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Gary Weitzen  "TITLE: Finding Resources Where You Live -- an Unlocking Autism State Rep's Tips
www.talkautism.org covers Ron's unique approach to autism & telemedicine.
Thursday, July 11th at 7 p.m. (Eastern), Note portions of the text have been edited for spelling and grammatical errors, while other text with errors was left in tact in the context of the chat.
 

Rebecca{public msg} Hello and Welcome to our talkAutism Specialty Chat . If you have a question for our Host. Just type a "?" in the room. The names will be taken in order received. Please hold your questions until ready to post, when you are cued. Thanks!
Onegary {enters}
Rebecca{public msg} Welcome Gary
Moderator {public msg} WELCOME!
Moderator {action} . o O ( anyone want to get in line with questions? )
Onegary {public msg} hello Sharon, it seems to be working now, I just have to refresh often it seems to work ok
Ginac {public msg} yes
Onegary {public msg} I guess I should start by telling a little about my self.  I am married with three wonderful children.  my oldest son Christopher 8 yrs old has Autism.  I have been very active in the Autism community, board member of COSAC (largest autism group in NJ), vice
Onegary {public msg} president for tri-state CAN  (cure autism now)  board member of the PAT  Princeton Autism technology.  I work in the insurance field, but please don't hate me for that.  ha ha.  One the most important groups I belong to is Unlocking Autism.
Minseb {enters}
Onegary {public msg} What makes this group so special is that it is run by the parents and one of their biggest goals is to teach to advocate for your child and connect parents with other parents who have walked down this road of Autism.
Rebecca{action} caught the insurance joke...But perhaps that is good. You can work on getting insurance companies to take Autism more serious.
Rebecca{action}  applauds fervently.
Weya {enters}
Onegary {public msg} Rebecca, that is a long road, but yes that is something we are working on
Rebecca{public msg} If anyone has a question for Gary, Please post a "?" in the room.
Onegary {public msg} we must try to get Medicaid to cover autism treatment and then the HMOs tend to follow
Sharono {public msg} ?
Sharono {public msg} What does the unlocking autism group do?
Onegary {public msg} there is always a way around everything and working from the inside I can tell you the person that never gives up often wins
Naynay1234 {enters}
Ginac {public msg} "?"
Onegary {public msg} Sharon, UA has a group of parents nationwide and other countries who are strong advocate for their children and no the autism ropes
Onegary {public msg} they connect you up with these parents and it is all about networking
Sharono {public msg} ?
Onegary {public msg} The three most important things that must do to get the needed services for your child are 1) Network
Onegary {public msg} 2) Get organized
Onegary {public msg} 3) Preserver -  Never give up!
Onegary {public msg} I live in NJ which may have some of the best services for Autism, but I am always shocked by the lack of information that most parents have about these services
guest210 {enters}
Sharono {public msg} Will they help me find a school and a good doctor for autism?
Iceecrew {enters}
Onegary {public msg} please all excuse my typos tonight,  Chris is sleeping on my lap
Rebecca{action} . o O ( Not a problem Gary ;o) )
Onegary {public msg} One of the biggest mistakes that parents make is not to take advantage of non Autism services that are available to you.  I get respite through the Epilepsy foundation, horseback riding from the ARC and camp through the DDD.  So many parents that I know have very involved children and there are not even registered with DDD.

Minseb {public msg} How can the schools help parents access supports out there?  How can we know where to send them for help?
Onegary {public msg} ;-)  ok it  is not that much better when he is not sleeping on my lap lol
Rebecca{action}  goes LOL (Laughs Out Loud).
Moderator {public msg} We will get to all your questions in just a few moments.
Onegary {public msg} Minseb, good question
Onegary {public msg} the first thing is to know the services that you have in your state.  I would start by looking at the expert find section of talk autism
Naynay1234 {enters}
Rcatuh {enters}
Onegary {public msg} every state has basic services required by law,  parent centers, DDD, P & A  , tech centers  start there
Onegary {public msg} the parent must first know what do they need.  My needs may be very different from another parent.  do I need reprite, tech help, money, services
Onegary {public msg} once you know what you need, you go after that.
