I was now, but what I really want is sleep. Good night, all...
Tuesday, April 28, 2009
Mommy Loves Her Boy
He is asleep again. He crawled into the bed next to me to go to sleep. Jacob is drifting off to a Thor DVD, but Jimmy always has to crash out next to me. If I am downstairs, he sleeps on the couch. If I am upstairs, he usually slides into bed next to me. The boy is so perfect when he sleeps. He is pretty much perfect most of the time... okay, that's not true. But, he is a good kid. He sat for two hours at Noodles & Co. tonight. Granted, he had laptop time, but I was impressed. I wish I could keep him young, sweet, and with me forever. I do. It's the one thing you can't predict - what this little boy with autism is going to look like as a man with autism. What will that experience be for him, for us? I wish to God I knew. I think all parents want a crystal ball, but I think many have the luxury of looking forward with more hope and less trepidation. I am sort of the reverse.
A Successful Event...
While it wasn't packed, the stream of friends and supporters was pretty constant. The event was a success and I would like to thank the many people who took time out to come and eat or get some carry out for Noodles and Company. It was greatly appreciated.
Monday, April 27, 2009
Matthew's Center Fundraiser Reminder
Just a quick reminder that tomorrow is the fundraiser to benefit Matthew's Center for Visual Learning's in-home program. The hours are from 5-9 pm. Noodles & Company is located on 9646 Liberia Avenue and the store's phone number is 703 393 9998. 25% of the night's sales will benefit the program. Feel free to tell friends.
Saturday, April 25, 2009
Who am I posing with?
I know he is a Steeler and his name is James. Really nice guy. Told him all about Miss Harris, my son's teacher. And the Superbowl ring is very pretty. But I don't know much else about him. Linebacker, right?
Edit: I figured it out...
Family claims Chicago police officer beat autistic teenager
Kind of telling that they won't discuss the matter - it's a major screw up, but an understandable one. The article makes the point, that for an officer, the behavior of someone who has a disability in communication isn't dissimilar to someone considered to be a suspect.
By Angela Rozas
Tribune reporter
April 25, 2009
Days after Chicago police promoted their expanded training for dealing with people with autism, a teen with the disorder was allegedly struck by an officer who ignored the family's pleas that he was a "special boy."
While Chicago police refused to discuss the incident, relatives of Oscar Guzman detailed the alleged assault and said it was an example of why more officers need to be trained in handling people with special needs.
Guzman, 16, was standing on the sidewalk Wednesday night, taking a break from working in his family's fast-food restaurant in the Pilsen neighborhood. He was watching cars go by when a police cruiser pulled up and two officers began asking him questions, his family says.
Guzman didn't understand the questions, said his sister Nubia, 25, and looked down, away and eventually began walking away. Diagnosed with moderate autism at age 4, he doesn't like confrontation, his sister said.
The officers went after him, his family said, prompting the frightened boy to run into the family restaurant, yelling "I'm a special boy!" as he fled, his sister said.
Despite Guzman's parents yelling to the officers that he was a "special boy" with "special needs," one of the officers struck Guzman in the head with a baton, cutting a gash that would require eight staples, his sister said. The parents witnessed the blow being struck, she said.
On the ground, blood pouring from his head, Guzman, who has the mental capacity of a 5th grader, mumbled again and again, "I'm sorry. I'm sorry. I submit. I submit," his family said.
The Police Department confirmed the incident is under investigation but declined to give the officers' version of what happened. The Independent Police Review Authority said it is investigating and has interviewed relatives of the boy.
The family said it is considering filing a lawsuit against the officers.
The incident occurred the same week the department promoted its award-winning Crisis Intervention Team, a program to train officers to recognize the needs of citizens with mental illness or disabilities. More than 1,100 of the department's 13,500 officers have gone through the 40-hour training since its inception in 2004. The program has won national praise, and just last month, its leader received a Chicago police departmental commendation for the team's work.
To mark Autism Awareness month, the department held its first Autism Safety Awareness night with the Easter Seals on Monday and sent out a six-page training memo to all sworn personnel on autism and police responses. The department also handed out thousands of index cards with tips on how to handle people with autism and distributed buttons for officers to wear.
The department also now trains new recruits in dealing with people with mental disabilities.
While he could not speak to what happened Wednesday, Officer Jerald Nelson, a member of the Crisis Intervention Team who has an 18-year-old son with autism, said the department has been working to better train officers on how to handle people with autism.
"To recognize it, that's number one," Nelson said. Some characteristics of autism -- avoiding eye contact, not responding to questions -- are the same trouble signs that officers are taught to look for in suspects, he said. But officers could make a situation worse if they don't recognize the difference between suspects and those with disabilities. Touching someone with autism lightly can agitate them, for instance, and certain restraints can even endanger them, Nelson said.
One in 160 children has a diagnosis of autism, Nelson said. Statistics show that officers are seven times more likely to have contact with a developmentally disabled person than the general public.
Colleen Shinn, training specialist and manager of the Autism Program service centers for the Easter Seals Metropolitan Chicago, said the department has made strides in developing autism training.
"I think it's great they're being proactive," she said. "There's more work to be done."
But two days after the incident, Guzman's family says not enough has been done. They want the officers involved fired.
"It's upsetting. Shouldn't they all be getting trained for this?" said Nubia Guzman.
She worries her brother is scarred. Guzman, who never had trouble with police, has cried at odd moments since Wednesday night, his family said.
He drew a picture of the incident, displaying the angry face of a towering officer holding what looks like a bat over a cowering figure. On Friday he described the incident in clipped phrases to a reporter.
"Something terrible happened," the teen said. "One chased me. Killing. Killing unnecessary people. Innocent. Beating people with the stick. It's terrible. ... It's going to heal. I'm all right."
His mother, who was always protective of him and had to be persuaded to let him walk to his favorite Chinese restaurant down the street, said she now fears letting the teen out of her sight.
"This time they hit him. The next time, they may kill him," Maria Guzman said.
By Angela Rozas
Tribune reporter
April 25, 2009
Days after Chicago police promoted their expanded training for dealing with people with autism, a teen with the disorder was allegedly struck by an officer who ignored the family's pleas that he was a "special boy."
While Chicago police refused to discuss the incident, relatives of Oscar Guzman detailed the alleged assault and said it was an example of why more officers need to be trained in handling people with special needs.
Guzman, 16, was standing on the sidewalk Wednesday night, taking a break from working in his family's fast-food restaurant in the Pilsen neighborhood. He was watching cars go by when a police cruiser pulled up and two officers began asking him questions, his family says.
Guzman didn't understand the questions, said his sister Nubia, 25, and looked down, away and eventually began walking away. Diagnosed with moderate autism at age 4, he doesn't like confrontation, his sister said.
The officers went after him, his family said, prompting the frightened boy to run into the family restaurant, yelling "I'm a special boy!" as he fled, his sister said.
Despite Guzman's parents yelling to the officers that he was a "special boy" with "special needs," one of the officers struck Guzman in the head with a baton, cutting a gash that would require eight staples, his sister said. The parents witnessed the blow being struck, she said.
