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Gary Weitzen
"TITLE:
"Getting Resources Locally(UA, CAN)".
Tuesday, March 11th
at
9 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 Speaker, "Gary Weitzen- Getting Resources Locally(UA, CAN)", Just type a “?” in the room. The names will be taken in order received. Hold your questions until you are cued by the Moderator. Also, Please keep chit chat down to a minimal, unless ok'd by the Host. Thank You and enjoy your stay!
Hdc {public msg} ?
Hdc {public msg} but not about resources....LOL
Rebecca {public msg} ok, lets give a few more minutes before we begin.
Rebecca {public msg} hi Ron
Moderator {public msg} evening Ron
Ron {public msg} sorry I'm late folks, computer froze at the wrong time.
Rebecca {public msg} no problem, we are giving a few minutes.
Onegary {public msg} A little background about me. I am married, parent of three wonderful children- My oldest son Christopher has Autism- Today is his 9th birthday. We have come so far with christopher- He is just great- I have been one of the crazy parents that have been into everything. I am the VP of the tri-state chapter of Cure Autism Now, VP of PAT Princeton Autism Technology, plus i sit on a few Autism group boards and member of NJ Governors Council for Biomedical Autism Research- education committee chair. My love is working one on one with parents getting them resources, getting them help and getting them impowered.
Hdc {public msg} Happy Birthday Christopher :-)
Ron {public msg} Christopher's birthday Today??? Oh , thanks for joining us.
Onegary {public msg} He was very happy- yes today- this was his 3rd party this week
Ron {public msg} we won't hold you too long Gary -- for Chris' sake
Rebecca {public msg} really Gary! Thanks & Happy Birthday to Christopher!
Ron {public msg} Mardi Gras season for birthdays, huh?
Moderator {public msg} lol Happy Birthday.
Onegary {public msg} He is playing with all of his new Thomas the tank engine trains.
Moderator {action} . o O ( I like Thomas )
Moderator {public msg} hello mommy
Rebecca {public msg} hi mommyo
Rebecca {public msg} hi Cyn
Moderator {public msg} hi Cyn welcome
Cyn {public msg} hi, everyone!
Moderator {action} . o O ( we will be starting very shortly )
Ron {public msg} ?
Onegary {public msg} yes Ron
Moderator {public msg} you ready to start gary?
Onegary {public msg} yes, please
Moderator {public msg} Hdc you have the first question
Hdc {public msg} my daughter (5 in april) has always had some interesting behaviors, part of which I know are very autistic traits. We were just told that she *might* have a *brush* of autism. I realize autism is a broad spectrum, but was wondering what information there is about the high functioning part of autism.
Onegary {public msg} There is alot of information out there- what are her issues- how are her social skills?
Hdc {public msg} sensory mainly...things like walking up and licking strangers pants...
Hdc {public msg} socially she does well one on one...or perhaps one on two....but in a group she will play around them but not with them.
Hdc {public msg} she is very verbal as wel.l
Onegary {public msg} There is a great deal of info out there on sensory diets- A book called "the out of sync child" is a great place to start- socially we can work on as well-
Hdc {public msg} I have read the out of sync child....I decided they used her as their model.
Onegary {public msg} yes, Autism is a spectrum- but all the kids are related- and how we teach them is similar, just geared to their level.
Onegary {public msg} Hdc lol
Onegary {public msg} People do not pay the respect to the ot's that they derserve.
Hdc {public msg} we can't get one to work with her....those that want to are blocked because of insurance.
Hdc {public msg} because she has no diagnosis...
Onegary {public msg} A good ot will go a long way with your daughter and you need to address issues in her iep.
Hdc {public msg} and the school district one just left...the new one doesn't see in her what I do.
Hdc {public msg} she hides things very well until she is comfortable in a situation
Onegary {public msg} That is a road block- does she get any special services at school?
Hdc {public msg} my son was in early intervention...the old OT saw Charlet in our home doing "her thing".
Hdc {public msg} and worked off of that a lot.
Onegary {public msg} Can the school do a needs assessment for her.
Hdc {public msg} found other places for her to qualify for services...
Hdc {public msg} The new OT said "I don't that she has a problem and can't justify services right now".
Hdc {public msg} It's been a frustrating year.
