THANK YOU ALL FOR YOUR PRAYERS, WE ARE HOME. WE WON'T KNOW FOR A WHILE IF THE SURGERY WORKED OR NOT. RHETT IS DOING VERY WELL, CONSIDERING, ACTUALLY YOU WOULD NEVER KNOW ANYTHING HAPPENED TO HIM OTHER THAN THE 3 INCH CUT ON THE BACK OF HIS HEAD. I APPRECIATE ALL OF YOU, YOU HAVE HELP ME ALOT, HAVING SOMEONE TO TALK TO. RHETT HAS BEEN ON THE GFCF DIET, BUT WE HAVE BEEN UNABLE TO START THE BIOMEDICAL STUFF YET, UNFORTUNATLEY OUR INSURANCE ISN'T COVERING ANYTHING FOR HIM (PRE-EXISTING) IS WHAT WE ARE TOLD. SO WE ARE TAKING IT ONE DAY AT A TIME. I AM HOPING WITH THE PUBLICITY OF THIS WE CAN FIND A DOCTOR WILLING TO HELP. INSURANCE IS A BAD SUBJECT FOR ME RIGHT NOW, I MAY SAY THINGS NO SO NICE. BUT I KNOW THE RULES(SHAWN). THANKS TO ALL OF YOU AGAIN, AND KEEP HIM IN YOUR PRAYERS, BECAUSE THIS SEEMS TO BE A LONG ROAD AHEAD FOR US.

Shannon, you have to be tired on top of your tired. Emotionally and physically drained. Please know that I am pulling for Rhett and your whole family.

I have to rein my own self in on the whole insurance company thing. I think it would be easy for many of us to say non lady like things in situations such as this.

I hope for you a tremendous recovery for Rhett and financial relief.

Shannon Do you have an update on Rhett for us?

i just got back from a visit north and my husbands cousins little boy has a mid grade autism. i have to tell you all about the book they use for him i was sooo impressed by it. it's a book with velcro on every page. then they have pictures of the things he needs or wants stuck to the velcro. the little boy kept going to the book and giving people the pictures if he was thirsty or had to use the bathroom or even wanted to be tickled. it was soo cute and a very good way for a child who doesn't talk to communicate with people who don't know sign language. i just wanted to share this in case anyone hasn't heard of it.

I POSTED THIS THE OTHER DAY,(UPDATED) I SHOULD HAVE POSTED IN THE RIGHT PLACE BUT HERE IT IS...

HELLO EVERYONE. JUST TO GIVE YOU ALL AN UPDATE ON RHETT, AS SOME OF YOU KNOW RHETT UNDERWENT BRAIN SURGERY ON MAY 8TH. WE ARE EXREMELY EXCITED, HE HAS HEALED VERY WELL. HE IS UP TO 7 HOURS OF SLEEP A DAY, HIS MELTDOWNS ARE SHORTER, WHICH IS PROBALBY THE TERRIBLE 3'S. AND HE IS FINALLY GROWING, HE IS 3 1/2 AND WEIGHED 25 LBS. HE IS NOW UP TO 30 IN 3 WEEKS. HE HAS DOUBLED HIS VOCABULARY SINCE THE SURGERY, NOT THAT THIS IS WHOLE LOT, MAYBE 30 WORDS, BUT THAT IS HUGE FOR US.

SATURDAY IS MY BIRTHDAY, MY HUSBAND, RHETT, JESSICA, TRINITY AND MYSELF WILL BE AT THE PARK. TELL YOUR HUSBANDS TO COME ON. IF YOURS IS ANYTHING LIKE MINE HE HAS ASKED IF THERE WILL BE OTHER DADS THERE, AND OF COURSE I SAID YES, WITHOUT REALLY KNOWING. SO PACK EM UP IN THE CAR WOULD YA.
I CAN'T WAIT TO MEET EVERYONE. AND THANK ALL OF YOU AGAIN FOR YOUR THOUGHTS AND PRAYERS. I REALLY NEEDED YOUR SUPPORT, YOU JUST DON'T REALIZE HOW MUCH IT HELPS A REALLY EXHAUSTED, AT THE END OF THIER ROPE PERSON. AND I WANTED YOU TO KNOW YOUR PRAYERS DID NOT GO UNASWERED. THANK YOU ALL AGAIN.

