Hi Michelle!
I hope with the new dx the school will be more helpful this
year. Some will still need convincing........that is
frustrating. Good luck with the SSI
thing......I have no experience in this area, but I can
understand your frustration! I hope things click into place
soon for you, Tyler and your whole family!!
&nbs p; bonnie
Michelle, I hope you get to the bottom of it all soon, and your child can get the help and support he needs. It is so very, very difficult. I feel like I am beating my head against a brick wall here. There is NO advocates (Cheapest one I found wants 300 dollar retainer and 90 bucks an hour plus milage and prep time). My son has autism and cognitive delay. Since children here with PDD get nothing, since he has classic Autism- he gets twice that (sorry for the cynical tone, I am working on it). After much soul searching, I have decided to call another IEP meeting and inform the school that unless and until my child's IEP includes a behavior and sensory plan, he will not be going to school. They can put me in jail if they choose, but someone must watch DS 24/7.
I dont know about the SSI, seems so insane that he cant get this. One of the funniest things that I have ever been told about DS is that he cant get SSI because we make too much money.ROTFLMAO!!!!!!!!!!!!!! We are barely holding our heads above water here, while a nurses paycheck may not be much, our family and our checking account misses mine! Who on earth would watch my son? I cant imagine trying to find dependable care for him.To hear that the school takes precedent over a Dr?..........Difficult to accept, but I am learning every day. It is very difficult not to become very bitter. As I told the Director of a state run program for children with behaviors, AFTER she told me that my child would not qualify BECAUSE HIS BEHAVIORS ARE PART OF HIS AUTISM......If that is not discrimination, please tell me what is!!!!????!!!!! Being of Irish background, I still am reminded of the signs...Irish need not apply.......blatant discrimintation...but hey, I must be wrong, they told me they are NOT discriminating against him, they just cant meet his needs.
I would start the SSI process again, could you contact your Senator and ask for help? If it is an election year you might get some help....oops there is that cynical attitude again, sorry!
Hope things get better for you and your family, I will hold you in my thoughts and prayers and ask you please return the favor for me.
((hugs)) if ya want em
First off Thank You everyone for suggestions, advice, SUPPORT.
I am SO tired of fighting! I feel like everything is a fight leaving me no strength for th eday to day LIFE I have.
Tammy is right... Tyler received SSI. When he was basically 3 and first diagnosed I applied... (it took me a few "appeals" for various things but we "got it") So then about 18 months ago SSI sent the letter we needed to do a state eval....we filled out all their paperwork, we went to see the dr they sent us to, and later received a letter saying although the papers filled out by me and the dr and the therapist show problems here there and here more weight is given to the greater objectivity of the school and because his signs and symptoms have improved or diminished he no longer qualifies for SSI. I appealed and went in by myself explaining why but the appeal just got another denial for benefits which I again filled out papers to appeal..... I have YET to hear on a hearing date for that appeal BUT in the meantime, payments have stopped and SSI is sending me a letter asking me to repay them 00 from the benefits he received from when the state evaluated him until after I lost the first appeal! I cant pay them back 00! Thats 1/2 a years income for me!
But I am hoping now with his therapist, the letter from the neuro stating he has autism, the autism specialist doing a report on him that says he has autism and now this psyc saying he has autism,...... MAYBE I can prove to SSI the school isn't doing what he needs and their reports and evals are full of
I am also hoping this will make the schools wake up and smell the coffee. I do have an advocate working with us.... supposedly the best in the area.... if she is Im not impressed because the only thing it has gotten me is an extra 60 mins a month of speech services and a more specified plan as far as his speech and OT. He needs to have an aide and he needs to be in special ed classes at least for tests, math and language arts. He has to go to a new building this year with new students and staff etc and they gave him NOTHING for a transition. And the whole having to transfer schools was the straw that broke the camels back that caused the regression he had at the end of the school year!
Something I find a lil ironic here.......... Although the school special ed director is who keeps denying everything I ask and fight for as far as school services.... SHE is who presented my family to the county for some additional help in home! I had been told they usually talk it over after they hear the case and then "get back to you" but instead they approved right then and there on the spot and I overheard the one lady say somethign like I dont know how much longer she could go on without the help. Well that was about 7 weeks ago and I still have NO HELP!
Guess ya just gotta love the programs that are out there for you to receive help but the rules are made so you dont qualify... It must be more important to have it offered, than to actually provide it!
Michelle,
I wish I had something helpful for you but I don't know anything about SSI. You always have something practical, caring and helpful.
I re-read your post and in addition to hearing the question I also caught your comments at the end about how stressed you are. I'm new(ish--9 days!) but I realized that I always think of you as "steel". Like you've got it all together and don't get ripped, exhausted and frustrated. Of course you do. I'm sorry you are having such a difficult time. Sometimes it gets missed that someone is going minute to minute. You are obviously strong and capable but very human and vulnerable as we all are. I think I'll think of you as Michelle, a Steelers fan.
pat
Yes I agree. Actually Michelle has more strength than she realizes. And she is slowly coming around to realizing that. But I don't think I could ever convert her to being a cowboys fan, lol. Just remember Michelle to keep your chin up and we are here for you.
