BUMP
THANKS FRED....BUMPFor those with children under the age of 14, it doesn't pay to worry about adult services yet. Things will change A LOT by the time your children qualify for adult services at age 18. And, in order to qualify, the child MUST have an IQ of 59 or lower or a Vineland of 69 or lower. For those whose kids are higher functioning, adult services are not available. Now, remember, an Asperger's individual with a gifted IQ COULD have a Vineland as low as 69. However, that doesn't often happen. EVERY child with an IEP qualifies for Transition services paid for by the School District, though. IDEA 2004 has strengthened the school district responsibility in this area. An IEP MUST include a transition plan once a student reaches age 16 (lower in some states) and CAN include a transition plan as early as age 12.
VCuddy -- I wish I could be your advocate, but I live 3,000 miles away. Try hard to find an advocate in California. You must work on where your son will be and what he will be doing in July of 2009. There IS support out there. Getting your son to the point where he CAN participate in society by getting his meds working better is probably a good first step. Good luck.
TZOYA I ALSO WISH YOU WERE THE ADVOCATE...I AM WORKING ON ALL OF THE ABOVE, BUT I HAVE TO WAIT FOR A NEW REFERRAL FOR THE NEUROLOGIST, THE DENTIST WAS OUT TODAY, AND I HAVE TO DEAL WITH THE INSURANCE FOR THE EXAM HE NEEDS TO SEE IF HE WAS SEXUALLY ASSUALTED.I KNOW I HAVE TO FOLLOW THRU WITH AFTER SCHOOL PLACEMENT, BUT GEEZZZ I AM ALONE AND SWAMPED..I KNOW I AM ON THE BREAKING POINT BIG TIME...
THE MEETING IS SET FOR JULY 17 AT 10 AM. NOW I HAVE TO GET EVERTHING IN ORDER,,,THAT INCLUDES COPIES OF HIS SCHOOL FILE..ALSO ALL OF A SUDDEN I AM NOT GETTING DAILY COMMUNICATION FROM HIS TEACHER.
DO YOU FLY?
TZOYA IF YOU DO NOT MIND, KEEP THE INFO COMING IN, I CAN USE ALL THE HELP YOU CAN GIVE, EVEN FROM SO FAR AWAY..IS THAT ALRIGHT WITH YOU?
Gosh reading this has made me angry at the school system. It is shocking to me that in this day and age they did exactly what CSM said happens. I had no idea that they could even get away with something like that. I am so new to all of this too. I just wanted to stop by and say I'm thinking of you and hoping for good results from all of this. I read a lot of your posts and think of you often although usually ,because of an age difference between our children, I just don't know what to say that could help. Take care,
Karrie
VCuddy...I don't know if it matters or not, but YOUR posts are the ones that made me finally get my stuff together to have my son evaluated. Tyzoa's provided common sense...but your posts gave me guts. When I lurked ,I watch you struggle, fight, love and cry for your son. Your strength in a much worse situation inspired me to have some grit in my much easier one.
I will send big wonderful life changing vibes your way....Peace.
HELLO EVERYONE, THE MEETING IS SET FOR NEXT TUESDAY AT 10 A.M. AND I DO NOT MIND SAYING THAT I AM SCARED OUT OF MY WITS...AND OF COURSE VERY ANGRY. THE SCHOOL IS NOT EVEN TALKING TO ME NOW, SO DAILY COMMUNICATION IS GONE, I CANN OT WORK ON SOMETHING IF I DO NOT KNOW ABOUT IT. ALSO I GET THE IMPRESSION THAT THEY ARE DOING THIS TO BLINDSIDE ME AT THE MEETING. THIS WHOLE THING SUCKS, AND I TRULT FELL I KNOW THE FRUSTRATION MY SON FEELS IN NOT BEING ABLE TO GET HIS MESSAGE ACROSS TO ANYONE. I SURE CAN'T GET MIND ACROSS
SO FAR THIS WEEK WE HAVE TWO PRETTY GOOD DAYS IN THE CAR, BUT LIKE I SAID BEFORE I HAVE NO IDEA HOW HIS DAY IS AT SCHOOL, AND YES I HAVE CALLED AND LEFT MESSAGES FOR HIS TEACHER..BUT NOTHING.
