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
Saturday, October 4, 2008
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16 comments:
I watched your Autism x6 show last Wednesday...it was wonderful for my husband and I to see. Our 4yr. old was just diagnosed with Asperger's in May and we are continuing to learn everyday. We also have a 3yr old who seems to be fine at this time. Thank you for sharing a peek into your daily life. I saw a little bit of our daughter in each of your children and that made me feel less alone. God bless you and your wife. I feel so stressed with my two little ones , I can't imagine 6 :-) I can't wait to go check out your T-shirts!!
I got my son the no mute button earlier in the year and it was a hit at autism summer camp. He wears it when we go to stores on weekends since he is in a school now that has a uniform.
My 13 yr old HFA son was going to use computer while I watched the show, but instead he viewed it with me and was relating to your older son.
I have two kids onthe spectrum, and going to camp helps my 13 yr old know that his 12 yr old nonverbal brother is not the worse kid with autism out there. He likes to see those with autism and guess whether they are low, medium or high functioning.
The morning after he woke up and said somethings about the show and that was good that it sparked conversation and questions to him.
It was a good profile of your family. My son thought your one daugher (who stands on table) got more exposure than the others.
John,
I watched AutismX6 and wrote about it on my blog. I feel often like I am barely above water living AutismX1.
What a compelling family you have and I commend you for opening up your family for the world to see. I'm sure many will be quick to judge or write it off.
More assistance programs need to be put in place for families dealing with Autism. Therapies that are not covered by insurance, expensive treatments & food, and growing medical bills. I wish for you an angel who will help your family, it is truly deserving.
MT
I was sorry to read that someone thought you were trying to make money off of Autism. I live here in Utah, and have came across your famiy in probably everything you've done thus far, and I have never gotten that impression. We have a 3 1/2 yr. old with Autism, and I have benifited from your media coverage. It is about awareness. Sometimes I am sad when my child reacts poorly in a store and throws everything off of the shelves or lays on the floor and will not get up, but because of the awareness you give a few more people are educated and look at me with sympathetic eyes instead of judging eyes, and I appreciate that so thank you.
Sad to hear that there are multiple families out there struggling with multiple children with special needs. Though I love my children more than anything, I would not wish this life for anyone.
I wish she could understand that by bringing awareness, this will bring in more help for families with Autism. We feel very fortunate that we receive a lot of help from our local regional center. Sure, we pay the high price of living in San Diego, but we do have choices and availability of treatment that many do not.
Thank you for sharing your lives. We loved your show. So many of your experiences match experiences we have had with our kids. The "poo-doh" that my son would use to paint the walls, car, bed, carpet, etc... I am happy to say stopped a few years ago! Don't worry, you'll get there with the young ones. I thought Javi would never be trained. It took nearly five years, even though we aren't all the way there (pull up at night), I know we will get there at some point. Ammon reminds me a lot of Javi at that age. Javi didn't really talk until about age four, now he won't shut up ;)
I'm hoping your show will be on again soon. I have told so many people about it and they missed it when it came on. My mom missed the first half of it (even though I had reminded her).
Hoping you all are well. Hugs, Shanna
How wonderfully said. Shame on those who think negatively of you and the show. I was so impressed with the show and in no way did it seem some publicity stunt or way to get money! Hello! Your family was as normal as any with kids on the spectrum! You two are doing what you need to do for your family and THEN some! Showing the world that autism is out there? And out there in NUMBERS? Is fantastic! I applaud you for doing it! I can't imagine it's easy to show the world what it's REALLY like to live with children who have ASD! Every negative and positive involved! Yet you did it! Times 6!
You aren't John and Kate plus 8. You aren't getting boob jobs and hair plugs and shoving your children off and being disrespectful jerks.
You're real. You're human. You're parents. Caring for 6 kids (which probably feels more like 60 kids many times!) all with special needs.
If a few blog adds and a paypal button helps you to help your kids? GOOD FOR YOU! Idiotic women who giggle and talk about shoes online get money and publicity to go and buy more shoes? Why the hell shouldn't you? I only HOPE this blog can blow up into a 'superblog' where people can view the REALITY not just the circus freak mentality of your situation.
I've now left a far too long comment but I look forward to future blog updates and have subscribed and I can't wait to check out your website more. As a mom of a nearly 3 year old kid with autism I feel at least a fraction of your stress and send you nothing but love and support and the best of luck!
The show on Wednesday was fantastic. You have a very wonderful family.
I figured you would get some critism from the show...thats just human nature, I guess.
I am a parent of 2 boys, neither of which are autistic. However, by watching your show, and reading your blog, I have a much better understanding of what it is like to raise autistic children. I think what you are doing is fantastic, and I hope you continue...I for one, have learned also from you and your family. Thank you.
Just two weeks or so ago I was watching John & Kate Plus 8 and was tinking - would it be a good idea if a family with an Autistic Child would make a similar type of show. And would it help other people understand what it is like. Thank God for your willingness to open up your home for the rest of us to experience what it is like. We are autismX2 - although both high functioning. I can only imagine how it is for you. I hope you will make more shows and hopefully you'll be able to get sponsors to help you just like they do for Jon and Kate plus 8 and the Family of 17 or 18 children I watch sometimes. Maybe Therapists can work with your children for free, or provide them with a trip to (wherever they would like to go) or maybe you'll make enough money, so that you and your wife can afford to have a date every couple of months - Don't apologize for it either.
Hello Kriton family,
I Was woundering if it would be possable le if y could put the movie on your site so I could watch it. I started watching it when sarah was at school how much did I miss? I saw . your three older kids remind me a lot of myself. I have NLD kinda like AS. come visit my blog
Az
Hey, John. Great show, great blog. I added your site to my AutismRetort.com blog, if not OK, let me know. When you figure out how to get rich, let me know. Therapy for Autism X 1 is expensive!
Fielding
My husband and I just watched your show the other day, and we were amazed that you and your wife both make it through the day, and then get up the next day to do it again...over and over again. What brave and courageous people you must be. And you never seemed to lose your patience. We have days where our 5 year old with ASD and our NT 2 year old wear us out completely.
Thanks for sharing your life with us and helping to spread the awareness.
Your children are so lucky to have you for parents!
I am a student about to graduate with a degree in Special Education-adapted track (my focus is Autism) and I told every single person I knew about your show, about 95% watched it and were amazed.
Your family is so wonderful to have opened your doors and showed the world what its REALLY LIKE, I believe your wife stated it perfectly (I can't remember who said it) "Autism is a spectrum disorder, well, we have just about the whole spectrum" HURRAY!!!
Forget all the pessimistic e-mails you get. I wanted to thank you for showing me the "home side" of things, generally I only ever see the "school side" and that can be total opposite. I appreciated all 60 minutes I got to "spend with you" and will keep it in mind as I begin to teach. :)
I am very happy that heavenly Father gave your children to you, weaker sprits would have giving up or taking the easy way out!! I am the oldest of six children and my youngest sister(14) and brother( 12) are children with autism. they has giving my family great joy and happines everyday and i could never see my family with out them
are yall lds????
Hi Kirtons,
I saw your show a couple of weeks ago and just wanted to let you know that I applaude your strength and humor through all of your struggles. I also live here in Utah and have 2 children on the autism spectrum. I was wondering if there is any possiblity that your show might become a series? I don't watch much TV--my sister called me to tell me yours was on--but I would make time for Autism x 6. It just helps a lot to watch a show where I feel I can learn and understand and be understood. Like I'm not alone in this, you know? And it would help out your family, and that would be so great! I was wondering what your thoughts would be on that. Thanks.
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