Onegary {public msg} Have you every read Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide. This is a must have book. From Emotions to Advocacy (FETA) is more than a book! The companion website at www.fetaweb.com> has dozens of articles, checklists, directories, and resources that supplement the book.
Hdc {public msg} I haven't...but will.
Hdc {public msg} I feel totally helpless, because I do a lot of parent advocacy. stuff...on.the tri-chair for the early intervention parent committee...I feel like if anyone could get things done it should be me.
Onegary {public msg} I can't stress this book enough- they can help in so many ways- one is to get the school to deal with a student on the fringe of needed services.
Hdc {action} has bookmarked the site already.
Hdc {public msg} thanks for you help....she is calling for her bedtime drink so I am going to scoot and let others have a turn.
Onegary {public msg} Thanks Hdc
Moderator {public msg} Ron you have a question.
Ron {public msg} In general, in your opinion -- what's the 'killer resource' out there which our autism community underutilizes? good luck Hdc.
Onegary {public msg} I must say www.talkAutism.org it is the largest resource out there
Rebecca {action: Ron} applauds Ron fervently.
Rebecca {action} Smiles.
Ron {public msg} I didn't mean to lead you that way.
Moderator {public msg} lol
Ron {public msg} But if you must...lol
Rebecca {public msg} lol
Ron {public msg} No, i mean,
Rebecca {public msg} ?
Ron {public msg} You have taught me personally about aucd's, epilepsy orgs helping autism, etc. on and on...,
Onegary {public msg} Aside from that, the biggest mistake a parent makes is to stick with simply Autism groups- they tend to ignore groups like the ARC, etc.
Ron {public msg} yes, exactly Gary...
Moderator {action} . o O ( what is ARC> )
Ron {public msg} We need parents to know this.
Mommy-0 {public msg} ?
Onegary {public msg} There are so many groups out there that we ignore, we must register with the DDD, sign up for cash stipend, resprite, contact local LRC and tech centers.
Ron {public msg} How many people are tapping into their state DDD for stipends or services? it took my family 6 years to finally do it, and now it's so appreciated.
Moderator {action} . o O ( what is DDD? )
Rebecca {action} Listens.
negary {public msg} Disability council- every state has one by law.
Ron {public msg} Gary -- you also told me offline about P&A's... what can they help us with?
Ron {public msg} And yes, all of these specific resources are searchable on ExpertFind
Ron {public msg} Thanks to folks like Gary and many others.
Onegary {public msg} p&A's are the public advocate- free service providing law help, support and advocacy for your child, another under used resource.
Ron {public msg} can they provide free legal counsel?
Onegary {public msg} Yes to a limited extend- most have pro-bono attorneys but limited.
Onegary {public msg} They all have classes, workshops and provide very valuable resources.
Cyn {public msg} ?
Ron {public msg} Uh gotcha... thanks for your good answers, and thanks for helping a lot of famillies.
Onegary {public msg} Thanks Ron
Moderator {public msg} Rebecca you have a question.
Rebecca {public msg} Where would i send someone, like the friend I described earlier, from way up in the hills of Kentucky for best resources and diagnoses. She was saying its a 3-5.5 hour drive for one of the best. Her son age 7 doesnt handle long rides that well.
Rebecca {action} . o O ( I tried to convince her to move, lol, but no go )
Ron {public msg} Gary - can I help answer, and put a plug in for telemedicine?
Moderator {public msg} lol
Onegary {public msg} PAT and others are working on tele-therapy which should be able to help in the future- We already work with a therapist- 300 miles away by video tape.
Onegary {public msg} yes Ron
Rebecca {public msg} Let me give a little bit more background on what she has been through in 6 years with her son.
Ron {public msg} Rebecca -- have your friend post on ExpertFind Help Wanted for a doctor who will accept videos, email etc. of her child's problems... some doctors accept this as medical information already, and in some cases, can be even reimbursed.
Rebecca {public msg} To date, he has been diagnosed with PDD-NOS, then went to mild autism....(this doctor told her it was the same thing as PDD-NOS) ADHD, ODD, OCD, DD, and maybe LD and now Tourettes & Aspergers.
Rebecca {public msg} Wow Thanks Ron, I sure will.
Onegary {public msg} In my case we get it paid by the insurance company every time.
Rebecca {public msg} She has posted today in talkautism message boards too, if someone with knowledge on this could go look for it, Her name is Pagey.
