More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.
Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.
"This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan, a researcher with the government's Maternal and Child Health Bureau.
The results are from a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness, requiring more extensive than usual medical care.
A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study authors said.
The study appears in December's Pediatrics, being released Monday.
Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.
Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected families face.
Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son.
She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said.
Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois.
Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids.
She is divorced — another common casualty, she said, of the challenges of caring for autistic kids.
Story link: http://www.iht.com/articles/ap/2008/12/01/america/MED-Autisms-Costs.php
-----------------------------------------------------------------------------------------------
For we that are parents of children with Austism, this story falls into the catagory of: 'about time others figured this out'. Since we have not had anyone come forward to help with the creation and financing of the AutismBites Foundation (see AutismBites website link for more info:
http://www.autismbites.com/foundation.html) we have come to the conclusion that we will have to do it by ourselves. The process and grants to families in need will unfortunately be much slower, my goal is to start helping families this Spring.
Dad
Showing posts with label AutismBites Foundation. Show all posts
Showing posts with label AutismBites Foundation. Show all posts
Wednesday, December 3, 2008
Saturday, October 4, 2008
Autism X 6, Why We Did It
I received a very sad email from a mother that has it as bad or worse then us in regards to the number and severity of her children's Autism. However she was angry that we are 'getting rich' from 'exploiting' our children. I hope that my response can help to further clarify who and what we are. Our goals and dreams we hope to accomplish by appearing in a documentary about Autism.
My response:
I'm sorry to have offended you, it sounds like you are in the same boat as us; or maybe worse. Your situation is one of the main reasons we decided to put our family 'out there' in the first place.
The average Joe out there has NO idea what it is like to raise children like we have. The medical bills, the special diets, various treatments and more. Sure some will judge and complain, but that is their problem not ours.
We'll continue to try and educate and increase the level of tolerance and acceptance toward our children. It's not much yet but we have been able to help raise nearly $25,000 for a number of charities that help Autistic families. (not for the AutismBites Foundation however) Many of the links on our website have benefited from us placing them on our site. That is our intention, to help others as well.
We don't have the pulling power of a Hollywood celebrity or have written a best-selling book. But we feel an obligation to let people know that there are many people that are having a VERY tough time raising Autistic children. Not just us or you.
We haven't been paid for any magazine, newspaper or TV interviews (that's a myth). It has made people aware of us and we've sold a number of t-shirts. But, 95% or more of the costs of those shirts goes to shipping and production for the website that makes them for us. And we're losing count of the number of free t-shirts that we've sent to families that have a difficult time affording them.
The film production company did pay us a 'location fee' to film us, and even though we appreciated it very much; it wasn't that much. We aren't rich now. The money is not rolling in like some seem to believe.
After trying to maintain a 9 to 5 job these past couple of years, I gave up. The workplaces just weren't able to have me take off for appointments, emergencies or sickness. I can understand that and harbor no hard feelings. But I still need to provide for my children. That is why I need to have a blog and website that may include some advertising, links to businesses or various offers.
I sent out our 'invitation' email to only those who kindly emailed us messages of hope and understanding. I'm sorry you got on the list by mistake. I'm sorry to have given the impression that we are doing this for money. I guess that people assume that when a sad tale is told that they are expecting a handout. We got a ton of emails from people that wanted a mailing address to send things to us. Others wanted to donate money, so our website manager put a PayPal button there. They feel good, we are very grateful and our children lack for a bit less. WIN-WIN-WIN
We aren't exploiting our children, we are showing the world how beautiful they are and how blessed we are. Our new business link on our home page has products that people buy every day. We aren't begging anyone to buy, but we hope that some will. It's my home business just like your doll hospital.
I'm sad to hear that you have no help, no respite, no breaks and no 'loot' rolling in. We have NO help, 4 hrs of respite for 2 children a week, NO breaks and NO loot rolling it. And that's OK for us too.
Sort of.
I want money to 'roll' in for my family. I want to take care of them and give them what they need and a few wants. I DO want money rolling in from MY efforts, the businesses I create and put together. I DO NOT want to barely 'get by' and barely make it each day. I want a better life for my children, they've already been given a hard road in life and they deserve better. And somehow, some way I'll work and scratch and find a way to do that for them. They are my children I love them and I don't think I need to accept a vow of poverty to be in the good graces of the rest of the world.
I wish you all the best and hope you find peace and blessings in your life.
John
My response:
I'm sorry to have offended you, it sounds like you are in the same boat as us; or maybe worse. Your situation is one of the main reasons we decided to put our family 'out there' in the first place.
The average Joe out there has NO idea what it is like to raise children like we have. The medical bills, the special diets, various treatments and more. Sure some will judge and complain, but that is their problem not ours.
We'll continue to try and educate and increase the level of tolerance and acceptance toward our children. It's not much yet but we have been able to help raise nearly $25,000 for a number of charities that help Autistic families. (not for the AutismBites Foundation however) Many of the links on our website have benefited from us placing them on our site. That is our intention, to help others as well.
We don't have the pulling power of a Hollywood celebrity or have written a best-selling book. But we feel an obligation to let people know that there are many people that are having a VERY tough time raising Autistic children. Not just us or you.
We haven't been paid for any magazine, newspaper or TV interviews (that's a myth). It has made people aware of us and we've sold a number of t-shirts. But, 95% or more of the costs of those shirts goes to shipping and production for the website that makes them for us. And we're losing count of the number of free t-shirts that we've sent to families that have a difficult time affording them.
The film production company did pay us a 'location fee' to film us, and even though we appreciated it very much; it wasn't that much. We aren't rich now. The money is not rolling in like some seem to believe.
After trying to maintain a 9 to 5 job these past couple of years, I gave up. The workplaces just weren't able to have me take off for appointments, emergencies or sickness. I can understand that and harbor no hard feelings. But I still need to provide for my children. That is why I need to have a blog and website that may include some advertising, links to businesses or various offers.
I sent out our 'invitation' email to only those who kindly emailed us messages of hope and understanding. I'm sorry you got on the list by mistake. I'm sorry to have given the impression that we are doing this for money. I guess that people assume that when a sad tale is told that they are expecting a handout. We got a ton of emails from people that wanted a mailing address to send things to us. Others wanted to donate money, so our website manager put a PayPal button there. They feel good, we are very grateful and our children lack for a bit less. WIN-WIN-WIN
We aren't exploiting our children, we are showing the world how beautiful they are and how blessed we are. Our new business link on our home page has products that people buy every day. We aren't begging anyone to buy, but we hope that some will. It's my home business just like your doll hospital.
I'm sad to hear that you have no help, no respite, no breaks and no 'loot' rolling in. We have NO help, 4 hrs of respite for 2 children a week, NO breaks and NO loot rolling it. And that's OK for us too.
Sort of.
I want money to 'roll' in for my family. I want to take care of them and give them what they need and a few wants. I DO want money rolling in from MY efforts, the businesses I create and put together. I DO NOT want to barely 'get by' and barely make it each day. I want a better life for my children, they've already been given a hard road in life and they deserve better. And somehow, some way I'll work and scratch and find a way to do that for them. They are my children I love them and I don't think I need to accept a vow of poverty to be in the good graces of the rest of the world.
I wish you all the best and hope you find peace and blessings in your life.
John
Sunday, September 28, 2008
A Story of Giving and Compassion
I received this story in an email to our autism_bites@yahoo.com account.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
I try not to be biased, but I had my doubts about hiring Stevie. His placement counselor assured me that he would be a good, reliable busboy. But I had never had a mentally handicapped employee and wasn't sure I wanted one. I wasn't sure how my customers would react to Stevie. He was short, a little dumpy with the smooth facial features and thick-tongued speech of Down’s Syndrome. I wasn't worried about most of my trucker customers because truckers don't generally care who buses tables as long as the meatloaf platter is good and the pies are homemade. The four-wheeler drivers were the ones who concerned me; the mouthy college kids traveling to school; the yuppie snobs who secretly polish their silverware with their napkins for fear of catching some dreaded "truck stop germ", the pairs of white-shirted business men on expense accounts who think every truck stop waitress wants to be flirted with. I knew those people would be uncomfortable around Stevie so I closely watched him for the first few weeks.
I shouldn't have worried. After the first week, Stevie had my staff wrapped around his stubby little finger, and within a month my truck regulars had adopted him as their official truck stop mascot. After that, I really didn't care what the rest of the customers thought of him. He was like a 21-year-old in blue jeans and Nike's, eager to laugh and eager to please, but fierce in his attention to his duties. Every salt and pepper shaker was exactly in its place, not a bread crumb or coffee spill was visible when Stevie got done with the table.
