HELP Twins 2 Kinder URGENT REPLIES NEEDED | Autism PDD

It is good that you have an IFSP, do you have your medical diag. also?  My grand daughter was dx at 3 1/2 with autism, she is 9 years old now and in the 3rd grade.  Prior to be in kindergarden at the age of 5, she was in early intervention and head start.  You still have time to check what programs they are going to offer, and to physically ck them out and the staff.  You do not have to agree to anything at the meeting.   Make a list of the services you think would benefit your son.

I live in mult. co. Please call your county developmental disabilities services, mult., clack., and wash., all of them.  They can be a tremendous help and will go to IFSP/IEP meetings with you. and their focus is on the child totally.  I will ck my pm in the morning if you need additional help.  Good luck, deep breathing, you do have the power! 

First of all, welcome.  We were all strangers to one another to start but soon found that we were kindred spirits linked by autism.

Second, calm down and stop feeling guilty. I have a nearly 16yo who has PDD-NOS, Hearing Impairment, ADHD and Tourette's and in all the years I've been dealing with this, the single most toxic thing I've seen is GUILT. It can cause us to become blind to the very things we can use to help our kids.  So step back and take a deep breath.  You have the Federal law on your side. In fact, your son should have been transitioned to the school district at age 3 and I have no idea why it's just happening now unless Oregon ALLOWS Early Intervention to continue from 3 to 5 (states are allowed to give MORE protections than Federal law but not fewer).  This Tuesday, we are starting a book discussion on this site based on an excellent book for all parents to read -- From Emotions to Advocacy.  It not only covers special ed laws that help our kids, but it gives tons of great strategic and tactical advice for actually enlisting the support of the school district.  You can order the book at www.wrightlaw.com , but join that discussion on the 16th, book or no.  YOu'll learn a lot about your sons' rights. 

Go to the meeting and listen. Take notes. Don't sign anything until you take it home and think it over.  Remember, nothing is written in stone.  If you sign for something but it's not working out or you want to add to it, you can always call ANOTHER IEP meeting.  Your son will not be placed in the same sort of kindergarten as your older son was. My guess is that your school system has changed A LOT at the early grades since your 18yo was there.  Most have.  Here is the basic right any spec. ed. child has. Access to a free and appropriate public education in the least restrictive environment in which he can learn, given all the appropriate supports and services.  This is also the right of your other spec. ed. sons.  This means EVERYTHING has to cost you nothing.  It also means that the placement has to be based on where your child can actually learn.  In order to learn, lots of supports will need to be in place for him. If he is not getting ABA and PECS at the moment, I'd start there.  Please don't worry about today's meeting.  Get what you can and call them for ANOTHER meeting when you have more evidence to present.

Thanks for your replies. Homeschooling is not an option for me as I have MS and am bearly well enough to care for the boys and keep  them safe. I simply cannot take on teaching them (well, as an educator I should say) alone or in the home. Plus, Peter LOVES to go to school, to the grocery store, anywhere EXCEPT home. He loves to be out and about...........a 180* switch from 3 years ago.  But I have thought that through and appreciate your thoughts on it.

Tzoya, what kind of evidence do I need to present? That is part of my loss. Im not sure what to ask for, what to demand.  The class here is worse than the one my older son was in. This is a classroom for children with special needs, grades k through 3 included. (all levels of disabilites and all disabilites)

They have been doing ABA and PECS since he was 2; but he really hasnt improved. Well, perhaps little leaps throughout this time, just to retreat back. He flaps far more now than even six months ago.

I have been begging for sign language sessions for him as I have seen one non verbal Autistic 12 yo trying to carry a big book of pics all fumbling through them to make her point. I think Peter wont be equipped to handle the frustration that comes from this or the intellectual ability to do it.

He has learned basic signs at home.   He does them only when prompted. He does not dress himself, feed himself, really anything like I have read so many other children on here doing. He is a big boy at 47 pounds who only eats 3-4 foods, drinks juice from a sippy cup and has the mental capacity of about a 12 month old.  What do I do for him??