Rebecca {public msg} Thanks!
Ron {public msg} also, go on PAT's website (www.autismtechnology.org ) look at PAT projects under Telemedicine.
Rebecca {public msg} Will do, thanks.
Ron {public msg} thank you Rebecca
Moderator {public msg} Mommyo you have a question.
Mommy-0 {public msg} Do you know how or where parents can recieve funding to do alternative treatments?
Onegary {public msg} This is a hard question- or should I say it is a hard answer- It is hard enough getting money for accepted therapys, but here it goes- make it eask for the insurance company to pay a claim- have letters signed by dr stateing why needs- hint- type letter yourself.
Onegary {public msg} Always, always , always contest the insurance company that will not pay, argue, argue, argue.
Mommy-0 {public msg} What is an important contact for a parent to make?
Onegary {public msg} I work for an insurance company and often we pay claims to shut up a customer.
Rebecca {action} Smiles.
Moderator {action} . o O ( sure hope gary was not one I fought with )
Mommy-0 {public msg} Thanks for the inside info.
Onegary {public msg} Thanks
Onegary {public msg} The most important contact you can make is one with other parents. You must join your local Autism group- such as ASA Autism Society of America, COSAC (here in NJ), ASPEN, FEAT. There you will meet other parents that have gone before you. You are not walking the road alone, so many have experienced what you are going through. Most also have newsletters that keep you up to date on what is going on.
Mommy-0 {public msg} I agree with you, Thanks for everything.
Onegary {public msg} My pleasure- I hope it helps.
Moderator {public msg} Cyn you have a question.
Cyn {public msg} In Calif are our Regional Ctrs considered the "DDD" ? thanks.
Onegary {public msg} Address: PO Box 944202 , Sacramento, California 94244-2020.
Onegary {public msg} The California Department of Developmental Services (DDS) is the agency through which the State of California provides services and supports to children and adults with developmental disabilities. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and related conditions.
Hdc {public msg} Regional centers in CA are Early Intervention in other states.
Hdc {public msg} Sorry, didn't mean to butt in.
Onegary {public msg} Thanks Hdc- we are one.
Ron {public msg} sounds right, Hdc...
Rebecca {public msg} Can you post the one for Kentucky? Please? If there is one?
Onegary {public msg} Titles will vary by states but services are the same
Cyn {public msg} ty, Hdc and gary!
Hdc {public msg} I have a friend who is a social worker in CA...I couldn't believe she hadn't heard of Early Intervention...until I realized it was just under a different name.
Onegary {public msg} Address: 100 Fair Oaks Lane 4E-F, Frankfort, Kentucky 40601-0001 Kentucky Developmental Disabilities Planning Council.
Rebecca {public msg} Thank You!
Phrogger {public msg} ?
Ron {public msg} wow Gary -- where you getting this from (LOL)?
Onegary {public msg} Web site www.kddc.org/
Onegary {public msg} Ron, from expert find of course.
Moderator {public msg} Phrogger you have a question.
Phrogger {public msg} For parents with children who have autism is there truly a big need for specialized child care?
Phrogger {public msg} My roomate is a preschool autism teacher and I am just a mom.
Onegary {public msg} Phrogger, yes- depending on level of Autism.
Phrogger {public msg} And we are wanting to start a childcare.
Phrogger {public msg} But not sure if there is enough of a demand to really warrent it.
Onegary {public msg} Our kids are great, but you must know how to teach them-
they can do anything.
Mommy-0 {public msg} You will do very well starting an after school program for autistic kids.
Onegary {public msg} Phrogger- huge demand!!!
Rebecca {public msg} Phrogger, check the past talkautism transcripts and you
will truly learn allot about their need for special care.
Ron {public msg} IN GENERAL, specialized day care for autism is very much needed, even outside of normal schoolhours.
Phrogger {public msg} Like i said this is what she does.
Phrogger {public msg} But she is tired of teaching with the budget cuts etc.
Cyn {public msg} ?
Phrogger {public msg} I just hope i can learn enough to benefit not hinder.
Mommy-0 {public msg} Where are you located.
Phrogger {public msg} San diego but we are moving to las vegas.
Onegary {public msg} Phrogger we thought about doing this ourselves- my wife and others cannot work outside of the house because we must be here for our son- most day cares cannot meet his needs.
