Music is a miraculous wonder.
And I believe its possibilities for developing language are infinite.

Yet, while we parents wait for research studies to support the ridiculous plethora of "treatments" available for autism, we need to remember and recognize simple truths: one is that we all rember musical lyrics better than we remember poetry.

Maybe that's why when John (Mark's brother) visited Paul, even though Paul couldn't speak in sentences, he could sing the Rubber Ducky song in it's entirety. Many studies have shown that stroke victims who are unable to talk often can still sing...

Left-brain damage compensated for by right-brain strength.....Music, sweet music.

There is no support for music therapy in the National Research Council's recommendations. They state, "Auditory integration therapy...studies have not supported either its theoretical basis or the specificity of its effectiveness....acoustic intervention (singing)...currently undergoing some scientific experiments in children with autism, no empirical data are available to support this approach."

A new Yale study, though, funded by the National Institute of Mental Health in March, 2009, addressed the lack of attention to social cues of toddlers with autism. Though the lack of eye-contact or interest in others has long been recognized, this study sought to find out what they were attending to INSTEAD. "A EUREKA moment in the research came when researchers followed up on a clue from children's responses to audivisual synchrony. They found that while the typically developing toddlers focused on the faces of animated characters in a film, the toddlers with autism focused on the audio-visual syncrony of handclapping sounds with motions of the characters. This may also explain why autistics tend to look more at mouths than eyes of people speaking." So the sound that matches the motion is the key!

Often, if I'm trying to get Tommy to say something, I have a much better chance if I put it to music...He will even sing the last line. To the tune of "Good Night Ladies", we sing, "I'm hungry, I'm hungry, I'm hungry, I wanna EAT!...I'm thirsty, etc" And he HEARS it and he GETS it and he SINGS it!

He loved being read to as an infant and young toddler, but around age 3 had a major regression in attention and to my dismay, started refusing to sit or listen to books anymore...I have despaired over that loss of attention, as I think books (Dr. Seuss, a particular favorite) are such a wonderful way to teach kids. I tried and tried to get his love of books back. How IS it that a baby who would laugh and point at pictures and enjoy stories could just STOP?

Well, for us, music is the answer, no matter what the studies say. I've found that if I SING the words to the books, he will listen!! He will look! He will get it!! If we go back to his little room and shut the door, even though he's jumping on the bed, bouncing off the walls, and pulling down the curtain rods, he looks! He smiles! HE LIKES BOOKS AGAIN!

Oh please, let the sound that matches the motion be my mouth singing the stories you used to love so well! Look at my face! And all the great pictures! You can learn so much from books, my love. You can learn so many words to say...

I'm not a parent who goes for all the experimental therapies. We go for the tried and true, and we do the best we can. We follow the recommendations of our neurodevelopmental pediatrician.

But sometimes, you've got to follow your instincts, and with determination, forge a new path to teaching. The science may not be totally be there yet.

But common sense doesn't require a study.

Never say never.

Before you have a child diagnosed with a serious disability, you remain in de river "Nile" for as long as you can. No matter how many times you read the words "LIFELONG disorder of communication, learning, and behavior", you just KNOW you are the mom and yours is the child who will beat this thing. No matter how many times you read other parents stories of how they thought the same thing and it didn't happen. It is amazing how we all think we are exceptions.

When Tommy was 3, we went on a wonderful family vacation to an island in Florida....we took the dog, we swam, we ate, we played, he jumped on the bed. We went canoeing in a state park and saw an older lady with a middle-aged man in her boat....he was leaning down staring at the water out of the corner of his eye, and I said to Mark, "Look, her son has autism"....a few hours later, it happened that we were all in the parking lot at the same time, and as Mark and I often do when we see an older parent with an autistic child, we asked advice. We asked, "Is there any particular message you could give us?"

This very nice lady looked at us and said, "If you can prepare yourself for absolutely anything....just anything...then you will be ok....there will be many unexpected events on this journey, and some won't be easy....you need to be ready, and you need to be flexible."