I do appreciate your advise to stop with the guilt but again, here it is at 5 am and I havent slept in two nights, not a minute. This furthers my own decline and my own poor advocating at the meeting......or even attentive listening at this point.

I wont sign anything............thanks for that information! And to the gal in Oregon who said get other county reps to attend his meeting, I love that idea but I asked if they would transport him and they told me, we would have to move to have him access another counties services as they feel their's are meeting his needs.......and that "line" will continue, I guarantee you that!

Many thanks, Im tired but feeling less alone....I will have you few women in my mind when I go to this meeting in 7 hours.

Blessings for your time

Ruby

Ruby -- Please calm down about this.  I know I'm not in your shoes and that's easy to say. I but I CAN say that working yourself up to the point where you're not sleeping is going to do more harm to your health and, therefore, to the boys than any lack of services would. 

First of all, YOU are a part of the IEP Team.  Just as important (in fact and in the law) as the CSE Chairperson or anyone else on the team.  There are logical steps the Team must use to determine what an "appropriate" education is in any child's particular case.

Step One:  Present Levels of Performance (PLOPS)

The supports in the IEP are totally based on your particular child's NEEDS.  In order to determine what those needs are, there has to be evidence.  Both subjective and objective.  The Objective Evidence are the test scores in all areas of suspected disability. Since your son's disability pervasively affects his development, he needs to have been tested in OT, PT, SPeech IQ, behavior, etc.  There are standardized tests available in all these things.  WRite down a checklist to bring with you with all these areas on it. Check off if they have done a test in each of these areas.  Ask them to FULLY explain the scores.  I find that translating scores into percentiles works best.  If, for example, your child is found to be in the 10th percentile by a certain test, it means that 90% of the children scored better than he did.  In some cases, the "children" are only those who've taken the test.  In other cases, it includes the whole US population.  It's important to ask the group to explain EXACTLY what the scores mean and who your child is being compared to to get an idea of EXACTLY how serious his deficits in a particular area are.  Objective information needs to be included in the evaluation for IEP services.  This means, the experts (teachers, psychologist, therapists) need to write reports based on their observations of your child.  These observations should also be written about the day of testing. If the child did not fully cooperate with a particular test, those results cannot be deemed valid.  At the end of all the reporting, you should have test scores and expert educational observations to inform the IEP Team decision about placement for next year and about services. Oh, also, you need to bring with you all the prior test scores so you can see if your son has actually made progress. In areas where testing shows no progress has been made, you can insist on more services or different services or both.  If a child has not made progress in a year, that child is being denied FAPE (free and appropriate public education) and that means that additional services are needed.  If you don't agree with the results of the recent testing on your son, you can put a written request in for an Independent Educational Evaluation at public expense.  This means the school district has to pay for a second opinion from the outside evaluator of your choice.  They cannot deny this without taking you to a hearing and that would cost them even more, so most schools will comply if they know you know they HAVE to.

Step Two:  Deciding on what interventions and supports need to be given to your son in order for him to access FAPE.

As I mentioned above, if your son has not made progress, he is being denied FAPE.  It is incumbent on the IEP team to come up with additional strategies that WILL provide him with FAPE.  If PECS is not working, sign CAN be an option.  Also, they must provide YOU with parent training so that you can be secure in teh knowledge that you are consistently and appropriately using PECS at home and so is everyone else in your household.  If your son learns PECS, he won't have to drag around a PECS book forever.  There are technologies (Dynamo, Dynamite) that do PECS electronically and that the school will have to provide for him if he gets an Assistive Technology eval that supports that.  However, that will be for when he's older. SIgn and PECS are no different in what they do.  The one difference is that PECS can be understood by the man in the street. Very few people understand sign language.  The advantage to sign language is that you always have your fingers with you.  My son is old enough that PECS was not standard practice when he was little, so he learned sign. However, he ALWAYS attempted to speak.  That is not true of every child with ASD. 

