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.

Dear Teacher Merry Christmas

Dear Teacher,

Merry Christmas to you, and thank you so much

for all that you do and the lives that you touch.

I know it's not easy to get my attention

but you find a way with your GREAT intervention.

You guide me and help me with manners and speech.

I'm soooo lucky for the way that you teach.

I'd rather just twirl leaves and run free. it's true.

How great I can twirl things and still learn with YOU!

I know it's not easy, and I must drive you crazy.

You never have time to daydream or be lazy.

But know you are making my whole life better!!

By helping me now with my speech and my letters...

For helping me learn to be a big boy.

On these, your holydays,

...I wish you joy.

Love,

Tommy Hedin

p.s.  ERIN,  you have taught him and loved him for 2 school years.  It means so much to us, your patience and guidance have helped him mature so much this year.  Please know how much we AND HE appreciate you.  Merry Christmas!

Today, Tommy saw Santa at Walmart....she was an African-American Lady with HUGE glasses and he knew EXACTLY who she was....SANTA! With prompting he said, "Hi Tanta".
Santa asked him his name and he said, "Bommy"
Santa asked him his age and he said "SIK"!!!
When Santa said "By", Tommy said, "By by Tanta!"
He smiled.

I don't know if he can understand the story of Christmas, but I tell it to him anyway....
He smiles. I make him label: reindeer, Santa, star, Jesus, Christmas tree, snowman...I go in the kitchen and he is happily spinning an ornament; I turn on the Christmas music and he beats his bongo drum with glee. He sifts the fake snow around the house (crumbs :) and it is everywhere.

I don't know if he understands the seasons and events that come and go...but I tell him all about them...anyway...talking in a voice like the "Donkey from Shrek" which he loves...(the talking AND the donkey)

He smiles, so amazingly.

I know he loves snow. "The Snowman" is his favorite holiday video...ironic, it has no words, just action, emotion, and music. Did you know they say 90% of communication is body language?

He loves, he sees everything....he feels, he jumps and runs, he climbs and drums...when I look into his eyes, I see so much! So what if he would rather play with the styrofoam than the gifts?

I strive to help him see others, their feelings, their actions, their colors....they say people with autism don't feel empathy...that they have no interest in others. I don't believe it.

I have no idea what he will understand in a year, or two, or even ten. Hell, I'm not sure what he understands now...but I have a strong feeling, it's more than we can know.

But I will not think about that today. I will just teach him what I can right now about Christmas, about what we do, what we believe, what we feel...what we laugh at....and celebrate the pure joy that he takes in so many things...a joy that many don't feel at the holidays.

And he laughs, so delightfully. He loves his aunts, his grandmoms and granddads...

He is an innocent. Christmas as it should be. Merry Christmas, little big man.

10 Things I Love About Tommy

1. Your feelings are clear. There is no manipulation, no deceit. The cards of Tommy Hedin are ON THE TABLE.

2. You see so many things and process them in such a different way...I love to watch your face as we drive along through life...

3. You take joy in so many things! You love water, sand, kicking balls, swimming, pouring, jumping, swinging, and being with loved ones...and it's all FUN!

4. You are a complete and total nonconformist. You don't give a dang what anyone else is doing or what anyone else thinks about what you are doing. Peer pressure? What the heck is that?

5. When you hear new music, you tilt your head to once side and listen completely. You hear every harmony, every acoustic, and you appreciate every sound with joy. You have a musician's heart. One of the joys of my life is watching your reaction to a brand new song...you have GREAT taste in music.

6. You help us weed out the weenies from our life. Those who can't handle the "nitty gritty" of autism, those who are fair-weather friends...the ones remaining have always loved us and always will...and they are flexible and open to differences....they LIKE diversity, and even better, they want their children to understand and embrace diversity as well.

7. You love us. You see us. You know us, you really do know us.

8. You love food and you love to eat...it's a blessing and a curse, but you DO have good taste in food--and dinner with you is a true celebration.

9. You can learn, you want to learn, and you are learning. It may not be in the pace, or in the way we all expected, but it's still wonderful--even better, you have shown us that there are different ways to learn, and especially different ways to see life.

10. You are my baby, and I got to have a baby and experience all the great things about raising a child. Maybe a wild child, maybe a different child, but a child full of love and adventure. And a child with a heart. I get to help you get dirty! Play with you and regress (though at times it seems like progress) into childhood fun....laugh with you at funny stuff...have the privilege of being your parent and experiencing the singular joys of parenthood.

Parents of kids with autism have a bit of a reputation for being mad scientists. There is some truth to that as many of them have their autistic kids on special diets, unusual vitamins, various medications...some give their kids pure oxygen, float them in water tanks, make them listen to all sorts of "programmed" music on headphones...sometimes I feel like I've seen it all.