On the ground, blood pouring from his head, Guzman, who has the mental capacity of a 5th grader, mumbled again and again, "I'm sorry. I'm sorry. I submit. I submit," his family said.
The Police Department confirmed the incident is under investigation but declined to give the officers' version of what happened. The Independent Police Review Authority said it is investigating and has interviewed relatives of the boy.
The family said it is considering filing a lawsuit against the officers.
The incident occurred the same week the department promoted its award-winning Crisis Intervention Team, a program to train officers to recognize the needs of citizens with mental illness or disabilities. More than 1,100 of the department's 13,500 officers have gone through the 40-hour training since its inception in 2004. The program has won national praise, and just last month, its leader received a Chicago police departmental commendation for the team's work.
To mark Autism Awareness month, the department held its first Autism Safety Awareness night with the Easter Seals on Monday and sent out a six-page training memo to all sworn personnel on autism and police responses. The department also handed out thousands of index cards with tips on how to handle people with autism and distributed buttons for officers to wear.
The department also now trains new recruits in dealing with people with mental disabilities.
While he could not speak to what happened Wednesday, Officer Jerald Nelson, a member of the Crisis Intervention Team who has an 18-year-old son with autism, said the department has been working to better train officers on how to handle people with autism.
"To recognize it, that's number one," Nelson said. Some characteristics of autism -- avoiding eye contact, not responding to questions -- are the same trouble signs that officers are taught to look for in suspects, he said. But officers could make a situation worse if they don't recognize the difference between suspects and those with disabilities. Touching someone with autism lightly can agitate them, for instance, and certain restraints can even endanger them, Nelson said.
One in 160 children has a diagnosis of autism, Nelson said. Statistics show that officers are seven times more likely to have contact with a developmentally disabled person than the general public.
Colleen Shinn, training specialist and manager of the Autism Program service centers for the Easter Seals Metropolitan Chicago, said the department has made strides in developing autism training.
"I think it's great they're being proactive," she said. "There's more work to be done."
But two days after the incident, Guzman's family says not enough has been done. They want the officers involved fired.
"It's upsetting. Shouldn't they all be getting trained for this?" said Nubia Guzman.
She worries her brother is scarred. Guzman, who never had trouble with police, has cried at odd moments since Wednesday night, his family said.
He drew a picture of the incident, displaying the angry face of a towering officer holding what looks like a bat over a cowering figure. On Friday he described the incident in clipped phrases to a reporter.
"Something terrible happened," the teen said. "One chased me. Killing. Killing unnecessary people. Innocent. Beating people with the stick. It's terrible. ... It's going to heal. I'm all right."
His mother, who was always protective of him and had to be persuaded to let him walk to his favorite Chinese restaurant down the street, said she now fears letting the teen out of her sight.
"This time they hit him. The next time, they may kill him," Maria Guzman said.
Wednesday, April 22, 2009
Michael Savage shocks Perez Hilton
How Perez is surprised that Michael Savage said this things is beyond me... he called autism a "fraud" and a "racket." Yeah, like my non-verbal seven year old is pulling a con on me. Hearing Savage's name makes me sick. I am still so angry about his comments.
Remember, the list of Savage's sponsors is on the side bar. Feel free to share the love.
Remember, the list of Savage's sponsors is on the side bar. Feel free to share the love.
Sunday, April 19, 2009
Why I am unhappy?
I get that way from time to time. And I have been one pissy lady this weekend. No two ways about it - I have. My kids weren't horrible while DH was in Chicago, but they were none stop. Especially Jacob. By Friday, I thought I lost my check card, reported it missing (I get a new card and new PIN this week), and found it hours later on my bookcase. When I got to National after nearly two hours on the road (it's a forty minute drive), Jimmy was completely out of his seatbelt and Jacob had literally chattered since we left the house. Nonstop. When my head hit the pillow, I was already asleep.
Saturday wasn't much of an improvement. My in-laws showed up to help DH get the theater seating for the mancave. They even bought another section for the room. I couldn't even get excited about it, as I was so burnt out and exhausted. I am a little embarrassed now that I couldn't be more enthusiastic for their visit. Today, DH took Jacob out, but I didn't feel like I could go anywhere, so I was just sort of stuck at home. I wanted to go somewhere that wasn't the inside of my house and I really wanted to do it by myself. So, now I am mentally stuck in this sort of sucky place where I need a break from everything and have no hope of getting it. I am supposed to work on Saturday at the reference desk - I am willing to count that as a break, even though it's work, but that's in jepoardy at the moment because DH is unavailable and I have to nail down a sitter.
I love my family, but I need to recharge a bit.
Saturday wasn't much of an improvement. My in-laws showed up to help DH get the theater seating for the mancave. They even bought another section for the room. I couldn't even get excited about it, as I was so burnt out and exhausted. I am a little embarrassed now that I couldn't be more enthusiastic for their visit. Today, DH took Jacob out, but I didn't feel like I could go anywhere, so I was just sort of stuck at home. I wanted to go somewhere that wasn't the inside of my house and I really wanted to do it by myself. So, now I am mentally stuck in this sort of sucky place where I need a break from everything and have no hope of getting it. I am supposed to work on Saturday at the reference desk - I am willing to count that as a break, even though it's work, but that's in jepoardy at the moment because DH is unavailable and I have to nail down a sitter.
I love my family, but I need to recharge a bit.
There's nothing wrong with buying your groceries online, is there?
I just place my first order with Peapod, since I never made it to the grocery store today. There isn't enough time to do everything I need to do on weekends. Is there any shame in it? I sort of enjoyed it. Delivery charges range from $6-10 and after I used this coupon, I get free shipping for the next 60 days. That's enough to get me to the end of the school year. Granted, I have been shopping a lot at Costco, but this has the potential to be a good thing.
The boys are fighting over the Wii. Jimmy is obsessed with Mario Kart and is now refusing to let Jacob play Star Wars Legos. Oh, the drama. The screaming....
The boys are fighting over the Wii. Jimmy is obsessed with Mario Kart and is now refusing to let Jacob play Star Wars Legos. Oh, the drama. The screaming....
Friday, April 17, 2009
Thursday, April 16, 2009
Support Matthew's Center on April 28th from 5-9pm
Hi Friends!
As many of you know, the month of April is Autism Awareness Month.
To honor this month, raise awareness, and give something back to a
program that has really helped my son Jimmy tremendously the past
several years, I am hosting a fundraiser at Noodles & Company to
benefit the Matthew's Center for Visual Learning and their in-home
program on April 28th. 25% of the sales from the hours of 5 - 9 pm
from supporters will go to support the in-home therapy program, going
directly into supplies to assist and benefit the students and their
therapist . The therapists who have worked with Jimmy are a huge part
of the reason he has come as far as he has. The strides he has made
in so many of his daily life skills, from everything from toileting to
eating a wider variety of foods to being able to do the basic things
that many people take for granted like going to the store or a
restaurant, have come from the hard work of his in-home therapists.