Onegary {public msg} I would also suggest that everyone joins their local Autism group  such as ASA, FEAT, COSAC or any other active group in your area
Minseb {public msg} thank you, the "expert search" is something I didn't know about, but know I'll be using in the future.  Thank you!
SSG {enters}
guest215 {enters}
Drumtygrr {enters}
Minseb {enters}
Onegary {public msg} It is often these local Autism groups that will give you the most support, yes there is the emotional side, but I am not talking about that.  What doctor do you use, how do I give him his meds?  stuff like that
Sharono {public msg} Is it common for states to give families money for the need of the child ?
Sharono {public msg} and if so how?
Joel {enters}
Chet {enters}
SSG {public msg} ?
Macko {enters}
Moderator {public msg}  Ginac has a question for you one Gary
guest217 {enters}
Onegary {public msg} yes, it is common but you have to know where to look. Most states have stipend funds that you can get every two years , we got $2,600 this year, we also got camp paid for, reprise for $150 a month
Onegary {public msg} as I mention earlier one of the biggest mistakes parents make is sticking only with the Autism groups, we get money and services from the ARC and Epilepsy
Onegary {public msg} Ginac yes
Drumtygrr {public msg} ?
Onegary {public msg} SSG, sorry did not see your question earlier
Tue Jul 23 21:17:15 2002 Joel {public msg} ?
SSG {public msg} ? sorry for mix-up- where/ who do you speak with to find out what services are available in each state?
Haker {enters}
Onegary {public msg} I touched on this earlier,  contact the local ASA chapter or other local autism group and network with parents.  they are the ones that know,  get on mailing list of all the government agencies serving the handicap not just autism
SSG {public msg} ? how can you find out how your state compares to other states? and what if your local groups are lacking?
Aardvark {enters}
Onegary {public msg} as far as the stipend money it is rated on a score and you have to know how to fill out the form to get the most money
Onegary {public msg} SSG, that is a hard question  some states are just better, NJ being one of the best-  but so often it all is about what town you live in.  yes  I get a bunch of services, but if NY son is a wrong program nothing else matters
Onegary {public msg} I would talk to parents on line and connect with the girls at Unlocking autism.org to speak to people in other states
SSG {public msg} exactly how do you find out what is the right program!!! Help
Onegary {public msg} SSG,  that is the million dollar question  how old is your child?
SSG {public msg} 2 yrs 9 months
SSG {public msg} he is in the Emory Walden program
Onegary {public msg} remember you are the biggest expert in your Child's life.  you know more than all the doctors and child study teams rolled into one
Onegary {public msg} The one book that you must have is 'From Emotions to Advocacy"  by Pam & Peter Wright.  Please check out their website www.wrightslaw.com  they have so much information that will definitely help you help your child.
SSG {public msg} Yes yes yes- but I only know what is offered and what if what is offered in my state is lacking
cecpurr {enters}
Onegary {public msg} as far as to the program there is no one answer,  ABA, VB, pecs, facilitated comm. all work for some children
Moderator {public msg}  guest217 you have a question?
guest217 {public msg} Is my 7 year old autistic son eligible for social security disability?
Onegary {public msg} You need to know the different choices, network with parents, visit schools and often take matters into your own hands
tigar {enters}
Mahmom {enters}
Onegary {public msg} guest, no  no until he is 21.  he is eligible for an education until that time plus other moneys as mention earlier, but ssi starts when he is 21
Onegary {public msg} guest 217 register with the DDD to get the monies he is entitled to now
Moderator {public msg} I thought ssi starts at 18
Weya {public msg} ?
guest217 {public msg} I have. Thanks
Naynay1234 {public msg} what's DDD?
Mahmom {public msg} ?
Onegary {public msg} Developmental Disability Department  or DDC  council
vkj337 {enters}
Minseb {enters}
guest217 {enters}
Onegary {public msg} every state has one their contact info is listed on expert find at talk autism.org
Chet {enters}
Onegary {public msg} Lets recap some of the info for the newcomers.
Drumtygrr {public msg} I'm having major problems with behavior, and have been thru a few behave spec. not much help,  very aggressive/lovable too, unpredictable...she's 3 yrs old and it's torture on her 4 yr old sister. any suggestions,
Onegary {public msg} register with DDD, get on the mailing lists for all the disabilities groups in your area and not just the autism groups
Cecpurr {public msg} } Can anyone give suggestions?