We rode away thinking how lucky we were that our son was so mild that we would NEVER have to feel this serious about his condition. Because we were working so hard and giving him such a wonderful early intervention that it was just going to go away! Poor lady...what a struggle, we thought.

As we have met more and more parents and seen more and more kids with autism, it now is clear that we all go through the same thing, with this damned diagnosis. At the Marcus Institute I saw an adolescent girl arrive daily in arm casts and a helmet so that she wouldn't do self-injury. I saw a girl at Cobblestone Therapy weekly who constantly had a bleeding scab on her nose. I saw a 10-year-old boy going into MacDonald's who bit his arm repeatedly before going in, to the distress of his tired dad. And I thought, those POOOOOOOR people...I'm so glad Tommy will never do that.

Tommy lately bites his right arm when he's frustrated...and sometimes he bites it when he's happy....the school has a fabulous behavioral therapist consulting them and us on how to deal with it. The other night he bit his wrist and for the first time, it bled....I called for Mark and when he saw...well.....we just cried....WHAT ARE WE GOING TO DO???? WE NEED HELP.

Fortunately, here and there in this big city, there are AMAZING behavioral psychologists who have dealt with these very typical autistic behaviors for years (yes, Janet Lund, that would be you)....they are on board, and we have no idea what we would do without them. Because, according to the National Research Council on autism, "Once they become an established part of an autistic child's repertoire, unlike typical children, ASD kids do not outgrow them. Without appropriate interventions, these behaviors persist and worsen." So we are quickly getting him the help he needs and doing the hard work that has to be done to prevent this from becoming part of his "repertoire"....this requires constant supervision and a knowledge of how to do what schools call "positive behavior interventions" and "positive behavior support"....

We know we and the wonderful people working with Tommy will extinguish this behavior too. They always do, and we are so, so incredibly grateful.

Now with some sadness, we never say never. We've eaten far too much crow to do that anymore.

Last week, one of the students at the university I work at found me to ask me about Tommy. Her son had just been diagnosed with autism, at age 3. I gave her the titles of my 3 favorite books on autism, and I said, keep him engaged, as the prescription requires, a minimum of 25 hours per week in positive, happy communication....it won't be easy since he doesn't want to communicate, so go take a class in Floortime. You'll need some ABA, a lot of Floortime, a lot of speech therapy, some OT, a lot of play and connection with each other....just basically, A HECK OF A LOT OF HELP.....

And then I told her, "And you need to ready for absolutely anything....there will be many unexpected events on this journey, some very difficult, many just wonderful. But you will need to be strong....and flexible."

Turns out that pretty white-haired lady knew exactly what she was talking about.

Ode to Aunt Mary, by Tommy Hedin

I love my Aunt Mary, and she adores me
She sees my true colors, she lets me be free.
She lets me go at my own special pace,
so I can make crumbs just all over the place!!

When I'm with Aunt Mary, there is simply no doubt
I can climb the piano, pour the dog's water out!
And flood ALL the bathrooms and kitchen, with GLEE,
Because I love her, and she's slower than me!

If there's a flood in Atlanta, I can bolt RIGHT into it!
She might not like it, but I can still do it!
Go wild in the yard, mosquitoes and all
Beat my drum, kick my balls, buy gumballs in the mall!

I can eat cupcakes for most of the day.
Cause Aunt Mary really does know how to play!

But then Mom comes home and the party is done.
She looks at the house, she seems very glum.
Aunt Mary leaves quick, and she feels like a jerk.
Even though she truly DID SO much work!!!

Keeping me talking, keeping me ME!!!
Loving me no matter who I might be!

So mom keeps forgiving, Aunt Mary comes back!
She knows that LOVE is not all white and black.
If somebody loves you, it makes your life better.
So don't wait around, Mom, please go, GO, and get her!

So even though I might be bitten and sick,
I've walked in a flood, which was really a kick!!!
I've trashed the whole house, dehydrated the dog....
Enjoyed a disaster and played in a bog!

Aunt Mary will always be special to me
Cause she loves me for ME,
and she lets me be free.

Thank You so much, Aunt Mary....I love you.

Welcome to Holland, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel-it's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo, the gondolas in Venice...you may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!"

