Introduction and Would Love a Sounding Board

Discussion in 'Special Ed 101' started by TheBoyHasArrived, Jun 8, 2012.

  1. TheBoyHasArrived

    TheBoyHasArrived New Member

    Hi everyone,

    In looking for resources for our upcoming IEP meeting, I stumbled across this board. I would love a sounding board to bounce things off of since my in real life friends just don't get this stuff or are on "the other side of the table."

    My husband and I adopted our (just turned) 6 yr old son 5 months ago. He is/was diagnosed with Autism Spectrum Disorders (ASD), severe speech/language impairment, mild intellectual disability. We think he is actually Fetal Alcohol Syndrome (FAS), s/l impaired, extreme attention issues, moderate sensory issues, possible ID but not sure, and extremely neglected/institutionalized. My husband and I both work in the school system (I'm an Speech Language Pathologist (SLP)), so The Boy attended preschool from 2/12 to 5/12 and is now off for 2.5 months with us.

    In the 4 months that The Boy attended school, he learned to play the system quickly. His special needs preschool class had no typical children (nor did his orphanage), and he learned absolutely no positive behaviors or skills. At his progress note in April, he had made 0 progress. Based on that, I started working with him to "re-do" preschool at home in the evenings. Still, he would refuse to demonstrate the skills at school. Between April and June, he made moderate progress toward all IEP goals/objectives (although he has mastered all of them at home).

    The school is suggested a contained classroom for The Boy for kindergarten. It's a classroom for children with Autism Spectrum Disorders (ASD) that is supposed to promote communication. However, for The Boy, he is not only learning the language...he is learning that language is functional. And the classroom is basically silent unless the child is having 1-1 teaching. During the time that is not the 1-1 teaching, the students are supposed to be working independently (read: busy work). Due to his attention and control issues, The Boy is NOT capable of working independently regardless of whether he is in a contained class or a general education classroom. He will need a 1-1 no matter what setting he is in to make progress/not regress. But in the contained classroom, I don't see him making progress in social skills or language.

    I verbally requested a FBA three weeks after he started preschool and was asked to give them time to work with him. They did not follow any of our suggestions and continued to treat him as a student with Autism Spectrum Disorders (ASD) rather than a student who was acting out intentionally (which, it was obvious to us that he was), and his behavior escalated at school (pulling staff hair, throwing materials, pretending that he couldn't complete tasks, biting, extended tantrums, etc). The school has repeatedly stated that his behaviors are due to being overwhelmed, frustrated, that he can not control himself, etc...and this is very much not true, but they refuse to be educated. I requested an FBA in writing in April and was told that it was too late in the school year. Now, they are saying the FBA will be completed at the beginning of the school year.

    The district has indicated that they plan to place him in the contained classroom with access to typical peers "as much as he can tolerate" with no accountability regarding the amount of time he will spend in the general education (suggestion throw out by the psychiatric was <hr/day). I do not think they can prove this is the least restrictive environment until they have attempted to serve him with his peers and provided supports (particularly the FBA and BIP) in order to help him succeed. Also, The Boy is going to go completely berserk trying to manipulate the staff in the quiet, unstimulating classroom and burn any chances that he has of moving out of the unit if we place him there first. In the district that I work for, we are extremely parent-friendly and it rarely gets to the point where parents are not in agreement with the plan, so I'm not really sure what happens next.

    I would like The Boy to be in the regular education classroom for all non-academic times. In reality, I know we will end up re-teaching all academic concepts anyways and would like to maximize his access to the things that I can't provide him--namely, typical peers and learning to move as a group. This kid is going to be high functioning enough that he may or may not receive adult services. He probably isn't going to college, but I would like him to learn to function in society rather than an environment that resembles another institution. He will absolutely need a 1-1 aide to access this environment. I do not anticipate the school district altering their recommendation.

    What should I take with me to the meeting? I am planning to read through the IDEA booklet more thoroughly but I don't know what happens if we are not in agreement. Can they place him in the contained classroom even if we do not agree with the IEP? (without taking us to due process). If we refuse the contained classroom, does that mean they are free to disregard the rest of his services? I have honestly never had a parent disagree with my recommendations during a meeting other than to request an additional objective or something, which I am happy to adjust. So, I don't know what happens next. Suggestions?
     
  2. buddy

    buddy New Member

    Hi there, other than your having a husband we have a lot in common! I am an Speech Language Pathologist (SLP) too (now only mom to Q,my difficult child (our term here for our challenging kids...gift from god, smile). I also worked in the schools and would never have treated anyone like we have been treated. I FOUGHT FOR kids with behavior problems!

