Florida parents?

Discussion in 'General Parenting' started by cfa3, Jan 9, 2012.

  1. cfa3

    cfa3 New Member

    I think it would be so helpful if this forum could be further broken down by state. Each state does things so differently. I am in FL, obviously. My son has medicaid through his disability because his first diagnosis ever was autism, though now everyone agrees it is much more Pervasive Developmental Disorder (PDD) not otherwise specified then anything like autism. Anyhow, trying to navigate the world of phosps and RTCs and even therapeutic boarding schools and would love to connect with other FL parents in this forum, even just to private message or exchange emails. We are in Sw FL at the moment.
  2. Marguerite

    Marguerite Active Member

    I'm not even in the US; I'm about as far away as you can get. It was a big frustration to me especially when I first joined, that I would post about an issue and not be able to get any advice that was able to help me with our officials.

    However, I have seen how this gets handled and also learned how to adapt the advice to our specific situation. Also, I clarify where I need to; for example, people talk about getting an advocate to go to a meeting with you. Well, in our state, there is zero provision for an advocate in an IEP meeting. I tried to go as an advocate for a friend and it was made very clear to me (plus I checked at the highest level) that I would have to keep my mouth shut, my ears open and say nothing. I would have been able to provide a lot of useful information in support of both school and parent, if they had let me speak.

    In your situation - you have your state listed openly on your post. You can also, if you feel you need to, put it in the topic of the thread as in "Anyone from Florida who can help me?" If the site restricted things or segregated things on a state by state basis, you could risk cutting yourself off from advice from someone who may have recently moved from Florida, or who might have other knowledge of your area but no longer live there.

    Here's hoping you can make personal contact with other Florida parents. It can be helpful to meet others in person, but it has to be a personal decision. As I have often said - if you need to find a good support group in your area and there doesn't seem to be one, then start one yourself. That way you know it will work the way you need it to!

  3. greenrene

    greenrene Member

    I'm in Florida - we live on the Space Coast. I don't know much about Residential Treatment Center (RTC) and phosps at all because that's not what we're dealing with, but I did at least want to say hi.
  4. DDD

    DDD Well-Known Member

    I've only dealt with substance abuse facilities but due to "Government in the Sunshine" Florida does have internet available lists of facilities of all types, I believe. I was able to read Annual Inspections, facility locations, length of existence etc. Perhaps you could call the State Agency that is closest to your type of need and ask them for the web address for full information.

    At one time one of the Board members provided a National site that was broken down by State and Region with a description of services. Possibly it is located in the Archives. Good luck. DDD
  5. mazdamama

    mazdamama New Member

    If you are in northren FL do check out daniel memorial in Jacksonville. My son is doing well there so far and it is a safe place for him. I think we may have talking already.
  6. cfa3

    cfa3 New Member

    Thank you all! Yes mazdamama we have been talking. I am currently checking out a SIPP, Alternative Family Care in Ft Lauderdale. We lives in the SW but am thinking of relocating to east coast for more variety of services. Thanks to all who replied, I will put FL in my posts in the future if I need FL info!
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I don't know anything about Florida, but do know a lot about Pervasive Developmental Disorder (PDD) and Pervasive Developmental Disorder (PDD)-not otherwise specified, which was also my son's diagnosis, IS autism. It's just a higher functioning form.

    Does your son get interventions in school and the community? Pervasive Developmental Disorder (PDD)-not otherwise specified is not a mental illness. It is a neurological difference. Sometimes mental illness can reside with it, but it responds best to interventions. These kids have low frustration levels and have trouble communicating, even if speech is good. My son is eighteen now. His behaviors have improved tenfold with intervetions in school and the community. He has really learned how to calm himself down and stay on an even keel.

    These kids often do not respond well to therapists. They tend to be very concrete and not comfortable sharing or identifying their feelings, at least not in words.

    Keep posting. All of us would like to help you out :)
  8. buddy

    buddy New Member

    I agree with MWM... the change from Autism to Pervasive Developmental Disorder (PDD)-not otherwise specified is not as significant as one may think. Certainly not the jump from that spectrum to what most Residential Treatment Center (RTC)'s deal with which is mental health diagnosis typically.

    Pervasive Developmental Disorder (PDD)-not otherwise specified, ADD, Tourette's all have the other things you list as symptoms... the Obsessive Compulsive Disorder (OCD), anxiety, mood disorder and even BiPolar (BP)-like symptoms if you are talking about sudden mood changes that is.

    I would be very careful, having a similar child to you, of being sure that the facility has experience with people with this style of learning. This way of perceiving the world.

    Just my .02 worth. I think the way you posted it is wonderful... will pull out folks in your area AND anyone who can relate to your child .

    Let us know what you find out. I will pray you find appropriate services for your difficult child! I have thought since you started posting again that our kids sound similar in some ways. Certainly in diagnosis. and complexity.
  9. cfa3

    cfa3 New Member

    Thank you! He really cant do talk therapy because he is so so immature, he will just act silly, roll around, pick at the therapist, also his language is so delayed of course and he becomes very angry when any mention of talking about feelings comes up. We have not found good help, no. I have read everything under the sun, he has a good IEP, but he has SO many issues in so many areas that it has been hard to nail down interventions and help. I am in a panic now realizing how badly this kid needs help and what I am going to do to find it. We have a mediocre psychiatrist, a neurologist who never has anything to say, a series of crappy behavior specialists with their charts and point sheets (not good for my son), and a few therapists who dont know what to do with him.