Our only problem was persuading him to wait to clean a table until after the customers were finished. He would hover in the background, shifting his weight from one foot to the other, scanning the dining room until a table was empty. Then he would scurry to the empty table and carefully bus dishes and glasses onto the cart and meticulously wipe the table up with a practiced flourish of his rag. If he thought a customer was watching, his brow would pucker with added concentration. He took pride in doing his job exactly right, and you had to love how hard he tried to please each and every person he met.
Over time, we learned that he lived with his mother, a widow who was disabled after repeated surgeries for cancer. They lived on their Social Security benefits in public housing two miles from the truck stop. Their social worker, who stopped to check on him every so often, admitted they had fallen between the cracks. Money was tight, and what I paid him was probably the difference between them being able to live together and Stevie being sent to a group home. That's why the restaurant was a gloomy place that morning last August, the first morning in three years that Stevie missed work.
He was at the Mayo Clinic in Rochester getting a new valve or something, put in his heart. His social worker said that people with Down’s Syndrome often have heart problems at an early age so this wasn't unexpected, and there was a good chance he would come through the surgery in good shape and be back at work in a few months.
A ripple of excitement ran through the staff later that morning when word came that he was out of surgery, in recovery, and doing fine. Frannie, the head waitress, let out a war hoop and did a little dance in the aisle when she heard the good news. Belle Ringer, one of our regular trucker customers, stared at the sight of this 50-year-old grandmother of four doing a victory shimmy beside his table. Frannie blushed, smoothed her apron and shot Belle Ringer a withering look.
He grinned. "OK, Frannie, what was that all about?" he asked.
"We just got word that Stevie is out of surgery and going to be okay."
"I was wondering where he was. I had a new joke to tell him. What was the surgery about?"
Frannie quickly told Belle Ringer and the other two drivers sitting at his booth about Stevie's surgery, then sighed: "Yeah, I'm glad he is going to be OK," she said. "But I don't know how he and his Mom are going to handle all the bills. From what I hear, they're barely getting by as it is." Belle Ringer nodded thoughtfully, and Frannie hurried off to wait on the rest of her tables.
Since I hadn't had time to round up a busboy to replace Stevie and really didn't want to replace him, the girls were busing their own tables that day until we decided what to do. After the morning rush, Frannie walked into my office. She had a couple of paper napkins in her hand and a funny look on her face.
"What's up?" I asked.
"I didn't get that table where Belle Ringer and his friends were sitting cleared off after they left, and Pony Pete and Tony Tipper were sitting there when I got back to clean it off," she said. "This was folded and tucked under a coffee cup." She handed the napkin to me, and three $20 bills fell onto my desk when I opened it. On the outside, in big, bold letters, was printed "Something For Stevie". Pony Pete asked me what that was all about," she said, "so I told him about Stevie and his Mom and everything, and Pete looked at Tony and Tony looked at Pete, and they ended up giving me this" She handed me another paper napkin that had "Something For Stevie" scrawled on its outside. Two $50 bills were tucked within its folds. Frannie looked at me with wet, shiny eyes, shook her head and said simply: "truckers."
That was three months ago. Today is Thanksgiving, the first day Stevie is supposed to be back to work. His placement worker said he's been counting the days until the doctor said he could work, and it didn't matter at all that it was a holiday. He called 10 times in the past week, making sure we knew he was coming, fearful that we had forgotten him or that his job was in jeopardy. I arranged to have his mother bring him to work. I then met them in the parking lot and invited them both to celebrate his day back. Stevie was thinner and paler, but couldn't stop grinning as he pushed through the doors and headed for the back room where his apron and busing cart were waiting.
"Hold up there, Stevie, not so fast," I said. I took him and his mother by their arms. "Work can wait for a minute. To celebrate you coming back, breakfast for you and your mother is on me!"
I led them toward a large corner booth at the rear of the room. I could feel and hear the rest of the staff following behind as we marched through the dining room. Glancing over my shoulder, I saw booth after booth of grinning truckers empty and join the procession. We stopped in front of the big table. Its surface was covered with coffee cups, saucers and dinner plates, all sitting slightly crooked on dozens of folded paper napkins.
"First thing you have to do, Stevie, is clean up this mess," I said. I tried to sound stern. Stevie looked at me, and then at his mother, then pulled out one of the napkins. It had "Something for Stevie" printed on the outside. As he picked it up, two $10 bills fell onto the table.
Stevie stared at the money, then at all the napkins peeking from beneath the tableware, each with his name printed or scrawled on it. I turned to his mother. "There's more than $10,000 in cash and checks on the table, all from truckers and trucking companies that heard about your problems. "Happy Thanksgiving."
Well, it got real noisy about that time, with everybody hollering and shouting, and there were a few tears, as well. But you know what's funny? While everybody else was busy shaking hands and hugging each other, Stevie, with a big, big smile on his face, was busy clearing all the cups and dishes from the table. Best worker I ever hired.
If you shed a tear, hug yourself, because you are a compassionate person.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
We’re not in as dire straits as this young man was, however, we continuously receive emails from ‘Parents of Autism’ that tell of stories similar to this one. Sure we’ve had a bit of struggles with our six and because of that we understand the need for the ‘AutismBites Foundation’ we have been attempting to create.
Please visit our website again, http://www.autismbites.com/. Read about what our hopes are for the Foundation on its page. Then if YOU are able, click the donate PayPal button. If you are not able, send the information to someone who may be able to help with a donation.
P.S. We've just started a family business where you will learn how to be rewarded for every online purchase you make:
https://www.marketamerica.com/6asdkids/index.cfm?action=main.wLogin
Thanks,
Dad
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
The Folded Napkin
I try not to be biased, but I had my doubts about hiring Stevie. His placement counselor assured me that he would be a good, reliable busboy. But I had never had a mentally handicapped employee and wasn't sure I wanted one. I wasn't sure how my customers would react to Stevie. He was short, a little dumpy with the smooth facial features and thick-tongued speech of Down’s Syndrome. I wasn't worried about most of my trucker customers because truckers don't generally care who buses tables as long as the meatloaf platter is good and the pies are homemade. The four-wheeler drivers were the ones who concerned me; the mouthy college kids traveling to school; the yuppie snobs who secretly polish their silverware with their napkins for fear of catching some dreaded "truck stop germ", the pairs of white-shirted business men on expense accounts who think every truck stop waitress wants to be flirted with. I knew those people would be uncomfortable around Stevie so I closely watched him for the first few weeks.
I shouldn't have worried. After the first week, Stevie had my staff wrapped around his stubby little finger, and within a month my truck regulars had adopted him as their official truck stop mascot. After that, I really didn't care what the rest of the customers thought of him. He was like a 21-year-old in blue jeans and Nike's, eager to laugh and eager to please, but fierce in his attention to his duties. Every salt and pepper shaker was exactly in its place, not a bread crumb or coffee spill was visible when Stevie got done with the table.
Our only problem was persuading him to wait to clean a table until after the customers were finished. He would hover in the background, shifting his weight from one foot to the other, scanning the dining room until a table was empty. Then he would scurry to the empty table and carefully bus dishes and glasses onto the cart and meticulously wipe the table up with a practiced flourish of his rag. If he thought a customer was watching, his brow would pucker with added concentration. He took pride in doing his job exactly right, and you had to love how hard he tried to please each and every person he met.
Over time, we learned that he lived with his mother, a widow who was disabled after repeated surgeries for cancer. They lived on their Social Security benefits in public housing two miles from the truck stop. Their social worker, who stopped to check on him every so often, admitted they had fallen between the cracks. Money was tight, and what I paid him was probably the difference between them being able to live together and Stevie being sent to a group home. That's why the restaurant was a gloomy place that morning last August, the first morning in three years that Stevie missed work.
He was at the Mayo Clinic in Rochester getting a new valve or something, put in his heart. His social worker said that people with Down’s Syndrome often have heart problems at an early age so this wasn't unexpected, and there was a good chance he would come through the surgery in good shape and be back at work in a few months.
A ripple of excitement ran through the staff later that morning when word came that he was out of surgery, in recovery, and doing fine. Frannie, the head waitress, let out a war hoop and did a little dance in the aisle when she heard the good news. Belle Ringer, one of our regular trucker customers, stared at the sight of this 50-year-old grandmother of four doing a victory shimmy beside his table. Frannie blushed, smoothed her apron and shot Belle Ringer a withering look.
He grinned. "OK, Frannie, what was that all about?" he asked.
"We just got word that Stevie is out of surgery and going to be okay."