Their work has made a profound impact on not just the quality of
Jimmy's life, but ours as a family as well.
Noodles & Company is located on 9646 Liberia Avenue and the store's
phone number is 703 393 9998.
We'd love to have you come to the event, but I also I would love if
you would let your friends and colleagues know. Feel free to forward
on this information to as many people as you can. I will be around most of
the evening and I'm sure the boys will put in an appearance as well.
Staff from Matthew's Center will be around as well to tell you more
about their programs and autism in general. If you have any questions
about the event, feel free to ask. I hope to see you there
As many of you know, the month of April is Autism Awareness Month.
To honor this month, raise awareness, and give something back to a
program that has really helped my son Jimmy tremendously the past
several years, I am hosting a fundraiser at Noodles & Company to
benefit the Matthew's Center for Visual Learning and their in-home
program on April 28th. 25% of the sales from the hours of 5 - 9 pm
from supporters will go to support the in-home therapy program, going
directly into supplies to assist and benefit the students and their
therapist . The therapists who have worked with Jimmy are a huge part
of the reason he has come as far as he has. The strides he has made
in so many of his daily life skills, from everything from toileting to
eating a wider variety of foods to being able to do the basic things
that many people take for granted like going to the store or a
restaurant, have come from the hard work of his in-home therapists.
Their work has made a profound impact on not just the quality of
Jimmy's life, but ours as a family as well.
Noodles & Company is located on 9646 Liberia Avenue and the store's
phone number is 703 393 9998.
We'd love to have you come to the event, but I also I would love if
you would let your friends and colleagues know. Feel free to forward
on this information to as many people as you can. I will be around most of
the evening and I'm sure the boys will put in an appearance as well.
Staff from Matthew's Center will be around as well to tell you more
about their programs and autism in general. If you have any questions
about the event, feel free to ask. I hope to see you there
Wednesday, April 15, 2009
Surviving Night One of Single Parenthood
DH is off in Chicago. Jimmy is down for the count. He has been great all evening. Jacob is a huge pain in the butt. He has been spun up since I got him from daycare. We took Chloe to the vet, as we were concerned about her incision. It turned out to be nothing, but was quite a juggling act to get Jimmy covered so I could make the vet run. She is released from her bathroom prison, so I have everyone in bed with me at the moment. As a matter of fact, Jacob just slipped away to slumber. Yay!!!
Hopefully Jacob will have a better day two.
Hopefully Jacob will have a better day two.
The Horse Boy
"When Rupert Isaacson decided to take his autistic son, Rowan, on a trip to Mongolia to ride horses and seek the help of shamans two years ago, he had a gut instinct that the adventure would have a healing effect on the boy. Mr. Isaacson’s instinct was rewarded after the trip, when some of Rowan’s worst behavioral issues, including wild temper tantrums, all but disappeared."
This story is really interesting and I think I will definitely read the book.
This story is really interesting and I think I will definitely read the book.
Tuesday, April 14, 2009
Mmmm... yeah, I have been there.
Fortunately, our meltdowns are fewer and farther between in the store. Sometimes, however, we don't make it out of the minivan... :)
Parents of autistic children hope for a little more understanding
April 13, 2009 - 7:49 PM
By Sara Perkins, The Monitor
McALLEN - At the moment when her daughter starts moaning and wailing in the checkout line at the grocery store, Veronica Garza could really use a friendly face.
Instead, she says, fellow patrons look on with disapproval and disgust: Another terrible parent letting her child throw a tantrum.
But 5-year-old Alexis Garza isn't screaming for a candy bar or toy. Rather, she's bothered by the crack and rustle of the bags in the checkout line, an intolerably aggravating noise in her sensitive ears.
Lacking the words to tell her mother, instead the lovely, autistic child has what her parents gently term "a meltdown."
"If people could just, you know, give a smile," Garza said wistfully. "Show you understand, you realize - ‘It's OK.' ... That would mean the world to the parent of an autistic child."
Autism, a developmental disorder characterized by difficulty communicating or interacting, is increasingly diagnosed in young children - as many as 1 in 150 - but still poorly understood by many of those whose lives have not been changed by it.
Efforts to boost the disorder's public profile in the Rio Grande Valley have met with some success. Initial struggles with school districts have led to better and better programs to teach life skills to autistic children, who often require frequent repetition and a steady routine. And a group of researchers and parents will hold a walk for Autism Awareness Month on April 25 at McAllen Memorial High School.
But outside the support groups and special education classrooms, Garza said, there is still too little tolerance and understanding for parents.
"We've come a long way on the discrimination factor," she said. "But at places like H.E.B., they give you looks, like, ‘Control your kid.'"
Parents of autistic children hope for a little more understanding
April 13, 2009 - 7:49 PM
By Sara Perkins, The Monitor
McALLEN - At the moment when her daughter starts moaning and wailing in the checkout line at the grocery store, Veronica Garza could really use a friendly face.
Instead, she says, fellow patrons look on with disapproval and disgust: Another terrible parent letting her child throw a tantrum.
But 5-year-old Alexis Garza isn't screaming for a candy bar or toy. Rather, she's bothered by the crack and rustle of the bags in the checkout line, an intolerably aggravating noise in her sensitive ears.
Lacking the words to tell her mother, instead the lovely, autistic child has what her parents gently term "a meltdown."
"If people could just, you know, give a smile," Garza said wistfully. "Show you understand, you realize - ‘It's OK.' ... That would mean the world to the parent of an autistic child."
Autism, a developmental disorder characterized by difficulty communicating or interacting, is increasingly diagnosed in young children - as many as 1 in 150 - but still poorly understood by many of those whose lives have not been changed by it.
Efforts to boost the disorder's public profile in the Rio Grande Valley have met with some success. Initial struggles with school districts have led to better and better programs to teach life skills to autistic children, who often require frequent repetition and a steady routine. And a group of researchers and parents will hold a walk for Autism Awareness Month on April 25 at McAllen Memorial High School.
But outside the support groups and special education classrooms, Garza said, there is still too little tolerance and understanding for parents.
"We've come a long way on the discrimination factor," she said. "But at places like H.E.B., they give you looks, like, ‘Control your kid.'"
Sunday, April 12, 2009
Never ever judge a book by its cover...
I have watched this three times now. It leaves me overjoyed and in tears every time. Susan Boyle is fabulous! I hope her dreams come true!
Saturday, April 11, 2009
A Thoughtful Spinaweb OpEd by Alex Granados
Click through to the link. Spinaweb is a local vocational program that is facing cuts in the current economy at the hands of the county. He really looks into the issue of the cuts and how deep they go, but he also has a personal take on it, discussion his experiences with his aunt, who has Down's Syndrome.
Alex did the first article on Jimmy in the Manassas Journal Messenger. He followed us around off and on for a week or two and got the Jimmy experience first hands. Since then, he has attended a birthday party and several career days at my school and is just an all around great guy. I almost like him as the editorial page editor more because I see a lot more of him - his ideas and opinions - in it. For those local folks, he makes the editorial page really worth the read.
