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Diet costs too much for some

ch1ckenleg
Level 0

Posted on Sep 18, 2007 7:02 PM

Hi Jenny & Holly!

I have a 6 year old DAUGHTER with Autism. I've heard over and over about the wheat free, dairy free diet....BUT...I did try it for about 2 weeks and couldn't afford it. What makes me upset and I'm sure alot of other mothers out there is that 'some' of us just can't afford the high cost of the foods for the diet. It's hard being 'alone' doing this and no help from the father at all. And I'm sure I'm not the only one doing this alone. But it's just not fair or right that the State or the Government will help out with 'such funding' so that ALL autistic children/adults CAN do this diet. I mean if it works then 'such funding' to help the families who can't afford it. I had a very nice paying job and a husband. Now I have neither and it's just not fair at all. I can't go to work due to daycares won't take her due to her condition. And if I go the facilities that do take 'special needs children' the rates are outragous! I worked in a Hospital facility for 10 years and I had to leave my job. My girls daddy don't help what so ever and left me due to her problem. I've over and over asked for help from the State and I was told: I'm sorry, Autism is not a disablility and there is no funding to help you. How right is this? I can't work due to no one will hire me due to what kind of hours can I actually work? She goes to a learning disability school now due to she is 6 and is at school from 9am to 3pm. But, no one won't hire me due to I can't get to a job by 9am due to 'latchkey' won't take her due to her Autism, so that means I have to drop her off at school about 8:50am and then pick her up at 3pm. So that leaves me to find a job that will hire me starting AFTER 9am? and then I have to be off at 2:30pm to pick her up. Now how in God's name is anyone going to survive on that? My mom won't help me due to she can't handle my daughter and her problem. My ex mother in law don't want nothing to do with me or my daughter, and the dad.....ah! He's like out in the world enjoying life while I'm here by myself struggling and can't afford the diet or anything in life at all. It's not fair! Where does one find HELP? Why can't we get support of funding? Why can't my daughter be able to do the diet? Why can't I have a normal job from 9 to 5? Why is it that the fathers don't help at all? I'm 40 years old and my life has just been off the wall. I don't understand why funding or aid can't be given? My daughter had the right to be able to do that diet but when no one employes the mothers due to not being able to work a full time job due to daycares won't take Autistic kids..........what now? How fair is that? It's not, I know.

Thanks for your input today on the show though. I struggle everyday to help her to speak and come out. Sorry if I sounded off a bit, but it's hard to handle this sometimes. I can't live forever and who will care for her when I'm gone? Surely not the State? What then? Who will care for her then?


Thanks for listening.


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Replies: 4
schaibley
Level 0
1. Re: Diet costs too much for some
Sep 19, 2007 8:43 AM   |   In response to: ch1ckenleg

Hi, I have a son with autism. Yes the state will help you and pay for therapies. I had my son permantly disabled by the state of Illinois but, you only can make so much money to qualify and how you make determines how much you will get. I only got the funding for one month because they said we made to much money. What is to much money when you have 3 kids a husband and me and finally all the special things for my son that has autism.

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florarose
Level 1
2. Re: Diet costs too much for some
Sep 19, 2007 1:09 PM   |   In response to: ch1ckenleg

Our family is proof positive that the diet can be done even when you are living paycheck to paycheck or as the working poor which my husband and I were when our son was diagnosed. The diet is hard at first and it does take work, dedication, perseverance and most of all TIME-that's the simple truth. But it can be done on a budget. Also, our child qualified for Social Security disability and that was what really helped and pulled us through once we found out about it. A child has to have an official diagnosis and the paperwork must be filled out correctly and honestly as they check everything in light of the fact that it is only for families that qualify up to a certain income bracket. We no longer qualify, but our son will qualify for it again when he turns 18. Another thing you should know is that schools are legally bound to provide services for disabled children with an IEP in place so don't let them get away with giving you the runaround.

I realize that your situation is different in being a single mom, but just know that there are ways to fight the system and that you CAN do it!

Hope this helps!

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tararenee2
Level 0
3. Re: Diet costs too much for some
Sep 19, 2007 2:19 PM   |   In response to: ch1ckenleg

We were a low income family when our son was diagnoed with autism. However, because our son has a high IQ and because we have money invested, we do not qualify for any financial help.

Our grocery bill is around $75 a week, much less in the winter for our family of 5. We have been on the diet for 2 years. The key is not cooking with convience foods. Make them yourself. A great book is The Gluten Free Gourmet Cooks Fast and Healthy by Bette Hageman.

cooking from scratch seems daunting at times, but make a GFCF cake cut it and freeze it. Use it only when you need it. This can be done with cookies, muffins, sauces, and even meals.

I spend less than 2 1/2 hours a week in my kitchen cooking and we eat GFCF and organic. It is difficult to cook with an autistic child around but maybe they can help you if they have the ability. My son didn't for many years. He now loves to cook with the family.

My son is a recovering autistic child. He was severe and now very close to "normal" . The diet was a major factor in saving his life. His hyperactivity was completely eliminated with the diet and his gut is now recovering. My son was vaccine damaged from the HepB vaccine.

feel free to contact me with questions. taradowd@hotmail.com

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pamkh40
Level 0
4. Re: Diet costs too much for some
Sep 19, 2007 5:24 PM   |   In response to: ch1ckenleg

Hello- I know all to well the high cost of the CFGF diet and how hard it is to live by. I Have actually stood in the grocery store and cryed as I looked around me and there was almost nothing in there that could feed my children. I have 3 children with autism and simply do not have the time to run from store to store get the best price on one item (never mind the price of gas). My husband works and needless to say I have a full time job managing the care, schools and therapies or three children with autism and seizure disorder. There is no help out there that looks at all the "not normal" expenses that families of children with autism encounter. I was even told "off the recorded" by an SSI employee that is my husband and I would get a separation or a divorce he would then be able to help our family. I could see it made him SICK to say that. My husband and I no longer answer our home phone to avoid bill collectors. We can not go out to eat or on a vacation, even though we work hard and earn a good living. I think it is sad that we have to live like this just so we can help our children.

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