"I was wondering where he was. I had a new joke to tell him. What was the surgery about?"
Frannie quickly told Belle Ringer and the other two drivers sitting at his booth about Stevie's surgery, then sighed: "Yeah, I'm glad he is going to be OK," she said. "But I don't know how he and his Mom are going to handle all the bills. From what I hear, they're barely getting by as it is." Belle Ringer nodded thoughtfully, and Frannie hurried off to wait on the rest of her tables.
Since I hadn't had time to round up a busboy to replace Stevie and really didn't want to replace him, the girls were busing their own tables that day until we decided what to do. After the morning rush, Frannie walked into my office. She had a couple of paper napkins in her hand and a funny look on her face.
"What's up?" I asked.
"I didn't get that table where Belle Ringer and his friends were sitting cleared off after they left, and Pony Pete and Tony Tipper were sitting there when I got back to clean it off," she said. "This was folded and tucked under a coffee cup." She handed the napkin to me, and three $20 bills fell onto my desk when I opened it. On the outside, in big, bold letters, was printed "Something For Stevie". Pony Pete asked me what that was all about," she said, "so I told him about Stevie and his Mom and everything, and Pete looked at Tony and Tony looked at Pete, and they ended up giving me this" She handed me another paper napkin that had "Something For Stevie" scrawled on its outside. Two $50 bills were tucked within its folds. Frannie looked at me with wet, shiny eyes, shook her head and said simply: "truckers."
That was three months ago. Today is Thanksgiving, the first day Stevie is supposed to be back to work. His placement worker said he's been counting the days until the doctor said he could work, and it didn't matter at all that it was a holiday. He called 10 times in the past week, making sure we knew he was coming, fearful that we had forgotten him or that his job was in jeopardy. I arranged to have his mother bring him to work. I then met them in the parking lot and invited them both to celebrate his day back. Stevie was thinner and paler, but couldn't stop grinning as he pushed through the doors and headed for the back room where his apron and busing cart were waiting.
"Hold up there, Stevie, not so fast," I said. I took him and his mother by their arms. "Work can wait for a minute. To celebrate you coming back, breakfast for you and your mother is on me!"
I led them toward a large corner booth at the rear of the room. I could feel and hear the rest of the staff following behind as we marched through the dining room. Glancing over my shoulder, I saw booth after booth of grinning truckers empty and join the procession. We stopped in front of the big table. Its surface was covered with coffee cups, saucers and dinner plates, all sitting slightly crooked on dozens of folded paper napkins.
"First thing you have to do, Stevie, is clean up this mess," I said. I tried to sound stern. Stevie looked at me, and then at his mother, then pulled out one of the napkins. It had "Something for Stevie" printed on the outside. As he picked it up, two $10 bills fell onto the table.
Stevie stared at the money, then at all the napkins peeking from beneath the tableware, each with his name printed or scrawled on it. I turned to his mother. "There's more than $10,000 in cash and checks on the table, all from truckers and trucking companies that heard about your problems. "Happy Thanksgiving."
Well, it got real noisy about that time, with everybody hollering and shouting, and there were a few tears, as well. But you know what's funny? While everybody else was busy shaking hands and hugging each other, Stevie, with a big, big smile on his face, was busy clearing all the cups and dishes from the table. Best worker I ever hired.
If you shed a tear, hug yourself, because you are a compassionate person.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
We’re not in as dire straits as this young man was, however, we continuously receive emails from ‘Parents of Autism’ that tell of stories similar to this one. Sure we’ve had a bit of struggles with our six and because of that we understand the need for the ‘AutismBites Foundation’ we have been attempting to create.
Please visit our website again, http://www.autismbites.com/. Read about what our hopes are for the Foundation on its page. Then if YOU are able, click the donate PayPal button. If you are not able, send the information to someone who may be able to help with a donation.
P.S. We've just started a family business where you will learn how to be rewarded for every online purchase you make:
https://www.marketamerica.com/6asdkids/index.cfm?action=main.wLogin
Thanks,
Dad
Wednesday, April 2, 2008
Mayor Daniel Snarr Meets With Dad
Mayor Snarr of Murray, Utah (the city we live in) and I got together to talk about Autism. One of the first questions he asked was: "How do you and your wife do it?" I said with loving each other, being friends, looking at the positive, humor and a whole lot of prayers.
I also wanted to let the Mayor know about the 'Walk Now For Autism' event sponsored by Autism Speaks that is being held in his city on May 3, 2008. (NOTE: if you could support our family team we'd be very thankful).
Mayor Snarr is a very friendly and, I believe, humble man. He asked many questions about the children and how they are doing. When he asked about their school I was surprised to find out that the school Emma and Nephi go to holds a favorite place in his heart. It is a tradition on Valentines Day that Mayor Snarr rides his Harley Davidson motorcycle down the hallways of their school. The children are very excited, he relates, when he stops at each classroom where they sit on the motorcycle and beep the horn.
I asked Emma if she remembers some guy riding down the hallways. She smiled really big, "Yeah, it's cool. One of my friends got to sit on it". "Do you remember who he was? I asked. "He's the mayor" "Does the sound of the motorcycle hurt your ears?" "No" she said, "I like loud sounds. I don't even hold my ears when the fire alarm goes off." I learned something new with that.
I also wanted to let the Mayor know why we are involved in our family mission of media exposure:
1) increase the awareness and understanding of Autism.
2) help people to be more tolerant with Autistic people (i.e. how our AutismBites t-shirts help us with this)
3) jump start our efforts to create our AutismBites Foundation. That goal being to help put funds directly into parents hands for whatever, without a lot of red tape and hoops to jump through.
Why all the pictures? If you don't know by now that I like to be a little goofy, you do now. Plus Mayor Snarr said these are the kind of poses he does all the time. I think he's a little goofy too.
Dad
FYI, we will be joining Jenny McCarthy on CNN's Larry King Live tonight at 7PM MDT. Be sure to watch.
Thursday, March 27, 2008
Where's My Lollipop?
It is good to have 'anonymous' commentors (UPDATE: I have since stopped these comments being allowed, see comment section) here so that those with hate or disdain that needs to get out, can feel better about themselves while hiding.
We are not hiding, we have put ourselves 'out there' for the public to thank or criticize. We knew the risks and have gained new friends and have also lost 'friends' and 'family' over our media exposure.
The AutismBites Foundation, we are attempting to get off the ground, is NOT just about us. It will be a real 501 (c)(3) non-profit corporation. The Autism research money, as quoted here below, is needed. But, whether some believe it our not, family's ARE DEVASTATED FINANCIALLY BY AUTISM!
We get email everyday from families struggling with how to afford treatments, education and just basic needs. Why can't families have donated money put directly into THEIR hands. Do they not know their own needs best? President Bush and the Congress have agreed that Americans need money to be put directly into THEIR hands. Are parents of Autistic children less deserving?
We are not making any money from the AutismBites Foundation. If that changes we'll let you know. We do make some profits from the sale of the AutismBites t-shirts however. Does GM make profits on cars? Does McDonald's make profits from selling hamburgers? Does Apple ipods make money for them? Does Microsoft make a profit on sales? Sure they do. Do those companies also make donations to worthy causes? Yes.
We are no different, so far our scale is much smaller though.
So if you don't like what you see here and that it's some sort of injustice to society, pandering or lazy parents looking for a hand out... go away. We are not going to listen to whining about "it's all about the money" or "where do you get those figures" (from Autism Speaks facts of Autism sheet) or "Stop begging people for money"... anymore. It's just not true.
Take your hate and obvious ignorant comments and tell them to someone who cares. Parents of Autistic children have enough stress in their lives then having to deal with the likes of you.
I shall now return to my "life of sunshine and lollipops".
Dad
We are not hiding, we have put ourselves 'out there' for the public to thank or criticize. We knew the risks and have gained new friends and have also lost 'friends' and 'family' over our media exposure.
The AutismBites Foundation, we are attempting to get off the ground, is NOT just about us. It will be a real 501 (c)(3) non-profit corporation. The Autism research money, as quoted here below, is needed. But, whether some believe it our not, family's ARE DEVASTATED FINANCIALLY BY AUTISM!
We get email everyday from families struggling with how to afford treatments, education and just basic needs. Why can't families have donated money put directly into THEIR hands. Do they not know their own needs best? President Bush and the Congress have agreed that Americans need money to be put directly into THEIR hands. Are parents of Autistic children less deserving?
We are not making any money from the AutismBites Foundation. If that changes we'll let you know. We do make some profits from the sale of the AutismBites t-shirts however. Does GM make profits on cars? Does McDonald's make profits from selling hamburgers? Does Apple ipods make money for them? Does Microsoft make a profit on sales? Sure they do. Do those companies also make donations to worthy causes? Yes.