Onegary {public msg} reach out to the local ASA chapter or any other active autism group in your area COSAC here in NJ as the parents that are active will help you more than anything
Haker {public msg} I have done a lot of research on mercury poisoning.  My autistic son is now 4.  I would like to know there is scientific proof that he has been poisoned if that is what my doctor tells me.  Is that proof available 3 years after shots were given?
Onegary {public msg} drum we have been there.  Have you done an ABC to see why the behavior is happening?
ladybug {enters}
Cecpurr {public msg} } For the aggression, I would try the gluten, casein free diet, cut out artificial flavors and colors.
Drumtygrr {public msg} Yes, we've been thru that, some of it there is no reason for and looks like it's coming from inside, like something physical, we've collected much data
Aardvark {public msg} And behavior modification doesn't help at all?
Drumtygrr {public msg} can be hugging and kissing you one minute than all of a sudden...BAM!! your face is raked and bleeding, with no warning
Onegary {public msg} We found for Christopher that a good sensory diet works great.  plus allot of  physical exercise
Drumtygrr {public msg} we've tried time outs, basket holds, social stories etc
Cecpurr {public msg} } Sensory diet also works for my son Christian
Onegary {public msg} drum,  we had that with Chris-  hugging then smack
Minseb {enters}
Aardvark {public msg} Helpful for my daughter too... a swing, crash cushion, trampoline etc
Cecpurr {public msg} } Allot of pressure and brushing
Mahmom {public msg} What is a crash cushion?
Drumtygrr {public msg} yes, I am a firm firm believer of sensory integration, it does help
Onegary {public msg} I have many suggestions and can talk more off line, but one thing that worked great for us as Chris was brutal on younger brother was this
Aardvark {public msg} a duvet cover stuffed with foam pieces, for deep pressure
Drumtygrr {public msg} I'm totally listening
Onegary {public msg} we have trampoline which he loves.  all 3 of us go on.  we do special jump with this and then ask him to hug Matthew, or make nice pairing him with the reinforcer.  it help

Moderator {public msg}  Joel has a question
Aardvark {public msg} That sounds like a great suggestion-- the trampoline idea
Rebecca{public msg} One of Talk Autism's Previous Hosts> Nutritional Management in Autism: Taking a Systematic Approach".
Joel {public msg} when you where talking about the $$ where you talking about the Ed Grants ?
Onegary {public msg} we roll Chris up in a blanket and call it sausage roll.  he loves it and ask for it.  he has learned to self regulate
Drumtygrr {public msg} yes, we are trying to scrape up some money for a trampoline, and I would love to talk to you offline on this subject, we've been desperate....thank you
Onegary {public msg} Joel, not the Ed grants but that is out there as well.  about money what is out there is this
Macko {public msg} ?
Onegary {public msg} cash stipend, money for camp, money for therapy, money reprite, money for the parent to go to autism conferences, money for tech items
Onegary {public msg} drum, you are welcome and by the way we started with jumping on the bed, ok so we broke to box springs lol
Drumtygrr {public msg} LOL we do that now

Moderator {public msg}  Ginac has a question
Onegary {public msg} yes Macko
Macko {public msg} Do you know of any $$ for medical tests? Much of the DAN protocol isn't covered by anything.
Drumtygrr {public msg} please let me know how to contact you, thanks again
Onegary {public msg} trampoline at Sam's club with walls  (must have)  $380
Wawa {enters}
Onegary {public msg} drum my email is Onegary@aol.com
Sharono {public msg} $ for medical tests, not too sure.  Heard there is a new study where you can get vitamin therapy free or at low cost
Sharono {public msg} contact autismresearch@asu.edu for more info...
Macko {public msg} thanks
Wawa {public msg} ?
Onegary {public msg} Macko, hard question  we got some of the Dan test covered by appealing.  all the blood work should be covered it is the urine and bowel movement we had trouble with
Ginac {public msg}I live in the state of Massachusetts and I currently get help from Community Resources for people with Autism, Family Ties, and the Federation for Children with Special Needs, is there anything else I am missing out on for my son? Also why is it that Medicaid is so difficult when you request diapers even though they cover them, and you have to go through so much red tape and aggravation?
