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
Friday, March 21, 2008
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30 comments:
You do seem to like your situation a little too much. Munchhausen syndrome? Since AU is genetic I would get the parents tested as well. Depression is comorbid with AU. Also, I would have them have another kid so that they will have a strong hold over the Autism family lead and won't lose out on making more money. It's all about the money!!!
BTW, I didn't see any visual schedules in the house...so much for the behavior analyist's reccomendations.
To author of last post: You are a complete coward. If you are going to utter such hateful drivel at least have the guts to post your name. I'm sorry that you are obviously such a miserable person that you find it necessary to attack another human being in such a way. If you don't like the cause don't donate, don't visit the site. Take that extra time and get a real life.
While I agree that funding needs to be increased I am curious--where did you find the information about the funding discrepancies?
I totally agree with maralee.
Why bother to post such negativity (1st comment)? It doesn't seem to do much good.
Marie
I agree with the fact that the first comment was hateful but it's interesting that in her attempt to point that out the second person that posted resorts to petty name calling. Why can't people have a discussion about anything related to autism without it getting so nasty?
Please stop having children
"Please stop having children"?
What kind of a thought is that? This is like asking somebody to forgo their quest for happiness, or their desire for improving the world.
So their children are not normal- sometimes it is that difference that teaches us the meaning of being human. It is the challenge in children that teaches us how to love humanity and sacrifice for the better of all.
And just because some children need a different way of doing things, or more help does not make them any less human. often it is the sacrifice we give to raise and love those children that truly bring us happiness.
If you have yet to experience true happiness- it is you I feel sorry for.
Thanks maralee, miss nelson and round belly. We didn't ask for Autistic children so we could 'clean up' financially. The Good Morning America story mentioned $500 a month extra to raise an Autistic child. We think that is very optimistic.
We had our children before we knew about the Autism. But, if we did know and after prayer felt we had another precious little baby needing us to be their parents... we'd have been just fine with that.
"People will forget what you said, people will forget what you did, but people will never forget how you made them feel." - Maya Angelou
I imagine that your kids all suffer from regressive autism, which would also mean that they weren't born with it but were damaged by environmental toxins. I appreciate your strength and desire to make a difference. I run a non-profit in CA and we are endeaving to open an autism treatment center that would provide all treatments free of charge. It is not fair what families have to pay out of pocket to heal their children. And, $500/mth doesn't even begin to cover it. That amount might cover gluten-free and organic food, not treatments, not supplements, not diapers for the unpoddy trained.
Keep fighting the battle, Dadof6. I admire you.
I just wanted to say thank you for having the courage to speak out about special needs children. It is people like you who give me the courage to go on when we have our bad days.
alls i have to say is parents with no autisic childeren have no clue what we go thru . my son is 4 yrs old and still not potty trained and has no interst in it . we can not go on vaction or any where to visit cause my son goes into fitts of bitting himself and slapping himself . he has so many problems its so hard to keep up with all of it hes in school 3 hrs day and also recieves 15 hrs week in home therophy and if we go off that scheadle we dont sleep for 3 days till we have been home and get back on scheadle . i caint even go to the walmart to shop with out having my son scared to death when peaple want to look at him hes climbing out of the cart and up my body like a monkey . peaple have no clue what i go thru and the money thing is alot of help if the goverment only had a clue on what it cost for therohy , food, diappers, clothing cause he chuse them up ,strollers , wagons cause he dont want any one to see him when we go to the park. some times i ask myself how do i do it ? the answer is cause i dont peaple like anonymouse to end to my son . with no heart and soul . god bless every mother and father who has a speacial needs child . maybe the world will stop chatting in chat room and use the internet to look up what they could do to change the thoughts of so many others on autistic childeren. god bless!!!
kavit
hi....
iam from india. my son is autistic..though he now seems normal. espect for te communication gap. i get terrified everytime i browse thru an austiam website..but i still have to for my child. thanks for this site..because a guide comming from a parent is so so important . thanks.....wish all ur children te very best.
Hello,
I really do admire what you are doing. I can;t imagine the stress you go through everyday.