We are no different, so far our scale is much smaller though.
So if you don't like what you see here and that it's some sort of injustice to society, pandering or lazy parents looking for a hand out... go away. We are not going to listen to whining about "it's all about the money" or "where do you get those figures" (from Autism Speaks facts of Autism sheet) or "Stop begging people for money"... anymore. It's just not true.
Take your hate and obvious ignorant comments and tell them to someone who cares. Parents of Autistic children have enough stress in their lives then having to deal with the likes of you.
I shall now return to my "life of sunshine and lollipops".
Dad
Friday, March 21, 2008
Autism Funding Facts
Incidence vs. Private Funding
- Leukemia: affects 1 in 25,000 / Funding: $310 Million
- Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 Million
- Pediatric Aids: Affects 1 in 8,000 / Funding: $394 Million
- Juvenile Diabetes: Affects 1 in 500 / Funding $130 Million
- Autism: Affects 1 in 150 / Funding: Approx. $116 Million
These figures are for research mainly, I can find NO numbers for helping the Mom's and Dad's that are being financially devastated every day by Autism.
Go back to our main website http://www.autismbites.com/ and click the AutismBites Foundation page. We are doing what we can to put into place something that could alleviate some of the financial stress on the parents. If you can do nothing else, please buy one of our AutismBites t-shirts and give it to a family. They'll have a shirt that will reduce the 'looks and comments' when out in public. And we are setting aside a large portion of our proceeds from the sales to get the AutismBites Foundation and parent support groups up and running.
If you know a good 'non-profits' lawyer that can do some pro-bono work... send them our way. Thanks!
Dad
- Leukemia: affects 1 in 25,000 / Funding: $310 Million
- Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 Million
- Pediatric Aids: Affects 1 in 8,000 / Funding: $394 Million
- Juvenile Diabetes: Affects 1 in 500 / Funding $130 Million
- Autism: Affects 1 in 150 / Funding: Approx. $116 Million
These figures are for research mainly, I can find NO numbers for helping the Mom's and Dad's that are being financially devastated every day by Autism.
Go back to our main website http://www.autismbites.com/ and click the AutismBites Foundation page. We are doing what we can to put into place something that could alleviate some of the financial stress on the parents. If you can do nothing else, please buy one of our AutismBites t-shirts and give it to a family. They'll have a shirt that will reduce the 'looks and comments' when out in public. And we are setting aside a large portion of our proceeds from the sales to get the AutismBites Foundation and parent support groups up and running.
If you know a good 'non-profits' lawyer that can do some pro-bono work... send them our way. Thanks!
Dad
Saturday, February 9, 2008
AutismBites Foundation and the Needs of Families
Thanks again for all of the great comments that we've received the past few days!
Reading through our emails, the comments here and the poll to the right that is still on going, it is obvious that there is a VERY large need out there for parents of Autistic children. Autistic parents, see it and KNOW it on a daily basis. But, for Autistic parents to finance ourselves with foundations to help... well that's a bit tough.
Autistic parents are already paying for their own children by getting a second mortgage or going into debt. Sadly, many are not able to do much for their children because Autistic parents don't have the money and the various ASSISTANCE PROGRAMS are not enough. Autistic parents of course have the compassion and understanding of all the challenges that Autism brings, we live it every day.
We need to find people of means (money) that can catch the vision of how financially devastating it is for Autistic parents... And to donate generously to the AutismBites Foundation. That is one of the primary reasons we've felt as a couple that we need to tell our story. We thought that the usual situation of ours would get the attention of the media. Its been pretty good so far, but we do hope for the attention to grow larger and larger.
And its not ALL about us, really!
More attention on Autism hopefully will bring the funding that is so very lacking in many different ways. If Autistic parents can get a full 8 hours of ABA for their children every day. If parents had the financing for diets, intervention and treatments. If Autistic parents had the funds to make their homes safe for their children. IF...IF...IF... then maybe, just maybe... some serious progress can be made.
My goals for my children? Have them get to the point where they can be completely independent and provide for themselves when they reach adult age. We cannot live forever to take care of them.
We didn't ask for this. If our children were six "normal" children we would take care of their needs just fine. The stresses, needs and obligations that I have had to handle as the Dad, has lost me a number of jobs and the provided insurance. I'd imagine that other fathers have faced similar challenges. Tell me if I'm wrong here. Has other Moms been depressed and wonder if they can make it through the day?
So... if Autistic parents could get the support and understanding of their neighborhoods, schools, communities, state and national governments and leaders, friends, the rich and famous AND even their families. It wouldn't be so hard! Most of these children would improve. For those detractors with their calculators in hand, it will cost pennies now OR dollars later. Which would you prefer?
Dad
Reading through our emails, the comments here and the poll to the right that is still on going, it is obvious that there is a VERY large need out there for parents of Autistic children. Autistic parents, see it and KNOW it on a daily basis. But, for Autistic parents to finance ourselves with foundations to help... well that's a bit tough.
Autistic parents are already paying for their own children by getting a second mortgage or going into debt. Sadly, many are not able to do much for their children because Autistic parents don't have the money and the various ASSISTANCE PROGRAMS are not enough. Autistic parents of course have the compassion and understanding of all the challenges that Autism brings, we live it every day.
We need to find people of means (money) that can catch the vision of how financially devastating it is for Autistic parents... And to donate generously to the AutismBites Foundation. That is one of the primary reasons we've felt as a couple that we need to tell our story. We thought that the usual situation of ours would get the attention of the media. Its been pretty good so far, but we do hope for the attention to grow larger and larger.
And its not ALL about us, really!
More attention on Autism hopefully will bring the funding that is so very lacking in many different ways. If Autistic parents can get a full 8 hours of ABA for their children every day. If parents had the financing for diets, intervention and treatments. If Autistic parents had the funds to make their homes safe for their children. IF...IF...IF... then maybe, just maybe... some serious progress can be made.
My goals for my children? Have them get to the point where they can be completely independent and provide for themselves when they reach adult age. We cannot live forever to take care of them.
We didn't ask for this. If our children were six "normal" children we would take care of their needs just fine. The stresses, needs and obligations that I have had to handle as the Dad, has lost me a number of jobs and the provided insurance. I'd imagine that other fathers have faced similar challenges. Tell me if I'm wrong here. Has other Moms been depressed and wonder if they can make it through the day?
So... if Autistic parents could get the support and understanding of their neighborhoods, schools, communities, state and national governments and leaders, friends, the rich and famous AND even their families. It wouldn't be so hard! Most of these children would improve. For those detractors with their calculators in hand, it will cost pennies now OR dollars later. Which would you prefer?
Dad
Wednesday, February 6, 2008
Good Morning America, Autism, Mormons and Just Plain Mean People
We knew that putting ourselves out there for the world to see today would have its good and bad points. That's OK, we're tough, we DO have SIX Autistic children we deal with EVERY day. We can handle 'just plain mean people' that have no idea as to what they are talking about and feel they must offer us advice.
When you've gone though the heart-wrenching discoveries, over two years, of finding out that one by one each child has some level of Autism. Then trying to find out what exactly Autism is. Is there someone... anyone that we can turn to, who has some answers. Trying to keep a job when you have to help you wife who has fibromyalgia and NEEDS at least two naps a day, then getting calls from school that your kids are having yet another meltdown in class. Then start to get some help from the state only to have one of those workers report a conversation. Those comments of frustration get your children removed from your home by the state. Doing EVERYTHING the judge says to get the children back. Two weeks without your children feeling like 2 years. Coming to realize that the state being involved in your life will actually get services and much quicker then usual. Then after 11 months to finally be free from the judicial system and feel human again.
Walk in our shoes for a week and most of you would have either lost your mind, be getting a divorce or maybe worse. We have 3 main reasons to get the word out about our family.
1) increase the awareness and understanding of Autism.
2) from our example (we know we're not perfect) that it can give hope to other parents struggling with their marriage and children.
3) jump start our efforts to create our AutismBites Foundation. The goal is to help put funds directly into parents hands for whatever, without a lot of red tape and hoops to jump through.
There have been many assumptions about who and what we are that have been posted in the comments of the GMA website, I'd like to address some of those. Some are just plain ignorant and stupid, I'll skip those considering the source.
"After the first few clearly had delays, wouldn't one assume the best decision for the family would be to stop reproducing?" "Six! What were they thinking?" "You've had 3 children with developmental problems and yet you KEEP HAVING BABIES. BRILLANT!"
