIDICULOUS. What do you MEAN this is the hardest group to potty-train, that we might need 'PROFESSIONAL' help...(which ended up being for him AND us by the time it was done).... I thought, she doesn't know me...I can do ANYTHING!!!

Well, she was right - it was unbelievably hard, and it took the strength of a lion...so now you know a little dirty brown secret about autism.

But don't tell anyone else, ok?

When you meet a person with Asperger's Syndrome, you will know it within minutes...they will engage on you on their topic of interest, and you will be impressed at their knowledge.

Just don't try to talk about your own interests or self with them.

"The Curse of Asberger's".... is the disorder of self-absorption, brilliance, amazing memory, and absolute indifference to what anyone else goes through unless it relates directly to them.... marked by the inability to RECIPROCATE IN CONVERSATIONS and a very obvious lack of eye contact. And a tendency to go ON and On and ON about trains, the Beatles, or Superheroes.

As adults, an inordinate number of them work at "Best Buy" (bless you, Best Buy, Circuit City, Used Record Stores, and in computer, technical, and accounting industries)

I spent 45 minutes trying to get away from a salesman at Best Buy the other day (no eye contact, nice guy, clearly bright) who proceeded to recite the entire history of "They Might Be Giants"....sigh, I was tired, but I thought, man, this guy is on the spectrum...let it be. Wait him out. How many others are going to do that for this guy?

Sound like someone you know? Could be an undiagnosed Asperger's Adult!

The Asberger's kids are being diagnosed, but not really treated in most public schools...we still just don't seem to get that a person's whole life, future, relationships, everything...is affected by whether or not he can reciprocate in a simple conversation. Like that is an unimportant skill that you should just "pick up" along the way. HELLO WORLD, IT'S NOT PICKED UP IN THIS POPULATION AND YOU ARE WRECKING THEIR LIVES BY NOT INTERVENING IN THIS AREA AT YOUNG AGES. Yes, public schools AND hesitant parents. I'm talking to you. If you think they are annoying as children, then wait until they grow up....or don't. Social skills classes and appropriate intervention could make all the difference in the WoRld to this population.

Nuff said? I think so too.

Despair

I hate the Serenity Prayer.....I threw away the plaque of it I had on the wall.

It seems like such a cop-out.....

The courage to change the things that I can...and the wisdom to know the difference??

Screw you, Serenity Prayer.

I don't WANT to have the wisdom to know the difference. I don't want to think about the fact that my 6 and a half year old cannot speak in sentences...that his articulation is impossible for most people to understand.... I don't want to think about the fact that he PANICS in the Panda House....or that the newest medication they are trying is making it worse...

He looks tired, and anxious this week on this drug...and if I turn away for too long, he stomps his foot in the toilet, takes his toast and makes confetti out of it and throws it around the house...or runs down the street naked.

The WISDOM to know the difference?????

I know I should be concentrating on the highlights of the day....
* He's learned to dive wayyyy down under the water to get at his precious sinking watering can.
* He told the therapist to "Go away" so clearly that we both were delighted!!
* He learned to swim in the ocean this summer...

But once in awhile, as I watch him in his isolated world....not part of the groups of other kids playing their games and having their conversations...he can't even begin a conversation...

I despair...not often....just once in awhile...

Lord give me the strength to accept the things I cannot change
the courage to change the things that I can
OK, and the wisdom to know the difference....
But don't take away my hope that my son will some day....

have a real friend that he actually talks to some.....
speak in sentences....
stop wanting to stomp his foot in the toilet anytime I'm not behind him....

and SCREW the wisdom...I HATE the wisdom.

The Serenity Prayer just absolutely sucks.

A Friend is a Festival of the Heart

My Friend Soren

I've got this friend named Soren..he's funny as can be!

He doesn't care that I don't talk, he wants to play with me!

He loves the hose, the trampoline, and all my favorite things.

He laughs, he shouts, he runs about - we eat and drink like kings!

He steals the hose, it makes me mad...then sprays the water high.

and soaks me while I laugh and run, while for that hose, we vie!

Let's climb the climbing wall and SHOUT! Let's put shaving cream all about!

and cover the house and cover the dog...until the neighbors are Agog!

I never played with a kid before, but Soren is SO LOUD!

He makes me play with him and well....it makes me kind of proud!

Mom keeps us playing with a smile, while Katie does her part...

I finally know what Nietzsche meant by...

A Friend is a Festival of the heart.

Today reminded me to calm down and stay focused.

We had such a good time together....in the car, he said
"Donald".."Hambooger" I said what do want on your hamburger...silence..I modeled "ketchup"..then I repeated, What do you want ON your burger. "Ketchup!" (this is called errorless learning...you model the answer and ask the question again, with great enthusiasm...it is an ABA method to teach kids with autism to talk)...MODEL WHAT THEY WOULD SAY IF THEY COULD, AND THEN ONE DAY....

We went to see the goats, chickens and donkeys...he smiled but said, "GO!!" I said "Ok then, bye goat" (He echoed, "Bye bye goat") I said, "By chickens!" Echo.

