Please email me at robyne at cox dot net or my husband which is more knowledgeable than I (and more tactful) at wrohde at cox dot net. We have meetings all the time with parents. Senator Gumm is going to have an interum study in October that will show all sides of this issue (fair and balanced you could say). It is open to the public. There are support groups all over the state that can talk about Nick's Law, however my husband and Senator Gumm are the most knowledgeable. My apologies for the 'stinging' remarks. But what happened last session was beyond mere politics. House leadership actually said in a caucus meeting..."why spend any money on these kids, they are all going to end up in an institution anyway". This is what we are up against. People who care nothing about our children, but care a lot for big insurance and the money padding their pockets. My husband was there every single day. He is well respected by most everyone on either side of the isle...he is hated by some....those who know they did the wrong thing last session. I am a mother fighting for her child. We have exhausted every possible kind of state service possible. There is a 'community and in home waiver' (DDSD) where there is a 5 year waiting list..we applied for this and even asked to be placed at the top of the list....went to hearings and found out all the waiver does is supply us with some who will bathe Nick. We need highly skilled and trained people like we have now. I just did our payroll for this month for the people who work in our home with our child...the cost was well over $3500. This doesn't include the 2 hours/week of speech and 2 hours/week of occupational therapy at a cost of $520/week or the cost of medicines and supplements at $465/month. I know all of these figures by heart because everytime we apply for a service by the state, we must submit this information. If I thought there was something available from the state or public schools, I would be trying to obtain it. There simply isn't for our son...as I said every child is unique. We are taking him to Dallas on Friday. Something we do twice a month for treatments. This trip costs us at least $500/trip because we also purchase his special foods there as well. This doesn't count the time off from work that both my husband and I have to take. Please, please email us. We can answer your questions. Best regards, Robyne Rohde

Every night I am on the computer reading, planning and wondering. Two nights ago I read your post and the WELFARE comment sent me over the edge. This is going to burn....but I want to apologize for my first reply. It was fueled by pent-up anger. As for whether you know who I am...this isn't about me. In all my replies to you, I have told you that I have questions. Not once have you asked what they might be. Instead you have continually said that you support my choice to go to the Republican leadership and ask them to not support this law. You still are not listening to what I am saying. I HAVE QUESTIONS....What would I stand to gain by taking this law away from all of the families who could benefit from it. Every families situation is unique. As for my colors....Have you gone back and
read some of your posts? They sting just a little. Look, if you truly know me then you know I am
familiar with the numbers. I could spout off the batting average of the 85' Atlanta Braves but that
would put us right back to here. I never called you, or anyone associated with you out about respect.
I made a generalization comment about respect within the autism circles. I have nothing but the
utmost respect for anyone who will stand before the masses and pour their hearts out about bettering
the lives of their children who struggle. I JUST HAVE QUESTIONS.

I reread Hippie's post....lack of respect of whom from the autism community? Who do we not respect? Aren't you supposed to be a parent of a child with autism? Aren't you part of the autism community? Doesn't sound that way to me. As I said we know who you are.

Every family is different...every child unique..some children require more assistance than others. I'm impressed you qualified for TEFRA…if you would like to speak to our case worker, he can tell you that it took 8 months and about 100 hours of my time documenting our son’s illness and obtaining letters from several doctors and obtaining a current diagnosis….but it sounds like you know so much about this already.Congratulations! I know of no other family that has qualified. Medicaid has paid for the co-pays to Nick's Pediatrician, NOTHING for the specialists (pediatric gastroenterologist) we took Nick to in Austin Texas after taking him to THREE pediatric gastroenterologists in OKC who wouldn't even touch Nick. Aetna still wanted us to take him to doctors in Dallas after going to three in OKC...we finally took him to Thoughtful House and if you are the parent of a child with autism, you should be familiar with Thoughtful House. This was a $10,000.00 bill at least (not counting travel) that neither Aetna nor Medicaid paid and we still owe, but our son is now happy and not in excruciating pain from his enterocolitis. We consult with his doctors and nutritionists at a cost of $225-$425/call since we had no one in our state with the knowledge to treat a child with autism who has enterolcolitis. Aetna will not pay for the special lab tests we run, Chelation, nutritional testing, metabolic testing, MRI’s ($2500 each) and I could go on. I love my son….. I know how much all families love their children and would do whatever it takes to help them. If you want to tell your legislators not to vote for Nick's Law..please that is your right as an Oklahoman...I can tell you, we have been all over the state and the most conservative of republicans believe in Nick's Law because the alternative is if Nick doesn't receive the treatments he needs, in 8 years every taxpayer in the state will be paying for our son and the 6500+ children who did not receive appropriate early intervention so they could lead an independent life and not become wards of the state. And please you are only showing your true colors when you try to insinuate that I belittle parents. We know who you are. It is so easy to hide behind a screen name. I have never hidden my name. Everyone who reads my posts knows who I am and what I stand for. I am the parent of a severely autistic child. I live with autism 24x7, I pay for autism every day and I pray someday Nick will come back to us. Robyne Rohde, Mommy to Austin and Nicholas (Nick’s Law)