--- ALL the children were born BEFORE we found out about the Autism. Besides that we prayed to know how many children to have. Until Mary, number six, our answer was we were not a complete family. GOD knew that these special children needed parents that would care for them. We were the ones he's trusted, not to people like these who would have aborted or abandoned them. They are our blessings from GOD.
"I don't feel sorry for the parents, I feel sorry for the children whose parents are idiots. Gambling on having normal children happens every day. Making more when you know what will happen is nothing more than Munchosen (its spelled Munchausen, spell checkers work wonders!) syndrome...I hope these parents get neutered." --- OK, that was mean. Uh, let's see... what can I say? I hope you get a lobotomy, soon!
"My argument is that yes this family has a problem that they don't care if they burden the world with their self inflicted problem." --- We DO care, see the 3 reasons above.
"PLEASE LET ME KNOW WHAT AGE YOUR KIDS WERE WHEN YOU STARTED NOTICING SIGNS OF AUTISM IN EACH CHILD." --- Bobby (8th grade)-halfway through 5th grade the teacher called us in for a conference, suspected mild Aspergers, his diagnoses-Oct 2006. Emma (9) and Nephi (8)-kindergarten and 1st grade, just really rambunctious, their diagnoses-Oct 2006. Sarah (6) pre-school teachers felt she was Autistic at 3 1/2, diagnoses-Nov 2006. Ammon (4) after sister Sarah's pre-school teacher's observations we were concerned as he acted a lot like Sarah, got an appointment, diagnoses-May 2006. Mary (3) thought she was the only one that didn't have it, PDD-NOS diagnoses-Dec 2006.
"Even professional educators didn't didn't catch the oldest child's autism until he was 11 years old. If there was a family that was prone to childhood diabetes and they didn't realize it until their oldest was 11, you wouldn't be exhibiting your stupidity by blaming the parents who are working at a tougher job than you'll ever face with more compassion and intelligence than you'll ever have. The morons here are the ones who can't get past their own prejudiced opinions." --- Very well said!!
"The earth's population is a big factor in today's environmental crisis. These are ignorant, irresponsible adults who have created a problem for themselves and all of us." --- What a bunch of liberal crapola, where is all the compassion for the underprivileged you spew.
"Early intervention is key for an autistic child to meet their full potential. Many can live independently as adults if they receive treatment. We as a society will pay one way or another. I would rather pay through tax dollars for early intervention therapies and treatments so they have a chance to grow up and live independently, instead of long-term adult living care also paid by tax dollars." --- Another, VERY well said!
"Don't let them be "typecast" into total isolation in schools" --- Sarah goes to an Autism school in the morning and regular kindergarten in the afternoons. We'll mainstream them as much as possible as long as they are getting an education they need and not just supervision.
"I can tell you that it was a big reason for why I am not as judgemental and more accepting of those not as perfect as some of apparently think you are, especially about something of which you know nothing." --- Ditto!
"my first question is what were the parents eating, their diets? are they loaded with hydrogenated oils, processe(d) foods? are they living near a toxic dump?" --- We grew up in the suburbs of Minneapolis, MN, going to the state fair and having cheese curds and things on a stick.
"I'm sorry but I don't see anywhere in the article that the family is wanting you to feel sorry for them. They said they are blessed. Which means they are happy. So quit with all the judgemental comments. It's just displaying what a pathetic, mean and jealous people you are." --- Call this one another DITTO!
"I think they should both be sterilized." --- After number six Robin's tubes were tied. This was still BEFORE we knew any had Autism.
"If they were a normal family, outside of Utah, they would only have one or two autistic children." "... they're from Utah. They had to keep having children to please the mormon church." "Raise your hand if you knew they were Utah mormons by the second sentence of the article. They had to keep having children to please their church."
--- John is from California, Robin is from Minnesota. The first 4 children were born in Minnesota (blows that prejudice theory out of the water), the last two were born in Utah (a great place to raise a family, you guys stay out). MANY, MANY 'mormon' families have a couple of kids, they are not 'in trouble' and feel the 'displeasure' from our church. We are encouraged, but not commanded to have children. It is for each couple to seek their Heaven Father's guidance as to what their family is to be. We did and six was what we have, the Autism challenge came later.
Well, I could go on and on but this gets across our main points. Someone else said we are seeking help, donations, look at us, poor me, blah, blah, blah (so nice to have my own blog and say what I want!). When the People magazine article came out people emailed us asking how to send something. My sister-in-law/webmaster suggested that we put up a 'PayPal' donation box. There is a choice for either our family or the AutismBites Foundation we are starting. One thing I had hoped they would not put on the editing floor was when I said, "We're not begging for help here or seeking money. If we can be some portion of inspiration to other Autistic parents, great.
If you don't like our t-shirts that help deal with the public, fine don't buy one. Don't like our website (still a work in progress) or us, go away.
Life is choices, choose to like us and come back to this blog and participate with us in our journey on this earth. If you are mean spirited and your life stinks and you want others to feel as miserable as you... don't come back. Bother someone else. Life is too short to stress over things you cannot change or disagree with.
But, to you who have discovered our family and take encouragement or hope from our experiences... come back often. Comment often and let us see if we can all make this world a better place.
Dad
Thanks for your comments and support: parkersmommy007, lilspos2, loveeq2u, JoeliMcC, clbwebb, moose809, KRHSCN, floweringangel, michaelr02, ChristineCade, charity23us, eowyn_of_ithilien, Debra S, nancyroop, mapicepla, HappyTeacher05, Lanie Rae, lindalaytonsmith, HazelEyesLookinAtYou, bobandmoni, kada22105, WebNewsReader, momofautisticchildren23, sassymama1973, if I missed you we love you too!
When you've gone though the heart-wrenching discoveries, over two years, of finding out that one by one each child has some level of Autism. Then trying to find out what exactly Autism is. Is there someone... anyone that we can turn to, who has some answers. Trying to keep a job when you have to help you wife who has fibromyalgia and NEEDS at least two naps a day, then getting calls from school that your kids are having yet another meltdown in class. Then start to get some help from the state only to have one of those workers report a conversation. Those comments of frustration get your children removed from your home by the state. Doing EVERYTHING the judge says to get the children back. Two weeks without your children feeling like 2 years. Coming to realize that the state being involved in your life will actually get services and much quicker then usual. Then after 11 months to finally be free from the judicial system and feel human again.
Walk in our shoes for a week and most of you would have either lost your mind, be getting a divorce or maybe worse. We have 3 main reasons to get the word out about our family.
1) increase the awareness and understanding of Autism.
2) from our example (we know we're not perfect) that it can give hope to other parents struggling with their marriage and children.
3) jump start our efforts to create our AutismBites Foundation. The goal is to help put funds directly into parents hands for whatever, without a lot of red tape and hoops to jump through.
There have been many assumptions about who and what we are that have been posted in the comments of the GMA website, I'd like to address some of those. Some are just plain ignorant and stupid, I'll skip those considering the source.
"After the first few clearly had delays, wouldn't one assume the best decision for the family would be to stop reproducing?" "Six! What were they thinking?" "You've had 3 children with developmental problems and yet you KEEP HAVING BABIES. BRILLANT!"
--- ALL the children were born BEFORE we found out about the Autism. Besides that we prayed to know how many children to have. Until Mary, number six, our answer was we were not a complete family. GOD knew that these special children needed parents that would care for them. We were the ones he's trusted, not to people like these who would have aborted or abandoned them. They are our blessings from GOD.
"I don't feel sorry for the parents, I feel sorry for the children whose parents are idiots. Gambling on having normal children happens every day. Making more when you know what will happen is nothing more than Munchosen (its spelled Munchausen, spell checkers work wonders!) syndrome...I hope these parents get neutered." --- OK, that was mean. Uh, let's see... what can I say? I hope you get a lobotomy, soon!
"My argument is that yes this family has a problem that they don't care if they burden the world with their self inflicted problem." --- We DO care, see the 3 reasons above.
"PLEASE LET ME KNOW WHAT AGE YOUR KIDS WERE WHEN YOU STARTED NOTICING SIGNS OF AUTISM IN EACH CHILD." --- Bobby (8th grade)-halfway through 5th grade the teacher called us in for a conference, suspected mild Aspergers, his diagnoses-Oct 2006. Emma (9) and Nephi (8)-kindergarten and 1st grade, just really rambunctious, their diagnoses-Oct 2006. Sarah (6) pre-school teachers felt she was Autistic at 3 1/2, diagnoses-Nov 2006. Ammon (4) after sister Sarah's pre-school teacher's observations we were concerned as he acted a lot like Sarah, got an appointment, diagnoses-May 2006. Mary (3) thought she was the only one that didn't have it, PDD-NOS diagnoses-Dec 2006.