Tammy
Hi Michelle......Like the others you have also helped me with a question or 2 in the past......I can only tell you that in my experience with SSI....to not give up.....I have had many a battle with them with my sons DX...he is Autistic...and qualifies for service however every month they send me a letter telling me he doesn't qualify any longer.......Keep sending in your paper work every month....if that is part of your routine.....we have to do that......and yes tell them of the change in DX....I personally haven't had any issues with SSI and a school system so I am not real sure of that.....but I do know that persistence with the Social Security Office pays off. Hang in there......HI MICHELE, I know that before when we wnt to doctors looking for a dx and when he was dx'd w/autism several of the doctors n therapists suggessted always put AUTISM IN FRONT OF PDD,ASPERGERES, N SO ON...TO recive all services you will get the quicker responses that way..I know the last time I spoke to SSI here in PA they go by the DOCTORS DX quicker then the schools.I mean when I started w/ssi appl.in january 03 it took 5months of investigating all sons EARLY INTERVENTION PEDS,PYSCHOLOGISTS,PYSCHIATRISTS,THERAPISTS E.I. EVALS. N SO ON I SENT THEM COPY REPORTS ON EVERYTHING N THEN THEY DID there work on there end so we were approved in july03..his dx didnt come until may that year...good luck.HEY MICHELE, I THINK YOU SHOULD CALL YOUR LOCAL NEWSPAPER N NEWSTATION ABOUT SCHOOL N SSI STUFF..MY TSS NEARLY FELL OFF COUCH SAYIN U GO GIRL!!!YESTERDAY B/C I SAID IF SCHOOL DOESNT PULL THREW THIS TIME WELL WATCH MY BIGGGGG MOUTH..N OR WELFARE THERE PATHETIC TOO..OH Y CANT U WORK FULLTIME AGAIN..B/C HIS DADS IN JAIL N NEVER HELPED OUT WEN WE WERE TOGETHER,..N NO RESPITE STILL WAITING,SONS THERAPISTS OR HIS DR. APPTS.WHO CAN WORK FULLTIME JOB..N NO CAR..MY SONS AUTISTIC YOU MORON..!!!! THATS WAT I WANNA SCREAM N HAVE IN PAST TO THESE COUNTY PEOPLE B4..THEN YOUR SHOWN RESPECT..MY GOD..ASSISTANCE WORKERS NEED TO B SYMPATHETIC...WHEN WORKIN WITH ANY PARENT OF A AUTISTIC-PDD CHILD OR ANY DISABLED CHILD..B/C WHERES THE NEAREST BRIDGE..LOL...JUST KIDDIN..SO GO TO MEDIA..VOICE IT GIRLFRIEND!!!!!!!!!!!!!! CANT HURT ..THINKIN BOUT YA..HUGS.LOL Cyndie... funny you mention the media because I have seriously been thinking about it!Michelle,
You should go to the media. You are so knowledgeable and well-spoken (I assume--you're well-written I know). I haven't done anything with SSI because I haven't had to. I guess I'm damn lucky my ex takes care of all of Paul's therapies, camps, schools, etc. It's me he won't give a dime to. Dieting is good though lol. There are so many people hurting here with the ssi. I had no idea. Autism is more and more in the news. Contact FOX, CNN, local papers, big papers--NY times, LA times, etc. And NPR, they'd be all over a story like I think. It isn't like this is some unique story. I'm not trying to put pressure on or make you feel obligated--that's the last thing you need. I just want to encourage and support you. You've got a lot to say and you say it well.
It's proactive and can't do any harm. Hell, just e-mail 'em.
ps I did a much smaller but similar thing re: an issue. I searched to find out who had written the most about it. I found the top 10-20 newspaper writers and tv people with my story (nothing about asd) and one newspaper picked it up.
No pressure--just belief in your abilities and support for whatever you do.
pat
Michelle, you have also given me very helpful information and links to go to with my many questions and I thank you for that. Like others I see you as someone who is very strong and I have no doubt that you will be able to pick up the pieces and get your ds all the help he needs. When all is said and done you will probably help more people than you can imagine.
Good luck and take care.
Stephanie
Thank you so much for those words of encouragement... I always feel like some insignificant nothing..... it made me feel better. Thank You,... right now I am making sure I leave enough of a paper trail because I intend to make sure the school pays for what they have done and hopefully things will come together after that.I think everyone missed the point here. Michelle's son was on SSI. They later deemed he was no longer disabled. And after you are on SSI they do give more consideration to the school reports if there is a conflict between the parents and the school. It doesn't matter how you list the diagnosis's on the SSI papers. Also did you know even if you ask for a hearing, it can take up to 18 months to get one? Unless you can demonstrate an undo hardship for the general wait time in getting a hearing. Then they might move it up.