What is unfamiliar about struggles, IEP's and therapy? And what is this 3 - 4 year waiting list. It did take about 8months to get the ball rolling, but the only thing we deal with now is our yearly review. These services are attainable....I am trying to figure out where you are getting your information about Medicaid. I too have Aetna and all that Medicaid required from us was a letter denying coverage and we were off and running. That is the purpose of Medicaid....Paying for what your
insurance WILL NOT. There simply is no catch. Now as far as the school situation goes, I don't remember commenting on that but I will oblige you on this topic. We started our child/children in a certain district that was not at all acceptable and after
being in our new home for only 6 months, we contacted a realtor and were off to a district that has been nothing but an answered prayer. An open door policy, a full time aid(if needed) and a full resource room for daily OT/PT. I could go on, but I am afraid I will vent more of my pent-up anger. I HAVE read "Nick's Law" and I still have questions if it is what would be best for our situation. I am tired of the lack of respect within the autism community. Although our children all suffer from a debilitating
disease, every family's situation is unique.

To everyone on this post: Why not read Nick's Law before commenting. You will be further ahead of most of the Republican leadership. Most of these people didn't even read HB2531 and admitted this to us, but won't admit it to the press. So before commenting, take a minute to read what you are commenting about. Just a suggestion.

To:Luscious Hippie, Bowlegs--Thank you for your comments but as a parent living with autism, I find your comments strangely unfamilar. I would like for every parent to have the ability to use whatever the state offers, the problem is the state doesn't offer anything that doesn't have a 3-4 year waiting list and then the most they offer is an aide who will help bathe or change diapers for the child. Our son who has Aetna also has Medicaid (TEFRA) and it took us 8 months for him to qualify. Yet, if Aetna doesn't pay, neither does Medicaid, so it is a catch 22 when it comes to Medicaid. Most of the autism specialists we take our son to don't accept Medicaid. Our Medicaid system is notoriously slow at paying and restricting what they will pay for. The other areas reviewed including the Edmond Public Schools, I have first hand knowledge of the 'services' they provide. Everyday was fight...for every minute of service we asked for. I tried working with them for 6 years and finally pulled Nick out of school altogether. Their idea of services was 15 minutes a week of speech, OT/PT. A WEEK! For a child who is on the severe end of the spectrum, this was simply inadquate. We had to hire specialists to audit the classroom and provide written reports of how the Edmond schools were NOT implementing ABA appropriately and if implemented inappropriately, the teacher could do more harm than good for the child. We even supplemented Nick's public school with additional speech and therapies after school at an out of pocket cost of $1600/month. Nick's therapists now cost us nearly $5000/month out of pocket. I could go on, but you have a lot of pent up anger toward me which is unusual for the parent of a child with autism in this state. If you don't wish to support Nick's Law that is your right as an Oklahoman, but you will reap the benefits of it when it passes....another right as an Oklahoman and American. I wish you and your child well and nothing I place in my posts are from Wikopedia. We have been at this for too long to have to resort to googling our information. Take care. Robyne Rohde, Reagan Republican and mommy to two adorable boys, Austin and Nicholas (Nick's Law).

I sat last night and read the comments on all articles that pertain to HB 2531, "Nick's Law" and Autism. There was one familiar presence that denounced, belittled and insulted all who opposed them. ROBYNE FROM EDMOND. As a parent of a child/children with autism, I spend every night doing my research and have yet to make my mind up on
which side I will support. Talking down to parents who have fought tooth and nail to utilize the services the state provides and verbally browbeating all who oppose, much less question you. Then placing horns and pitchforks on the entire republican party. Whose flag I fly doesn't matter, but you need to know that your voice is as big a part of "Nick's Law"
as Wayne, Sen. Gumm or Nick himself. I want nothing but the best for these children, but as a parent of a child battling this disease, it is my duty to that child to go through hell & back to do what is necessary to get the services they need. For you to call out the parents of autistic children who choose to act know and use the state services and yet still fight for betterment is disgusting. I am sorry that the WELFARE SYSTEM isn't the social club you want to be a part of, but it is the only LAW some families will be able to use. I guess the alternative is for these families to cash the checks the insurance companies send to pay their therapist and then file for bankruptcy. That won't affect the state will it? I don't care to get in a battle of wit with you....It is clear you have your shortcut to wikipedia and have mastered your word of the day toilet paper. I think you should realize that your voice is being broadcast on a much larger scale.

