Any Florida parents? | Autism PDD
Do we have any parents in Florida?
My son is being seen by a developmental pediatrician (Keeley I believe) at the Center for Child Development in Orlando. We live in Daytona. I was wondering for those that live in Florida, when (how old was your child) and where did you get your diagnosis?
Thanks!
Hi Sleuth! Great pic. You kind of take it for granted when you live here. Is Jair and Lia getting therapy yet? I know EI was jerking you around a little when I left.
Masonsmom- Thanks so much. Your answer helped tremendously! I am thinking of returning to work so I doubt we would qualify... 0 per month won't cut it. he has been getting services through EI since he was 16 months (ABA, speech, and OT) so I am good there. I kind of wanted to just get the dx for my piece of mind and to apply for disability. I will be looking into Medwaiver for sure.
Little Byrd- Liam has been to FirstWords. Someone here told me about it. He has been twice already (it is a long drive) and we do plan to return when he is 3, but I would like a dx sooner if possible.
Thanks ya'll. I love this place.
We live in Oregon now, I ran out of Florida far, far away from the school as we had HORRID experiences with the Lee County school system (Ft Myers)
There was a Ped there who worked with Autistic kids up north somewhere...I was not terribly impressed with him but he was good for DX paper work and co-operated by filling out RX's for me to access therapies through medicaid. He actually put me on to the center where I was able to get Mason massage, speech and OT.
Getting DX or accessing early intervention took over a year in Lee Co. I actually moved to Colorado for a short time and got his first DX and school started there. Once home(FL), the Ped just made the formal DX and he is actually the one who told me NOT to let him get labeled PDNOS as it was easier to deny him services with that broad of a DX. He insisted that I make sure Mason always had the Autism label to best access therapies, etc. With Mason there is no grey area, he is severely affected so while it seems weird to write, we have been lucky that I never had to fight for the DX.
I also saw Dr Marjie Morales, <sp> a neuro who has a practice in Ft Myers and also works out of the Dan Marino center in ? Miami? She was the one who ordered Mason's MRI and EEG as well as our FX testing.....which of course he is now DX's with. She was pushy about meds but very good about DX's.
My SSI was the same in FL as it is in OR. I think the max allowable is close to 0. I get a small amount of child support and they count against me harder for that than if I were able to work. Mason qualified for less than half. That is our total income.
The SSI aplication packet is fairly thick and the process took about 4-6 months to actually start recieving $$, but once he qualified it took no maint. to keep it going.
There is also an Eden center in Ft. Myers. I also was less than impressed with them, but I am an abbrasive red head so... some of that may have been personaity conflict. 
Did I actually answer a question?
Shands can provide a diagnosis, but I understand the wait time can be long. In the panhandle around Tallahassee, there is a grant funded program called FirstWords where they evaluate children from birth to 24 mos. If the child shows red flags for ASD, they will do an ADOS (for free) when the child turns 3 yrs.
Have you tried contacting your local CARD center in Orlando or Jacksonville? They can offer some recommendations.
Also, the Medwaiver program will have a psychologist do an eval on a child before they will put the child on the waiting list. It is paid for by the Agency for Persons with Disabilities, but you can request a copy of the report.
I told her to see Dr McGinnis and he evaluated "Tater" (I know) and decided that he is actually quite gifted and SEVERELY ADHD. As and Aunti who is kind of informed, I agree with him 100%.
Hi Julie, I've missed you here! We don't live in Florida, but we vacationed in
Daytona Beach Shores this past summer, and LOVED the area. Lucky you, to
live there! I hope you can get SSI. I need to apply for Jair, and am kind of
dreading the whole ordeal. =o) Holly
(by the oceanside mall, Daytona)
Thanks Mikki. Liam is too young yet for Child Find. He is currently receiving services through Early Steps.I am getting on the phone tomorrow with all the information I have. Thanks again ladies!
Julie - glad to see you again!!!
