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.