John: I’m not sure what language you are speaking. But I think you might need to just calm down. Did you say that we need to pass a bill to perform redistricting? You may need to do a little research on this one, but it appears you are so tongue tied and upset, you might need to take some time and just calm down. Just an FYI we had a bill before our legislature in 2007 to clean up the unethical manner in which redistricting is performed in our state (by the state legislature who writes the bills for redistricting), but of course it died in the Republican House. Now just calm down. Everything will be better come November. Oh and the list you were speaking of. I appreciate you giving me credit for it, but I never said it came from me. I am glad it is making the rounds, though. Thanks!!

Gosh, Mitch, if you knew anything about autism, you would know that the different options that were reviewed had already been reviewed, in fact the head of DHS said, ‘don’t come looking for anything to help autistic children at DHS.’ He realizes the need is too great and they simply don’t have the specialized skills. Again, we have been studying this for years and it isn’t something we came up with overnight. All solutions have been studied by true ‘experts’ in Oklahoma and outside of the state. Actually, I do love Oklahoma. Born and raised here. You can love Oklahoma and still be ashamed of some of the politicians we elected to office. That is the great thing about our country. Why be so angry? And attacking a little nonverbal child is really something you might want to reconsider. I don’t have to prove what we have done or what the 100’s of families have done in our state to help these children. What have you done lately?

Redistricting is dont at the legislature - its a bill. it doesnt require money - you just pass the damn bill - you dont spend money on a campaign - NOW address the fact that your NICKS LAW doesnt help - ONE OUNCE 70% of the kids w/ autism

I completely agree with John. Do you honestly think “big insurance” cares about mandates? They don’t because they know they will recover the costs. No matter what the story is you always make negative comments. Do you ever spend time with “nick,” or do you just sit around waiting to bash any effort to help families affected by autism? It sounds like they spent a lot of time on looking at different solutions to this problem but with you that doesn’t matter because it’s “nick’s law” or nothing? I’ve asked my representative not to vote for any mandate until they know how everyone will be affected. And if you are so ashamed of “your state” then go to another one.

John: It is obvious that you are ill-informed and somewhat afraid to come out in public, so please you are welcome to email me and let my husband speak to you, who is the most informed about the ‘politics’ of this topic than anyone besides Senator Gumm. Email me: robyne at cox dot net. By the way, the alternative to Nick’s Law hasn’t seemed to work so far and if you did know anything about these children, you would realize that they don’t have years to wait for some of these proposals, all of which just makes Oklahoma more dependent on the welfare system and frankly, they were so off the mark on what they could provide, I'm actually embarrassed for House Republican Leadership in asking some of the individuals they did have speak at both meetings, who were supposed to be 'experts'. We are doing nothing more than making Oklahoma a bigger welfare state and frankly this isn’t what the parents of these children want to be part of (The WELFARE SYSTEM). And however well intentioned Rev. Zahler may have been, it makes no difference to me if Rev. Zahler was a Priest or a Baptist Minister. His presence at this meeting was inappropriate; however this only shows how little House Republican Leadership understands autism in Oklahoma. Robyne Rohde, Mommy to Austin and Nicholas (Nick’s Law)

Let’s see John. It is so easy to hide behind an anonymous name, isn’t it? Shall I explain the redistricting issue to you in political terms? Every 10 years, when the census is completed redistricting takes place and in Oklahoma, typically legislators attempt to modify their districts in a way that will make them virtually unbeatable for re-election. This is a system that benefits legislators’ interests, not the interests of voters. And this requires money. Lots of money. John, if you were really ‘in the know’, you would understand this maneuvering takes time so the unscrupulous legislators like our Republican House Leadership begin early in their fundraising for this venture. Big insurance is happy to provide money to Republican House Leadership for the redistricting as long as they work for the special interests such as big insurance and not the people of Oklahoma.

If your twin son could speak better on autism then let me assure you I can speak a bit more educated on politics than you do in your repeated drivel. PS Its nice how you attack a PRIEST that wants to help children, while you support a costly mandate that wouldnt help SEVENTY precent of autistic kids (non insured, self insured and federal insured - wouldnt qualify) so is this about ALL the kids or just having a bill named after your son? Or something that helps you and not everyone? I would say a 30% solution isnt a solution. And guess what - insurance companies dont care about mandates - they simply pass the cost along to the consumer. And on politics - I dont know where you get the idea that contributions are needed for redistricting - but that doesnt even make sense. This is coming from a woman by the way readers - that releases a "candidate survey" thats supposed to be non partisan on autism support - but if BOTH candidates in an open seat havent given public comment on the issue the survey reads "MUST ELECT THE DEMOCRAT". You are seen for the hack you are. WHILE OTHER FAMILIES TRY TO WORK ON SOLUTIONS FOR ALL - ALL - Autistic kids - you throw stones.