Then we got around to the two donkeys...this time, he got out of the car and tried to run down the road and I got him back and said, "Help feed donkeys grass..." and he did, smiling. I said, "What are they doing?" He said "eating!" I asked, "What are they eating?" He said, "Grass" (I'm so happy; these little answers come very hard-earned...)

We went to the playground and he hopped onto his little bike with training wheels and rode it to the swings. and said, "King High!!" I waited...so he would have to use language to get up onto the very high swing and it was worth the wait...."UP" he said....and I put him up. I waited again...nothing is free in our world..fun is earned with words. "PUSH" (happy as a clam, I pushed him high)

"Climb up!", he says. I'm overjoyed...we're climbing a big ladder. But he's scared. He used to scamper up it without any fear...we'd better practice more, I guess. He says, "GO", and I say, "Don't forget your bike..." He jumps on it and he rides (he can't stop so I have to run right with him with my hand on the back of his seat...and he won't let anyone put anything on his head, so it's without a helmet and people stare at me and clearly, they want to call DEFAX)....

We ride down the ramp to the river and he climbs up happily and spits into the water (it's one of the only places he's allowed to spit...and no, I'm going into that right now..this history of spitting frigging everywhere). He's tired...fighting a cold; he looks at me, grabs my face, looks right into my eyes and yells, "SEATBELT ON" (which means I'm tired and ready to go), so I say, "Ok, but you have to ride your bike." He jumps on, I help push him up the hill to the car." "I want water" (I'm jubilant with all this language today!!) I get him a glass out of the drinking fountain and he takes 4 sips and spits the 5th...I yell "WATER IS FOR DRINKING!! ALL DONE WITH WATER"...sigh.

In the car, he says "skittle, skittle, I want skittle..." I ask "What color?" (We're working on colors...he's always had a hard time with colors...and still does) but gourmet jelly beans are a great color-teaching aid...so we work...

The car is a great place for language. What's that? What do you see?

Publix is even better! Especially since he HAS to tell the baker which kind of free cookie he wants...and he has to find the dogfood for Maggie, the pasta, the grapes..

We had a good day. Good communication. Building on what he's got, and little by little adding meaningful words. He's 6 years old, and this language thing is coming late...but the bottom line is: BUILD ON WHAT YOU HAVE, MODEL WHAT HE WOULD SAY IF HE COULD, ONE-ON-ONE IS CRUCIAL RIGHT NOW, AND DON'T GET LAZY OR DISTRACTED. Roll up your sleeves, get extra help (I put out 3 emails today looking for extra therapists), and help him learn to communicate.

Together Alone

He's sifting sand...all alone...other kids are playing with toys, talking, arguing.

The family is laughing and visiting...but I can't feel right because he's up there

By Himself....I'm joking and chatting while he's all alone...

He doesn't seem to mind, but this isn't what is right...what is right is that we find a way..somehow-to include him in this event...we get him to jump with another kid, we get another kid to follow him....SOMETHING!

Swinging alone...sifting alone. He drops his beads to the floor and jumps. This repeats 20 times. He spins his "anemone", he asks, "Hose on?!" 30 times straight. Everything is 20 times.

He's 6 and a half....he repeats a few things a lot. But his FACE shows SO MUCH MORE!!

He understands so much more than he can say. But people write him off because he can't talk to them. He's in a different world, trying to find a place of his own. Other kids try to talk to him, and he doesn't answer...so they go on...

But when he wakes up in the morning, full of joy, a face of wonder...when I pick him up at noon from school to start our busy afternoons...what happiness, a big hug to see me--we HAVE to get him to play with other kids. Thank God for Soren!

I wonder, HOW???? about all the other things he needs to learn? How am I going to teach this child to read when he won't sit down? With additional diagnoses of hyperactivity disorder and verbal apraxia that make it even MORE difficult for him, as if the initial diagnosis of autism wasn't enough.

Will he read? Will he write? Will he speak in sentences?

Or will the rest of us just learn that there is more to life than words, words, words.

Every Word is a Pearl

Every Word is a Pearl

When you are "in the middle", every word is a pearl.

You try not to hope for too much, but you never stop hoping...

You temper your expectations, but you work so hard to bring the language.

Your favorite stories are the ones where other parents with autistic children say, "Oh, my Johnny didn't talk until he was 7, and listen to him now!!"

You look around at your fellow parents with autistic kids and envy the ones whose children are communicating and pity those with nonverbal children...

My son is using some phrases, but it's mostly words...let me tell you how they thrill!

We were riding down the road the other day, and Tommy said "Hangooger!!"
For the first time ever, he said, "Hamburger!" to indicate that's what he wanted! Excited as can be, I drove STRAIGHT to MacDonalds...always, to show him, the power of his words.

I found an amazing book of poetry recently that had the poem that we all dream about. The poet is an Atlanta native, Elizabeth Newman. I had never read poems that described my feelings and Tommy's state of being so perfectly. The poem about language coming made me cry and strengthened my state of hope and longing. Here it is:

Can This Be True? by Elizabeth Newman

Can this be true?

It is almost too much to believe,these seemingly sudden turns.

She has changed her pattern of being so unexpectedly

that I have yet to change my own habit of mind.