    Also, my son is adopted (from foster care) ...came home at 2.9. He is 15 now so I have a little more road traveled I guess...sigh.

    First, that they disregarded your FBA request....really disturbing. Next time you request an assessment or any communication for IEP issues, put it in writing and send it certified mail so they have to reply in writing why they are denying things, and you are starting a record to use against them. Look at writeslaw.com and see that for any child on an IEP the mandate is to analyze behaviors and develop a positive plan (as you know). IF you can, get an advocate. I think it is sometimes worse when they know you are teachers. I finally called the state disability law center and got a law advocate because things got really ugly here.

    It DOES sound like more than Autism Spectrum Disorders (ASD)....as you said...FASD sounds really possible esp because he is falling apart everywhere (when it is more pure Reactive Attachment Disorder (RAD), the kids can hide their behaviors in some settings, of course as in the case of my son the Autism Spectrum Disorders (ASD) and cognitive challenges change that too, sigh).

    Can you get him a private neuropsychology evaluation? If you disagree with their evaluation...or at any time really, you can request an independent evaluation too. But I'd do the neuropsychologist no matter what. They can help you sort through differential diagnosis. Also if you can find an adoption clinic, have an FASD expert evaluate him medically. The education for him will clearly need a different road if this is true.

    My son is worse in special needs classes too. As he got older though, the dilemma was that the gap widened and because he could not follow the discussions he blurted out off topic more and more and mainstream teachers got frustrated. He is actually in a class designed for FASD (but isn't, he has a brain injury from another source, but similar behaviors...doesn't have the memory challenges though--also generalizes well, no physical features and very low risk of his having been exposed but one never knows.....)

    The class is going very well, their goal is to preserve his dignity and we are at transition age so now working on more functional goals.

    Anyway, just sharing because I have sooo been there. My son has 1:1 all day everywhere. MUST have it for learning to take place now.

    Warning about an FBA, many just do the standard "what is the motivation of this behavior" method and categorize it to the traditional groups like escape, attention, etc.....

    Lack of prerequisite skills, triggers, internal dysregulation, sensory challenges, may be mentioned but can be so ignored. Sounds like your folks are almost doing the opposite and do not understand the kinds of behavior challenges that may come from institutionalized/survival/broken attachment behavior.

    Any options for open enrollment in another district?

    I'd put in writing that you disagree and put your warrior mom suit on and dive in. I am here to tell you that it feels awful to go from that team process where you feel good about the whole IEP procedure to being on the other side and risk people not liking you, not thinking of you as a professional and equal on the team, etc. I found myself dumbing down what I said to try to keep them from being defensive. I dont do that anymore!

    Hope you can find an advocate.

    Have you read the book Lost in School by Ross Greene??? You might get ideas there.

    Do you feel your difficult child learns from consequences? Does he stop behaviors once you give a punishment? What do you want for him in the mainstream....make your case. Write your dream IEP. Then you have a negotiating point to go from.

    May I ask if you know of his history? (you said orphanage so I am assuming it is a non USA adoption).

    Anyway, this all may not be of any help, but....just wanted to say hi and welcome and let you and husband know you are in good company. My WHOLE view of the system I loved to work in has changed. It is sickening what my insides feel when I review my past year.

    Stay strong....dont sign off till your GUT says it is right.
     
  3. TheBoyHasArrived

    TheBoyHasArrived New Member

    Hi buddy,

    Good to hear from someone in a very similar situation. I guess I just never imagined having so much trouble with a school district after working in the one I'm in...we don't have open enrollment in this area, unfortunately, but we're considering moving into the better district. I want to have the setting recommendation as close to what we want as possible before moving so that he is able to start the year wherever he will (hopefully) stay.

    I'm hoping that they will be willing to work with us if they see that we're prepared to fight back, but we will see at the next meeting. I definitely learned my lesson to put everything in writing. We did have a private neuropsychologist evaluation, but they were mostly looking at whether or not the Autism Spectrum Disorders (ASD) diagnosis was correct. Results: Meets the diagnostic criteria but they weren't willing to say if it was institutional or not; clinically significant in almost every subtest of the general evaluation including ADHD (we are 99% sure he would test ADHD but will not use stimulant medications right now due to incredibly small size so are holding off on the diagnosis); mild intellectual disability, but the test was administered in English 3 weeks after we arrived home using materials he had never seen before and the psychiatric admitted it was not accurate and he will probably be borderline. So, our private evaluation did not really show an "outside the box" thinking either on paper--although all of the professionals verbally indicated the results were probably skewed.

