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.
Wednesday, January 6, 2010
Wednesday, December 16, 2009
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!
Sunday, December 6, 2009
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.
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.
Monday, October 26, 2009
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.
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.
Wednesday, October 14, 2009
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.
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.
Wednesday, October 7, 2009
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.
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.
Sunday, October 4, 2009
Tommy's Diary for KesslerMonday, September 15, 2008 - Mom is interviewing yet another potential therapist...she looks kind...she seems fun...maybe this one will be ok.
Sunday, October 10 - I like Kessler. She isn't just here to boss me around. She's here to really play! We had fun!
Monday, October 20 - Kessler came today. We played hard and laughed a lot.
Wednesday, October 22 - I was sooo happy the whole time Kessler was here. I have decided that I love her :D
Monday, October 27 - Today Kessler took me to the Publix for a cookie. She helped me use my words at the store and then at Hammond Park in the sand box. Some people stared at us..Kessler was proud to be with me.
Wednesday, October 29 - I hated Cobblestone Therapy today!! I was so upset I wet my pants. Why does Mom keep takingme there? The only fun part of this day was my 3 wonderful hours with Kessler!!
Wednesday, November 5 - Uh Oh! Kessler saw mom scream and get mad because I put poop all over myself and then jumped on the trampoline. I guess that was a wrong thing to do.
Friday, November 14 - I missed Kessler this week. She had to go home sad because her Grandma passed away.
Friday, November 21 - This week, I showed Kessler how fast I can ride my bike!
Wednesday, December 3 - Today was Kessler's birthday, and we all drove to my favorite place. The cupcake bakery! We lit candles in our cupcakes and sang my favorite song to Kessler.
Monday, December 8 - I managed to poop NEAR the potty and Kessler said I did a good job getting so near. She is sooooo positive!! :D
Wednesday, December 31 - I LOVED today. Kessler gave me the best New Year's ever by taking me to Duck Poop Park. I swang sooo high....THEN we got CHICKEN! It was AWESOME!
Wednesday, January 21 - I just can't figure out why Mom thinks it's such a big deal that I pooped in the potty for Kessler. The truth is, Kessler is relaxed and makes me want to poop in the potty like it's no big deal. That's why.
Monday, February 23 - Me and Kessler like playing with Deven at Floortime Atlanta...She's really fun...I don't know what to think about her office building though...don't like the hallway much.
Monday, March 6 - Mom made another important decision today. My teacher Kathy told mom I'd be better off with Mom and Kessler this summer than I would in extended year services with a bunch of people who didn't know me...I get to play with Kessler and Mom all summer!!! YAY!
Friday, April 3 - Mom is a little sad. She says Kessler might be getting a new job.
Friday, April 10 - Mom is happy again because Kessler's job other job did not offer the right things! Kessler seems happy too! YAY!
Monday, April 27 - Mom and Kessler taught me to ask a question, "Where?" to find things...it's fun!
Friday, May 8 - Today is teacher appreciation day. I appreciate Kessler so much!!
Monday, May 18 - I like Deven, and I love Floortime, but I can't go to that building anymore....it's like something out of The Shining.
Wednesday, June 3 - I'm starting to feel terrified in new buildings, parking lots, stairwells...but with Kessler, I always feel safe.
Friday, June 10 - Kessler took me to Sensations Therafun Gym today. She helped me play with other kids. We had a blast!
Wednesday, July 8 - Kessler and me hit Waffle House today!! My Favorite!
Thursday, August 13 - It has been REALLY tough starting my new school...but coming home to play with Kessler is wonderful. Kessler makes me WANT to talk, and she makes me WANT to play. I love her.
Monday, August 24 - My year with Kessler is almost over. She has to start her practicum and get a real job soon. Mom is sad and trying to get ready for that.
Wednesday, August 26 - Kessler got a great position in Dekalb County. But I know we'll still play together once in awhile.
Friday, August 28, 2009 - This is Kessler's last day of regular work with me, but it's sure not the last day of our friendship. She has loved me unconditionally, made me feel safe, and taught me that playing with people (well, at least with her) is a blast!! She has brought my words out and helped me notice the world. She has swung me, rocked me, carried me, jumped with me, danced with me, played drums with me, kicked balls with me, gone swimming with me, taken me places, and fed me millions of popsicles! I love her.
Thank You, Kessler, for a wonderful, communcative, awesome year of fun!!!
Love,
Tommy
p.s. Monday, October 5 - Mom has an interview with another therapist this Friday (yyaaaaawwwn)...maybe this one will be ok.
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