Cecpurr {public msg} } I know that some of it is covered by medical insurance, but you have to do the filing.
Macko {public msg} that is our experience too Onegary, thanks
Onegary {public msg} you have fight and often it is the way the doctors requests it,  what's that you say you child has severe food allergies  ok lets pay this test
Onegary {public msg} Ginac, welcome to government  the red tape is awful-  much of it is the way you send in the paperwork I find.  it sounds like you are getting help from some good groups but there are others
Joel {enters}
Ginac {public msg} what are they
Onegary {public msg} look at expert find for mass, and do not only look at the autism groups the others may have more money
Haker {public msg} Was there an answer to the mercury poisoning?
Ginac {public msg} thanks Onegary I'll do that
Moderator {public msg} if you have one I will be happy to add you to the list
Onegary {public msg} cecpurr you are right, often it is not covered that is why it is so important that we get all the money we can from other sources.  I feel parents of Autism pay more out of pocket than any other group
Ginac {public msg} I agree

Moderator {public msg}  Weya you are next
Haker {public msg} My son is 4.  Is there scientific proof of mercury poisoning 3 years after shots have been given?
Weya {public msg} I keep hearing about moneys being out there.  How do I find it? My son was diagnosed last week, and I have no idea how to find the $$ to pay for what he will need now.
Onegary {public msg} Weya, contact you local DDD or DDC and get the paperwork moving  the quicker you get started the quicker you can get money
Weya {public msg} is that it? they will put me in touch with all the resources?
Weya {public msg} please don't tell me my local ASA chapter, because mine is not active
Onegary {public msg} Haker, many say yes  send me an email to Onegary@aol.com and I will hook you up with some very good resources
Haker {public msg} Have you heard of Dr. Stephanie Cave?
Onegary {public msg} Weya, no that is not it, you have allot of work to do The one book that you must have is 'From Emotions to Advocacy"  by Pam & Peter Wright.  Please check out their website www.wrightslaw.com  they have so much information that will definitely help you help
Cecpurr {public msg} } Onegary, Can I e-mail you for the same info on mercury poisoning
Weya {public msg} thanks Gary
Onegary {public msg} you have to get organized now,  that is the biggest help and most parents do not do this.  we get so much paid and so many services from our schooled because I am a pain in the butt and will not go away and have the facts to back me up
Moderator {public msg}  Are there any more chatters that have questions please just type a ? and I will add you.
Mahmom {public msg} ?
Naynay1234 {public msg} ?
Onegary {public msg} Haker, yes I know they name, there are many sources to help.  I am VP of tri-state CAN and they have funded much research into the area
Iceecrew {public msg} ?
Onegary {public msg} Mahmom yes
Mahmom {public msg} It seems the problems with insurance and the DAN protocol are pretty common, it seems to me given the numbers of autistic kids
Onegary {public msg} sorry for my slow typing
twinkle {enters}
Mahmom {public msg} that insurance companies should be strong armed by us
Mahmom {public msg} I'm prepared to fight for my sons right to health care
Cecpurr {public msg} } I need a specialist who can do the testing and should we be in touch with a lawyer, after seeing all the TV adds, I am still not sure if I should call
Mahmom {public msg} is it a losing battle?
Macko {public msg} it's a constant battle for sure
Onegary {public msg} Mahmom, I work in insurance and we are bad.  You will see changes in the coming years for coverage for these issues many groups are working on this, but years away until then you have to fight and fight and know that everything will not get covered

Mahmom {public msg} My insurance covers add and adhd but not autism
Onegary {public msg} Macko, no losing hard , but you have to take the little victories

Onegary {public msg} Naynay yes
Moderator {public msg}  Naynay you have a question
Iceecrew {public msg} what does the acronym DDC stand for?
Cecpurr {public msg} } ?
Mahmom {public msg} ?
Onegary {public msg} Mahmom, it is my sore spot insurance and as mentioned earlier they way we are working on that is to get Medicaid to cover it, then the HMOs will follow
Naynay1234 {public msg} can I also get info about mercury and attorneys?
Naynay1234 {public msg} and ED grants?
Onegary {public msg} developmental disabilities council
Naynay1234 {public msg} right, thanks
Onegary {public msg} cecpurr yes

Moderator {public msg}  Iceecrew you have a question
Cecpurr {public msg} } thanks
Mahmom {public msg} thanks
Sharono {public msg} ?