TWO DAYS AGO, I WISHED FOR SOMETHING THAT ALOT WOULD THINK OF HAS BAD...BUT WHEN I SEE MY SON SUFFERING,AND ALL HE HAS BEEN THOUGH...HE HAS NO PEACE AND TOO MANY PEOPLE THINK THEY KNOW HIM BETTER THAN ANYONE...ANYWAY..DO I NEED TO SAY WHAT I WISHED FOR?
THANK YOU ALL FOR YOUR SUPPORT...PLEASE KEEP THE GOOD AND HAPPY THOUGHTS COMING,
Trying to talk you out of providing more supports and throwing in the towel, I guess. Not to pry too much, so I hope you don't mind me asking, but how effective can it be to request an outside evaluation in a situation like this? If nothing else, maybe you could get a new placement for your son (or vcuddy's) where they actually try different things to help your son meet those criteria?
I hate being so ignorant about this, and I don't want to dredge up any bad things by asking, but I am trying really hard to understand. I get that there is only so much money to go around, but still...
I will posts some websites that are good for transition. But the truth is you will only get REAL help if you take your District to a HEaring and you need an experienced special education lawyer for that. IMHO, it's way past time to do this. Many if not all lawyers do some pro bono work, meaning that they don't charge. They charge well-off parents enough so that they can fit in a pro bono client or two each year. This is part of the professional ethics of a lawyer - to take on worthy cases in spite of lack of funds at least some of the time. Go to www.copaa.org and click on Find and attorney and go to your state. Start there. These are well-know, excellent attorneys and some do do pro bono work. Or they can point you to someone who does. Good luck. yes. It really sucks. They have been trying to do this with my oldest son for the past 2 years. They have tried to put him classes with lower academic standards because they felt he could not keep up. He proved them very wrong last year.Vcuddy...I'm sorry I don't have any advice for you...I'm too new at this. But I am thinking of you and your son, and I hope you can gain some headway on getting him the services he needs!
BTW, can they really refuse to do a transition plan because of non-compliance issues? Tzoya, anyone else maybe who has experience with this?
A big BUMP hoping for more answers and support for vcuddy!
Ah...So, if I'm understanding you correctly, what they do is use non-compliance as an excuse to set low goals, or goals that are not attempted at, in order to demonstrate a child's inability to meet the acceptance criteria for a transition program?
Sounds really stinky to me, to say the least.Believe me, I hear you. So do so many others on this site. By age 15, the school system is REQUIRED to be a Transition Plan into a student's IEP. How they get those services in place may vary, but the MUST put services in place that will transition a student to adulthood. This is all very complicated. You should get a local advocate.Vcuddy, you and your family have been on my mind for a while. I will continue to keep you in my thoughts and I hope that things will improve.
vcuddy, I hope things seem better today. I wish you could find more support, understanding, and practical advice. Thank God for tzoya. Just know, though, that the lack of responses only means that most of us simply do not know how to advise you, not that we don't care. Anyway, let us know how your meeting went.
For us parents of younger children, how do we find out about adult services for our kids? Most of us have kids who are so young we're not sure what level of support that they will need as adults, but the issues being discussed here are still relevent because we need to learn what is available in our area, and if what's available is inadequate, we need to become involved asap to ensure that the needs of the disabled adult population are being met in some satisfactory way.
gtto could probably provide some good insights about these sorts of issues - how to learn about what services are available where - how to advocate for better services in places where they are lacking, etc. Are there any laws in place to ensure that disabled adults have some level of 'appropriate' care - in the same way that disabled children are entitled to an 'appropriate' education.
These issues are years down the road for most of us, but it's probably never to early to start thinking about these things - it may influence where you put your charity dollars or how actively you participate in the local political process, which national groups you volunteer for, where you advise such groups to direct their funding, etc.
I can't give you advice but I do keep you and your son in my prayers. I wish there was something I could tell you that would help. I pray for the right people to come in to your life that can help your son and make things better for you both. It will happen I am sure, with all the prayers going your way. Keep up the hope.
IT WAS A TERRIBLE RIDE TO SCHOOL TODAY...I HAD TO PULL OVER SO A DADS WHO WAS FOLLOWING ME COULD GET INTO THE CAR AND HELP.