Tammy
as far as school goes you should be able to get more services for tyler, ie and aide if he is in regular ed class. can put him in class for autistic children if he needs that. classes smaller different teaching methods. up to you and tyler. as far as money from gov. will help later when he turns 18 will get more money and services then with autism label. colleenI only know about Texas and California schools but both of them will give you more services with autism rather than PDD or Aspergers. One on one aide, behvioral consultant who come to the home to work with child on specifics (can't remember the official name), our district even had a dedicated aide for a child in the afterschool childcare program that isn't part of the district!
pat
HI... Veroniqua Has PDDNOS and from what i have understood that classic autism was a more severe case! SSI gives our daughter disability! They said until she can fuction as a normal child/person she would still be considered disabled! She is also now on Ohio Medicade Disability and we no longer need the referals for her Nuro! I would definatly ask for a hearing Because ADHD and ADD are considered to be disabilitys for SSI! Our Nuero from Akron childrens said sometimes they just deni you because they feel like it and to try again when we applied but we were approved the school (Robert Bycroft) Helped alot!
You can get SSI with a diagnosis of pdd-nos but recently they have been recertifying kids that have that diagnosis. And after the SSI re evaluation interview I got a letter stating that "under our rules your son is still considered disabled. We will review his case again in three years". I have never had a recertification with Jeffrey. But he has a diagnosis of autism, pdd-nos, adhd, and add.
Tammy
I don't really have any advice for you, since I am in Canada..but I wondered about Classic..
When Owen was diagnosed, I asked her if he was mild or severe, and she said.."ahh He has classic autism" I didn't really understand what that ment but assumed maybe in the middle? where you told it was high functioning?
hey michelle,not that i have any answers as you know i battled with the school system myself.but i did want to say that your in my thoughts and prayers each day that goes by.i also beleive that you will find the strength to keep going from day to day.Because your a strong woman, you've certainly proven that tome many times. try and hang in there. maybe contact your ssi office and tell them his dx has changed and ask for a hearing. mom2carloIf his diagnosis has changed then you would have to call another meeting with the school and inform them of the change in the diagnosis. And see what they do, or say. As far as SSI goes, until the school changes it mind its not gonna help you any. As you know I posted an report I found months ago , that came from SSI, and it stated that when there is a conflict between what the school says and what the parents say, SSI tends to side with the school. Another option with SSI is to close out his current case, wait two or three months and open up a new one. SSI still might make him go through their own evaluation, and if they evaluation results are the same as the school, you are still back at square one with them.
Tammy
I say classic autism meaning "AUTISM" not PDD NOS or Aspergers which is commonly refered to as "autism"
And yes CLASSIC AUTISM can be severe, moderate or mild, low or high functioning. (The functioning level is generally determined by their IQ)
http://www.wrongdiagnosis.com/medical/classic_autism.htm
Medical Dictionary: Classic autism
Medical dictionaries: Medical dictionary, Medical malpractice dictionary, Medical Acronymns/Abbreviations
Classic autism: Another name for Autism (or close medical condition association).
Classic autism: Classic autism is listed as a type of (or associated with) the following medical conditions in our database: Pervasive developmental disorders, Possibly autoimmune diseases, Brain conditions, Behavioral disorders, Mental illness, Psychological disorders, Psychiatric disorders Classic autism (medical condition): Childhood mental condition with social and communication difficulties.
Classic autism: Autism is not a disease, but a developmental disorder of brain function. People with classical autism show three types of symptoms: impaired social interaction, problems with verbal and nonverbal communication, and unusual or severely limited activities and interests. Symptoms of autism usually appear during the first three years of childhood and continue throughout life. 1
More information on medical condition: Autism:
We met with the child psyc again today for the third time now. The first appointment was 3 hours long,,, then 2nd was probably an hour to an hour and a half and today was 2 hours.
During the last appointment I left past evals with the doctor to review. This time we talked about specific characteristics Tyler has today and different behaviors, anxieties, struggles and so forth. The doctor believes Tyler has (classic) autism (higer functioning now) I have been asking and trying to get everyone on the same page. Tyler was originally said to have PDD, then autistic spectrum disorder, the neurologist has always listed his diagnostic code as infantile autism and PDD NOS.... Funny he has met all the diagnostic criteria for (classic) autism all along. So today the Child Psyc said he is going to write up his report and change Tyler's Dx to (classic) autism.
Heres the question.... I keep hearing how this opens up new services that weren't available before.... with the school, with therapies, with SSI (who had decided since he made progress since he was 3 and first diagnosed he no longer was disabled) So anyone with help I would appreciate letting me know what to do next and how to do it as I have been extremely stressed and overwhelmed recently and having great difficulty just going day to day.