Step 3:  Placement

Based on your child's needs and the sorts of supports that will be put in place for him, a classroom can be chosen.  Never agree to a classroom until you've SEEN it in action with your own two eyes (and bring your husband or a friend as a sounding board for later, too).  Your child is not restricted to your district, but he is restricted to the placement that is nearest to your home in which all his needs can be met.  Remember, at this point the IEP TEam has determined what supports and services are necessary, so they've basically drawn a picture of the sort of classroom he'll need to be in because not every class will be able to meet the requirements now written into his IEP.

I hope this makes things a bit clearer.  Don't believe everything you are told by the District.  Just keep Free Appropriate Public Education in the Least Restrictive Environment in which he can make progress in mind.  If you are doubting something, ASK the team to fully explain.  For example, if they are not changing the interventions he's already getting but you've been able to show that he's made little or no progress, ask them to explain how continuing to do the same thing in the same way is going to help your boy move further.  The BEST thing you can have on your side is evidence that he is NOT progressing. That will give you a BIG leg to stand on if you take the District to a hearing and they know that, so they are more likely to want to cooperate NOW.  

Please remember that the decisions of an IEP Team (of which you are a full member) MUST be fact based, evidence based.  This is like Law and Order.  You must present evidence that your child NEEDS something, not just a feeling that he's being mis-educated.  Feelings get us nowhere with an IEP TEam.  Facts do.

Good luck today.  I have an IEP Team meeting, too.  Let's compare notes later. 

Hi

Thanks for all that information. See, with my older son, showing his lack of progress was simple, through test scores, social skills, behavior issues, etc.. But how do I prove that Peter is not learning at an acceptable rate?

Seems they hold the cards with all their "data" about what he did at age 2 and what he does now. What data do I have to prove the facts? My data would have to be based on theirs or I would have none.........they are the only ones who have monitored those things.

These are not "feelings" I have that he isnt thriving. He is reverting to old behaviors, similar to some Autistic children do when they are first showing signs. He has gone back to the basic drawing he used to do when he was 2; but these teachers see this as him now drawing. That's just not the case.

How can I PROVE that he spends far more time "flapping" (is there a correct term for this never never land the lil ones go to?) now than he did before? Or that before he could sit and enjoy a simple Elmo video and now he only will watch the opening credits. I dont see how I can prove these are signs of regression.

I am not trying to down everyones ideas, I LOVE them. I just want to know HOW to show these things or better, how to PROVE them.

Thanks so much

Good Luck, Ruby

Hello Vanessa

Wow, what a story you have. Your son sounds more like James, higher functioning than Peter and good for you for having him placed correctly.

As I tried to explain, I have done this before for 12+ years and my older son did graduate..........with thousands of hours of fighting, researching, meetings, all the things I had to do to be sure he got what he needed in order to get that diploma.  I have no problems fighting for my sons, I have been fighting for someone my entire life.

Tzoya, I also appreciate your information, it is so valuable for me to have valid "terms" to use and things to request before they make this decision. Im sorry if I seemed to needy or demanding. You gave me a ton of information and again, I thank you.

I've always attended these meetings alone and when I am ready, and confident with what I am doing, I am okay about it. It's times like this when I am shaking from lack of sleep, my MS symptoms are so bad from lack of sleep and these things will show.....these are the times I just wish I had someone to come with me. I have a very poor memory as well so that makes these meetings more difficult than they used to be.

I need to go get ready........I have to leave in like 10 minutes.

Thanks Everyone!

Ruby.

SO how did it go?  I'm sorry if my last post sounded short. I didn't mean for it to come across that way. I sometimes get frustrated because I can't type everything here that I want to -- it would take too long.