FRED..WHAT YOU SAID IS SO TRUE..SERVICES FOR ADULT DISABLED ARE LACKING...MORE THAN YOU KNOW..ALL THE MONEY THAT IS GOING TO YOUNGER CHILDREN IS GREAT, BUT THE YOUNG ADULTS ARE LEFT OUT AND ARE SUFFERING. I WISH THE SERVICES WERE THERE, BUT THEY ARE NOT.THE SIMPLE SOLUTION MOST "PROFESSIONALS "TAKE IS TO DUMP THEM INTO GROUP HOMES OR INSTITUIONS..RATHER THAN HELP WITH THE BEHAVIORS.
I AM AT A LOST, MY MIND IS SO FULL I AM EXHAUSTED. ANY THOUGHTS RIGHT NOW MEAN SO MUCH TO ME..IT HELPS ME SO I DO NOT FEEL SO ALONE...I AM BEING LOOKED AT HAS IF I AM CRAZY.." OVER PROTECTED..NOT KNOWING WHAT SHE IS TALKING ABOUT MOTHER." SO PLEASE KNOW THAT YOUR KIND WORDS AND THOUGHTS ARE WHAT IS KEEPING ME GOING.
Hopefully some of the combating autism act will be earmarked for helping disabled kids who are already in the late stages of the system and who won't benefit from whatever early intervention techniques they uncover. Parents of young kids are really driving the agenda with how these funds are allocated, it seems, and sometimes I think the hysteria needs to die down a bit so we can think rationally about how to best use these funds to help as many people in as many different circumstances as possible.
FRED..THE DAD WHO HELPED HAS A SON WHO GOES TO THE SAME SCHOOL AS MY SON..HE HAS BEEN HELPING FOR A WHILE NOW,TODAY WAS THE FIRST DAY THAT HE HAD TO GET IN THE CAR WITH ME.
I AGREE WITH YOU IN THAT EVERY PERSON,YOUNG AND OLD, WHO ARE AFFECTED WITH THIS AWFUL AUTISM NEED TO BE INCLUDED IN THIS BILL.BUT I DO NOT SEE THAT HAPPENING. I SO UNDERSTAND FOR THE EARY SERVICES, BUT YEARS AGO MY SON FOUGHT TO RECEIVE SENSORY INTRAGRATION, AND NOW IT IS NOT THAT HARD TO GET.I AM SO TIRED OF HAVING TO FIGHT FOR THE SERVICES..MAYBE IN THE LONG RUN WHEN ALL THESE YOUNG CHILDREN BECOME ADULTS THE SERVICES I AM FIGHTING FO NOW WILL BE AVAILABLE,BUT AT WHAT COST TO MY SON..OR ME FOR THAT MATTER?
I know you are trying to avoid your son being put back into residential care. I am trying to write, here, all that I know. I also know that the year your son turns 21, he no longer will be in school. He will no longer get the supports the school is paying for out of its budget. So what you really need to be doing now is finding out what services he will be able to get when he ages out of school and try to put those in place now. Get the meds straightened out now. Figure out what he will be doing during the day when he's no longer in school. I know this is scary, but your son will be out of school in, what, one year? Or is it two, I forget? That is what you need to concentrate on doing now -- getting the services in place that can continue after he ages out. Perhaps the supports you get him now CAN stay in place. But you need to find that out soon. The school will be completely out of the picture very, very soon, so use this time to get things set up for your son in such a way that both he and you will be both happy and safe when he does age out. What services will he keep? What meds will help him? What will he do during the day when school is no longer an option? These are the CRITICAL questions. These are the HARD questions. I think about these things every day for my own son. What is his transition plan? Is there any possibilty for him to move into wherever he will be going at graduation now? A workshop? Dayhab? Find out what's available. Since he's over 18, adult services are available to him now, as well as school services. While he can access both, use the school services to ease him into wherever he will be spending the days as an adult. That's the best, most honest and accurate advice I can give you -- one mom of a Big Boy to another.
