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.