SHANNON

OH YEAH, AND PETE-N-REPEAT SAYS I'M GONNA HAVE TO CHANGE MY SCREEN NAME PRETTY SOON, NOW THAT I'M CATCHING UP ON MY SLEEP.

THAT PICTURE BOOK IS SOOOO COOOL, WE HAD SOMETHING A LITTLE SIMILAR THAT EVERYONE CAN USE FOR THIER CHILDREN. SMALLER VERSION, IT HAS 5 SQUARES ON IT. IT WAS A REWARD CARD. IT ALSO HAS VELCRO IN THE BOXES, WHEN RHETT DID SOMETHING GOOD, HE GOT A PICTURE SQUARE STUCK ON THE BOX, IT CAN BE A SMILEY FACE, BARNEY, WHATEVER. WHEN ALL OF THE BOXES WERE FILLED FOR THE DAY, (ALL 5) HE GOT A TREAT OF SOME SORTS.
WHAT A NEAT IDEA, I WILL HAVE TO PUT ONE OF THOSE TOGETHER FOR HIM.

I watched a movie the other night "Miracle Run" it was on Lifetime. I guess I never really understood what Autism was- and watching that movie... You moms are blessings. The lady in the movie was single and had twins that both had it. She had a hard time doing anything and she pushed to get her sons the education they deserved.

I watched this too, and some that don't know about autism might think that these movies are exaggerated, they are not. And the part about fighting for the education of these children is true, it is a fight. But hopefully this will change soon, there are alot of people out there fighting for the rights of children with autism. These are the ones I would commend, not me, I'm just a mom taking care of her child.

I watched the first part then recorded the rest as I was tired. I watched it the next night with my husband and my girls. Felicity (6) asked a lot of questions. I had to look up more about it to explain to her what was going on. She asked us last night if she could watch it again- and keeps asking about what autism is. My husband was more clueless then I was- he didn't think was as hard as the movie made it out to be but when I was reading to him the things we read on line he was surprised.
Our soap Days of Our Lives is making one of the children on there autistic. I think that is to help get people more aware as it seems people aren't as aware of it as they should be. The boy in the show is like 4 or 5 and he is just now showing signs- but it seems like a great way to get people interested in it as well as giving some insite on what it really is.

Melissa,

quote:

Our soap Days of Our Lives is making one of the children on there autistic

The actor who plays Lucas' real life son is Autistic. I read something about it a couple/few years ago. I think it's a great way to educate, especially if they really delve into the education and resource options.



{Now that my brain has had some sleep, I've found a couple posts I need to edit/correct.

Anyway, this didn't read as I intended, so I'm glad you got the point, Melissa. The actor who plays Lucas has a son in real life and that son has Autism.}

Thats funny you bring that up- I just got done telling my mo about the forum and how I posted about days- we thought someones child had it or a family member.
I hope they will do a good job with education as I was unaware of what it really was.

I used to watch Days of Our Lives years ago, lol. I bet they still have the same characters! I like that idea, the more that's known of autism, the less ignorance there can be about it. And believe me, over the course of my daughter's challenges with autism ( headed towards 16 years now) I have met a lot of people who knew next to nothing about it.

And to be honest, before my daughter, I didn't know much.

For anyone interested, here's an old link to a thread I started about the personal side of autism, and I think I probably need to add more here soon.


http://forums.theledger.com/eve/forums/a/tpc/f/2221079265/m/5531079336

Shannon and I have exchanged lots of information over the past several weeks by PMs, but I thought there may be moms out there just reading for information. I thought I'd copy and paste some of the info. I've offered to Shannon, in hopes it'll help others.


The School Board should be the first point of contact for resources in the area you live in. They really need to work with you on getting him before and after care and I completely understand why you aren't keen on letting him on a school bus with his situation and age. I'd be afraid, too. You need to really make sure everyone involved has a game plan on how he will be treated and safe. Which seat is he to sit in (I'd recommend directly behind the driver) and either alone or with one other child who is good with young children.

You know, with his age, you may be able to have the school board pair him with a para who will travel to and from with him.

That can be made a part of his IEP - Individualized Education Plan. Do you have one of those for him or is he not considered in need of one yet, being under K grade? I would go to the school board and ask as many questions as you need to.