I forgot about your health.  It's hard to imagine doing all of this and not being 100%.  I have a suggestion about the memory thing. I wanted to tape record my IEP meetings, but I noticed that everyone in the meeting got bent out of shape about it, so I decided to tape EVERY meeting.  That way, they won't see a tape recorder as an indication that the meeting is going to be a rough one. I simply told them that my memory at my age (57 next week) is not what it used to be and that I need to tape the meetings now. I tape every single one.  You just have to let them know ahead of time in case they want to bring their own tape recorder.

Hope things went well.

My son was non verbal & thought by the county services to be unable to be mainstreamed.  I removed him from county school program & put him in a small private school (without the needed resources).  I gave him private speech & OT 2 x weekly from age 3 through his kinder year.  From 1st gr on we stopped speech & ot but have remained in contact with the OT.  He is a seemingly normal child (with a few issues that seem to revisiton occasion) with many friends, and maintains mostly a's on his report cards.  I have chosen to not use his IEP because he does well without it.  He is currently in the 6th grade (at the same school).  We do an after school 2x weekly program that has some oT, brain gym, and learning things geared toward his weaknesses.  I searched out most reasources (and fought for them -with insurance & county). They eventually allowed my input because I was the one who knew his needs best.  I did as many seminars on autism spectrum disorders as possible and tried many things that the insurance company thought experimental but most books claimed results.  My best effort at networking was  through a non profit group called DDR (developmental delay resources) which you can join for a year.  Their cutting edge resources and knowledge are unbelievable!  I could not have done it with out them!  www.devdelay.org

The other thing that helped to get the ball rolling for us was Dr. Layton.  I think many people overlook him because he is billed as dealing with allergies in developmentally delayed children.  My son presented no allergies but we went anyway and did the testing.  It was determined that his "hidden allergies"  were a big problem.  My son at (3 1/2 years)  went from non verbal to speaking full sentences in one month (we think due to the removal of milk & dairy).  The language pathologist & the OT were both shocked and had never seen anything like it.  Both now use Dr. layton as a resource and they knew nothing of him before.  Also after treatment with Dr. Richard Layton (sublingual drops daily for 4 years) my son is able to eat some dairy products (ice cream included) without problems, however, he still does not drink milk (he syas he just doesn't feel great after having it).  Dr. Laytons office is in Towson, Maryland (not near my house at all but a 2 hour drive- I met people that he was treating from as far away as California in his office).  I believe his web site is

allergyconnection .com

but I think you could probably get his info by doing a search. Often times the best doctors have a waitlist of several months but it is usually due to the fact that their services are unique not that they are overbooked like county services. Dr. layton is well worth the wait!  Please do not give up on this little one even though as you already know, it is an uphill battle. I wish you the best.

Jodi

Hello and welcome

I saw you are locted in Oregon, so am I.  I had my son evaluated at CDRC but he did not get his diagnosis there and I hope you have better luck there than I did.  Which school district are you located in?  I am in Tigard/Tualatin.  My son transferred into special ed preschool in May of 06 and I have had two IFSP meetings since and many more to come.  Have you checked out the Oregon Parent Training site.

They have an 800 number you can call and get advise or you can do what I did.  They provide IEP partners.  I met with another mom of a child with Autism before the meeting and we got our plan together, then she attended the meeting with me and just backed me up.  It worked out great and gave me a lot of confidence.

Here is their website

http://www.open.org/~orpti/

you just call the number and request an iep partner.  If this meeting doesnt go the way you like you can always request another one at any time.

I am new to the system but I always show up to the meetings prepared as I can be.  I scare them most of the time with all the paperwork I bring. 

You can pm me anytime

I am popping in to say welcome and to agree with Tzoya about taking a deep breath and one step at a time...God bless you having MS and raising 5 boys!  You can only do the best that you can do.  Chip away a little at a time, and take a break from your head (!) when you need to...Maybe watch a 30 minute sitcom or have a cup of tea, look at a magazine or listen to your favorite album.  As time goes by you will learn more and more.  Experience helps.  We all waste ALOT of time when we stay on the "guilt trip" too long!  Stay on these boards, and you will get where you need to go...

Blesings,