Phrogger {public msg} That is what she was thinking.
Phrogger {public msg} Even if it is sometimes just weekends for a break.
Onegary {public msg} Las vegas- just outside was picked as the best place to raise a family.
Phrogger {public msg} Yep that is what I am finding out and cheap. :)
Phrogger {public msg} Summerland and henderson are supposed to be great :) I just want some type of job I would enjoy and casinos are NOT it.
Moderator {action} . o O ( Phrogger it is a very demanding job, burn out ratio is high. )
Onegary {public msg} Phrogger- a suggestion- contact an established daycare center and talk about after school or week end program- if you have background they may go for it- or start social skills or play group for our kids.
Phrogger {public msg} I will talk to the roommate about it, she is just about finished with her masters in special ed and wants to quit teaching but still wants to be in the field.
Moderator {action} . o O ( what about starting out as a licensed respite home )
Rebecca {action} . o O ( Phrogger is the sweetest type of person. She even surrogate'd for a couple that could not have children. Shes perfect for this! ((HUGS PH)) .
Phrogger {public msg} lol thanks Rebecca.
Phrogger {public msg} I am certified to be a preschool teacher but not special needs.
Phrogger {public msg} But I think I would have more enjoyment with this, seeing a change or at least trying.
Rebecca {public msg} Any other questions for Gary?
Moderator {public msg} Cyn has one.
Cyn {public msg} In re: PAT's telemedicine .... what %-age is happening "real time" ??
Onegary {public msg} Ron- want to field
Ron {public msg} We started thinking realtime would be majority of usage...
Ron {public msg} But now it's tunring out that store and forward is much more appropirate for our community needs.
Cyn {public msg} ?
Ron {public msg} real time needs doc to have appt. set, have access to videoconference
Moderator {public msg} Ask away Cyn
Phrogger {public msg} What is that?
Ron {public msg} Store and forward should be just about as useful.
Cyn {public msg} What's the avg. "turn-around" time on the "store and forward" .... on the therapist’s end?
Ron {public msg} Parents determine what vdieo clips, still pix are what they want to communicate to doc.
Mommy-0 {public msg} The doctor can view the video's at their own convience or immediately if needed.
Ron {public msg} ah... therapists a slightly differnet story.
Ron {public msg} Store and forward still helpful for kids who have probelms, and a local aide or therapist needs help handling this.
Cyn {public msg} ty
Ron {public msg} Video clip the episode, store on computer until behviroist is avialable or email to server for that person toreview immediately.
Ron {public msg} Of course, most of this is in theory, and needs to be piloted.
Ron {public msg} PAT is interested in both real time and store and forward.
Ron {public msg} And see where the benefits pan out.
Mommy-0 {public msg} The new stored data becomes a great digital file or background for the future, and may be used for better research.
Cyn {public msg} I think it would be enormously useful and helpful.
Ron {public msg} Our kids will eat up life on a video conference if done right, I believe.
Rebecca {public msg} Onegary, Thanks for your time & Ron, thanks for the assistance.
Ron {public msg} Let's let Gary get back to his son's birthday. thanks so much.
Moderator {public msg} Yes Gary and Ron as always you make the hr fly by fast.
Cyn {public msg} Thanks GARY !!
Onegary {public msg} Thank you all so much for your time.
Hdc {public msg} Happy Birthday to Chris again :-)
Ron {public msg} And thank you Ms. Moderator and Rebecca.
Rebecca {public msg}"Happy Birthday to you!"Happy Birthday to you!!" Hap-p-p-p-y biRTHD-D-A-A-Y-Y-Y "HAPPY BIRTHDAY TO YO-O-O-O-U-U-U-U !!!!!"from all of us at ParenthoodPlace.com Chris!!
Cyn {public msg} Happy B'day to your son.
Onegary {public msg} Thanks rebecca, he is my joy.
Rebecca {public msg} Welcome Ron
Mommy-o {public msg} Thank you Gary "Happy B-Day Chris!!!!!!!!!!!!!!!!!!!!"
Cyn {public msg} will do
Onegary {public msg} Goood night all.
Rebecca {public msg} G'Night all!
Moderator {public msg} Night all... next chat the 25th of the month?
Ron {public msg} Tentatively, Ms moderator.