I live in the same county as Jen and we too started with the Early Steps program and are now in the public school setting - our Neuro is through DanMarino Center and many patients come from all over Florida because the docs there are so good - its a thought
I know it's not a med dx but it's all I can get because of $$ reasons right now. My insurance doesn't cover ANY developmental delay, autism, neuropsych, or any services that my son needs. And I can't afford any of the specialists that WOULD help him it seems.
My son gets ST and OT in home right now through early steps. I'm getting worried about when he turns 3 and switches to the schools though. I've seen an ad for a support group in ormond beach that meets once a month. I've wanted to go but my husband isn't so keen on being alone with the kiddo at night sometimes.
You are welcome for the information. There are several other clinicians in the area that can do a better job as well as explain how they got to the diagnosis – something Keeley could not do. His ARNP, Pamela, is just as bad. If a diagnosis is something you are after to help your son get in to the school system than Keeley can do that, at best.
Nancy Wenk will only give a diagnosis if the child has not been diagnosed before. In my opinion she is fair and will take the time to get to know you and your child. The school system in Volusia will accept her diagnosis for services. As far as Early Steps is concerned they offer little to no help. I have had two children through their process unfortunately. A lot depends on which coordinator you have and how much of a fight you are willing to put up.
I have two children on the spectrum ages four and two and
half. There are several support groups
out there – just depends on what you are looking for. I live in
Jessica
In Jacksonville there is Child Find which is through the educational system. I think early steps if for children up to age two. Child find referred me to the center for autism/Dr. David Childers here in Jacksonville. This was all a free service. Child find did there evaluations and got my son placed in ese pre k. David Childers is a pediatric neuro developemental doc and did his evaluation for autism spectrum disorders.[QUOTE=sonowwhat?]In Jacksonville there is Child Find which is through the educational system. I think early steps if for children up to age two. Child find referred me to the center for autism/Dr. David Childers here in Jacksonville. This was all a free service. Child find did there evaluations and got my son placed in ese pre k. David Childers is a pediatric neuro developemental doc and did his evaluation for autism spectrum disorders.[/QUOTE]
Just wanted to add the clarification that Early Steps aka Early Intervention is from birth to 3 yrs. Both of my children have been in the program (my son's services ended this week for he turned 3 yrs).
I also wanted to add that if is good to research the resources in your area. This is definately were CARD and other parents factor in because there could be a community service that offers a service for free, especially in cities that have a university. One example is in Tallahassee, FSU and a local hospital offer free music therapy sessions for children with speech and language delays. Another was a service offered by the local Elks Club that provided free occupational therapy to children in the community after the child did his or her time oon a waiting list...not sure if the service is available since I heard the OT had moved out of town. THere may also be therapists, especially the ones w/ provide in home service, that will offer therapies at a reduced rate if your insurance won't cover it.
Also, see if there are any yahoo groups for your area where you can ask questions about services. Here is a website which does provide biomedical info, but also provides info of services in central florida. I believe it is called autismrecoverynetwork.com...you can google that name and it will pop up. Also, the CARD websites generally can provide some info to support groups and/or services in your area too.
Just as a side note, depending on your county...you can get your child into the school system at 2.5 yrs if the child turns 3 yrs during the school year. You have to contact his Early Steps family coordinatory and ask her to get the process started, ie set the transition meeting as soon as possible...I think it is no early than 3 mos the child turns 3 yrs. The great thing is that the child can enter the school system and take advantage of Early Steps until he turns 3 yrs. The only catch is that the child can not qualify for any therapy through the school system until he turns 3 yrs. I did this with my son.
One more thing about FirstWords. Technically, they wait till the child turns 3 yrs to do the ADOS, but they can do it when the child is 2.5 yrs. It may depend on their schedule. I know that the FirstWords and CARD jointly highered a clinical psychologist this past fall. The benefit to this is that if your child does get an Autism diagnosis, your child does not have to get retested to qualify to be added to the super long waiting list for Medwaiver through the Agency for Persons with Disabilities. They have a policy that requires them to only accept the diagnosis from a clinical psychologist/ psychiatrist in the State of FLorida. Anyway, My son had his ADOS done 3 mos before his 3rd b-day. It certainly won't hurt to ask if there was anyway possible they could do it earlier. Just a thought.
