Please Help, need IEP advice! | Autism PDD

I am going thru the IEP process right now for my twins with autism. I hired an advocate to enoure that my sons are getting the services they need.

I am fortunate enough to be in a town where they have an excellent program. My kids are in a full year program with 1:1 tutors that are ABA certified. They even come to my house 1 time a week with each child to show me what they are working on and to help with the carry over.

I am scared to death for them to start just vecause they have been in my house for the past 3 years and now they are going to a new environment. But we are having a 2 week transition period to ease them into the new school and to get them to know their tutors.

You may want to consider seeing what other towns in your area offer and see about putting your child there.

But an advocate will help you fight the system where you are and tries to get you what is appropriate for you child.

GOOD LUCKI have no answers. Sorry. I am curious about this too. We are starting preschool soon as well and the most they offer is 2.5 hrs 3 x a week. Nothing at all in the summer. They told me I couldn't prove he would regress so tough. It sure doesn't seem like enough, does it. I was told anything more than this would have to be done privately at my expense. I have recently applied for a waiver through the county that pays for the therapy (6 - 9 mo waiting list), but then you need to commit to 25 to 40 hrs a week, which is impossible as I have to work at least 40 hrs a week to survive. There is a place that I haven't checked out yet that may provide therapy on the weekeknds, but it still would be almost impossible to fit in enough time. Maybe your county has a program that pays for therapy as well? Try calling your local Human Services Dept. It's all so frustrating, isn't it. I really go back and forth some days on how much of a difference 10 vs 25 hrs would really make. I guess it is impossible to know what would be spontaneous progress as opposed to the therapy. I guess we can never really know. Just keep doing as much as we can. My son will be starting preschool in Dec., when he turns 3 and I am new
to the IEP process. I just got the results today for the school district on
the testing they preformed. I think it was the first time I broke down
since his diagnosis of autism a few weeks ago by Children's Hospital. He
is so far behind in his adaptive skills - approx. at half his age and a year
behind in speech and gross motor skills. In cognitive skills he about a
year ahead. On the good front the school is recommending adaptive PE,
OT, and ST but they haven't said how much yet. Also they have agreed
with the Doctors diagnosis. 1st of 2 IEP meeting in 2 weeks and
hopefully they will tell me more then.

On the bad front, they are only offering a 10 hr a week program with 12
kids, 1 teacher, and 2 aides for 6 "normal" children and 6 delayed
children. To me this is not enough. The problem is the school contracts
out their preschool program to the county MRDD and many of the other
school districts in this area also subcontract out their preschool programs
to MRDD and thus there are not alot of different options. It is just the
same program being run in many different schools and school districts.
MRDD is also very anti-ABA and pro TEAACH.

I want to challenge that 10 hrs a week is not enough and that my son
needs more 1 to 1 attention and thus perhaps a aide. I am not that stuck
on what method they use - ABA, TEAACH, RDI, Floortime, etc., but I feel
he needs at least 25 hrs a week of intervention. I pulled the 25 hr number
from the surgeon generals recommendations, as well as a US gov.
accountability office report recommending a min. of 25 hrs. I would also
like to see some ESY.

Now since he is turning 3, he doesn't have much of a past educational
record to prove he needs more than they provide, but MRDD also runs the
EI program he is currently in. It seems very similar to the preschool
program, just smaller classes and no "normal" kids. The test they
preformed to show he needed Early Intervention showed he was age
appropriate in all areas except speech. The school district is showing he
is now at about the same age level in most areas as he was by the MRDD
test 10 months ago or further behind. I am doubtful of the MRDD test
but it helps prove that he needs more services since according to their
test results he has not improved in 10 months.

Any advice you guys can give me would be greatly appreciated - Am I
asking for too much? How can I get what I feel my child needs? Any
other supporting info you might be able to think of to back up my
argument and any just good old IEP advice would be appreciated.

Thanks

PS. Although the school district contracts out its preschool program the
IEP is still a contract between me and the school district. The school
district provides the building but MRDD provides the teachers and I
believe the ST and OT.

I am sorry, what a yucky situation. I would question their knowledge of ABA if they think TEACCH excludes it, but this is not likely to get you anywhere. Make sure you make it clear that you feel your son needs more service. Bring the official recommendations with you, and write down all of your concerns so they are documented.