BTW -- Put in writing that you want the school district to perform an FBA using someone qualified. Go to cecp.air.org to find out more about FBA's and BIP's.THANKS FOR THE INFO TZOYA..I WILL BE CALLING A NEW NEUROLOGIST TOMORROW ABOUT THE MEDS...JUSTIN HAS 2 MORE YEARS IN SCHOOL..AT ONE OF THESE MEETINGS, (THERE HAVE BEEN SO MANY) I DID REQUEST THAT THE DEPT OF REHAB. GET INTO THIS HAS THEY PROVIDE ADULT SERVICES...I WAS TOLD THEY DO NOT OVERLAP...THE SCHOOL HAS TO REFER...AND THEY HAVE NOT AT THIS TIME. I GUESS I JUST ADDED ANOTHER PHONE CALL TO MAKE TOMORROW...
YOU DID NOT MAKE ME MAD...I JUST WANT SOMEONE TO HEAR ME.
SECOND..HE HAS HAD A FBA DONE BY THE SCHOOL. HE HAS A ONE ON ONE AIDE BUT JUST GOT HIM. I FOUND OUT TODAY THAT BEHAVIOR AIDES EXIST AND CAN BE REQUESTED, A REGULAR CLASSROOM AIDE IS NOT APPROPRIATE.THE FBA HAS BEEN IN PLACE FOR ABOUT 40 DAYS.
THIRD, HE HAS SELF INJURIOUS BEHAVIORS, AND WILL PUSH PEOPLE ,SOME PEOPLE IF THEY GET IN HIS SPACE DURING A MELTDOWN. HE MELTSDOWN USUALLY IN THE BATHROOM WHEN HE SEES THE TOILET.
I KNOW HE IS BIG, 6'5 AND ABOUT 300 LBS. BUT WHEN YOU START ISOLATING HIM BECAUSE OF HIS SIZE, YOU BORDER ON DISCRIMINATION. AND TO BE HONEST, I AM TIRED OF HIS SIZE BEING THROWN UP AS AN ISSUE. FOR GOD'S SAKE I CAN'T SHRINK HIM.
FOURTH THERE HAS BEEN NO MENTION OF SUPENSION...EVER.
HE HAS A LAWYER,BECAUSE OF THE GROUP HOME ISSUE, AND TODAY I DROPPED OF CURRENT PAPERWORK, SHE WILL BE COMING TO THE STUPID MEETING.
I GUESS THAT IS IT...I WANTED TO ANSWER THE QUESTIONS THAT WERE BROUGHT UP...HE IS A TEDDY BEAR FOR THE MOST PART, THE PERSON HE BECOMES DURING A MELTDOWN IS NOT MY SON.
ALSO I HAVE SO MUCH ANGER IN ME, I HAVE NO IDEA HOW TO GET RID OF IT.
TZOYA, THANKS FOR THE INFO..
AND PLEASE KEEP US IN YOUR PRAYERS. IF THERE ARE ANY OTHER IDEAS, PLEASE POST.I CAN USE THEM ALL.
OH..ONE MORE THING THE FBA WAS NOT DONE BY AN EXPERT IN AUTISM..IT WAS DONE BY A STAFF MEMBER..WHERE DO I FIND ONE OF THESE EXPERTS...AUTUMN AND BOOBEAR...THANK YOU
What I can say is that you might want to propose, if it's possible, to volunteer yourself as a "teacher aide" for Justin so that any behavioural issues or daily needs like going to to the toilet can be dealt by you and not be a distraction to the class/teacher...
At least that's what I'm doing in a way, for my boy. I literally spend lots of time in the classroom interacting also with the other kids but minimizing my presence physically by sitting or squatting.... I get away with it coz the teachers are used to me after 6 months of schooling this year. And I'm also in the PTA... so it helped a lot....
All I can say is... head in with an open mind.... arm yourself with practical suggestions you can throw in like allowing your presence in class as an interim measure....
Yet be ready also to defend your rights... (that's where maybe tzoya will be of great help)... and stand up for them.... I did... and still am...
DO UPDATE US..... vcuddy....