"Holland?", you say. "I signed up for Italy! I'm supposed to be in Italy! All my life I've dreamed of going to Italy! "

But there's been a change in the flight plan. They've landed in Holland, and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place!

So you must go out and buy a new guidebook. And you must learn a whole new language. and you will meet a whole new group of people you never would have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills! Holland has tulips...and even Rembrandts!

But everyone else you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of the your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that is real, and the loss of that dream is a very significant one.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Joy is Like the Rain

They say people with autism think in pictures instead of words....that their visual systems become stronger, possibly to compensate for the weaker language areas.

There's no doubt that those with Tommy's diagnosis (299 people, not Aspergers, not PDD-NOS, just the regular kind of autism) have unusual visual tendencies....

I'll never forget the day I really realized it was autism. It wasn't the wheel-spinning or the fact that every wheeled object we owned was turned upside-down in the backyard so he could go from wheel to wheel to spin them. It wasn't the lack of language. It wasn't the hand-flapping.

One day, I looked outside and he was running along the fence, staring at it out of the corner of his left eye. "Oh, crap, it's autism", I said. After that, he got into a habit of running around people's houses as fast as he could, always with the house on his left, looking at it out of the corner of that eye. I do bless my wonderful neighbors for their patience with that particular phase, which has ended, at least for now....they were new in the neighborhood at that time, and was a rather odd thing to have a little boy racing around their house repeatedly.

But the visual thing is also a joy for him. And I do love to see him take such pleasure in little visuals that we all take for granted every day. Like rain, for example.

We see the rain, we worry about the flooding, we watch the TV for the news.

But Tommy, laughs gleefully at EVERY downpour, amazed at how the drops fall, and I do believe he can see them all and hear EVERY ONE OF THEM hit the ground. Billions of reflective balls of his very, very favorite thing--WATER!!!

There is joy.

A University of Washington study this year found that mothers of children with autism have higher levels of stress than mothers of children with other developmental disabilities. The findings were a surprise to many, who expected that disorders that required the most help with daily living skills like dressing and bathing and required the hardest physical work would be the most stressful.

But it turned out that the problem behaviors associated with autism were what caused the stress levels. 3 years ago, I would have scoffed at this study. This year, I totally get it.

They did an experiment with autistic subjects in the 70's in which they put them on a grated floor and shocked them when they did their repetitive behaviors. (yes, unbelievable, but true). And the behaviors increased.

The compulsions to do the behaviors are incredibly difficult to manage, and they are constant. Most kids with autism have about 4 or 5 "things" that they are just dying to do at every given moment!! These behaviors change and morph over time, but when one disappears, another pops up to take it's place. Many are very similar.

For Tommy, right NOW, they are: pouring out any liquid in sight onto a hard surface (the dog is continuously dehydrated)....spitting a neat 4-5 drops on a hard surface, pouring sand, tearing anything that can be torn into crumbs into crumbs and sifting them on a hard surface (food is a favorite)....spinning anything that it is possible to spin (yes, even a tea-bag, my friends)....jumping as high as possible on whatever is available, darting quickly from one place to another instead of walking, walking bath and forth across the piano, tapping and beating hard surfaces with his hand (bought a great bongo drum!), asking repetitively for food, throwing large things down to hear the sound they make (God help me, he just discovered that plates break into A KIND OF CRUMBS), running away suddenly, constantly turning lights on, and resisting sitting while eating--he wants to take a bite, run a circuit and make crumbs, take a bite, run a circuit, and make crumbs...

This morning I got back from letting the neighbors dog out, and he had poured Aunt Jemima syrup all over the floor and table and was rubbing it on his stomach, happy as a clam.

I hollered and he cried....and then I felt bad.

The thing is, they don't do it to be bad or to make you mad. They are just utterly, unbelievable compelled. So you try to find outlets! You swim and swim, jump and jump, find things he can make crumbs out of without getting yelled at, choose a few large things he CAN throw on the floor, make him fill the dog's bowl back up, mop up the daily flooded bathroom, dustbust all the crumbs all over the house, pray to God he never walks on anyone else's piano.....and love him completely.