With such low adaptive behaviors, perhaps they would pay for a couple of hours of OT outside of school as well? Even in areas where there are not many private autism therapies, there are often occupational therapists. Just a thought.

I know there is a need out there. I am in a big city, and I am the ONLY person offering private tutoring for autism. That is just weird. What state are you in?

I think the number of hours depends on the child. I have seen kids who start to get stressed or shut down after about 10 hours a week, and I have seen kids who can handle 25-30 hours. What do you know about your son's tolerance for interventions? I think pushing a little is fine, but it is only worth fighting for what is truly going to benefit your own child.

"Anti ABA and pro TEACCH" doesn't make much sense to me- the two work beautifully together. Here is what I think you mean: ABA is one on one teaching, TEACCH is independent work. Neither statement is true of those methods, however if that is what you mean by their philosphy I can understand why you are upset. If they are pro TEACCH- you might investigate the methods a little. TEACCH is when the teacher works one on one, or one in small group with a student or students, teaching new skills (often by using ABA style of teaching). Skills that have been mastered are put into work bins, and the child then also has independent work time, doing activities that were previously learned.

It is easy to see the possible problems with both methods: If a child is getting one on one or one on small group teaching ALL of the instructional time, when does he or she ever learn to do something him/herself? AND if TOO much independent time is given, is the direct instruction enough to teach new skills?

I recommend observing the program first, then bring your feedback to the team at the next IEP meeting. If you observe, you can be specific about how the service may or may not benefit your son.

Thanks, for the suggestions. Unfortunately there just is not much in my
city. It seems autism intervention has passed us by. If there were any
private pay options, I would pay the money to get him the help he needs.
There is not center based therapy, unless I want to drive 1 1/2 hours each
way. I have been trying to provide some home based VB and the last
consultant has not shown up for 1 1/2 months - she seems to be too
busy with her other clients and her schooling. I told her I was willing to
pay her extra to help train the therapists but she can't seem to find the
time and seems to only find the time to collect the data and look at it.
Thus I find myself running his VB program and am don't feel like I am
doing a good job at training the therapists and moving things in the right
direction.

I do think my son can handle 25-30 hrs based on what we have been
doing with him so far. The only problem that I notice is that right after EI
school he seems a little more drained for an hour or so, but then they
have gym right before school lets out. He rarely takes naps anymore.

As far as ABA and TEACCH, all I know is that they all seem to have
negative opinions of ABA and talk about how they have been to NC to
learn TEACCH. I just have to wonder how much 1 to 1 time can they have
with my son if their are 12 kids in the class and only 10 hrs in the week.
My guess would be a half hour per week. I do not seem my son doing too
much independently right now, except to perhaps play with trains or cars
or watch TV. I have to pretty much direct him in everything and his
adaptive behavior is extremely low.

Thanks UTBcool, I have actually already ordered the book "Educating
Children with Autism" and it should be tomorrow. By the way it was cheaper
on Amazon. I have a hard time reading e-books.

That is exactly what I want to do. Arm myself with as much info as possible
and hopefully they will give my son what I think he needs. I have thought
about the advocate route, but do not want to start out in an adversarial
position, if it is not necessary. I am in Ohio. Unfortunately some areas of the state have better services
than others. I am in a city and the metropolitan area around this city is
around 1 mil, so you think there would be more available. Some parents in
the area want to start a private autism school since Ohio has the autism
scholarship giving us ,000 if we choose not to use the school district.
This would be great if it happens, but it is not going to help him right now. I
guess our local school district at one time offered a more extensive
preschool program but they have done away with it.

From what I heard the original studies showing TEACCH was effective, used
30 hours a week. If that is true what is 10 hrs going to do?

Our early childhood program used 10 hours per week for the last several years, using TEACCH and ABA (combination) and every child who has gone through it has made progress. This year they increased and (I think) this makes 24 hours per week with the change. From my personal experience in elementary ed, I will have to wait until next year to tell you (informally) if there is MORE progress overall with more time. I guess after all of my rambling- while you fight for more 10 hrs will still help some.

