intro, ok if I hop on board?

iVillage Member
Registered: 07-18-2006
intro, ok if I hop on board?
3
Sat, 03-31-2012 - 10:29am

Hi, all. Just wanted to introduce myself and make sure there are no rules for posting here? I've been on a few ASD support boards where you have to have permission to post, just want to make sure I'm not violating any rules!

Ok, so here is my story.

My name is Angie, I'm 39 years old. My daughter, Marisa, is nine and severely autistic. She is still not completely potty trained, and is non-verbal for the

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Mon, 04-02-2012 - 1:24pm
Hi Angie, welcome to the board! We have no rules about posting, so feel free to jump right in. It's so frustrating that you have to choose which therapy you can afford, she should be able to get any help she needs without additional cost to you :( I hope that your search for a neurologist who will be covered by insurance is successful, keep us posted.

iVillage Member
Registered: 04-21-2009
Mon, 04-02-2012 - 3:20pm

Hi, Angie -- welcome! No rules about posting here -- we welcome everyone and want to be a place of support and resources for anyone who needs it. ASD is stressful enough as it is, we don't want to make it even harder to reach out. :)

I feel your pain on the costs! It's ridiculous, isn't it? We have private insurance but DAN doctors (Defeat Autism Now), which is the plan we *try* to follow, don't take insurance. I was lucky and had a ped for a while there who would order any test I wanted, but we moved. Now I don't have that resource and have to find a new one if I want anything run that isn't immediately necessary. We don't vaccinate anymore either, so of course that lessens our options.

Have you checked out TACA? www.talkaboutcuringautismnow.org, I think it is. (If not, Google can direct you.) I should know it by heart but I have to look it up each time if I don't have it bookmarked, and this isn't my usual computer so I don't have it handy. They have a wonderful style of self-help resources, along with ARI, or Autism Research xxx, ack, drawing a total blank. I bought books from each and have saved myself a ton of money by following the protocol on my own. (It's not prescription drugs or anything dangerous, just supplements and whatnot.) We found a huge help with probiotics, and we use melatonin so he'll go to sleep. We've tried many other things throughout the years, including the GFCF diet, only to find it really didn't help him at all. (Only 40-60% see major increases, which is excellent -- we just weren't one of them.)

It sound like you're getting a lot of help at school -- kudos, you are an advocate and you do a fantastic job! That's often the hardest part!

TACA has an email group that's mostly biomedically-driven, so you might find someone on there who could direct you to a neuro that could work with you? We found ours by trial and error, after moving to a small town and getting lucky; he's not a DAN doctor but he works with us on things. Phew. One huge hurdle down. Next up? Getting the health department to sign off on our vaccine exemption, a state requirement. A long drive and stress for what ought to be a guaranteed parental right!

I'm really glad you're here! I hope to be really increasing our conversations this month in light of autism awareness. I'm not here as much as I should be -- I work full-time and have four kids, and we are planning a cross-country move so selling the house is a time-drain but we're getting there. If I'm not here, CMMelissa is great as well as a lot of other members who are full of ideas and help. I hope you post more!

Take care,

Lily

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iVillage Member
Registered: 07-18-2006
Mon, 04-02-2012 - 7:50pm
Thanks for the warm welcome, I am really looking forward to getting to know everyone here!