So yah, the University of Washington study? I totally get it.

Mark just called. He just made his second visit to his oldest brother, Paul, in 30 years today.
Last year, after all we've been through with Tommy....he decided to finally go see Paul.
I don't blame him...in 1965, that's what people did....their doctors told them to put their kids, their very complicated autistic kids, into institutions. So that's what they did. It's what the doctor ordered, right?
Last fall...after having a son with autism, he decided to go see Paul. Even though they (the parents? the social workers?) had decided to let him be, as a ward of the state of Wisconsin (a GREAT state to be autistic in, by the way). They had said he might be too upset by the visit...but he wasn't. Mark took him some Beatles CDs, which he had loved in his childhood. Mark gave him a hug. Here's the hard part. When Paul was a child. He would give a big "patty-pat-pat-pat-pat-pat hug." 30 years later, Mark went to see him at his really good home-care place in Wisconsin. What do you think Paul did? Patti-pat-pat-pat-pat-pat-pat. MARK!!!!!!

So if you think we ain't got no family baggage here.....

Today, Mark went again.....for the second time in 30 years.....Paul did patti-pat...they talked....Mark delivered more Beatles music (the social workers said Paul could not talk, but he can sing these songs) and sat with Paul.....he only says a few words...he's, I don't know, do you say, severe? But he's there, in Wisonconsin. Basicallly happy, I mean, you think you could do better?

I look at Tommy, and I wonder about his future, so unwritten. People say there is so much you can do these days, for autism. We're doing it all of it...but there's no cure, you know.

But I have long since forgiven Paul's mom....you think that you could handle an autistic child, with 4 others, do you? You think in 1965, you would have been an exception?

Think, think, and forgive.

Oh the adventures we have with autism!!! Today was a wild one...a rainy Saturday on which I decided to let him choose what we do! As we rode down the road, we saw a Marta, he said, "Ride Train!"...famous last words.
We made it onto the train south; delightedly rode 5 stops before he started freaking out in a panic screech..."ok, ok, let's get off at the next stop!! It'll be ok", I said.
Which was Midtown! In the rain...
Out on the street, he completely freaked, attempting to dart off at every turn. I carried him 2 blocks and saw a diner. We crossed Peachtree Street and saw a fountain at a bank. Exhausted from carrying him, I put him down and said, "Run to the fountain, Tommy"....which he did, and to my horror, climbed up the side of it and prepared to jump in.
"NNNOOOOOOOOOOO!!!!", I shrieked and raced over, catching him in the nick of time.
We crossed the street to the "diner" which turned out to be a rather seedy nightspot that just happened to be open for breakfast. We went in, past sleepy all night partiers, relieved for the shelter from the rain and the possibility of pancakes.
Another freakout. SCREECHING, slapping the glass window, and saying "OPEN DOOR! (which means get me the heck out of here....)...I finally break down quietly, crying into my coffee cup. A beautiful hispanic lady appears and says, "My niece has autism...I will help you!"....she brings him a plate with tiny fake balloons and 5 slices of of different kinds of cake....he begins to calm down, just slightly but then resumes his complete panic.
They call a taxi and say we'll get a good fair. We go 1 block to the train station, and he charges us $8. I ask him why his meter isn't running and how it can possibly be 8 dollars. "That is cheap and I'm not charging for him...." in an Ethiopian accent....I tell him it's not possible that 1 block cost $8 and he says, "Why you didn't walk then???" I yelled "Becuase my kid has autism and he was freaking out!" (at this point Tommy begins freaking out again, and I feel bad). I count out $8 dollars, curse this man out, and carry Tommy back into the train station.

MIRACLE OF MIRACLES, he's NOT upset!! After what we've been through, the train station is a relief! And after months and months of being afraid of going down stairs, he goes quietly and confidently down 3 flights! (they've been workin on this at school too).
We get on the train and ride home with our arms around each other.

We get in the car and I reach for a soothing song..."Here Come the Geese" by the BareNaked Ladies....He rocks back and forth with a big smile on his beautiful face. I reach my hand back and he puts his foot in it.

Man, it's not even noon yet!