I know I let things slip WAAAAAAY to often, but that thing called LIFE sneaks up on you and before you know it another day has come and gone. Today was a tough day. Mom wasn't feeling well and the special class at church had no teachers that could be there for Ammon and Sarah.
So I stayed home to let Robin sleep.
I dropped off Bobby at church but the rest stayed home. Emma and Nephi? If they were going to have a meltdown at church one of us needs to be there. Since we weren't... they stayed home too.
So before our documentary came out I busted my behind to update and make needed changes to the www.AutismBites.com website. My sister-in-law added some nice touches. Was it worth the effort? Did you like all the extra links? What do you think?
I'm almost ready to finish the start of a new project. See what I'm doing here: http://www.meetup.com/dreamteam100/
I'll also be ready to launch a way to help moms and dads stay home, and earn what you need, within the next few weeks. Now I'm counting on those 20-30% who answered one of my previous polls to become partners with me. There will be some small start-up costs but the rewards will be far greater. If your budget is very small I've got ways to get around that as well. Small budget? Been there, done that.
Well, I've got tons more to do and not a lot of time to do it in. Keep those cards and letters coming!
Dad
Sunday, October 19, 2008
Monday, October 6, 2008
Autism X 6, FAQs
Frequently Asked Questions. In case some of you haven't heard what FAQs are. So, the past few days I've done a bit of lurking on blogs that have been talking about our documentary. I'm wondering if they watched the same one that I saw last Wednesday.
So I've decided to create a recurring post, called simply "FAQs". To make them easy to find, I will have a 'label' category of just the FAQs post. I hope to clear up a large number of misconceptions, misquotes and misinformation about us.
Question: Why did you keep having children when you knew they had Autism.
Answer: All of the children were born before we knew anything. We were first told that Bobby should be evaluated for a 'communication disorder' when he was 11 1/2, Mary, our youngest, was almost 5 months old. This was May 2005.
Question: How old were the rest of the children at that time?
Answer: Emma - 7, Nephi - 6, Sarah - 3 and Ammon - 1 1/2
Question: Wasn't Sarah the next child that you thought may have Autism?
Answer: We were concerned that something may be going on with Sarah. (May 2005). That summer Robin's parents visited us for their vacation. We live in Utah, they live in Minnesota. Robin's mother suggested that maybe something was wrong with Sarah's hearing. She didn't talk, but we weren't overly concerned because Nephi did not talk until he was 3 1/2. Sarah wasn't that old yet.
Question: So when did you find out about Sarah's Autism?
Answer: After Robin's mother's concerns we asked people at church and other friends what they thought. Some also suggested that something may be wrong. We were told of a pre-school in our school district where Sarah could be evaluated. This was August 2005. Two special education teachers visited with Robin and Sarah. They told Robin that they thought she was Autistic. We were shocked, we had no idea what Autism was. We thought she was like Nephi, just a slow talker. We didn't know yet that Nephi had Asperger's Syndrome. Looking back now, we figured that we were too close to the situation and had no idea that something serious was going on.
Question: Come on, you had no idea? No Doctors said anything?
Answer: No, not a single one. We suspected nothing ourselves until Bobby's school said he may have a 'communication disorder'.
Question: So you knew that Sarah had Autism in August 2005.
Answer: No, the preschool said they thought she was. They said they would need to do testing and evaluations once she was enrolled in the pre-school. The determination from the school was in December 2005. They said Autism. However, she did not have an official Doctors diagnoses until October 2006.
Question: Why did it take so long to get the Doctor diagnoses for Sarah?
Answer: John had just started working for a company with great pay and benefits when Sarah's school suggested Autism. (August 2005) We both took it hard, but it affected John's work performance as well. In December 2005 the pre-school said that Sarah HAD Autism. John's father died a few days later, after a long illness. It was a bad month. John asked for a lighter workload, but was told that he should take care of his family problems... at home. John's supervisor said that John had quit. This was not true. But, he had neither the physical or mental strength to fight it out. So we had no insurance for official Doctors diagnoses. We had to wait until Sarah's medicaid kicked in and then wait months for a Dept. of Mental Health appointment.
To be continued...
So I've decided to create a recurring post, called simply "FAQs". To make them easy to find, I will have a 'label' category of just the FAQs post. I hope to clear up a large number of misconceptions, misquotes and misinformation about us.
Question: Why did you keep having children when you knew they had Autism.
Answer: All of the children were born before we knew anything. We were first told that Bobby should be evaluated for a 'communication disorder' when he was 11 1/2, Mary, our youngest, was almost 5 months old. This was May 2005.
Question: How old were the rest of the children at that time?
Answer: Emma - 7, Nephi - 6, Sarah - 3 and Ammon - 1 1/2
Question: Wasn't Sarah the next child that you thought may have Autism?
Answer: We were concerned that something may be going on with Sarah. (May 2005). That summer Robin's parents visited us for their vacation. We live in Utah, they live in Minnesota. Robin's mother suggested that maybe something was wrong with Sarah's hearing. She didn't talk, but we weren't overly concerned because Nephi did not talk until he was 3 1/2. Sarah wasn't that old yet.
Question: So when did you find out about Sarah's Autism?
Answer: After Robin's mother's concerns we asked people at church and other friends what they thought. Some also suggested that something may be wrong. We were told of a pre-school in our school district where Sarah could be evaluated. This was August 2005. Two special education teachers visited with Robin and Sarah. They told Robin that they thought she was Autistic. We were shocked, we had no idea what Autism was. We thought she was like Nephi, just a slow talker. We didn't know yet that Nephi had Asperger's Syndrome. Looking back now, we figured that we were too close to the situation and had no idea that something serious was going on.
Question: Come on, you had no idea? No Doctors said anything?
Answer: No, not a single one. We suspected nothing ourselves until Bobby's school said he may have a 'communication disorder'.
Question: So you knew that Sarah had Autism in August 2005.
Answer: No, the preschool said they thought she was. They said they would need to do testing and evaluations once she was enrolled in the pre-school. The determination from the school was in December 2005. They said Autism. However, she did not have an official Doctors diagnoses until October 2006.
Question: Why did it take so long to get the Doctor diagnoses for Sarah?
Answer: John had just started working for a company with great pay and benefits when Sarah's school suggested Autism. (August 2005) We both took it hard, but it affected John's work performance as well. In December 2005 the pre-school said that Sarah HAD Autism. John's father died a few days later, after a long illness. It was a bad month. John asked for a lighter workload, but was told that he should take care of his family problems... at home. John's supervisor said that John had quit. This was not true. But, he had neither the physical or mental strength to fight it out. So we had no insurance for official Doctors diagnoses. We had to wait until Sarah's medicaid kicked in and then wait months for a Dept. of Mental Health appointment.
To be continued...
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
Subscribe to:
Posts (Atom)