Of course, they only share so much, if you don't ask, they won't necessarily offer either. That makes your job all the more difficult since you don't necessarily know what to ask.

What about the teachers at the school you have him enrolled with? What can they offer, as far as questions to ask or where to seek answers?

Get in touch with CFAII, Terry Millican, and find out what she can offer. She's been through it all, too.

You can contact her through the CFAII website:

http://www.cfaii.org/events.html

Her email is under the Silent Auction info. You'll see it.

[[[I had to go back to old emails to get hers, but it is: milltl@earthlink.net ]]]]

Also, get back in touch with Andrea Holladay. For those who don't know, she's the director of CABAT (The Center for Applied Behavior Analysis) of the Central Florida Autism Institute (CFAII) which is LOCAL! The reason this was established is for meeting the needs of children and teens in the area because parents had to travle for the services CABAT now offers here.

Andrea is amazing, patient, and educated! Her contact info is:

aholladaybcba@hotmail.com


Another CFAII Board Member who may offer insight is Debbie Hannifan (i'll give you her email in a PM).

I can't stress it enough to get at the school board. Force them to do their jobs. I am so sorry to hear of your on-going situation with Rhett getting what he deserves and needs.

The school board needs to also provide Speech Therapy, too. I know when children are born prematurely and have issues from they get all sorts of services. A mother we met at the playground years ago told us this. And the school board is the first place most families go.

Keep your chin up, Shannon, I hope this helps, I don't know??? You are in our prayers!

Another Polk County Resource to tap into is Florida Diagnostic Learning & Resources System (FDLRS). I have taken many workshops here for my teaching certificate renewal and have found invaluable information that I can use with all students of various capabilities, from general ed students, to special ed/ese, gifted, and even with our own (they were my "guinea pigs" for follow up activities I had to complete).

At the site, there are side links for ESE, Autism Spectrum Disorder, Behavior Intervention, Gifted Program, Occupational & Physical Therapy, as well as Transitional Services (for older teens to young adults).

http://www.polk-fl.net/districtinfo/departments/learning/ese/fdlrs.htm

I think what Shannon and others struggling in this process of getting their children's needs met really need is for people who've been where she is to say "This worked for us" "This didn't work for us" "Go here" "Try this" "Call him or her" and then give the information and contact information you may have. How did you walk the system? How did you work the system? Whom did you speak with? What services were you provided and what is available?

We haven't, personally, had these issues or needs, but thankfully, having been a teacher, I can offer some and probably limited information or suggestions. It really isn't the same as those who have been there, done that, overcome.

Also to add from a link at FDLRS under the side panel, ADDITIONAL SERVICES.
http://www.polk-fl.net/districtinfo/departments/learning/ese/services.htm

It states information about Speech and Language Program at the above link, too.

Following ADDITIONAL SERVICES, I clicked on Florida Inclusion Network. Here is that link and what it says
http://www.floridainclusionnetwork.com/page265.aspx


Following the OCCUPATIONAL THERAPY & PHYSICAL THERAPY side panel link, it lists names and numbers for those who provide services. One of these individuals just may be able to offer the direction or path that works for someone.

Here is the direct link
http://www.polk-fl.net/districtinfo/departments/learning/ese/otpt.htm

This is what is states the therapists and assistants work to accomplish
"Support students with significant physical or mental needs engage in school activities enabling full participation

Plan and implement specialized instructional activities

Use assistive technology to support students in the curriculum and to access the school environment

Collaborate with other school staff members to facilitate differentiated curriculum for students with special needs."

This link has a list of the Occupational & Physical Therapy Staff and where they provide services. Look through for the school your child is in and make contact with the therapists specifically.
http://www.polk-fl.net/districtinfo/departments/learnin...uments/otptstaff.pdf

Shannon, I just reread you very first post here and saw you mentioned insurance wouldn't pay for something because of "pre-existing condition" and I haven't heard of pre-existing condition clause in years! This is something I would definitely look back into. For some reason I am thinking insurance companies can no longer exclude for pre-existing conditions. I don't know, just something struck me with this. Anyone up on insurance regulations???? Call around and not just to your own company. If you call your own, don't give your name, just say you have some generic policy questions, see what you get. Just a thought.

I have change the name of this post, it sure is heading in the direction I needed, thank you so much.