It's because they don't know what the cause is, and they're desperate...they don't know what to do. Lots of other neuro-developmental disorders have clear causes: Down's, PKU, Fragile X, Angelman Syndrome, Rett's Disorder. But the specific genes for autism are not clear yet, and many, many different ones are being discovered and implicated. Research so far indicates that a huge percentage of autism cases are genetic. So we search, we hope, we pray, we read, and we dream of a cure.

We try to stop ourselves from paying too much attention to the science. After the initial diagnosis, we read, read, read until our spouses pull us off the computer and say, "It is what it IS Kari...you're driving yourself crazy...let it go." So we learn to take long breaks from the science and try not to "dream" about a cure. We live our lives, do our jobs, and love our funny kids.

But guess what? In the past 5 years, AMAZING things have happened in the field of genetic research of autism! No surprise considering that the human genome has just recently been discovered and mapped. Think about how many people are desperate to find cures to diseases and disorders that are turning out to be genetic!

When I talk about a cure for autism, friends and family generally smile sadly and knowingly and say, "Yes, let's hope for a miracle." Well, it's not going to be a miracle, and it's happening AS WE SPEAK!! MARK MY WORDS. There will be an extremely effective medicine available for autism in the next 5 years.

"The year 2007 saw the publication of several studies that documented successful treatment of disease symptoms in mouse models with 3 different autistic-like neuro-developmental disorders. Most significantly, 2 of the 3 (Fragile X and Rett's Disorder) were REVERSED IN ADULT MICE who had been genetically altered and had regressed into the most severe stages of the disorders." THEY CURED AUTISM IN ADULT MICE, PEOPLE.

Sometimes I have this dream. In the dream, I wake up in the morning and Tommy is standing beside the bed. He smiles at me, looks right into my eyes and says,"Mom, you can stop worrying!! I can talk! Listen, I'm speaking in sentences!! It's gonna be OK." and best of all, he says the words I've been waiting almost 6 years to hear..."I love you, Mommy."

So, if every once in awhile on some dark and stormy night, you find me at the computer with big heavy black glasses on, my hair sticking out all over, and tears in my eyes reading about the latest research on autism cures, please, don't scold me. Don't think I'm nuts..

Just let me dream, and be a mad scientist for just a little while.

Doggonit, let's talk about diagnoses!!!

OK, yes, it's made the news. Now the numbers for autism are 1 in 99 instead of 1 in 150. Ok, but please, can we use the term Autism Spectrum Disorders instead of Autism.....??

Cause this is kind of bugging me.

Autism Spectrum Disorders include:
Asperger's/diagnosis code #299.80 (these kids would not have been diagnosed 20 years ago..they are highly verbal, very clumsy, and completely self-absorbed and unable to have reciprocal conversations...and they are intelligent...but get bulllied...they are the nerds)

PDD-NOS/diagnosis code #299.9 - Ok, these kids did NOT qualify for a diagnosis of autism, because.... There are 3 criteria for an autism diagnosis: 1. speech and language impairment 2. impairment in social communication 3. repetitive behaviors and compulsions

These PDD-NOS kids did not have all 3 criteria and so did not get the autism diagnosis. And frankly, I think it's possible that developmental pediatricians are overdiagnosing PDD-NOS in order to protect themselves (liability)...there may be a lot of ADHD kids and obsessive compulsive disorder kids being misdiagnosed as PDD-NOS, in my opinion. When Tommy got diagnosed with "regular" autism, I chased the neurodevelopmental pediatrician down the hallway to beg,.."Hey, this is PDD-NOS, right? How can you be so sure? He's only 3??? How can you know?" (I still cry to think of it)...she said, "I'm so sorry Kari, I'm sorry."

Autistic Disorder/diagnosis code #299.00: Welcome to my world. This is the old-fashioned autism you read about and think about when someone says autism: troubles with speech and language, disinterest in social communication (especially with peers) and repetitive behaviors (which you can see right away!)

Childhood Disintegrative Disorder/diagnosis code #299.10: I can't feel sorry for myself when I realize there are parents with kids with autism who actually get worse. Please say a prayer for these people.

Rett's Disorder/diagnosis code #299.80: This is the girl's version of autism, and it is slightly disintegrative...there is a lot of hand-wringing, and it is a really, really tough type. BUT, they have discovered the gene for it and are working hard on a medicine (please invest heavily in pharmacogenomics :). I believe M.I.T. has reversed it in mice!!

So these are the autism spectrum disorders! And what a spectrum it is indeed.