Alex did the first article on Jimmy in the Manassas Journal Messenger. He followed us around off and on for a week or two and got the Jimmy experience first hands. Since then, he has attended a birthday party and several career days at my school and is just an all around great guy. I almost like him as the editorial page editor more because I see a lot more of him - his ideas and opinions - in it. For those local folks, he makes the editorial page really worth the read.
Friday, April 10, 2009
VH1 Classic Rocks Autism
So the DH and Jacob are watching the VH1 Classic show Heavy and their Rock Autism commercial comes on. It's always amazing that they start with the stat of 1 in 166 - any parent with a kid with autism knows that number. Actually, sadly, it is a little dated, now hovering at 1 in a 150. But it is very gratifying to see people who's music you grew up with out there raising awareness for your child and his illness, his disability. Jacob was excited to see KISS in the ad - I think he wants to join the KISS Army someday.
Thank to VH1 and its many artists for supporting kids like Jimmy.
Thank to VH1 and its many artists for supporting kids like Jimmy.
Why T and I are bad together?
She introduced me to Petunia Pickle Bottom - granted, it is heavily marketed to new moms, some of those bags are cute. I have a pair of shoes that would be just perfect with this...
Thursday, April 09, 2009
Playing with Twitter...
I signed up with Twitter and I am now playing with it for the blog... You can keep track of me and my mundane existence on the sidebar.
Go to Ask.com to raise money for Autism Speaks...
Go to Ask.com and add an autism skin to your Ask.com page view. For each skin in use, Ask.com will give money to Autism Speaks. Additionally, you have the opportunity to answer 16 questions about autism and accumulate points. For every point you earn, Ask.com will contribute 1 cent to Autism Speak's work for autism awareness and research for a cure. Please check back often and keep earning points. Autism Speaks - It's time to listen!
Wednesday, April 08, 2009
Washington Post OpEd :Still Overlooking Autistic Adults
Still Overlooking Autistic Adults
By Linda H. Davis
Saturday, April 4, 2009; A15
Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?
Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.
But most of these cognitively impaired citizens don't vote. Most of them can't live alone or work in public places. Many can't even take public transportation by themselves.
Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. "Improving life-long services for people with ASD," as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he's home again from his supervised job -- two mornings a week -- because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.
Randy's father and I are keeping him at home as long as possible, even as I'm battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we're playing Russian roulette with Randy's future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.
Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.
By Linda H. Davis
Saturday, April 4, 2009; A15
Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?
Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.
But most of these cognitively impaired citizens don't vote. Most of them can't live alone or work in public places. Many can't even take public transportation by themselves.
Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. "Improving life-long services for people with ASD," as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he's home again from his supervised job -- two mornings a week -- because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.
Randy's father and I are keeping him at home as long as possible, even as I'm battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we're playing Russian roulette with Randy's future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.
Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.
Sunday, April 05, 2009
More articles related to MHC and autism...
My dad's response to his little homework assignment... His isn't a doctor, but an extremely well read PhD, who was pre-med for his first few years of college. I wouldn't let him operate on me, but I think he understand the terminology and the theory behind medical scholarship.
"I read through the article. It suggests possibilities that are quite interesting. However, it is extremely technical. You might try the following.
I conducted a search of Google as follows:
Search terms: autism "HLA-B27"
This yields the following results:
HLA and Autism
www.springerlink.com/index/735K31284L316446.pdf
Autism and Lyme
www.canlyme.com/autismlyme.html
etc.
I suggest you read some of the articles. Perhaps you have hit on something important. While there is no cure at this time for diseases associated with HLA-B27, it may be possible to effect some improvement, even reversal, through development of stem cells that modify the histocompatibility antigen."
"I read through the article. It suggests possibilities that are quite interesting. However, it is extremely technical. You might try the following.
I conducted a search of Google as follows:
Search terms: autism "HLA-B27"
This yields the following results:
HLA and Autism
www.springerlink.com/index/735K31284L316446.pdf
Autism and Lyme
www.canlyme.com/autismlyme.html
etc.
I suggest you read some of the articles. Perhaps you have hit on something important. While there is no cure at this time for diseases associated with HLA-B27, it may be possible to effect some improvement, even reversal, through development of stem cells that modify the histocompatibility antigen."
An article about the American vintner in Japan
(06-17) 04:00 PDT Ashikaga , Japan -- Bruce Gutlove was working as a wine consultant in St. Helena in 1989 when he got the call that changed his life forever, even though at the time he said, "No, thanks," and hung up.
Gutlove's friends, Matt and Fred Cline from Cline Cellars in Sonoma, had sold some grapes to a school for mentally disabled people in Japan, and had visited there to see how they planned to make wine. The Clines made some recommendations to the school's founder, who asked if they knew someone who could help make the necessary changes.
"My name came up. I'm not sure why," says Gutlove, 42. "Maybe it's because my friends thought I should spend time in a mental institution in rural Japan."
After Gutlove said no on the phone a couple of times, the school sent someone to meet him in San Francisco. He was moved enough by the interest in him to agree to help with one harvest at the school, which is located about an hour north of Tokyo by train.
"I liked what I was doing in Napa," says Gutlove, who had worked at Cakebread Cellars, Robert Mondavi Winery, Trefethen Vineyards and Merryvale Vineyards before going into consulting. "I said I would stay for six months."
He's been there ever since.
Gutlove was impressed by the mission of Noboru Kawada, who founded Cocoromi Gakuen near the city of Ashikaga in 1969. Kawada wanted to give mentally disabled Japanese a future beyond the way society then usually treated them -- by "giving them a lot of drugs and putting them in a room somewhere," says Kawada's daughter, Chieko Ikegami.
Kawada and Ikegami put their "students" -- most are adults, but Cocoromi is officially a school -- to work on clearing the hill behind the facility to grow grapes, as well as on various other agricultural projects.
"It's a good life lesson," Ikegami says. "You work hard all summer and you can taste the fruits in the fall."
A classroom in the fields
The school teaches students to be more self-reliant and agriculture is a big part of that. One goal is to move students into off-campus apartments. The school now has 90 students on campus and another 40 in Ashikaga in group homes.
In 1984, Coco Farm and Winery -- the name is short for "Cocoromi" -- was formed as a separate company for legal reasons, because a school cannot sell wine. Coco Farm has a vineyard right behind the facility where it grows grapes with student labor and it also buys grapes. Coco Farm, which neighbors the school, also grows and sells shiitake mushrooms.
Coco Farm has 20 full-time employees, most of whom are not mentally disabled. The students do all the remaining tasks and are paid for their work.
"Sometimes we'll have 40 students in the vineyard during harvest," Gutlove says. Before he arrived, there was no true winemaker.
Gutlove moved into a dormitory with the students in 1989 and quickly learned their idiosyncrasies had both advantages and disadvantages.
"Harvest is a bit chaotic," Gutlove says. "You're carrying 8 kilos (about 17 1/2 pounds) down the hill. Someone will fall and roll down the hill and knock over the next person, and they'll fall. Grapes go everywhere."
