Thanks for sharing NorwayMom. I hadn't heard anything about this. Oh, to live somewhere civilized. I'd give up the melted butter and seafood in a sec.
Norway Mom can you paste and copy this since the link does not seem to work?
Thanks
MomtoSweet - Can I ask what your co-pay is? We were going to get it but after hearing that some people are paying 12.5% of their income - that just isn't doable. When I tried to figure out a few years ago - I came up with a LOT less than that and my dh makes fairly decent money (he has a Ph.D). But, 12.5% of our income would seriously bankrupt us and would not be worth it.
You could pm me if you like!
I have found it very fustrating between finding doctors that are covered and then to get services. CRAZY
Oh I would love to go to frazer but so far it is a no go with the my insurer.
I just got our IEP ? and am now seeing how to fill in. But I was super put off by the U - someone there had the balls to say " well you know your kid might not even be pdd-nos - this after she wanted to know why I would want to see a ped neuro. "
Has anyone used TEFRA? I have talked to my case worker but it sound expensive and not sure if it will help us.
What I need to get a better handle on is the sleep problems we have - I when to St. Paul Sleep Clinic in March to be turned away saying my dd has mood disorder or is bi polar - I wonder now if they may be willing to help?
We also have been to a feeding clinic - to be told to regulate her sleep and eating and that would help - Would I be here if I could make her sleep or eat UGH!!
I hope this next one will be a bit more of a breeze. lol
With my first I had no idea what typical was so when Doctors asked I didn't know that she was so atypical and with the GERD milk intoleranse bladder reflux car/motion sickness , hate for thing on her feet , laying on her back, the need to do everything her way screaming for hours, puking 12 x a day, inability to comfort with anyone Then the need to sleep was gone everything a fight - I was told they are all like this everyone goes thought this and I found it so hard to relate to people who's kids went to bed at and eat in a high chair and had never screamed for hours on end refusing any confort. I felt like they where just looking at me thinking what a bad mom she's raising a monster.
sorry rant
well less than 40 hour and I will have two screaminge's :)
screamingE - I'm not a big Mayo fan, but they do have a good sleep disorder clinic. We went there (I don't know if your insurance will cover it - we were under Mayo insurance at the time) and were pleased. My ds did a sleep study around age 4. That was NOT fun, but we did learn that ds had Restless Leg Syndrome - which we suspected. He doesn't need meds and actually is sleeping better at night since we moved. We were told (contrary to popular belief) to get him some vigorous exercise about an hour before his bedtime and that would hopefully settle his legs down before bed.
Good luck with your labor and delivery! Are you being induced (wondering you you know the exact time and day?).
Hi ScreamingE,
I also have a daughter originally diagnosed with PDD-NOS (at 22 months). She's a little over 3 now. I live very close to the U of M and saw Dr. Reiff recently and YES, it was a long wait! It was well worth it though. We originally went through Mpls. EI and had the Bailey III as you mentioned. Then we went through Fraser, which completely unimpressed me. They just took the school scores from the Bailey and rewrote them and charged us 00. Seriously, they observed her (without me in the room) for a total of 20 minutes before making a diagnosis.
The U of M was very thorough in their listening, assessment and final report. They are for evidenced based treatment from our experience. We have our daughter in an in home ABA program. The U of M agreed that there has been definite progress since she started 8 months ago. She's gained a year of skills in that time. We have TEFRA and also pay the parental fee. Please pm me if you have questions.
I know different treatments work for different kids, but I would definitely try ABA if at all possible. We also do OT and ST outside of that. My daughter did a little early intervention in the Minneapolis school system originally after her school diagnosis, but they can't provide enough hours and we didn't see much progress. The teacher's heart was in the right place and they're doing the best they can, but we're using all our resources to go private. I would also suggest reading the article re: eclectic treatment vs. ABA on the University of Michigan BAAM website (as well as the WEAP article) and Catherine Maurice's books. Although her children must have been very high functioning to recover so quickly, IMHO. Still good reading though. It inspired me to look further than Fraser! I don't want to totally knock Fraser, I'm sure they do some good. We just didn't have the greatest experience.
Ann
This was in today's St. Paul Pioneer Press. The University of Minnesota is raising money for an autism center, and their vision is to be the leading autism center in the Midwest, with emphasis on research that shows which treatments are effective (as we all know, only ABA is proven effective at this point).