    Coudl you please tell me specifically which interventions you used? My son is Pervasive Developmental Disorder (PDD) not otherwise specified as opposed to autism because he lacks many of the impairments - he has no trouble comprehending right and wrong, though cant execute, realizes that he is out of control but cant calm down. He doesnt lack reciprocal emotions or play. What have you done? Would love to know! Trying to build a new foundation of interventions and professionals for my son. Thank you!
  10. cfa3

    cfa3 New Member

    Aww thanks Buddy....our kids do seem very similar and yes I truly get that this is neurological situation mainly. The anxiety is very bad and the moods are bad, but it all ties in together. I am wary of everything because no direction we've gone in has helped. Tried the autism stuff (ABA, charts), not for him didnt work. Psychiatry - nothing. We are going to be getting what I am praying will be a top notch neuropsychologist evaluation in a few weeks. I am hoping that will point us in some direction.

    As for the Residential Treatment Center (RTC), that idea is floating around because any time my son has spent in a very controlled and almost rigid environment (not TOO rigid, he needs flexibility too!) he has thrived and felt so much better. He is so loose and jiggly in his brain that those environments impose an order and control that soothes him (to a POINT of course, not talking about authoriatian boot camp stuff). For instance, last stay was 10 days at psychiatric hospital and he practially loved it. He came home ordered, calmer, etc. But I cannot duplicate that at home, just cant do it. So thinking about an Residential Treatment Center (RTC), shorter term, to instill some independence, calm, and some behavior habits that may last once home....not sure yet what to do. Downside: he doesnt responds to medications at all. The facility I have been in contact with claims they are fine with dual diagnosis kids (Pervasive Developmental Disorder (PDD)/mental health). It is hard when youre child has so many different challenges - as our psychiatrist says my son is a moving target, like a pie with so many different peices, you start to target one and he has moved on to another.

    Thank you for your words!
  11. cfa3

    cfa3 New Member

    As for Pervasive Developmental Disorder (PDD)-not otherwise specified by the way, the reason he is often given that diagnosis and that I feel comfortable with it is that it is not only "higher functioning" Autism Spectrum Disorders (ASD), but, to my understanding, different Autism Spectrum Disorders (ASD), quirky and does NOT fill all the Autism Spectrum Disorders (ASD) symptoms. That is my son. He also changes a lot. But he doest really share most of the diagnostic autism criteria, yet he has impairments in some of the areas. This is why he never fits in with the autism groups or sports or classrooms - he will ask me, "mom why doesnt joey (with autism) look at my face? why wont he answer my questions?" or "why wont he play with me?" My son doesnt get it because he doesnt share so many of those issues. Yet at the same time my son is totally irrational with peers and cannot understand why everyone doesnt love him and he doesnt know really when to stop talking about his interest and he forgets to ask about the other person etc, yet has never fit in with autism "stuff". Hope this makes sense.
  12. richardluthar

    richardluthar New Member

    Hi, they was Florida parents is law requires birth fathers to provide financial and emotional support to the birth mother during her pregnancy and after birth to be able to interfere with the birth mother's adoption plan, The right to participate in all phases of adoption planning.
  13. HaoZi

    HaoZi Guest

    I'm originally from FL and no way in h-e-hockey sticks will I move back there any time soon. My daughter is very similar - has no to minimal issues with eye contact but goes off on peers, etc. The way the current gov there is running state agencies into the ground I'd be careful and grab as much help as soon as you can while nosing around for county, city, and private help as well.
  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Pervasive Developmental Disorder (PDD)-not otherwise specified is atypical autism as opposed to classical autism and Aspergers. Based on what you have said about h is questions, do you believe he is a spectrum kid at all? Here is an online test to see if your child meets the criteria for Pervasive Developmental Disorder (PDD). My Pervasive Developmental Disorder (PDD)-not otherwise specified son did not enjoy classically autistic kids because he would say they are "boring," but he didn't ask too many questions about them. He seemed to know that the kids were children with more issues than he had. Here is the online test. The Pervasive Developmental Disorder (PDD) group I chat with thinks it is quite accurate if the parent is honest in the answers.

  15. buddy

    buddy New Member

    Interesting, I think I understand your situation now a little better since you described him more. Poor guy stuck between a rock and a hard place. So, if he does well in structure like that what about more of a therapeutic boarding school setting??? I dont know about those very much, would people here have info on that or on the web to see if that could be a fit for him?

    I can totally see how aspies and autistic kids could make him nuts. I often think that I wish my son and a son whose mom I had met would be friends and it never works that way.... my son is so low functioning cognitively that his humor is just not sophisticated enough usually... and they want to talk about their interests on and on or to play a game that is out of his league... both tend to have low frustration tolerance, see things from their perspective mostly, etc... these guys can't catch a break sometimes, lol. And I would just love to have a friend where I could hang out and our kids would be fine together. sigh. TeDo and I met up and actually our boys did well together. Her son is sensitive enough to other's needs that he was able to hold it together and they had some common interests so that worked slick. And I not only got to play with TeDo but her difficult child 1 and I hit it off, he is really cool. (they both were but Q and I each got one of the twins, lol).Too bad we live so far away.

    I sure hope you get some needed info from your neuropsychologist evaluation. Let us know how it goes.