However, he and Ikegami say there are no better workers for some of winemaking's more monotonous jobs.
"If you give a student a task, once they understand it, they never get bored," Ikegami says. "One boy stands on the hill all day long waiting for crows. When a crow comes, he rings a bell."
In bottling, at first Gutlove was frustrated by workers who would label every bottle upside-down, or make a small tear in the same corner of every label. But then he learned to find the right person for the right task.
"They have a lot of endurance," Gutlove says. "They'll pull the bottom two leaves off every cluster. It's very boring, very repetitive. They do it with enthusiasm."
Gutlove says the students are also superb at quality control, watching 2, 200 bottles go by per hour and catching any one that contains minute amounts of cork dust.
"Two students go through 150 to 200 tons of grapes a year, taking out even the smallest amount of rot," he says. "They're very good at it."
Ikegami says it's difficult to get the students to take a day off because they love to work. And she says with their money, they often buy Coco Farm wines, which are available in local stores as well as some stores in Tokyo, and by mail order. Today they hold their own against other Japanese wines, which are generally a sorry lot.
But community spirit was the reason most people bought Coco Farm wines when Gutlove arrived. He says he and Kawada made an early agreement that "we would not use the fact that mentally disabled people were making it as an excuse for poor wine. (Kawada) was happy about that."
Japan's weather has long frustrated attempts at growing world-class wine grapes. Beyond cold winters, humid summers that don't cool off at night, high winds and year-to-year unpredictability, there's a month-long rainy season in the middle of summer that both drenches the vines during flowering season and fosters a cornucopia of mold.
"If you look at the data on humidity and temperature, this is not like anywhere else," Gutlove says. "The most immediate thing I can come up with is the East Coast of the United States, from Virginia to Missouri."
Moreover, Japanese consumers are willing to pay high prices for table grapes, making wine grapes an uninviting proposition for most farmers.
Quality of grapes was poor
"When I first got here, I couldn't believe the poor quality of grapes," Gutlove says of fruit Coco Farm bought from outsiders. "Not ripe, ripeness was uneven, rot. After the first harvest I went down and talked to the growers. It was not a pleasant time. Finally I came to understand they were growing only table grapes. The ones that weren't good enough to be table grapes, they were selling to us as wine grapes."
Gutlove says he told a group of farmers to reduce their yields, change varieties from Cabernet Sauvignon and Merlot to something better suited to the weather and spend more time in their vineyards pruning and fighting rot.
"They took my translator aside and said, 'Take him out of here,' " he says, laughing.
Though he has a bachelor's in plant physiology from State University of New York-Stonybrook and studied in the master's program in enology at UC Davis, Gutlove says his focus in California was always winemaking, not grapegrowing. However, after he met his wife-to-be, Ryoko, at a party in Tokyo in 1991 and realized he would be spending more time in Japan than he thought, Gutlove began seeking grapes that would adapt well to Japan's weather. He also moved out of the school dormitory.
He currently makes sparkling wine with a blend of Riesling Lion, a hybrid grape developed by the Suntory Group beverage company, and Koshu, a grape unique to Japan that is well-adapted to the conditions yet neutral in flavor. Though expensive at 6,000 yen per bottle ($55), the 1998 Novo demi-sec sparkling wine is Coco Farm's best product, crisp and yeasty, with high acidity balancing the 3 percent residual sugar. An earlier vintage of this wine was served at a G-8 Kyushu-Okinawa Summit in Nago Cityin 2000, the first time a Japanese wine was served at such an occasion, Gutlove says.
Coco Farm's best still wine is made from Kerner, a hybrid grape grown in Germany and Austria that Gutlove says was created in the 1950s. The 2002 Cocoromi Series Kerner ($18) smells and tastes fresh and grassy, with a hint of tart apple -- like a Sauvignon Blanc without the mineral notes.
Winemaker can experiment
Among the winery's 15,000 cases of wine produced per year, Gutlove also makes wine from oddities like Muscat Bailey A, a hybrid of red Muscat with the American table grape Bailey. He's experimenting in the hillside vineyard beside the school with the Missouri red-wine favorite Norton, as well as Tannat, which seems the most promising. The wines are hit-or-miss. But though he says he misses Napa Valley, not least for the quality of grapes, Gutlove says he has no plans to move on soon.
"I've been asked time and again why I'm still here," he says. "It's the students and the teachers. Just to see the way that they work. The energy and enthusiasm they put into it. Winemaking has consumed my entire life. Everything about it I love, on so many levels. In my darker times I think it might be self-indulgent. I was raised in a Christian family. To be able to be involved with something like this is perfect. To be able to do what I love and help people overcome obstacles."
After all, Cocoromi means "challenge."
Though Gutlove would like to find U.S. distribution, Coco Farm wines are not currently available here, but the winery is open to visitors in Japan. For information, go to cocowine.com.
Gutlove's friends, Matt and Fred Cline from Cline Cellars in Sonoma, had sold some grapes to a school for mentally disabled people in Japan, and had visited there to see how they planned to make wine. The Clines made some recommendations to the school's founder, who asked if they knew someone who could help make the necessary changes.
"My name came up. I'm not sure why," says Gutlove, 42. "Maybe it's because my friends thought I should spend time in a mental institution in rural Japan."
After Gutlove said no on the phone a couple of times, the school sent someone to meet him in San Francisco. He was moved enough by the interest in him to agree to help with one harvest at the school, which is located about an hour north of Tokyo by train.
"I liked what I was doing in Napa," says Gutlove, who had worked at Cakebread Cellars, Robert Mondavi Winery, Trefethen Vineyards and Merryvale Vineyards before going into consulting. "I said I would stay for six months."
He's been there ever since.
Gutlove was impressed by the mission of Noboru Kawada, who founded Cocoromi Gakuen near the city of Ashikaga in 1969. Kawada wanted to give mentally disabled Japanese a future beyond the way society then usually treated them -- by "giving them a lot of drugs and putting them in a room somewhere," says Kawada's daughter, Chieko Ikegami.
Kawada and Ikegami put their "students" -- most are adults, but Cocoromi is officially a school -- to work on clearing the hill behind the facility to grow grapes, as well as on various other agricultural projects.
"It's a good life lesson," Ikegami says. "You work hard all summer and you can taste the fruits in the fall."
A classroom in the fields
The school teaches students to be more self-reliant and agriculture is a big part of that. One goal is to move students into off-campus apartments. The school now has 90 students on campus and another 40 in Ashikaga in group homes.
In 1984, Coco Farm and Winery -- the name is short for "Cocoromi" -- was formed as a separate company for legal reasons, because a school cannot sell wine. Coco Farm has a vineyard right behind the facility where it grows grapes with student labor and it also buys grapes. Coco Farm, which neighbors the school, also grows and sells shiitake mushrooms.
Coco Farm has 20 full-time employees, most of whom are not mentally disabled. The students do all the remaining tasks and are paid for their work.
"Sometimes we'll have 40 students in the vineyard during harvest," Gutlove says. Before he arrived, there was no true winemaker.