Onegary {public msg} you are welcome and anyone can email me at Onegary@aol.com
Onegary {public msg} whose next?
Moderator {public msg} icee
Rebecca{public msg} Gary, can you continue longer than the one hour scheduled?
Iceecrew {public msg} thanks
Onegary {public msg} yes
Rebecca{public msg} Ok, Thank you Gary.
Mahmom {public msg} Gary can you come live with us and help me!;)
Onegary {public msg} Mahmom  lol, I mentioned earlier the three most important things but there are two more
Onegary {public msg} Take time for yourself  5) Have a sense of humor.
Mahmom {public msg} YES!
Onegary {public msg} we love Chris so much, but his autism while very hard is so very funny and my wife and I have gotten to the point where we laugh instead of crying
Moderator {public msg}  cecpurr do you have another question?
Drumtygrr {public msg} looking forward to taking time for myself someday....but for now...humor is my best friend!!! :)
Cecpurr {public msg} } Why do insurance companies refuse to pay for therapy for autistic children. This is my 3rd insurance through my husbands work and none of them will pay anything. it all falls onto his medical assistance.
Moderator {action} . o O ( sometimes that is the only way to get through the day...LAUGHTER )
Mahmom {public msg} Thomas Jefferson was suspected to have had Asperger's. My favorite quote is from him..."When you feel that you have reached the end of your rope, tie a knot and HOLD ON!
Cecpurr {public msg} } I was told by one company that if he was in a car accident and had a head injury it would be covered, but because he is diagnosed autistic it is not covered
Onegary {public msg} drum,  yes  but you got to take time for yourself. and here is suggestion.  We found another family with a child with Autism same level as Chris and we take turns once a month watching each others child just to get out.  it is needed and will help your son
Mahmom {public msg} Same here cecpurr, I've prepared a "manifesto" to throw at 'em, I may lose the fight, but I'm going down fighting!
jdrisc {enters}
Naynay1234 {public msg} ?
Drumtygrr {public msg} we are in the process of looking into some kind of respite now, for awhile she was so attached to me I couldn't even go to the bathroom, let alone leave her anywhere
Sharono {public msg} I heard Indiana got a state law passed requiring insurance to cover autism as a medical condition
Cecpurr {public msg} } What can you do is it is specifically listed in the contract
Onegary {public msg} cecpurr that is true they look at it is trauma to head then yes it is covered  just stand by that.  but you can fight speech coverage and often win
Mahmom {public msg} Thanks to Burton, Sharono
Sharono {public msg} you're right
Onegary {public msg} we also get his homeopath covered at 100% and he works great
Sharono {public msg} but other states could use that precedent, right?
Mahmom {public msg} yes, unfortunately my congressman has been expelled from congress, he isn't much help to me.
Moderator {public msg}  Mahmom you have a question
Mahmom {public msg} Yes,
Cecpurr {public msg} } Some sort of trauma had to cause autism, so why wouldn't that be covered.
Mahmom {public msg} My son has huge problems with textures of foods
Macko {enters}
Mahmom {public msg} How can I possible do the GFCF when he won't EAT?
Onegary {public msg} I find if you compose a note stating the medically necc for treatment and give to your doctor to place on his letter head it often gets paid.  yes my doctor takes my notes, I don't put anything outlandish in note if needed my wife cries and he always fill
Mahmom {public msg} lol, she cries? to the doc?
Cecpurr {public msg} } My son has been on the diet for 2 years and you have to learn to make foods he likes. Then he will gradually increase is variety.
Moderator {public msg}  Sharono you have a question
Onegary {public msg} yes, she cries to the doc, if you are crying never hide it, never wipe your eyes just let the tears flow,  most people will note refuse you at that point it is to hard.  t is true
Sharono {public msg} You said Tech Centers and P&A before... what would one use them for?
Mahmom {public msg} Alex likes, milk and cookies, eggs, cheese, and cereal...that's IT!
Cecpurr {public msg} } My son lives on pretzels, I now make a GFCF corn free yeast free pretzel sticks and he loves them ( a lot of work)
Mahmom {public msg} ok Gary, I can definitely do that
Mahmom {public msg} Really cecpurr?