I am sorry, it breaks my heart to hear these stories. I don't understand how we can have a frequency like 1 in 166 and still have people who have to drive 1 1/2 hours for a service. Yet, the money always seems to exist for military, etc,

Congress paid the National Research Council to address specific questions regarding Autism.

Here is the link. http://newton.nap.edu/catalog/10017.html#toc

They specifically address how many hours a preschool child should be in a program.

When I when to my son's IEP I was armed with this information. They told me that once my son did not need his nap they would increase his hours in the program. I am fine with that and it is documented in his IEP that we will increase the hours at a later date.

UTBcool39019.4641666667I would SERIOUSLY read up on ABA. Lots of the bad opinions of it stem from old methods that have been done away with for YEARS. Also, sometimes people forget that ABA gives SKILLS to kids, but only going out into the big, bad world and USING those skills is going to give a child the full benefit. Educating Children with Autism is the best book, IMHO, for parents of young ASD kids. It is mostly ABA based and there is a lot written in the book about that. ABA is the ONLY method that has reliable statistical evidence that it works. That is because statistics is a PART of ABA (discreet trial) so there is endless information that shows each child's actual progress, day to day. Between 20 and 40 hours per week is what's usually recommended. If I had ,000 to spend on my preschool ASD child, I'd spend every penny on ABA and VB (Verbal Behavior, a language method that helps kids USE their developing language and is based on ABA).I feel for you. I went though alot of things to get my son into the school system out here.

I was told by my mother-in-law, whom is a fourth grade teacher in another district, that the school will offer my son services for is speech problems.

I called the school and they told me that there was no such program that I was misinformed. I called my mother-in-law back in tears

and told her what they had said and with in 30 minutes of her calling the school they called me back to sit up the appointments for the test that needed to be done. We then had our first IEP meeting and we were only giving 12 hr a week and 8 children in the class with one teacher and one aide. Four of the children weren't potty trained yet so that was time away from Nathan. Three were unable to move around on their own so more time away from Nathan. With all this they still would not change the amount of time he was at school. The only thing they did was say that next year they would make is stay longer. Which they did but it didn't help with the year in question so I completely understand were you are coming from.

Maybe my info will help.

My son (PDD:NOS) was recieving 17 hours of EI when we met with our school district for testing. He scored really low and after being told by the team they didnt want to deal with his issues they sent him out of district to a private school. He is in a classroom where they day is from 8:45am to 2:15pm five days a week. There are seven children in his class and one teacher and four aides. The speech therapist is in the classroom for two full days per week, occupational therapist one full day, and behaviorist another full day. He receives ST,OT, and PT. Although they limit the IEP to say ST 2xweek for 15 min and OT 2xweek for 30, I know because the therapists are in the classroom all day he is getting more then what is written in his IEP.

His IEP also says he is supposed to be getting two hours of discrete trial ABA per week since last july but the district has yet to provide anyone yet saying they cant find anyone. We recently filed for mediation for an increase in the hours per week.

ABA discrete trial, as long as it is done by the right person, has been the best learning technique for Gabriel. We have tried other approaches and this is what we found works best. When I first was told about dicrete trial i was terrified. Someone told me that they force your child to sit in a chair and do things in repetition. 20 or thirty times until they get it right even if they are crying or melting down. For us it was nothing like that. We have a little table with two chairs. Gabriel sits in one and the teacher sits across from him. They worked on simple things like combing his hair or putting a hat on and worked up to matching etc. Every now and then they would get up and sit on the floor and do something else like puzzles or coloring. they he would get up and go back to his chair and work again. He did it in two hour blocks. He loved his therapist and got excited when she worked with him. The success he had with her built up his self confidence :)

Our ultimate goal is a full day of preschool and two hours of discrete trial after school. We will fight our district until Gabriel recieves this. We are a family of five on one income and cant afford an attorney either. We are going to mediation and/or due process if that is what it takes. I think because we have recorded every meeting and made every request in writing as well as detailed notes on every conversation that we may be able to do this without an attorney. And i figure what is the worse that can happen??? He stays with the services he has now??? well that isnt so bad and i will feel better knowing i fought the "good" fight.

I do have to say the more you know the better. Make sure you put every request in writing either by letter or email. Send letters certified and ask for a written response in a certain time frame. I can email you my phone log to give you an example of what I am talking about if you would like.