Gutlove moved into a dormitory with the students in 1989 and quickly learned their idiosyncrasies had both advantages and disadvantages.
"Harvest is a bit chaotic," Gutlove says. "You're carrying 8 kilos (about 17 1/2 pounds) down the hill. Someone will fall and roll down the hill and knock over the next person, and they'll fall. Grapes go everywhere."
However, he and Ikegami say there are no better workers for some of winemaking's more monotonous jobs.
"If you give a student a task, once they understand it, they never get bored," Ikegami says. "One boy stands on the hill all day long waiting for crows. When a crow comes, he rings a bell."
In bottling, at first Gutlove was frustrated by workers who would label every bottle upside-down, or make a small tear in the same corner of every label. But then he learned to find the right person for the right task.
"They have a lot of endurance," Gutlove says. "They'll pull the bottom two leaves off every cluster. It's very boring, very repetitive. They do it with enthusiasm."
Gutlove says the students are also superb at quality control, watching 2, 200 bottles go by per hour and catching any one that contains minute amounts of cork dust.
"Two students go through 150 to 200 tons of grapes a year, taking out even the smallest amount of rot," he says. "They're very good at it."
Ikegami says it's difficult to get the students to take a day off because they love to work. And she says with their money, they often buy Coco Farm wines, which are available in local stores as well as some stores in Tokyo, and by mail order. Today they hold their own against other Japanese wines, which are generally a sorry lot.
But community spirit was the reason most people bought Coco Farm wines when Gutlove arrived. He says he and Kawada made an early agreement that "we would not use the fact that mentally disabled people were making it as an excuse for poor wine. (Kawada) was happy about that."
Japan's weather has long frustrated attempts at growing world-class wine grapes. Beyond cold winters, humid summers that don't cool off at night, high winds and year-to-year unpredictability, there's a month-long rainy season in the middle of summer that both drenches the vines during flowering season and fosters a cornucopia of mold.
"If you look at the data on humidity and temperature, this is not like anywhere else," Gutlove says. "The most immediate thing I can come up with is the East Coast of the United States, from Virginia to Missouri."
Moreover, Japanese consumers are willing to pay high prices for table grapes, making wine grapes an uninviting proposition for most farmers.
Quality of grapes was poor
"When I first got here, I couldn't believe the poor quality of grapes," Gutlove says of fruit Coco Farm bought from outsiders. "Not ripe, ripeness was uneven, rot. After the first harvest I went down and talked to the growers. It was not a pleasant time. Finally I came to understand they were growing only table grapes. The ones that weren't good enough to be table grapes, they were selling to us as wine grapes."
Gutlove says he told a group of farmers to reduce their yields, change varieties from Cabernet Sauvignon and Merlot to something better suited to the weather and spend more time in their vineyards pruning and fighting rot.
"They took my translator aside and said, 'Take him out of here,' " he says, laughing.
Though he has a bachelor's in plant physiology from State University of New York-Stonybrook and studied in the master's program in enology at UC Davis, Gutlove says his focus in California was always winemaking, not grapegrowing. However, after he met his wife-to-be, Ryoko, at a party in Tokyo in 1991 and realized he would be spending more time in Japan than he thought, Gutlove began seeking grapes that would adapt well to Japan's weather. He also moved out of the school dormitory.
He currently makes sparkling wine with a blend of Riesling Lion, a hybrid grape developed by the Suntory Group beverage company, and Koshu, a grape unique to Japan that is well-adapted to the conditions yet neutral in flavor. Though expensive at 6,000 yen per bottle ($55), the 1998 Novo demi-sec sparkling wine is Coco Farm's best product, crisp and yeasty, with high acidity balancing the 3 percent residual sugar. An earlier vintage of this wine was served at a G-8 Kyushu-Okinawa Summit in Nago Cityin 2000, the first time a Japanese wine was served at such an occasion, Gutlove says.
Coco Farm's best still wine is made from Kerner, a hybrid grape grown in Germany and Austria that Gutlove says was created in the 1950s. The 2002 Cocoromi Series Kerner ($18) smells and tastes fresh and grassy, with a hint of tart apple -- like a Sauvignon Blanc without the mineral notes.
Winemaker can experiment
Among the winery's 15,000 cases of wine produced per year, Gutlove also makes wine from oddities like Muscat Bailey A, a hybrid of red Muscat with the American table grape Bailey. He's experimenting in the hillside vineyard beside the school with the Missouri red-wine favorite Norton, as well as Tannat, which seems the most promising. The wines are hit-or-miss. But though he says he misses Napa Valley, not least for the quality of grapes, Gutlove says he has no plans to move on soon.
"I've been asked time and again why I'm still here," he says. "It's the students and the teachers. Just to see the way that they work. The energy and enthusiasm they put into it. Winemaking has consumed my entire life. Everything about it I love, on so many levels. In my darker times I think it might be self-indulgent. I was raised in a Christian family. To be able to be involved with something like this is perfect. To be able to do what I love and help people overcome obstacles."
After all, Cocoromi means "challenge."
Though Gutlove would like to find U.S. distribution, Coco Farm wines are not currently available here, but the winery is open to visitors in Japan. For information, go to cocowine.com.
I have to find some of this wine...
A winery in Japan staffed entirely by autistic and developmentally disabled adults.
Saturday, April 04, 2009
For Becky and Dad...
Read and comment...this is an article on MHC (an autoimmune code on DNA, if I understand correctly) and autism. Most of my family carry a set of abnormalities in this area. DH and I went to dinner and we rehashed Larry King and all of the potential causes. After three glasses of wine, I guess this is my idea of fun.
Friday, April 03, 2009
So I am watching Larry King with Jenny McCarthy and Jim Carrey...
I think I am finding the whole panel on both sides annoying. I appreciate the work that Jenny McCarthy has done in raising awareness, but I think the singular focus on vaccines reduce the funding available to other causes and environmental triggers to the genetic component. When every discussion on autism devolves into a debate about vaccines, it depresses me, like there is no hope for better treatments or cures for Jimmy. I think there is a genetic component and an environmental trigger - saying there is an autism shot is an oversimplification.
(Oh, and Dr. Bernadine Healy comes off as entirely too smug on TV. She needs some media coaching, because she smiles too much and comes off as condescending. It's offensive.)
(Oh, and Dr. Bernadine Healy comes off as entirely too smug on TV. She needs some media coaching, because she smiles too much and comes off as condescending. It's offensive.)
Thursday, April 02, 2009
Progress is Slow in the War on Autism
A great overview of how things stand now...
"Aside from doing the morally right thing, Jane Searing said, funding more programs for adults with autism makes economic sense.
"If you get them employed, you won't have to pay for them forever," Searing said, adding it's much better to "turn these people into taxpayers instead of tax takers.""
This is an interesting note, especially in light of the cuts that Prince William County is trying to make in vocational rehab programs like Spinaweb in the current budget crisis. Yes, it saves the county money, but it only passes along the cost to the state and federal tax coffers to support adults with developmental disabilities. Not to mention the sense of purpose these adults get from working...