I live just north of Daytona and my son is also in Early Steps. He will get his diagnosis in April when he's closer to 3 years old- they have a psychologist who will do the evaluation there at the Daytona office. (Dr Wenk I think her name is). I can't afford to go to Nemours or Shands and my insurance won't cover any of thisI’ve been a long time lurker, but had to come out of the
woodwork to respond to this post. My
advice to you is find a different clinician if you can. My son saw Dr. Keeley in 2005. His bedside manor was less than impressive to
say the least. He did not administer any
of the typical tests (ADOS, etc.). He
spent less than five minutes with my son and came up with the diagnosis of
PDD. You are better off seeing Dr. Gavin
or Dr. Commins at the Nemours Clinic in
Jury awards Deland family million for son's 2002 death
By ANNE GEGGIS Staff Writer Last update: May 13, 2005
A DeLand family was awarded million Friday after a jury
found an
Joey Minotti of DeLand died on Nov. 23, 2002 in a group home
after he was given a lethal dose of methadone. For the past two weeks, an
For the Minottis of DeLand, Friday afternoon's verdict is the end of a 2 1/2-year drama. It wasn't about money, said Robert Minotti, Joey's father. "I was fighting for my son," said Minotti, who plans to donate some of the money to organizations supporting children with disabilities.
Joey was born with Down syndrome and autism and had been
displaying self-injurious behavior, family members said. Picking and scratching at his own eyes, the
boy had detached a retina and had caused traumatic cataracts. His parents put him at Myrtle Street House in
Robert Minotti said he's relieved his family -- with four other children -- finally has the closure they've been looking for. "Joey's life was so valuable -- he taught me things that I wouldn't have learned if I hadn't had a child with disabilities," he said.
Hi Julie -
Good to see you again.
Hi there! I actually live in the NW Florida area. My son was 2 1/2 when he was diagnosed. We had taken him for a speech eval. for delayed speech and they
thought he needed further eval so they sent us to a Neuro Psych which is where he got his diagnoses. Looking back, I should have seen the red flags but denial and the fact this was my first child with no previous form of reference caused this to be kind of shocking for me. I would think CARD could probably give you any
references you need. I have found them to be very helpful!
We live in Jacksonville and went to a pediatric neuro developmental doc name David Childers with Card. We saw him at the Center for Autism. I live in Coral Springs (South Florida - not far from Fort Lauderdale). My son started in the Early Steps program (Broward County's early intervention program) when he was 2. At that age he was only diagnosed with a speech delay and received speech therapy. Once he turned 3, that program came to an end, and his services had to transition over to the public school system. They re-evaluated him right after he turned 3, and diagnosed him with mild to moderate autism. Our school system has a preschool program in place that runs out of a number of public schools in the area. It is called Complex PLACE (there is also the PLACE program - stands for Preschool Learning Activities and Classroom Experience - PLACE is for kids who are just slightly behind, while Complex PLACE is for autistic preschoolers). There is also a local university that runs a full-time preschool for autistic children called the Baudhuin Preschool. The Baudhuin Preschool is contracted with the county so the kids go for free. It's not widely advertised though, since they do have a limit on the number of kids they can take. We were fortunate enough to get my son in there. Their program and Complex PLACE are virtually the same program. The great thing about my son's school, though, is that it is a teaching school since it's affiliated with Nova Southeastern University. They also offer numerous support groups, workshops, etc., and have multiple therapists on staff so my son doesn't have to share one therapist with the entire school. I am thrilled with this preschool. I am NOT thrilled with South Florida, but Baudhuin has been one bright spot for us.
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