Here's the link:
Welcome to the forum, screaminge. I'm originally from Minnesota and spend one month a year here, but live in Norway otherwise. There are certainly other Minnesotans on this board. Here are a couple topics related to MN:
http://www.autism-pdd.net/forum/forum_posts.asp?TID=15834&am p;KW=Minneapolis
http://www.autism-pdd.net/forum/forum_posts.asp?TID=13938&am p;KW=Minneapolis
I don't know if you've heard about www.fraser.org -- they're in Minnesota.
You can find other Minnesota resources here:
http://www.yellowpagesforkids.com/help/mn.htm
Good luck with everything.
ScreamingE - there are at least a few of us here from Minnesota. I'm excited about this and hope it works out. I found it interesting that Minnesota insurers are concerned about the rising cost of services for autism - since I have YET to find an insurer who covers costs of services for them! Unless you count PT and OT - which is still often difficult to get covered if your child has a diagnosis of autism. Speech is also difficult to get covered under insurance if there is an autism diagnosis. And ABA isn't covered by any insurance I know of - only through Medical Assistance/TEFRA...That is great. I hope they can build it. We use UC Davis MIND Institute in Sacramento, CA and have had great experiences.HI,
I am very new and this is my first post. I live a few minutes from the U of M I was wondering if anyone is from MN. My DD is pdd-nos and just turned 2 on 7-7-7. I have been searching for help for 6 months ( when she stopped sleeping -screamed for hours and stopped eating)
She has been dx by a ped neuropsychologist then re evaluated by the school programs to help 0-3 year olds. When I called the U they said they would need to do their own testing and could fit us in NEXT July. I have found the search for Doctors to a long long long road and things are still slow. And I feel lucky to be in a large city with great autism help it's just how to get it!!!
We are an many waiting lists to get services for OT to admition to a day program ( they do not use aba - but sounds great a mixture of theropy )
We were dx using the bayley III and the vineland I have not read much from anyone about these.
I am glad to have found this board and hope to find some friends
Mom to the screaming e and her soon to be sister coming 7-12
Welcome to the board, ScreamingE! Maybe both your daughters will find some harmonizing in their voices later this month! Congratulations on your pregnancy! My boys are also 2 years apart, so I do relate. EVERYTHING gets easier after the youngest hits 2...the time will fly by.
Seems like you are in a good place for services - keep posting for local help and ideas from the board. It is full of wonderful parents.
Wishing you sleep and earplugs,
LeAnne
"We're trying, really, to get at the whole picture," said Dr. Michael Reiff, director of the university's clinical autism program.
The university is raising million toward the goal, with more fundraising anticipated for the future.
Autism is the nation's fastest-growing developmental disability. It afflicts an estimated 10,000 people in Minnesota.
Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests.
Some parents suspect a link between common childhood vaccines and the onset of autism, but scientific research has not established such a connection.
"Right now, we don't have anything that would be considered a cure, so it's no surprise that parents are looking for answers," Reiff said.
The university's interest comes at the same time Minnesota insurers are growing concerned about the rising costs of autistic children and the lack of research on the best ways to treat them.
"What's out there just isn't working," said MaryAnn Stump, chief innovation officer for Blue Cross and Blue Shield of Minnesota. The insurer intends to collaborate with the university
initiative.Among the university's goals is a registry of autistic children in the state that will be used to research trends in the development and treatment of autism.
Dr. Scott Selleck, director of the university's developmental biology center, said he hopes the university initiative will help bridge the divide between the medical community and parents of autistic children.
The university hopes to meet its initial fundraising goal later this year. Supporters Alfred and Ingrid Lenz Harrison have pledged a million matching grant.
While the university is prepared to start small, Selleck said it has a vision of becoming the Midwest's premier autism research institute.
He noted the MIND Institute at the University of California-Davis started small then grew to a 0 million center within seven years.
Selleck said, "Our objective is to have the comprehensive approach to this problem, equivalent to what they are doing, within that time frame."
I think you have to register in order to read the article. I can't remember by username so I haven't read it yet!
But WOOHOO Minnesota! I'm assuming this will be in the Twin Cities? HOORAY!