"Aside from doing the morally right thing, Jane Searing said, funding more programs for adults with autism makes economic sense.
"If you get them employed, you won't have to pay for them forever," Searing said, adding it's much better to "turn these people into taxpayers instead of tax takers.""
This is an interesting note, especially in light of the cuts that Prince William County is trying to make in vocational rehab programs like Spinaweb in the current budget crisis. Yes, it saves the county money, but it only passes along the cost to the state and federal tax coffers to support adults with developmental disabilities. Not to mention the sense of purpose these adults get from working...
Autism parents' plea: Understand kids' meltdowns
I can't tell you how much a part of the experience this is for parents, the constant stares and judgment that come along with taking your kid out in public. It is truly hell on earth. You feel like a freakshow. As Jimmy has gotten older, I can honestly say that we go out less. Once he got too big for high chairs and Jacob got willful and mobile, it just became too much. With all the therapy that we have done, he does better in restaurants and such, but it is still a trial.
By Madison Park
CNN
(CNN) -- Heather Moores and her 4-year-old son, Julian, sat in a waiting room at a pediatrician's office.
Julian, who has autism, was goose-stepping and counting every coat hook on the wall aloud. He started roaring like a lion. Moores smiled at her son, then noticed the horrified looks on other people's faces.
"People do not understand," she said. "To them, as bizarre as his actions might look, for us, they're a blessing. For us, it means he's enjoying himself and happy. No one understands that. They just see an out-of-control child. They don't understand this is a good day, when there isn't screams upon screams."
On the second World Autism Awareness Day, the search for a cure continues, and major court decisions have helped sort out the theories connected to the mysterious developmental disorders. Public knowledge and acceptance of autism and the difficulties the families face may be growing, as some iReporters told CNN.
But that's little comfort to a parent whose child's behavior can range from quirky to violent.
Children with autism have unexplainable breakdowns -- their outbursts are often loud, aggressive and disturbing. Julian slams himself against the ground or wall while he screams, flailing his limbs. Julian's younger brother, Marcus, 3, squirms away from his parents and runs into the street to oncoming cars because he is fascinated by them. He also screams with such ferocity that his face turns purple and mucus bubbles from his nostrils. Their youngest brother, Aric, also has autism and just turned 1 year old.
Heather Moores remembers that the stares in the waiting room were full of contempt. Onlookers shook their head in disgust and glared, making her feel like the "world's worst mother." This happens every time they go out to the doctor's office, the barber shop or anywhere in public.
"You'll hear people talking, 'If it was my kid, he wouldn't behave like that. These parents don't know how to discipline their children. Why don't you shut that kid up?' said Alexandre Moores, Heather's husband. "It makes going out unpleasant. I don't know if you ever get used to it."
Autism spectrum disorders affect the ability to communicate and interact. Many with autism have repetitive movements like rocking or hand-flapping and become set in their daily routines. Anything unexpected -- even a sound -- can result in major meltdowns.
"The reason why toddlers have tantrums is they don't have verbal or cognitive skills yet," said Dr. Lisa Shulman, an associate clinical professor of pediatrics at the Albert Einstein College of Medicine in Bronx, New York. "They have no control to navigate difficult situations using their social and communication skills. That inability to communicate can set off such behaviors in toddlers."
Their odd behavior draws unwanted attention. Marcus walks on his tiptoes and amuses himself by dumping liquid from sippy cups and containers. Julian counts everything aloud, over and over again.
"People are always staring and because the children don't show any type of physical abnormality, like someone with Down syndrome would show; people kind of assume that you're a bad parent," said Alexandre Moores
When the staring and critical comments become too overwhelming, Julian's mother tells the onlookers that the children have autism.
"You're in a situation you have to explain your kids, because you can't take the looks," she said. "It gets really, really hard. No one seems to understand where you're coming from." Read Moores' iReport submission.
To prepare for outings, parents should bring a favorite toy or plan ahead to reduce waiting time. But don't avoid going out, Shulman said.
Parents should have a pat answer to say to a nasty face maker, she said. "It should be something they feel comfortable with, about this invisible disorder. 'This is what autism looks like. My child has disability.' They're not obliged to engage in conversation. Make a statement that's heard and move on."
Moores said the most helpful thing the public can do is withhold the judgmental looks and reassure the parent with a smile when they encounter a child having a public meltdown. Critical comments are "very, very painful and very depressing," she said.
"Please try to understand parents of special children are going through living hell 24 hours a day," she said. "Even if you are confused and you don't know what to do, give that parent a reassuring smile. That's the absolute best thing you could do."
It's a familiar experience for Laura Shumaker who remembered the scorn of strangers whenever her son had a public meltdown. Autism was not well-known when her son, Matthew, now 22, was growing up.
"When I look back, there are people who judged me," she said. "There were just as many that were compassionate, who could see I was trying my best."
Four years ago, she and her son were flying home to Northern California from Philadelphia, Pennsylvania. At the airport, Matthew learned they would be flying on US Airways instead of their usual United Airlines.
This greatly distressed Matthew, who started hyperventilating.
Shumaker walked to the U.S. Airway ticket counter as Matthew rocked behind her nervously, mumbling, "United is friendly. US Air is not."
Under her breath, Shumaker whispered to the ticketing agent that Matthew had autism. Then in a louder voice, she said, "We'd just like to trade these in for United tickets," and winked.
The agent paused for a moment, glanced at Matthew and said: "Oh! Well, don't worry, because US Air and United are the same now...really. We merged. We're the same airline now."
Strangers in line chimed in. "That's right," said a man standing behind them in line. "And the skies are still friendly."
Hearing those reassurances, Matthew stopped hyperventilating and began breathing normally. Before leaving for the US Airways gate, Shumaker hugged the ticketing agent in gratitude. Read Shumaker's iReport submission.
"So many children are diagnosed, there is an awareness now," she said.
But it's still difficult to explain to others, Shumaker said, when Matthew comments at the supermarket that a person standing in front of them at the check-out line is too fat to buy ice cream.
By Madison Park
CNN
(CNN) -- Heather Moores and her 4-year-old son, Julian, sat in a waiting room at a pediatrician's office.
Julian, who has autism, was goose-stepping and counting every coat hook on the wall aloud. He started roaring like a lion. Moores smiled at her son, then noticed the horrified looks on other people's faces.
"People do not understand," she said. "To them, as bizarre as his actions might look, for us, they're a blessing. For us, it means he's enjoying himself and happy. No one understands that. They just see an out-of-control child. They don't understand this is a good day, when there isn't screams upon screams."
On the second World Autism Awareness Day, the search for a cure continues, and major court decisions have helped sort out the theories connected to the mysterious developmental disorders. Public knowledge and acceptance of autism and the difficulties the families face may be growing, as some iReporters told CNN.
But that's little comfort to a parent whose child's behavior can range from quirky to violent.