She speaks to us in sentences, words of pure music, sounding strong and clear

like the bugle of a rescuing cavalry liberating our giddy ears!

She's moved from repetitive nouns and verbs to prounouns! prepositions!

articles and adjectives! which pepper her melodic phrases

with a scent we inhale like air itself!

She asks for hugs and kisses and gives them often with smiles and giggles

and baby arms wrapped tightly around our overwhelmed shoulders.

She laughs uproariously when we ham it up

and finds her own antics just as entertaining!

Well past seconds, now she spends long sweet minutes, even hours

engrossed in interactive games with eager playmates

She even Imagines monsters growling, owls, calling, and toys greeting her.

Such normal, everyday stunts for any young child.

But for our child these things are MOUNTAINS of accomplishment.

They are hard-earned trophies she presses into our hands,

inflating our hopes, filling our hearts, enlarging our lives!

Can this be true?

For ours is a child who once proteced her delicate senses

by covering her ears from unknown sounds

humming to block out requests

sliding out of chairs to avoid looking at a puzzle

Walking in circles to create a meditative dance

climbing high to feel balanced and weighted

throwing, pulling, biting to fill sensory needs

and shunning interactive play

to avoid sensory overload

The SAME child now clamors for attention,

delights in the sounds and sights that surround her

mimics our words and intonations,

invites us to hold her lovingly,

to be with her in imaginative, playful ways!

The fog has lifted from her world!

Yet my head is still full of clouded memories,

silver-lined, to be sure

for she has chosen to come to us, as we chose to go to her.

And her coming, is an event of such magnitude

that I imagine I will spend years ahead

absorbing and drinking in

the fragile wonder of it all.

Thank you Elizabeth Newman, for helping me explain how every word is a pearl.

The Divorce Rate Among Parents of ASD Kids

The Stats are high...80%, 90%...as if the national divorce rate average of regular famililes isn't high enough, right? And you wonder why it gets so high with these parents of autistic kids.

Well, maybe scroll down to the blog below about behavior problems, costs, stress, etc. in our lives and you might start to understand these stats.

But honestly, to understand them, you have to BE them...which is very different.

You would have to have had the experience of watching your child develop and knowing that his development is wrong.and then having your spouse and most of your friends and family tell you you were being "neurotic"and to stop worrying. Then being basically alone in finding your child the help he needs...which more than anything, is the TIME and energy of those who love him to keep him communicating instead of spinning the wheels of little cars all by himself.(Not surpisingly,most of the stats show the spouse finding the speech therapy, OT, ABA, and Floortime, is the mom, just as the mom is the primary caretaker with typical kids)

Having to wait 8 months just to get in to see a neurodevelopmental pediatrician to have your child receive a more severe diagnosis than you expected.. and having your spouse at the MacD0nalds 20 minutes later yell at you for telling the pediatrician that there were 3 other cases in the family...you are reeling....and crying.....over this diagnosis and this spouse is ticked that his family history was discussed...ARE YOU KIDDING ME???(You had hoped friends and family were right when they told you not to worry, that you were being "neurotic" and that it was "your problem" You never hoped something so hard in your entire life)

But none of this should really be a surprise since studies show that most parents of children with autism don't recognize a problem until 2 years of age....so you spend 2 years blissfully thinking everything is fine.

Imagine, having 3 other relatives in the family..with autism...imagine screaming at your spouse after being told you were being "obsessive and neurotic" for noticing something was wrong...I remember shouting..."What is wrong with you people? Do they have to have it stamped on their foreheads, for God's Sake?" And still, he did NOT acknowledge the diagnosis or take the actual prescription seriously (25 hours a week of one-on-one communication)until a neurodevelopmental pediatrician told him to!
So until that time (September 11, 2006) I really was ON MY OWN in a way I've never known before and hope to never know again... It was the hardest time not only in my marriage, but in my whole life..very difficult, and very isolating.

Those times are past, thank God, and the people who didn't understand before, do now..and we are a happy, healthy, well-adjusted little family--we made it. Mark and I made it. And he is the most loving father. He loves Tommy completely and tenderly with amazing patience.

Autism is mysterious, hard, and unpredictable....70% of cases don't become clear until age 3...maybe that's why our hearts break so much harder at that time...after spending almost 3 years "in the clear. Hard on the parents hearts, and hard on a marriage, as the statistics so clearly show us.

However, some studies have also shown that the marriages that do survive become even stronger..that the love and care of the child, as well as their love for each, wins in the end.
And when I see my husband with my son, my heart is glad.

Count us in the 15%, please. Love really does conquer all.