Yes, God bless every mother and father who has a special needs child. Every child is a blessing. The parents who care for these kids who require so much are truly special.
I just wanted to let you all know that I heard that CNN is making April 2nd "Autism Day" on their station. They are looking for people's stories.
You do realize that funding for those diseases you listed are for research in finding a cure and it's not money to be put into the hands of the parents as a purpose to help "the Mom's and Dad's that are being financially devastated every day by Autism."?
Stop begging people for money.
I think there should be more funding for programs to help treat children with autism but I do not think that money should be put in the hands of parents directly. You say that it bothers you when people say you are trying to make money off of your kids--maybe if you weren't so blatant about it you would be perceived differently. No doubt my comment will be pounced on but you have to be realistic in how you are perceived. Raising awareness about how autism is affecting children, adults and families would be a wonderful goal instead of putting your hand out and condemning anyone who doesn't agree with you.
I don't know if you have said anywhere and I was wondering if any of your children are currently taking any medication. I have a 7 yr old diagnosed with high functioning autism and adhd. The school and medical professionals are pushing some form of medication. We were even told that with the right meds the autism may just "go away" So I was wondering if you are using meds, how they are working and possibly which ones? Thank-you
I'm sure this will spark a lot of controversy, b/c it is certainly not "PC", but here goes....
Who among us wouldn't gladly take a "hand out" to give our children a better life? I would. I'm not saying that I think parents shouldn't work, live off the government and then ask for donations (which is not what this family is doing). I want my children to have the best life possible. If a stranger wanted to give me money so that I could give my children a better life, then I would certainly take it. The difference between me and Mom & Dad (blog authors) is that I don't have 6 AUTISTIC KIDS. In a world where more than 2.5 kids is considered "a lot" and special needs kids are considered "a burden" I applaud any parent who raises children with love and compassion. So what if these folks are raising money for their family??? Doesn't everyone "raise money" for their family...it's called a JOB. This man has one, and so does his wife. The also have 6 full time jobs from which they must fulfill constant needs. How about offering up some prayers on their behalf, rather than criticism?
Let's be realistic--this blog's authors are trying to raise money for their family. A stranger giving you money to help your child is a lot different than you going out in public asking for the money and condemning anyone who says different.
I wonder, if the Kirton's were the parents of a dying child and they were making a plea for money to provide a potentially life saving operation they couldn't afford, would so many people be so critical, angry, and downright hateful?
Credible research recommends at least 20 hours of therapy a week for one child with autism. If you're lucky, you'll get some grad level college student (as I was) and pay them $10 per hour. But then there's the specialist fees at probably $100-$300 per hour for mere consultation. Let's not forget equipment. Equipment for sensory needs, equipment for motor deficits, equipment for safety, etc. Doctors, specialists, therapists, pharmaceuticals, etc. This is the tip of the iceberg. Multiply that times 6 kids for at least 21 years per child. Add in anything the Kirtons will tell you I have left out.
How many of you have complained about the cost of gas this week?
'nough said
Oh, I forgot the much needed respite. Has anyone stopped to think how this couple ever gets an evening away? What would that babysitting tab be?
Praying for you guys.
It is good to have 'anonymous' commentors here so that those with hate or disdain that needs to get out, can feel better about themselves while 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, 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 cannot 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. Does GM make profits on cars? Does McDonalds make profits from selling hamburgers? Does Apple ipods make money for them? Does Mircrosoft 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".
well said 'the beaver bunch'!!!
I have to agree with you. I am the mother of a beautiful three year old girl with autism. I believe in raising awareness so that my child and so many others will be accepted and not shunned in every social situation and in funding for research to prevent new babies from encountering this disorder. Not requesting money from people that don't know me and that have family of their own to take care of. figure it out on your own, or do some research there are plenty of waivers out there. I in no way support the choice in title of this page either, autism bites? seriously what a smack in the face to your child. by saying that your siding with the outside world and being in total denial that your child is right there in front of you, special, beautiful, unique. embrace who he or she is and help them grow from what they can do , don't discount them because they don't seem "uptopar"
very true as well
waiver waiver waiver it pays for your respite.
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