In our prayers...boobear please try to find an attorney or child advocate ASAP and DO NOT SIGN
First of all, ask that a written functional behavioral assessment be done. The FBA should be conducted by a BCBA, ideally, or at least by a professional who is an expert in autism. The function of your son's behavior MUST be discovered. There should be at least one day's worth of A-B-C data. To learn more, go to cecp.air.org and click on FBA. I am assuming your son is not being suspended as a disciplinary measure, but that a change in placement is being considered in order to give him FAPE. If it's a disciplinary measure (a suspension) they have to call a meeting with the District IEP Team to determine whether or not his behavior is a manifestation of his disability, which it clearly is. If it IS a manifestation, they cannot suspend him, and they MUST perform an FBA. By "they," I mean the District. They can either use the professionals at the school to conduct the FBA and create a Behavior Intervention Plan or they can call in outside consultants. Once they do their own assessment, you can disagree and ask them to pay for your own independent assessment. However, if anything your son is doing is a danger to himself or others, the District can put him into an Interim Alternative Placement for up to 45 days, without your consent, while all these other assessments are being done. By now, if he has been off his former medication for months, whatever he was on before is already completely out of his system. If he were my son, I'd take him to an autism expert psychiatrist and have that doc start trying him on new meds. The truth is that there are lots of aggressive tendencies that can occur along with autism, ones that cannot be fixed by behavior plans or counseling or even meds, in some cases. When those issues come up, if it causes the individual to be a danger or causes him to be so disruptive that he impedes the learning of other students, the school has the right and responsibility to remove him. Oftentimes, medication is the only answer if that person wants to stay in the same setting. Of course, you can try good behavior plans that are implemented by people who really and truly want to help your son, but if his behaviors are dangerous and none of the interventions or medications work, a new placement not only can be sought by the District, but it must be or they can be accused of impeding the education of the other students. I certainly hope that something can be found to help your son or that some setting can be found that would be a good one. (((HUGS))) BTW -- For newbies here, Vcuddy's son is nearly an adult and he is very, very large and strong. He is still coming off of meds. and the thing is, the more he comes off the more alert he is, and then the more he relives what was done to him. He is still pushing, and flips out when he sees the toilet in the bathroom. No one I feel, is hearing me...he has been traumatized and is trying to work thru it all... I will not do a county "school" as that is just a name for institution. Please tell me what to do . I will be finding out when the meeting is hopefully today....I do not want to go in and be blindsided. HELP!!!! Dearest vcuddy - hang on, hang on. Your strength will return again. Listen, in my wildest dreams I could never have imagined I'd write these words, but in Louisiana of all places (we are near last in everything but food, music, and architecture), there is a pretty wonderful group home. I don't know terribly much about it, except that Cole's teacher raves about it. It is called Saint Mary's and is in northern Louisiana where there IS land, birds, and few people around. This is the link. http://www.stmarys-rts.org/site/Templates/stmarys-rts.aspx?t abindex=1&tabid=63 Cole's Preschool early intervention teacher has two autistic sons herself, and because of their self injurious nature and a tendency to sometimes go after other people, they have lived there since the ages of 5 1/2 and 8. It was horrific for her and her husband to make this choice, but 7 years later, they see it was for their sons' best. The boys come home every other weekend and take family vacations, but are most comfortable at school. I haven't the foggiest notion as to whether this will end up being an option for you to consider or not, so please excuse me if even bringing it up is impertinent or hurtful. I just know that these young men will probably live there for a very long time - happy and healthy and confident. My fondest wishes are with you, and will be with you next Tuesday. Hang tough! I DO NOT WANT TO BE IN CALIFORNIA EITHER...MAYBE THERE IS A GOOD PLACE FOR JUSTIN IN ANOTHER STATE..OREGON IS ONE THAT COMES TO MIND. I DO NOT KNOW...ALL I CAN THINK ABOUT IS THE MEETING ON TUES AND THE IDIOTIC PEOPLE THAT ARE IN HIS LIFE. ANYWAY THANKS FOR THE WORDS..I HAVE READ YOUR POSTS AND FEEL THAT YOU CAN RELATE..THANK YOUThe law says that everyone has the right to an apporiate education. If the state has to send the child to school out of state it has to. Hopefully, things will go better for your son.
Autumn, I live in Stanton,California..Orange County to be exact. I live right down the street fromKnotts and Disneyland.Two places my son cannot go and into..way too much over load. I hate California, and I was born here.My family does not have communication with me, they had problems with Justin...they felt he needed to be "away and not heard from". I just feel that maybe a place where there is land, birds and no stupid people around us..he would be ok... I wish there were people from this board that were close by because it would be so nice to get an actual hug...I guess California holds too many bad memories.
ANYTHING
L
The big bad woolfvcuddy why don't you want to be in california? where are you?
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