A Random Act of Kindness On Easter

Tommy and I experienced a random act of kindness on Easter. It was at the famous Callenwolde Egg Hunt...a beautiful old mansion in Atlanta where hundreds of kids come to meet the Easter Bunny, have their faces painted, and of course, score massive amounts of Easter eggs. Some parents of kids with autism get so tired of the panic and anxiety that their kids display in new settings that they just give up on doing new things...it's exhausting and for some, embarrassing. But the way I see it, I'm an adventurer and somewhere in his heart, despite the anxiety and the autism, he is too! So we choose the path of desensitization and experience rather than the path of doing what's easiest for him....which is spinning stuff at home. We'd practiced enough that he knows Easter Eggs have "skittles" in them...and that Easter Egg Hunts are A GOOD THING. We parked on Virginia Avenue and walked to Callenwolde....the traffic jarred him, but he hugged me and said, "I want EGG!" We powered on. When we arrived, we had to wait in a long line to go to the bathroom. It was in a dark corner...he doesn't like buildings without windows...so he threw himself on the floor and screamed, and I waited calmly while holding him in place. In the bathroom, he threw a fit, bit his wrists and said, "Seatbelt on!" (which means-Take me to the car)....I found beautiful, empty rooms and we explored the building. We went outside to the small fountain, which he then tried to jump in and I restrained him and we quickly moved on to the "bunny room"... In the Bunny Room, there were about 10 rabbits in cages hopping around looking cheerful...Tommy did well petting one bunny, but then just needed to get out of that building. I hesitated too long and he completely freaked out, fell to the floor, and kicked a bunny cage, knocking its food and water out, and getting the attention of everyone in the Bunny Room. I quietly dragged him out, and he sifted the gravel he found outside (sifting things is the BEST!) We needed the bathroom and found, with our Irish luck, an old, antique beautiful one in the upstairs of the mansion. Miraculously, it had an amazing view of the front grounds, an aerial view of thousands of Easter Eggs and hundreds of 2-3 year-olds waiting to get them....we heard the whistle and watched the action. I saw a light-bulb go off. THIS is an Easter Egg Hunt...this aerial view of it, such a gift. We headed for the "6-year-old" area....ready, set, go!! Tommy set off and got one egg..."No parents allowed on the grounds" the speaker blared...Tommy then freaked out and threw himself down because he couldn't get the egg open...I called out, "Get more eggs, Sweetie!"...he ran to me and had me open the egg and the candy...but he didn't like the candy, threw himself down about that...I felt myself starting to decompensate a bit.."Dangit, Chill Out!" I said, to the glares of several nearby parents who no doubt thought me a hag. He went on, though, and did see what was going on around him, and was excited by it, ya know? Understanding it more. So at the end, we walked away with our one egg. He was slightly jarred from all the noise and excitement, but glad in a way. We walked toward the shade of the 7 60-year-old magnolia trees with kids climbing in the branches. And this little family saw him with his one egg...and they saw that he has some challenges that other folks don't....and without a word, they had their 2 beautiful daughters hide about 10 eggs in and around those Magnolias...and those little girls had a terrible time trying to get Tommy's attention, but THEY DID IT! And with their help, in his own time, in a different area, he found 10 more eggs. And I watched with a tear in my eye and thought.....THANK YOU ALL SO MUCH!!!! And Lord, thank you too. How wonderful, this precious, perceptive, dear little family at an Easter Egg Hunt. Tommy left his "second" egg hunt with confidence and at least a couple of pieces of candy that he actually liked. And I left the second Easter Egg Hunt thinking that no matter how crazy this world is that we live in, no matter our differences, we must still be good to each other...by practicing random acts of kindness.

Translating Autism Studies into Practical Help for Kids with Autism

We have a great link on our "Favorites" that we look at about once a month (www.autismspeaks.org/science/science_news/index.php) It highlights the most important peer-reviewed studies on autism as their results emerge. As a parent of a child with autism, I read them with the eye of a teacher with great hope. A lot of the studies hit home to me and help me understand so much of why Tommy does what he does how he does it! How can I translate it into something meaningful for him NOW?? Here are my thoughts of those studies. And as they come out, I will add them to this blog.

A July 2009 study done by John Hopkins and published in the journal Nature Neuroscience showed that children with autism rely more on proprioceptive abilities than on visual input from their environment to coordinate motor movement and learning. The study also showed that the greater the reliance on proprioception, the greater the impairment in social skills, motor skills, and imitation skills. This study suggests that the theories on brain connectivity in autistic people are accurate in their claims that the short-distance connections are stronger than the long-distance connections (since proprioceptive connections are short and visual-motor connections are long-distance connections).

Layman's Terms: Wow! This is why I can't get Tommy to look at his socks and feet as he tries to put them on. He just won't! He does it by feel. This is why I have to tell him "Use your eyes" when he's trying a new climbing wall or motor action. This is why we nearly cried when we were trying to teach Tommy to ride a bike and he just wouldn't look at the path in front of him!

Advice: activities that make the child HAVE to look such as hiking on a really bumpy trail, riding a bike on a winding trail, climbing, walking on rickety paths, and for fine motor...drawing, writing (which many have a terrible time with), using utensils...

Study of face recognition deficits in children with autism - 1999, Journal of Autism and Developmental Disorders. This study found that children with autism do not distinguish faces well. Interestingly, this deficit was not related to cognitive deficits.

Layman's terms: They don't look at faces often enough to develop strong face-recognition skills.

Advice: The best teacher of eye-contact I've seen is Vincent Carbone. He teaches kids with autism to WANT to look at faces. Another suggestion is being in your kid's face when he's tiny, getting his attention lots. And how about making sure he sees lots of pictures of family members and friends faces from an early age? Yep, get him looking!