"Even professional educators didn't didn't catch the oldest child's autism until he was 11 years old. If there was a family that was prone to childhood diabetes and they didn't realize it until their oldest was 11, you wouldn't be exhibiting your stupidity by blaming the parents who are working at a tougher job than you'll ever face with more compassion and intelligence than you'll ever have. The morons here are the ones who can't get past their own prejudiced opinions." --- Very well said!!
"The earth's population is a big factor in today's environmental crisis. These are ignorant, irresponsible adults who have created a problem for themselves and all of us." --- What a bunch of liberal crapola, where is all the compassion for the underprivileged you spew.
"Early intervention is key for an autistic child to meet their full potential. Many can live independently as adults if they receive treatment. We as a society will pay one way or another. I would rather pay through tax dollars for early intervention therapies and treatments so they have a chance to grow up and live independently, instead of long-term adult living care also paid by tax dollars." --- Another, VERY well said!
"Don't let them be "typecast" into total isolation in schools" --- Sarah goes to an Autism school in the morning and regular kindergarten in the afternoons. We'll mainstream them as much as possible as long as they are getting an education they need and not just supervision.
"I can tell you that it was a big reason for why I am not as judgemental and more accepting of those not as perfect as some of apparently think you are, especially about something of which you know nothing." --- Ditto!
"my first question is what were the parents eating, their diets? are they loaded with hydrogenated oils, processe(d) foods? are they living near a toxic dump?" --- We grew up in the suburbs of Minneapolis, MN, going to the state fair and having cheese curds and things on a stick.
"I'm sorry but I don't see anywhere in the article that the family is wanting you to feel sorry for them. They said they are blessed. Which means they are happy. So quit with all the judgemental comments. It's just displaying what a pathetic, mean and jealous people you are." --- Call this one another DITTO!
"I think they should both be sterilized." --- After number six Robin's tubes were tied. This was still BEFORE we knew any had Autism.
"If they were a normal family, outside of Utah, they would only have one or two autistic children." "... they're from Utah. They had to keep having children to please the mormon church." "Raise your hand if you knew they were Utah mormons by the second sentence of the article. They had to keep having children to please their church."
--- John is from California, Robin is from Minnesota. The first 4 children were born in Minnesota (blows that prejudice theory out of the water), the last two were born in Utah (a great place to raise a family, you guys stay out). MANY, MANY 'mormon' families have a couple of kids, they are not 'in trouble' and feel the 'displeasure' from our church. We are encouraged, but not commanded to have children. It is for each couple to seek their Heaven Father's guidance as to what their family is to be. We did and six was what we have, the Autism challenge came later.
Well, I could go on and on but this gets across our main points. Someone else said we are seeking help, donations, look at us, poor me, blah, blah, blah (so nice to have my own blog and say what I want!). When the People magazine article came out people emailed us asking how to send something. My sister-in-law/webmaster suggested that we put up a 'PayPal' donation box. There is a choice for either our family or the AutismBites Foundation we are starting. One thing I had hoped they would not put on the editing floor was when I said, "We're not begging for help here or seeking money. If we can be some portion of inspiration to other Autistic parents, great.
If you don't like our t-shirts that help deal with the public, fine don't buy one. Don't like our website (still a work in progress) or us, go away.
Life is choices, choose to like us and come back to this blog and participate with us in our journey on this earth. If you are mean spirited and your life stinks and you want others to feel as miserable as you... don't come back. Bother someone else. Life is too short to stress over things you cannot change or disagree with.
But, to you who have discovered our family and take encouragement or hope from our experiences... come back often. Comment often and let us see if we can all make this world a better place.
Dad
Thanks for your comments and support: parkersmommy007, lilspos2, loveeq2u, JoeliMcC, clbwebb, moose809, KRHSCN, floweringangel, michaelr02, ChristineCade, charity23us, eowyn_of_ithilien, Debra S, nancyroop, mapicepla, HappyTeacher05, Lanie Rae, lindalaytonsmith, HazelEyesLookinAtYou, bobandmoni, kada22105, WebNewsReader, momofautisticchildren23, sassymama1973, if I missed you we love you too!
Thursday, January 31, 2008
One BUSY And Very Crazy Week
In the last week our People magazine article came out. A camera crew from 'Good Morning America' was here almost the whole day on Wednesday. The day before I was making calls to coordinate them going to Emma and Nephi's elementary school and talking to one of our Dr's at the Autism genetic study we've been involved in the past 10 months. We'll know tomorrow when the show will air next week, could be Monday or Wednesday--stay tuned here!
At last count, hold on a minute... let me check... we've had 96 individual emails, 30 blog comments, other Autistic parents have purchased 217 of our 'Autism t-shirts' (that's twice what we've had since we put them online last spring), on this blog people have looked at my profile 293 times and Mom's has been checked 454 times.
Most of the family has been sick with a lingering cold. Mary threw up two nights ago, I took Sarah to the Dr on Tuesday, Emma barfed at school Tuesday, Robin's voice will sound much lower and hoarse during the 'Good Morning America' interview, Sarah made it back to school today after a week and I had to go to Ammon's school today to take him home, because his nose started running like a faucet.
We got info on a different school that Sarah could attend since she will not be able to go to her 'Autism only' school here since I missed getting in the paperwork on time and the school only has half as many openings as Autistic children that need to get in.
We've now received calls from 3 different daytime shows that are talking with us about appearing in the near future. They all wish to remain anonymous (so don't ask) and we are determining which one will give us the most time and best exposure. Sure it's our 15 minutes of fame, but the main reason we decided to start all this about a year ago is threefold:
1) We want to educate this country about Autism, its ups and downs for the families and Mom's and Dad's and other general knowledge.
2) Increase the tolerance for Autism, where people will not assume someone is a bad parent just because their child(ren) are acting up. And especially cause them to pause before making any uninformed or ignorant comments.
3) Make the world aware that Autism is financially devastating for families. Find ways to have needed funds get into the parents hands for what they feel is best for their children. Be it treatments, interventions, diets or home needs. Our poll to the right shows most of the visitors here agree. Money spent now will decrease the money needed and the 'burden' on society required later when Mom and Dad are no longer there.
Then there was today. I was at Mary and Sarah's school to talk with their teacher about how they are doing. Mary, 3, (PDD-NOS) is doing pretty good and is at the worse just a year or so 'delayed'. Sarah, 6, (classic Autism) however worries us, her average 'age' is from 6 to 18 months. Many times she's look at us and get upset like she's trying to communicate and just can't. Like she's trying to get herself out and can't find the way. It's so hard and sad.
At last count, hold on a minute... let me check... we've had 96 individual emails, 30 blog comments, other Autistic parents have purchased 217 of our 'Autism t-shirts' (that's twice what we've had since we put them online last spring), on this blog people have looked at my profile 293 times and Mom's has been checked 454 times.
Most of the family has been sick with a lingering cold. Mary threw up two nights ago, I took Sarah to the Dr on Tuesday, Emma barfed at school Tuesday, Robin's voice will sound much lower and hoarse during the 'Good Morning America' interview, Sarah made it back to school today after a week and I had to go to Ammon's school today to take him home, because his nose started running like a faucet.
We got info on a different school that Sarah could attend since she will not be able to go to her 'Autism only' school here since I missed getting in the paperwork on time and the school only has half as many openings as Autistic children that need to get in.
We've now received calls from 3 different daytime shows that are talking with us about appearing in the near future. They all wish to remain anonymous (so don't ask) and we are determining which one will give us the most time and best exposure. Sure it's our 15 minutes of fame, but the main reason we decided to start all this about a year ago is threefold:
1) We want to educate this country about Autism, its ups and downs for the families and Mom's and Dad's and other general knowledge.
2) Increase the tolerance for Autism, where people will not assume someone is a bad parent just because their child(ren) are acting up. And especially cause them to pause before making any uninformed or ignorant comments.
3) Make the world aware that Autism is financially devastating for families. Find ways to have needed funds get into the parents hands for what they feel is best for their children. Be it treatments, interventions, diets or home needs. Our poll to the right shows most of the visitors here agree. Money spent now will decrease the money needed and the 'burden' on society required later when Mom and Dad are no longer there.
Then there was today. I was at Mary and Sarah's school to talk with their teacher about how they are doing. Mary, 3, (PDD-NOS) is doing pretty good and is at the worse just a year or so 'delayed'. Sarah, 6, (classic Autism) however worries us, her average 'age' is from 6 to 18 months. Many times she's look at us and get upset like she's trying to communicate and just can't. Like she's trying to get herself out and can't find the way. It's so hard and sad.