Children with autism have unexplainable breakdowns -- their outbursts are often loud, aggressive and disturbing. Julian slams himself against the ground or wall while he screams, flailing his limbs. Julian's younger brother, Marcus, 3, squirms away from his parents and runs into the street to oncoming cars because he is fascinated by them. He also screams with such ferocity that his face turns purple and mucus bubbles from his nostrils. Their youngest brother, Aric, also has autism and just turned 1 year old.
Heather Moores remembers that the stares in the waiting room were full of contempt. Onlookers shook their head in disgust and glared, making her feel like the "world's worst mother." This happens every time they go out to the doctor's office, the barber shop or anywhere in public.
"You'll hear people talking, 'If it was my kid, he wouldn't behave like that. These parents don't know how to discipline their children. Why don't you shut that kid up?' said Alexandre Moores, Heather's husband. "It makes going out unpleasant. I don't know if you ever get used to it."
Autism spectrum disorders affect the ability to communicate and interact. Many with autism have repetitive movements like rocking or hand-flapping and become set in their daily routines. Anything unexpected -- even a sound -- can result in major meltdowns.
"The reason why toddlers have tantrums is they don't have verbal or cognitive skills yet," said Dr. Lisa Shulman, an associate clinical professor of pediatrics at the Albert Einstein College of Medicine in Bronx, New York. "They have no control to navigate difficult situations using their social and communication skills. That inability to communicate can set off such behaviors in toddlers."
Their odd behavior draws unwanted attention. Marcus walks on his tiptoes and amuses himself by dumping liquid from sippy cups and containers. Julian counts everything aloud, over and over again.
"People are always staring and because the children don't show any type of physical abnormality, like someone with Down syndrome would show; people kind of assume that you're a bad parent," said Alexandre Moores
When the staring and critical comments become too overwhelming, Julian's mother tells the onlookers that the children have autism.
"You're in a situation you have to explain your kids, because you can't take the looks," she said. "It gets really, really hard. No one seems to understand where you're coming from." Read Moores' iReport submission.
To prepare for outings, parents should bring a favorite toy or plan ahead to reduce waiting time. But don't avoid going out, Shulman said.
Parents should have a pat answer to say to a nasty face maker, she said. "It should be something they feel comfortable with, about this invisible disorder. 'This is what autism looks like. My child has disability.' They're not obliged to engage in conversation. Make a statement that's heard and move on."
Moores said the most helpful thing the public can do is withhold the judgmental looks and reassure the parent with a smile when they encounter a child having a public meltdown. Critical comments are "very, very painful and very depressing," she said.
"Please try to understand parents of special children are going through living hell 24 hours a day," she said. "Even if you are confused and you don't know what to do, give that parent a reassuring smile. That's the absolute best thing you could do."
It's a familiar experience for Laura Shumaker who remembered the scorn of strangers whenever her son had a public meltdown. Autism was not well-known when her son, Matthew, now 22, was growing up.
"When I look back, there are people who judged me," she said. "There were just as many that were compassionate, who could see I was trying my best."
Four years ago, she and her son were flying home to Northern California from Philadelphia, Pennsylvania. At the airport, Matthew learned they would be flying on US Airways instead of their usual United Airlines.
This greatly distressed Matthew, who started hyperventilating.
Shumaker walked to the U.S. Airway ticket counter as Matthew rocked behind her nervously, mumbling, "United is friendly. US Air is not."
Under her breath, Shumaker whispered to the ticketing agent that Matthew had autism. Then in a louder voice, she said, "We'd just like to trade these in for United tickets," and winked.
The agent paused for a moment, glanced at Matthew and said: "Oh! Well, don't worry, because US Air and United are the same now...really. We merged. We're the same airline now."
Strangers in line chimed in. "That's right," said a man standing behind them in line. "And the skies are still friendly."
Hearing those reassurances, Matthew stopped hyperventilating and began breathing normally. Before leaving for the US Airways gate, Shumaker hugged the ticketing agent in gratitude. Read Shumaker's iReport submission.
"So many children are diagnosed, there is an awareness now," she said.
But it's still difficult to explain to others, Shumaker said, when Matthew comments at the supermarket that a person standing in front of them at the check-out line is too fat to buy ice cream.
We're not dead...
I know it has been a long time between posts. I don't think I have ever had a break that long. March was a completely overwhelming month. The school board stuff kicked my butt mentally, I had strep, an ear infection, and a sinus infection - all at the same time. Jimmy got a urinary tract infection and head lice. DH continues to have back problems from the car accident. Jacob is the only one to weather the storm. I apologize for my absence.
We had Jimmy's IEP meeting yesterday - I can't believe it was scheduled on April Fool's Day. I was able to maintain all of his services next year. Sadly, we are going forward without his teacher, who is moving back home to Pittsburgh. I would have been lost without Ms. Harris (who am I kidding - she's Allison to me) the past two years. As sad as I am to lose her, I am intrigued by what she is doing next - vocab rehab sounds like where she is going. Instead of working with kids now, she is going to help create a future for them as this Autism Generation ages into adulthood. Without vocational opportunities, when these kids age out of education at the age of 22 (under IDEA I believe), so many take up residence on the couch. Allison is going forward to create opportunity for children with special needs in adulthood. For that reason and so many others, she goes with my blessing, love, and respect. She has truly been amazing.
Today is World Autism Awareness Day. Of course, I will post a few stories, but I think it gets a month in the US. I am doing my best to honor it here in Manassas by having a fundraiser to support Matthew's Center for Visual Learning at Noodles & Co. on Liberia Ave. on April 28th from 5-9 p.m.. Noodles gives a sizable donation based on sales, so I would love to see everyone there.
I promise to get back on track with this. Now that the summer is becoming a light at the end of the tunnel that is the school year, I really hope to do some work on video with Jimmy and other fun blog stuff. Hey, I get Spring Break next week. I should be good for at least that much.
We had Jimmy's IEP meeting yesterday - I can't believe it was scheduled on April Fool's Day. I was able to maintain all of his services next year. Sadly, we are going forward without his teacher, who is moving back home to Pittsburgh. I would have been lost without Ms. Harris (who am I kidding - she's Allison to me) the past two years. As sad as I am to lose her, I am intrigued by what she is doing next - vocab rehab sounds like where she is going. Instead of working with kids now, she is going to help create a future for them as this Autism Generation ages into adulthood. Without vocational opportunities, when these kids age out of education at the age of 22 (under IDEA I believe), so many take up residence on the couch. Allison is going forward to create opportunity for children with special needs in adulthood. For that reason and so many others, she goes with my blessing, love, and respect. She has truly been amazing.
Today is World Autism Awareness Day. Of course, I will post a few stories, but I think it gets a month in the US. I am doing my best to honor it here in Manassas by having a fundraiser to support Matthew's Center for Visual Learning at Noodles & Co. on Liberia Ave. on April 28th from 5-9 p.m.. Noodles gives a sizable donation based on sales, so I would love to see everyone there.
I promise to get back on track with this. Now that the summer is becoming a light at the end of the tunnel that is the school year, I really hope to do some work on video with Jimmy and other fun blog stuff. Hey, I get Spring Break next week. I should be good for at least that much.
Subscribe to:
Posts (Atom)