Study of Joint Attention, Gestural Deficits, and Later Language Development in Children with Autism, Journal of Autism and Developmental Disorders, March 1990. This study compared children with autism with children with mental retardation but no autism. It showed the deficits in gestures and joint attention (looking back at you and pointing to show is an example), sharing attention with you (they prefer to be solitary in their attention). A fascinating finding in this study was that later language development was shown to be more correlated with gestural non-verbal joint attention and less correlated with the variables of IQ and initial language levels.

Layman's terms: Wow, the language deficits could be more related to this lack of desire to share experiences (share their attention with you) than with their cognitive deficits... They are wired to not really be social! This one is quite tough. And yet it's not. Relationship-based, affect-filled communication that begins with following their lead.

Advice: Do everything you can from very early ages to get them to share their attention with you and make it fun! Give them lots of praise for looking at and experiencing emotions WITH you! Have lots of fun together and comment excitedly that you are seeing these things TOGETHER. And follow his lead and his interests and comment excitedly about all the things (no matter how odd) he is doing! Get in his face, man. Share life.

Study showing that children with autism were not interested in the social aspects of animated characters whereas typical kids looked more at faces. This study (2009 NIH) showed that the children with autism were more interested in audio-visual sychronization. (sounds that were matched by motions). It might also explain why children with autism tend to look at mouths instead of the eyes of the person speaking to them.

Layman's terms: They like the sound to match the motion

Advice: music, rhythm could be used in teaching anything...what about a cartoon character whose eyes made sounds?? Or whose nose did? How to get the attention to the face?

July 2009 - Journal of Child Development. This study said that in the past decade scientists had located a group of regions in the brain that is used specifically for social cognition. These areas may be developed by age 6, but between the ages of 6 and 11, they become much more specialized. The study showed that children with autism had deficits in thinking about and understanding the emotions, thoughts, and wants of others.

Layman's terms: They are not wired to understand the emotions and wants of others.

Advice: Teach emotions, actions, wants, and hopes of others from early ages and never stop including it in your child's curriculum, especially before the age of 6. When someone is sad, point it out! Explain why! Teach your child to recognize emotions. Use real people and pictures of real people. Give your child a pet to take care of and teach your child to notice when that pet is happy, sad, hungry, thirsty...wow, so much of this research seems to warrant relationship-based approaches!

In the first truly randomized, controlled study of an early intervention for autism, the Journal of Pediatrics reported in November 2009 that indeed, it does make a huge difference, the intensive early intervention group made huge gains over the children in group situations in public placements. It is critical to point out that the intensive group received a play-based, relationship based intervention (not table drilling) and that the control group received public special education with much less one-on-one.

Advice: Get that one-on-one for at least 25 hours per week and make it fun! Get the speech, ABA, and OT you can from the schools, get extra private, and put on your mommy, daddy, aunt, and friends boots and provide the rest! Everything under age 8 that encourages communication, eye-contact, affect, and skill-building is worth its weight in gold. JUST DO IT!

A British study done at the University of Cambridge in December 2009 revealed that on top of not understanding the emotions and wants of others (which has long been known), that the autistic brain also struggled to process information "about the self". In the control groups, neuro-typical people's brains became more active in the ventro-medial pre-frontal cortex when asked about themselves than when asked about "The Queen"....the autistic subjects (no pun intended) had the same level of activity. Michael Loub, who lead the study said that this proved that people with autism are not egocentric, as once was thought. they have trouble making sense of themselves and relationships between themselves and others.

Layman's Terms: Wow! Sigh. Help!

Advice: Help them know themselves by commenting often on things and people that they like and dislike. Help them understand their relationships with others through comments and photos about friends, relatives, hobbies. Help them see the interests they may share with others. and build relationships as strong as you can. Help them have friends and spend time learning about themselves and others. Help them understand themselves while also looking outward at otheres.

According to the chief science officer of Autism Speaks, Geraldine Dawson, 22 well-designed studies between the years of 1982 and 2007 have proven the benefits of vigorous exercise in decreasing repetitive behaviors, hyperactivity, self-injurious behaviors, and aggressive behaviors in children with autism and in improving attention, general motor function, general levels of happiness & self-esteem and social outcomes. Vigorous exercise was defined as cardio-vascular exercise for a minimum of 20-minutes straight per day.

Advice: She recommended including a rigorous exercise program in the student's IEP. For parents, obviously all the fun physical activity you can get into their day, the better. And the hard part is getting school personnel to follow through, but possible peer buddies can help your child get the exercise he or needs during his school day. It is so important for ALL kids, but doubly so for ones with autism who have difficult behaviors to overcome and severe attention problems. SOS!

Roses are red, violets are blue

The perfect day is one with you.

Let's travel the land and have such fun!

I feel so lucky to be the one,

to have your company, joyous and true,

Mommy & Daddy & Maggie & You!

To My Friend Apache

Oh How I Love to be Up High

Riding you while I look at the sky.

Your motion gives me peace and joy

You know me as a little boy.

With you there is no stress or fear

You carry me with love and cheer.

You see me in a different way....

And bring such warmth to any day.