At two o'clock the Autism genetic study worker from the University of Utah came by to get blood samples from Mary. Yes, Mary. I was very concerned how she would react, it was her first needle poke. I held her in the recliner, Bobby held her arm steady and the worker put on the big rubber band thing. The whole time she was watching the whole thing and smiling brightly. We talked to her gently and then it came time for the stick... nothing. She continued to smile and watched as he took six small vials of blood. "Look at the little blue butterfly on your arm Mary", I told her. It must of helped that she has seen this worker come to our house many times over the months AND his technique was perfection. Took it out, put the stretchy bandage on she wanted a bottle and she was on her way. To say the least I was quite surprised. When we did Ammon last year it took THREE adults to hold him down.
Our Schwanns delivery driver, Mike, came by about 4. This is one of the prizes we won when Robin won the 'Busy Mom' contest last year. Then Robin went to Cub Scouts for the running of the Pinewood Derby.
To top off the day, the three youngest got their SSI payments shorted AGAIN, second month in a row. I've written and left phone messages. Guess I'll have to go in and see if I can get things straighten out.
Here are some of the comments on emails sent to us that touched our hearts.
"...I love your tee shirts...when ricky was little his actions drew a lot of attention...you know what i mean.We could have used one of those shirts!..."
"...The "gentleman" said "Some people need to learn to control their children." At that point I turn(ed) politely to him and replied, "He is Autistic." He then said (rudely), "How was I supposed to know that? It's not like he's wearing a sign..."
"...You both are truly a blessing from God to both have bared these children and raise them in such an amazing and loving way ! God Bless you Both... God Bless you ALL !!"
"...Please know that just by word of mouth about the internet and websites I am for sure that your foundation will get off on the right foot!! We all need some support from some where..."
"...I cried as I read your story. Your family is beautiful!"
"...I am going to put the photo of John hugging Ammon up in my kitchen so I can see it everyday..."
"...I have read the article written in the People magazine, and I hope it will show some in light on people who do not understand the many forms of Autism."
"...I read and re-read and re-re-read the article in People magazine and the more I read, the more awe-struck I became. You and your family are truly the example of dedication, love and preseverance. Your strength and outlook on life amaze and inspire me..."
To Emma: "...You are a very fine artist! We would like to buy a piece of your art for my room to add to my collection. Would you consider selling us a piece?" (Emma says yes)
"...I will be watching you site and hope the non-profit gets started--we all need it..."
"...Your article was reassuring because it reminded us we aren't alone out there..."
"...Like your kids, our Peter has no friends...and thank goodness he has his siblings. Both my husband and I have felt so much despair in our lives, and thank goodness we have each other..."
"...We read the article in People magazine and my mom started crying because she thought having one autistic son was difficult. My mom has been deppressed about our situation lately but now you guys have inspired us to look at the brighter view. thank you!"
Our thanks to all, now do keep those cards and letters coming!
Dad
Our Schwanns delivery driver, Mike, came by about 4. This is one of the prizes we won when Robin won the 'Busy Mom' contest last year. Then Robin went to Cub Scouts for the running of the Pinewood Derby.
To top off the day, the three youngest got their SSI payments shorted AGAIN, second month in a row. I've written and left phone messages. Guess I'll have to go in and see if I can get things straighten out.
Here are some of the comments on emails sent to us that touched our hearts.
"...I love your tee shirts...when ricky was little his actions drew a lot of attention...you know what i mean.We could have used one of those shirts!..."
"...The "gentleman" said "Some people need to learn to control their children." At that point I turn(ed) politely to him and replied, "He is Autistic." He then said (rudely), "How was I supposed to know that? It's not like he's wearing a sign..."
"...You both are truly a blessing from God to both have bared these children and raise them in such an amazing and loving way ! God Bless you Both... God Bless you ALL !!"
"...Please know that just by word of mouth about the internet and websites I am for sure that your foundation will get off on the right foot!! We all need some support from some where..."
"...I cried as I read your story. Your family is beautiful!"
"...I am going to put the photo of John hugging Ammon up in my kitchen so I can see it everyday..."
"...I have read the article written in the People magazine, and I hope it will show some in light on people who do not understand the many forms of Autism."
"...I read and re-read and re-re-read the article in People magazine and the more I read, the more awe-struck I became. You and your family are truly the example of dedication, love and preseverance. Your strength and outlook on life amaze and inspire me..."
To Emma: "...You are a very fine artist! We would like to buy a piece of your art for my room to add to my collection. Would you consider selling us a piece?" (Emma says yes)
"...I will be watching you site and hope the non-profit gets started--we all need it..."
"...Your article was reassuring because it reminded us we aren't alone out there..."
"...Like your kids, our Peter has no friends...and thank goodness he has his siblings. Both my husband and I have felt so much despair in our lives, and thank goodness we have each other..."
"...We read the article in People magazine and my mom started crying because she thought having one autistic son was difficult. My mom has been deppressed about our situation lately but now you guys have inspired us to look at the brighter view. thank you!"
Our thanks to all, now do keep those cards and letters coming!
Dad
Friday, January 25, 2008
Kirton Family Featured In People Magazine Article
Today our long expected article about our family has hit the news stands. Sharon Cotliar, our reporter, originally called me 2-3 days after our local paper had an article about us. That was in June 2007. She visited with our family for 3 days the week of July the 10th.
In between then and December, when our photographer Ken stayed for 3 days, she would check in with us and assure us that even with various delays they were still very interested in our story.
We are VERY happy with the story and pictures. Sharon has captured us and our situation to perfection. Because of her limited space she cannot go into as many details as she would have liked, soooooooo I thought I fill in a bit more here.
First, any questions you have, please put them here. I will be compiling them to create a FAQ section on the main website: http://www.autismbites.com/.
The t-shirt Ammon is wearing on page 91 is of our own design, Robin did the face and I put the words with the face. We have a total of 30 different combinations. (See link for t-shirts to the left). We hope that by having our story told that we can:
1) increase the awareness and understanding of Autism.
2) from our example (we know we're not perfect) that it can give hope to other parents struggling with their marriage and children.
3) jump start our efforts to create our AutismBites Foundation. The goal is to help put funds directly into parents hands for whatever, without a lot of red tape and hoops to jump through.
4) since a lot celebrities read People also, we're hoping some will step forward to help with our fund raising efforts for the AutismBites Foundation.
Well, got to go, four of the children have been sick this week and now Robin is not feeling well. We'll do our best to update this blog and add addition info to the website that my sister-in-law is helping me with.
Dad
In between then and December, when our photographer Ken stayed for 3 days, she would check in with us and assure us that even with various delays they were still very interested in our story.
We are VERY happy with the story and pictures. Sharon has captured us and our situation to perfection. Because of her limited space she cannot go into as many details as she would have liked, soooooooo I thought I fill in a bit more here.
First, any questions you have, please put them here. I will be compiling them to create a FAQ section on the main website: http://www.autismbites.com/.
The t-shirt Ammon is wearing on page 91 is of our own design, Robin did the face and I put the words with the face. We have a total of 30 different combinations. (See link for t-shirts to the left). We hope that by having our story told that we can:
1) increase the awareness and understanding of Autism.
2) from our example (we know we're not perfect) that it can give hope to other parents struggling with their marriage and children.
3) jump start our efforts to create our AutismBites Foundation. The goal is to help put funds directly into parents hands for whatever, without a lot of red tape and hoops to jump through.
4) since a lot celebrities read People also, we're hoping some will step forward to help with our fund raising efforts for the AutismBites Foundation.
Well, got to go, four of the children have been sick this week and now Robin is not feeling well. We'll do our best to update this blog and add addition info to the website that my sister-in-law is helping me with.
Dad
Friday, December 21, 2007
Education and Media Week
Better late info then no info. But hey! It's the Christmas season AND we do have those six Autistic children and their needs. Anyway...
Sunday, December 9th was the start of the Education part of the week. A neighbor of ours, Melisa, does educational seminars for teachers and parents of Autistic children. She is a 'Behavior Analyst', as I understand it, that teaches these groups how to communicate with their Autistic children. She does seminars all over the country and concentrates on Aspergers children. She and a fellow Behavior Analyst, Aaron, from California; watched our children, came up with a plan and personally bought materials for us to use. Aaron specializes in working with more severe Autism. Thanks guys!