    We have an appointment with neurology to order an MRI and will meet with the genetics specialist if neurology isn't able to refer us to the FASD clinic. The adoption clinic didn't have a specialist and wouldn't say one way or the other. He has some facial features, but not all. He does generalize well and learns at an incredible rate when we can get him to focus--he's the type of kid that has a great visual memory (learns signs after 1 model, can work anything mechanical if he observes you using it, etc.) but then there are gaps in his ability to problem solve really basic things at other times. So, I won't be surprised at all if he is diagnosed with a FASD but I won't be surprised if his issues aren't 90% neglect either.

    We do have limited info on his history, but nothing incredibly relevant. He was in the orphanage since birth, was assumed to be cognitively impaired at birth but had no birth trauma (which we guess that they assumed because bio mom had cognitive impairment or because he is a minority that is typically assumed to be "deficient"), met all milestones late, was the highest functioning in his group so had no positive models, has a history of explosive tantrums, etc. Having seen his interactions with the staff, we feel like the negative behaviors were heavily reinforced. The bigger the tantrum, the more quickly he was given attention and whatever else he wanted.

    We also know that he was assumed to be basically nonverbal (lots of noises but said to have 10-15 words in his native language) but 5 months later he is starting to put 2-3 words together (still TONS of vocal stims like car noises, etc). Now that he is "talking" more--even though it's not incredibly functional language, mostly commenting on things ("Jake big whale?" to ask for episode of Jake and the Neverland Pirates)--I am seeing significant signs of apraxia. But it's still so early, I don't know...he doesn't have oral motor awareness at all, but that could be because he was only given purees....he can't sequence syllables at all but he can produce multi-syllabic words independently, etc. His speech is probably 10% intelligible to unfamiliar listeners, but he is "code switching" and will try to use words that we know at home and then different words at school.

    Anyway, it was very helpful to get some feedback--if only to hear that there is someone else from "the other side of the table" that has been there done that. I just feel so horrible being "that parent," but I know it's going to have to happen if The Boy is to be in an appropriate placement. Like your son, I don't doubt that the gap will get wider and it may be impossible to maintain him in the general curriculum when the academics are more challenging. That is why it is SO, SO important to me that he is able to have the exposure to peers NOW in K and possibly 1st grade.

    I am going to see if the book that you suggested is on the Kindle right now--Thank you again!
     
  4. buddy

    buddy New Member

    Wow, he sounds so much like my Q in many ways....borderline IQ, generalizes well, apraxic---multi-syllable words and sometimes it is kind of cute because he really has a decent vocabulary and asks if he is using words the right way. To add all of his issues with being an ELL student??? HOLY COW!

    Even if he has to have lots of special services for academics, at least if he can be with peers for lunch, recess, gym, art, and often math or science can be good when they are younger. The hard thing about Q's current placement which is very good in most ways is the huge missing piece of non reactive peers and good role models. I had to prioritize and so am arranging for lots of out of school things (therapeutic horse back riding has been a HUGE God-send). Are you doing private Occupational Therapist (OT), SL, etc...too? It can get to be a lot I know.

    Just curious...in addition to what you found with the sensory/motor issues (oral) how were his teeth? Did they have adequate dental care?

    Will be very interesting to see how this all comes together. I can only imagine what goes on in his head......

    HUGS...Dee
     
  5. TheBoyHasArrived

    TheBoyHasArrived New Member

    As horrible as it is, the ELL has been the least of our issues because he was use to not having anyone understand him (said to have 10-15 words when we picked him up). Now that his receptive language is probably on par with where his L1 was, it's even less of an issue. So, he has only recently started to get frustrated with people not understanding him since we understand most of his word approximations at home.

    That's what we're trying to explain to the district--it's fine if he needs to be pulled for the academic times (even though I think modifications could keep him in the classroom for this year). He just HAS to have access to peers for at least one year--there's no way we'll be able to integrate him for the first time next year when all of the kids have already learned to sit at their desks 90% of the day, etc.

    We are looking into therapeutic horseback riding--he was on a horse for the first time last week, and it was amazing. He was able to keep his voice quiet/body still for basically the first time since we've had him. The waiting list here is insane. I have been doing his speech/Occupational Therapist (OT) myself in addition to the "preschool" we've been having daily because I didn't want to introduce one more new person, but I think we are at the point where I'm going to break down and let someone else handle it as long as I'm in the room

    About the teeth--oddly enough, his teeth were in great shape as far as cavities go. But, he has feeding issues probably due to being given a bottle for a very long time and then fed purees. He also has a pretty significant over bite (and his teeth are all falling out at the same time...not sure if it's just the age or if it's the change in diet)...not looking forward to orthodontia for this one :)
     
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