Hurray, an unconditional friend I've found!!

To ride and feed and walk around....

Love ,

Tommy

Let the record state that BAD ABA therapy for a child with autism IS WORSE than no ABA therapy.

When I tell people we're in the public school system, we sometimes get these "Looks"...like how could you choose public school for a kid with autism who needs so much?

Well, I guess it's time to share about our experience in a PRIVATE school for autism. Let's see, where do I start? Do I start with the fact that the school he entered did not even do their own evaluation of his abilities? (No ABBLS, no formal test, nothing-what arrogance!, what cheapness! What sloth!) Do I tell you that they charged $75 an hour, claiming a 1-2 adult-child ratio that never happened? Do I tell you that they used an old-fashioned style of Lovaas ABA that made my kid 1. temporarily lose his personality 2. lose the spontaneous language he had (data chart to show this, want a copy?) 3. Have severe diahrrea for 40 days out of 9 months because they told us the lunches (of the 7 kids in the class) were refrigerated daily in the morning when they were not? (Monday nurse reports at 1:00 to show you...is that enough time to catch it from a classmate?)

Or how about walking up behind a therapist who did not know you were there and who said sternly your your child 3 times "Look at me"....then you see your child whimper, and this assistant jerk looks at another therapist and says, "Well, at least I got some eye contact out of him...."

When I look at their "data sheets", I want to cry...he learned nothing....during the time he was there, he learned to answer the questions, "What is your name?" and "How old are you?"...guess who taught him these? ME, the mom! They promised they would potty-train him, and didn't even start to try. His pretend play skills basically disappeared, and he developed scab marks around his knees from biting himself to escape the TOTALLY INAPPROPRIATE GOALS OF numbers, letters, and colors that they chose for a 3 YEAR OLD. Hello, how about teaching him to WANT to communicate...oh NOW you tell me that you don't like DIR-Floortime...then why is it in your add? Wow, you don't have any kids? Hmmm, neither do any of your therapists...

The director favored certain parents...they were the ones with money...the corporate lawyers, the business owners...the rest of us, and our kids....she basically ignored. And she did not want to learn anything new like (HELLO, YOUR METHOD OF ABA SUCKS AND IS ARCHAIC, or HEY, WE DON'T THINK IT'S OK THAT YOUR THERAPISTS SLAM KIDS DOWN IN THEIR CHAIRS TO TEACH THEM TO SIT...AND YOU WONDER HOW THEY END UP UPSTAIRS IN SECLUSION?) The rest of us were left to hope we got a nice therapist, but as we all know, shit rolls downhill, so if the boss is a jerk, she will likely hire in kind, etc.

So those of you out there who think private schools for autism are a better bet for your kid, think again, do more research, find out what type of ABA they espouse, find out if they are open to DIR-Floortime, talk to the director and find out if that person is a jerk. The county schools might not quite have it together, but at least in my county, they are finding people with hearts and minds to move forward using the type of ABA that not only teaches skills, but teaches children with autism that communication is FUN....so where we live, we'll take the county over the private crap any day.

OR you might end up hooking up your pop-up camper, taking your funny, communication-challenged child into your vehicle, and doing the best thing you could possibly do for him: give him all-day communication and experiences that are not repetitive. Give him explanations for the emotions he and you are feeling...pause and wait for the eye contact that will change his life if he can make it a habit...teach him as many words as you can.

and get the heck away from the buttheads!!!!

Educating a child with autism presents the challenge of a lifetime.
After learning that your kid has the diagnosis, you are then informed that he will need a minimum of 25 hours per week of one-on-one, at least initially, with someone experienced in the field, for several years. You are then presented with a choice of therapies, some diametrically opposed, but the basics being speech therapy, applied behavior analysis, occupational therapy (for motor challenges), and play-communication therapy. So you have to research and decide what type of teaching, where, who, how...how much?

The main problem you run into is always the "one-on-one" part.
No matter that you have your neurodevelopmental pediatrician's letter recommending one-on-one, no matter that the majority of the research recommends it for early intervention for autism. Neither public nor private schools are willing to provide that kind of intensity, and I'll bet you know why.

From them, you will hear the EXACT same spiel, from each and every county official and their minions (some of whom are teachers and therapists who defend their choice not to provide your child with the one-on-one he so desperately needs knowing their bosses will defend them in order not to have to be bothered with actually supervising them). Thank God this is not the case for us this year...we had a teacher last year who was not afraid to write on Tommy's IEP, "Able to provide knowledge in one-on-one situations...HINT HINT!!" She knew it had become an inappropriate placement, but if a teacher says so out loud, they get their head chopped off, you know.