Here's our crew, Monica, Scott, Keith and Richard:
Sunday, December 9th was the start of the Education part of the week. A neighbor of ours, Melisa, does educational seminars for teachers and parents of Autistic children. She is a 'Behavior Analyst', as I understand it, that teaches these groups how to communicate with their Autistic children. She does seminars all over the country and concentrates on Aspergers children. She and a fellow Behavior Analyst, Aaron, from California; watched our children, came up with a plan and personally bought materials for us to use. Aaron specializes in working with more severe Autism. Thanks guys!
On the afternoon of the 11th our documentary producer and camera man came over to see what was needed to get the house ready for filming. They were here that day and Wednesday and left late Thursday. Got a lot of family life and daily living plus on Thursday I took 3 of the children to University of Utah's Autism research center we've been involved in for the past year. They filmed one the Dr's doing evaluations on each of them.
Here's our crew, Monica, Scott, Keith and Richard:
Then on Friday, December 14th, our magazine photographer, Ken, arrived. He followed us around for the next 3 days. He said he would take over 1000 shots and they'd end up using 6-8. I thought that was huge, but he said that it is very typical.
Our reporter says that now that we have pictures our story should be out fairly soon. We are hoping that it is THIS month.
Our goals are better and more awareness and getting support and financial aid to families through our AutsimBites Foundation.
“Funding for Autism research is good, funding to help with day to day living, is better.” - Dad
Wednesday, December 12, 2007
Glenn Beck Turns Back On Dad of Six Autistic Kids
My title is another example of sensationalistic "Headlines" that we are seeing a lot during this political season. (my little joke, HA!) If you look closely you'll seen Glenn smiling. (also notice that Glenn and I have similar chins) He was at a book signing, last Saturday, for his latest book. My oldest son, Ben, snapped the picture just after I handed Glenn a gift t-shirt from our website. (Glenn was actually turning around to put the t-shirt on a table behind him) He was very nice and when I told him I was the Dad of six Autistic children and that the t-shirt was from our website he said, "God bless you sir."
The big face in this shot is me.
I silenced the room and created a fair amount of laughter when I let out a VERY loud, AWWWWWW-YEAHHHHHH!!! about 5 times during the book signing.
The people behind me got this shot for me and emailed it. Thanks Connie!
In between the folds of the t-shirt I included a note to Glenn regarding Autism. Here are some excerpts from that letter: "Make a Difference for Autistic Families. Who We Are - My wife, Robin, and I are the parents of six Autistic children. We are participants in a genetic study on Autism at the University of Utah. We’re making this appeal especially to you because as a father of a special needs child you would have an understanding of our hopes for, our and all Autistic children’s future.
You Are Too Busy - I know… I know that you are busier then a one-armed paper hanger that also has just one leg, now involved in a butt kicking contest. However, I hope that you will consider helping parents that have been financially devastated by Autism.
We are forming a non-profit, The AutismBites Foundation. Our wish is to get needed funds into the hands of Autistic parents for basic needs, home renovations to keep their children safe, for treatments and interventions to improve their children’s lives...
...Do an AutismBites charity day on one of you radio programs sometime in 2008. It could be much like the one Rush Limbaugh does for Lymphoma where he raised around 5 million dollars last time."
I then included this recent picture of our family.
Hope and pray with me that we can get the AutismBites Foundation to become a reality very soon.
Dad
Sunday, October 7, 2007
We're On A Mission
I was talking to the marketing guy connected to Robin winning the 'Busy Mom' contest the other day. He had attended a seminar that said in today's world there is too much of: 'XYZ is the greatest, best, etc.' or 'Never seen before', blah, blah, blah. For something to be TRUELY unique it must really, actually, BE unique.
WE are unique.
Not to go tooting our horn here, but we have SIX Autistic children. And we have a strong marriage as well. Note I did not say perfect... and we make it through each day. We have a story and experiences to talk about that we feel can help others with their struggles. Whether you have Autistic children or not.
I've joked with my wife that I'd be a great political candidate with what I've been through in MY life. I can relate to a LOT of people... "I feel your pain". ; )
My parents were divorced when I was young. I've had 3 stepfathers. I've lived as a child on a military base. I've lived in regular neighborhoods. I've been abused, physically, emotional and sexually. I've been poor, middle class and yet looking for being rich. I have lived in or visited every state in the US except: HI, AR, ME, VT, NH, CT or MA. I've travelled across the country by myself in cars, buses, trains and planes. I was in the USAF for over 12 years and got to live in and visit a number of countries in Europe.
I can speak a little bit of Russian, Spanish and a bit more of German. I've been married and divorced and married again. I'm the Father of 9 children (5 girls, 4 boys) and step-father to one. I am the oldest of 9 siblings, most are half brothers and sisters. I have relatives I get along with and some I don't. I have ancestors that were here in the early 1700's and some that got to the US in the late 1800's. My ancestry is English, Irish, Dutch, Prussian and French. I or my ancestors have been military members during the Cold war, Vietnam, Korea, WWII, Civil war and the Revolutionary war.
In the military I've earned two medals for marksmanship, received leadership awards , marched men, lead men, been frozen at minus 50 degrees and have worn full chemical gear and gas mask for hours in 90 plus degree heat. Repaired nuclear warheads, helped install nuclear missiles on B-52 bombers and have seen the 'standing on it's tail' take off of an SR-71 spy plane. I also cut a lot of grass and weeds. Painted walls and floors. Drove step vans, tugs, 2 1/2 ton trucks, pickups, and about everything else with wheels. I knew a man who was a political refugee from an African dictatorship. I could go on but that is about all I can think of off the top of my head.
So, why is any of this in any way important to you? I believe I can relate to nearly anyone, anywhere or anytime. My title above says we are on a mission.
What mission is that? Glad you asked.
TO HELP OTHERS.
We are both great conversationalists. If I or we can help just one person feel better, deal with a situation better or just make it through another day, we've done something good. Robin and I enjoy watching the sermons of Joel Osteen of the Lakewood Church in Houston, TX. He gives hope to the hopeless, lifts up those in despair and restores faith in people. If we can do our own little bit in the Autism world. We feel it is our 'calling', our 'mission' and our personal Ministry.
What can I help you with today?
Dad
WE are unique.
Not to go tooting our horn here, but we have SIX Autistic children. And we have a strong marriage as well. Note I did not say perfect... and we make it through each day. We have a story and experiences to talk about that we feel can help others with their struggles. Whether you have Autistic children or not.
I've joked with my wife that I'd be a great political candidate with what I've been through in MY life. I can relate to a LOT of people... "I feel your pain". ; )
My parents were divorced when I was young. I've had 3 stepfathers. I've lived as a child on a military base. I've lived in regular neighborhoods. I've been abused, physically, emotional and sexually. I've been poor, middle class and yet looking for being rich. I have lived in or visited every state in the US except: HI, AR, ME, VT, NH, CT or MA. I've travelled across the country by myself in cars, buses, trains and planes. I was in the USAF for over 12 years and got to live in and visit a number of countries in Europe.
I can speak a little bit of Russian, Spanish and a bit more of German. I've been married and divorced and married again. I'm the Father of 9 children (5 girls, 4 boys) and step-father to one. I am the oldest of 9 siblings, most are half brothers and sisters. I have relatives I get along with and some I don't. I have ancestors that were here in the early 1700's and some that got to the US in the late 1800's. My ancestry is English, Irish, Dutch, Prussian and French. I or my ancestors have been military members during the Cold war, Vietnam, Korea, WWII, Civil war and the Revolutionary war.
In the military I've earned two medals for marksmanship, received leadership awards , marched men, lead men, been frozen at minus 50 degrees and have worn full chemical gear and gas mask for hours in 90 plus degree heat. Repaired nuclear warheads, helped install nuclear missiles on B-52 bombers and have seen the 'standing on it's tail' take off of an SR-71 spy plane. I also cut a lot of grass and weeds. Painted walls and floors. Drove step vans, tugs, 2 1/2 ton trucks, pickups, and about everything else with wheels. I knew a man who was a political refugee from an African dictatorship. I could go on but that is about all I can think of off the top of my head.
So, why is any of this in any way important to you? I believe I can relate to nearly anyone, anywhere or anytime. My title above says we are on a mission.
What mission is that? Glad you asked.
TO HELP OTHERS.
We are both great conversationalists. If I or we can help just one person feel better, deal with a situation better or just make it through another day, we've done something good. Robin and I enjoy watching the sermons of Joel Osteen of the Lakewood Church in Houston, TX. He gives hope to the hopeless, lifts up those in despair and restores faith in people. If we can do our own little bit in the Autism world. We feel it is our 'calling', our 'mission' and our personal Ministry.
What can I help you with today?
Dad
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