Our advocate says i am probably known as the mom from hell but i dont care. My son is getting what he needs to be successful and that is all that matters.

Hope this helps

Well thank-you to all that gave me advice. I signed the IEP today. I got
the SD to provide 60 minutes a week of speech therapy versus the 60
minutes a month they were offering. They also increased his classroom
time from 10 hours per week to 20 hours. Under their current structure I
think think is about the best I can do. Currently the school offers a half
day in the morning and a half day in the afternoon with few or no children
going the full day. Is it an ideal situation, No, but it is better than what
they were offering.

I am concerned that the morning and afternoon will just be a repeat of
each other and will continue to supplement at home with ABA as well as a
little RDI and floortime since the school is more into a structured teaching
format. ( I tend to use a little bit of everything depending on what skills
we are working on at the time)

The SD will also be providing him with OT and adaptive PE and I plan to
continue with his private ST and OT.

I guess I will see how he progresses over the next six months and then if I
need to, I can move to another state that provides better services. I think
part of the problem is that my state has very minimal guidelines as to
what special education for preschoolers with autism should be and the
SDs of course only want to follow what the state mandates.

You are doing a great job and it's totally true that there are consultants and there are consultants, therapists and therapists, schools and schools. Not only is each situation different but each situation changes from year to year. We parents have to constantly work on making sure our kids get the help they need when they need it. HOW to get that help varies. Keep up the good work.

Don't be afraid to ask for what your son needs, over and over again if necessary. My grandson has recently been diagnosed with PDD, and my daughter has been fighting with school systems since he was three. The town where she lived at that time tried to tell her they had no programs for Speech, which was all that was apparent at that time, but changed their tune when she mentioned the law and that she was a teacher. Since he has entered regular school, I have become the advocate. I go to all his PPTs and take notes. She gets upset and forgets what they say, she also doesn't want an adversarial relationship with the school as she has another son and also has to deal with the school every day on other issues. So I attend the meetings and push, push, push for what I feel Matt needs. Education is your best defense. Connecticut has a book for parents of Special Ed kids online so that parents know their rights. Check your state department of ed website to see if your state has one, if not, go to ct.gov and find the Department of Education website (listed under Executive Branch). It really helped us to know what our rights were. Be prepared to fight, but know that it is to get what is best for your child. They will try to give you the minimum, but if you are vocal and persistent, they will give in. I'm also a teacher and I've seen parents get private speech therapy, paraprofessional support for their child, touch screens and computer programs, I've even had to go to a student's home to install software because the parent was persistent and vocal. Good luck to you. I don't know much about the programs you are talking about, so I can't give you advice there, but I do know that the squeaky wheel always gets the grease in our school system so I recommend that approach to you. Also, an IEP is a LEGAL document.They must follow it to a T. So if you want something for your child, insist that they put it in there. At the very least, keep requesting PPTs every month or so until you get what your child needs. Keep us posted and let us know how you make out. I'm praying for you. teachinggram39030.880625Tzoya,

I have nothing against ABA and VB (although I think there are some good
points in other programs also), the school district does. I have bought
and used the info from Educating Children with Autism per your
advice previously, and we have implemented a home based VB program in
August (before we got the diagnosis). I do not think I could talk the SD
into implementing a ABA/VB program, others in our area have tried in
court and failed.

Our home based program has had a rocky start with a less than stellar
consultant that doesn't follow through on things. I have had to train the
unexperienced therapists myself and then have had do deal with all of
their scheduling conflicts and some weeks it a nightmare. There is not
alot available in this area in the way of consultants and trained therapists.
Also, never having done this before, I am not sure we are doing it that
well and somehow think our program is lacking.

I figure in the end, I will still supplement with a home program, but would
like to get more experienced help and more services from the SD. I am
trying but I wasn't trained for this and I still have a big learning curve to
overcome.

Thank-you. The IEP meeting is today, but I had to meet with the ST
yesterday because she could not attend today. So far she only wants to give
60 min a month ST, and her goals for him were about 25% of the goals I
would have liked for him. We will see how today's meeting goes. I guess I
am going to have to be very squeaky.
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