Anyway, here is the SPIEL:
" Life is not one-on-one...they have to learn how to respond in a group setting...ABA will not lead to generalization....they need to be exposed to the language of peers...natural environment in a class is the best option."
ACTUAL MEANING:
"We don't want to spend the $$ it will take to bring knowledge and language to your child...we can help you, but not THAT much...my God, what do you expect, lady?" Especially if you principal is Sara White at Ison Springs Elementary.  You will have to call her superiors, present documentation that shows how much your kid needs daily exercise in order not to harm himself, and extra grace as she attempts to bully you out of getting the exercise your kid needs, the qualifications his teachers need (WHAT, a teacher with a specialization who isn't going to affect MY job?  i.e. if your kid can't take the CRCT, he does NOT exist for a selfish as hell principal)

To these officials and their minions I offer this:My son did not choose to be born with the ATTENTION SPAN OF A GNAT AND NO MOTIVATION TO BE LIKE OTHERS....Look with your EYES into a special education class and you will UNDERSTAND IMMEDIATELY (oh sorry, is this too many CAPS?) why he needs this. The cute little girl with Down's is hanging on the teacher's every word and mimicking her...the boy with cerebral palsy is learning his numbers...the retarded boy is laughing with his classmates..now look over at the boy with autism. He is in the corner, rocking slightly, staring at his favorite spot on the wall. He is NOT listening to the teacher, he NOT imitating the other kids...he's just there. It's like he's UNDERGROUND.  But until your boss makes my kids progress just as important as the CRCT test, I guess he's screwed.We did not ask for this disability. Cannot help the fact that we are in a total bubble, especially the early years...We cannot HELP that you have to be 8 INCHES FROM OUR FACE FOR US TO RESPOND....but WE NEED SO MUCH HELP....
We need you to make us respond, because if you give us a choice, we might choose not to. And without intervention, that choice might become permanent.  I simply don't give a damn about your promotion.  In fact, your selfishness and self-promotion is making the world a harder and more difficult place for TRULY special needs kids.  I hope your "raises and promotions" based on the CRCT scores of kids that DON'T HAVE SPECIAL NEEDS make you proud of yourself and your higher salary.  It has certainly not raised our opinion of you.  In fact, why, Ms. White are you not on Wall Street where you belong?

Little by little, with the right help, we will wake up and join you! We will answer you (you have to push!)...we will share our attention with you. Don't let us drift away, go underground. Make us come out into the light and communicate with you. Get the most skilled people you can to help us...because we can do it! After this initial one-on-one, then maybe your dreams for us, to learn in a group, to imitate our peers, to respond to your questions, to really really see you.
Those dreams will come true. Believe, work hard, and don't give up on us....please.

POSITIVE BEHAVIOR INTERVENTIONS/PRAYING FOR GRACE ALL OVER THE PLACE

Fortunately, there is a new category for those dealing with kids with autism, and it's a category that we all can learn from. It's called Positive Behavior Interventions.

What it means is that when you have kids with behavior problems, you use positive strategies and language to decrease unwanted behavior and increase desirable behavior...here are some of the basics; taught to me by patient special education teachers (Betsy), awesome psychologists (Janet), you know, those types....

1. Never use the negative in your instructions...always use the positive (Betsy)
Don't scream...."NO don't run!!"....scream, "Walk" and then "Yay! Great Walking!"

2. Take the undesirable behavior (such as spitting on windows, running away in parking lots, making tiny crumbs out of food substances, peeing in public places, falling to the floor to tap the shiny surface of the tiles, spitting water 4 feet high in the baby pool (ick), grabbing the food of others...uh-oh, is this getting too personal?) and find an ACCEPTABLE OUTLET THAT SATISFIES THIS NEED.....like...let's see...ok, you CAN spit in the bathtub......and you CAN make crumbs out of the green onions...so that we can cook with it...and you CAN tap on this Bongo drum, rather than so many other surfaces...and you CAN use this spray bottle to "wash" the windows and piano rather than spit on them...and give loads of praise for these alternatives.

3. You may need to take some sort of anti-anxiety drug or "patience" drug to help you be more effective in these Positive Behavior Interventions.

4. It might be a good idea if your relatives or friends give you some "down time" so that you can MAINTAIN your positive behavior intervention approach.

5. You will need to have some sisters who can just laugh their asses off at all of it.

Here are some situations to consider:

1. You have gone to a restaurant and gone to the bathroom, leaving the behavior of your child to a relative (No Mary, this is not about you...not everything is about YOU!)....you come back and on the table is a PILE OF CRUMBS THE SIZE OF THE EGYPTIAN PYRAMIDS.....In order to do a POSITIVE BEHAVIOR INTERVENTION at this time, you need to be able to say: 1. All done with crumbs....clean up crumbs 2. physically prompt your child to clean up the crumbs and then say 3. good job cleaning up crumbs....chips are for EATING!! (remember, no NOS, no DON'TS, and no NOTS....)

2. You are at the pool and your child is getting in the babypool and spitting the water in 5-foot-high streams...you....A)remove your child from the pool? B) Scream bloody murder? C) Pray for grace??? Uh-oh, I'm sensing some frustration here. Breathe?

3. Let's see now...you go to a Mall, and your child falls on the floor to tap the floor, testing the sound and quality of its "tappiness"...do you A) Scream bloody murder and run out of the mall? B) Praise your child for the quality of his tapping on the mall floor? or C) Tell him that the mall floor is dirty, to please stand up, and wash his hands....Where? Do You Have Sanitizer? Well, aren't you just the perfect parent....well, then use it, for Christ's Sake!! OK, chill dude.