Cecpurr {public msg} } You need to read Unraveling the mystery of PDD and autism that will explain why he restricts himself to those foods, He is addicted to them almost like a drug.
Naynay1234 {public msg} can I have the recipe for the pretzels?
Onegary {public msg} P 7 A are the protection and advocacy centers used to fight for the legal rights for your child.  they have lawyers for free that help you, most have programs teaching you your rights and have very helpful newsletters
Mahmom {public msg} I've read it.  I understand it, I just can't apply it to Alex
Mahmom {public msg} We tried, maybe I'm too soft
Rebecca{public msg} Gary, Didn't Mrs. Jones say Milk is a proven no no for Autistic Children?
Cecpurr {public msg}  sure e-mail me at c.camp4@verizon.net
Mahmom {public msg} It broke my heart to have him go hungry
Onegary {public msg} tech centers help with tech devices like dynovox  sp? and computers most services are free.  I made one phone call to the local P & A to get a child a dynovox for house and got it right away it is all about knowing who to call
Onegary {public msg} you have to network
mahmom {public msg} When he has a fever, he will vomit any meds, I have to give him cool baths and hope the fever subsides, he can be very stubborn
Sharono {public msg} wow.  thanks
Moderator {public msg}Naynay you have a question
Cecpurr {public msg} } he will eat when he is hungry.  Milk is a definite no.  Have you tried Yummy Bears.  They are like fruit snacks and my son eats them like candy
Naynay1234 {public msg} any advice on therapies, have you tried ABA or PLAY?
Mahmom {public msg} Yummy Bears?  At health food stores?
Onegary {public msg} Rebecca, yes milk is bad for children with autism and many doctors feel for all children  cow milk that is
Rebecca{public msg} One of Talk Autism's Previous Hosts> Nutritional Management in Autism: Taking a Systematic Approach".
Rebecca{public msg} There is the transcript of her Chat here if anyone missed it
Onegary {public msg} therapies tried them all.  it is all about what works for your child.  we started with ABA but to hard with Chris we now use vb verbal behavior and have seen great strides but no one answer
Cecpurr {public msg} } yes at health food stores or on the internet.  Vitaglo.com or yummibear.com
Rebecca{public msg} VERY informative nutritional information
Onegary {public msg} for the gccf diet great web sites out there  email if you need them
Mahmom {public msg} I have to give the gfcf another Serious try, And STICK to it this time!
Onegary {public msg} my supermarket has entire isle of cfcf products
Cecpurr {public msg}  ABA has been a life saver for my son Christian, I believe he wouldn't be talking today without it.
Mahmom {public msg} I have it Gary thanks, I just need to DO it
Cecpurr {public msg} The diet is a difficult thing but worth the hardship.
Onegary {public msg} Mahom, it is hard and not everyone sees the results  you can start small by getting him to eat a few foods on the diet at first
Jjdjhdd {enters}
Mahmom {public msg} thanks, I'll do it.
Moderator {public msg}  that is the end of the questions I have for you Onegary
Cecpurr {public msg}  thank you, Onegary
Mahmom {public msg} cecpurr how old is your son?
Cecpurr {public msg}  6
Mahmom {public msg} thank you Onegary
Sharono {public msg} thanks Gary, great info!
Rebecca{action} wishes everyone of you well on your journey ;)
Naynay1234 {public msg} thanks onegarey
Mahmom {public msg} I have your E-mail I'll be in touch
Rebecca{public msg} Thank you Gary for you time!
Onegary {public msg} you guys have been great and please feel free to email with any questions at Onegary@aol.com and please check out the expert find section of www.talkautism.org
Cecpurr {public msg} } great
Jjdjhdd {public msg} thanks Gary showed up too late
Moderator {public msg}  we hope to have you back again soon
Rebecca{public msg} They can Visit the talkAutism Discussion Board anytime also!
Rebecca{action}  smiles.
Drumtygrr {public msg} thank you so much for your time, and best wishes for you and your family
Rebecca{public msg} there you could all bond together & combine support
Mahmom {public msg} will do Rebecca, thanks
Cecpurr {public msg} } they are college graduates working with an agency call New Hope of PA
Onegary {leaves}talkAutism.org

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