4. Ok, there's a great show at the Circus and you are parking in the lower part of the deck....you get out of the car and your child completely freaks out....bites the heck out of his hands and wrists and shows EXTREME ANXIETY AND SELF-INJURIOUS BEHAVIOR in this situation...you really, really, want to go to this show. What will you do? A)Put him in a stroller with an anemone which you know will calm him down-even though he's 6 and folks will stare B) Drag him kicking and screaming through the parking deck C) Run off and pretend you don't know him. D) Bite your own wrists and put yourself in the stroller and demand that he push you?

My sisters laugh at all my efforts at POSITIVE BEHAVIOR INTERVENTION....I walk into the kitchen and there's honey everywhere, I scream, "HONEY is for EATING! CLEAN UP HONEY!" We briefly wet paper towels and "clean honey" and he happily goes on his way...I go into the laundry room...it's flooded and there is soap everywhere, I think "NOOOOOOOOOOOO!!" but I yell, "The washine machine is for washing clothes!!! Clean UP!"
Sometimes I fail at Positive Behavior Intervention....Tommy peed outside of the principal's office again the other day and I ran shrieking "NOOOOOOOO DON'T PEE PEE OUTSIDE AT SCHOOL, ONLY AT HOME!!!" He cried and was so hurt...He can't understand why it is ok to pee outside at home and not at school? (sigh) ....

I go into the living room and wonder how one person could have created so many "crumbs" out of so little. I wanna scream, "DAMMIT, WHAT'S UP WITH THE CRUMBS??????" but instead I yell...."BAGELS ARE FOR...." and he fills in the blank...."EATING"....and wanders off.....

I catch him spitting on the piano and I want to scream: "FOR GOD'S SAKE, DON"T SPIT on the PIANO!!!" but instead I say, "Dry mouth..." and he repeats, "Dry mouth" and frolicks away.

And the truth is, these little interventions do work...slowly but surely, they do. Because these kids are going to doing odd repetitive little behaviors for a long time, and they are going to get yelled at...so bless them, and let it be positive, so their souls can thrive.

But it's good to have 3 sisters laughing at it all...and keeping me laughing some too.

I Met the REAL Rainman and asked him how to help my son

Meeting "the Rain man" in Person with my usual cry, "Help, help, what to do?"

Could it be we've come full circle?
3 years ago we would not have dreamed of watching the movie "Rain Man".

Not when you've just had a son diagnosed with autism
and one of you has just only seen a brother with it who was left behind...after thirty years?
very much like Raymond Babitt (the character in the Rainman).

But yesterday I found it at Goodwill (along with a perfect Abacus and a pair of Steve Maddens)
and thought...you know, I really want to see this 22-year-old movie. For the first time!

And you know what? It was OUTSTANDING. Dustin Hoffman absolutely NAILED the essence of autism in so many ways. No, my kid is not a card counter or calendar genius...yet :)
But the lack of reciprocity in conversation, the visual obessions with things like power lines, angles, flashing lights, abstract shapes....the interior life that seemed to dwarf all exterior attempts to bring it in and harness it...and yet the impossible knowledge that this person can hear you very well, but just isn't wired to care to respond...and the work it takes to bring that reponse as a regular thing.

Tomy Cruise's frustration with all the little repetitive behaviors of Raymond. His swearing when Raymond would suddenly run away! (been there...) His frustration with Raymond's refusal to answer questions. His initial impatience but final acceptance of Raymond's compulsions...

His annoyance with Raymonds need to spin things constantly (Thank You...)

His love....the love he developed for Raymond and the understanding of him...ok, 3 tears...right there at the end....that's all.

But for the most part, and very much to our surprise, 3 years later, WE CAN LAUGH AT THIS STUFF!!

I saw the real Rainman (Kim Peek) speak at an elementary school near the house last year, with his Dad, his sweet old dad who has supported him (and tolerated him and you might need to watch the movie again to understand what that entails....or you could also spend some time with Tommy :)....The audience got to ask him any history math question about 7 different topics. Dates, sports records, etc. He got all of them right....all of them. His memory was unparallelled in human history as far as I've read...

But after the lecture....when I spoke to him in person, I asked him, "How can I help my son learn to communicate better? Do you have any preferences on what interventions are out there these days?" and he mumbled a completely unrelated, incoherent answer that was totally absurd in view of my question. I thanked him and walked on out, a little teary.

After watching the movie, for the first time last night, I realized Kim Peek was much like a radio...one-way--and stuck in that mode with most people. Though his father was able to get much out of him because of their many repetitious routines...

But as for the movie, Rainman, I will definitely add my own real-life Oscars: a 5th...and a 6th Oscar to the original four it received in 1988. My real life Oscars, go to Kim Peek, the real Rainman, a man who could read 2 pages at one time using both eyes, the extraordinary man who passed away last week, and another (plus the Nobel) goes to his dad, for sticking with him all those years, in a way that Charlie Babitt (in the movie) was not able to do for Raymond. It really is a testimony to the love strength, and perseverance that a father can have for a very special son. I will never forget their appearance together at Woodland Elementary School.

Rest in Peace, Kim Peek. and God Bless Your Dad.