IEP on Thursday

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Hi,

This is my first post here (obviously) and I'm not sure I'm in the right place but this forum does keep turning up on my searches ...

My oldest son is turning 6 in January and is in Kindergarten. We're having our second "intervention" meeting on Thursday and I just had a meeting with his teacher on Friday at her request. Before Friday my thoughts were my son has, at the very least, some real issues with anxiety and maybe ADHD, then his teacher says he "may be on the spectrum". I'd completely expected her to say ADHDt. But that's a little beside the point since I'm not actually looking for an internet diagnosis . We're having another meeting with his school on Thursday, though, and his main issues are things that I hope I can get some advice with here.

He's in a Kindergarten class of 27 kids (with a teacher and full time TA) and he's having a lot of problems with auditory stimulus and with transitions. He's always been sensitive to noise but it's playing a big factor in this environment. His teacher told me that they have to have him away from the kids when they come into the classroom, hang up their bags, pull out their folders, etc and then he goes and does those things after everyone is settled down. He also frequently elects to sit at a table separate from all of the other kids (they all sit at tables of 5-6 kids) because the group tables are too overwhelming. His class had a musical performance on Thursday that I attended and twice in the 20 minute presentation he had to turn around and cover his ears because it was too overwhelming.

He also has problems with transitions and change, which obviously isn't a winner when the day is divided into 15-20 minute increments. When he starts an activity he wants to finish it his way. A couple of months ago at home he was drawing our house and absolutely would not leave the table until it was done correctly. Typically in a transition he throws a verbal fit and refuses to move on without a lot of help one-on-one. If there's a sub or any new person in class, they have to be introduced to him. When they changed the number of his bus home, he absolutely refused to get on.

According to his teacher, he also "makes noises" and his hands are out of control. He doesn't mean to get into other people's space but his hands move a lot. At home, I see him making noises and hand movements to whatever internal story he has going on. Today it was something about chipmunks on a submarine that goes up and becomes a raft... ....yeah ... I guess I see that as less abnormal because I always had my own internal stories going on when I was a kid ... okay, still.... but for the record I never did the hand stuff past 4th grade. She also told me academically he's on par or ahead of the other students, but his academic engagement has fallen off a cliff over the last couple of weeks so at some point he's going to start falling behind. She says they're not talking retention, but I'm actually less worried about that than about him coming to hate school. His father and uncle (my brother) both finished HS and absolutely hated it and never completed more than a couple of credits at a community college in spite of being above average intelligence. It's affected them both so much I'm scared of seeing my son going down that road.

Given everything that is going on, on Monday I'm going to schedule an appointment with a private Behaviorist and I've been picking the brains of a friend who's been through the whole IEP process with her son who has epilepsy. But I want to be as prepared as possible for the meeting on Thursday. In an environment that is not so chaotic and noisy and with more one-on-one interaction with a teacher, I know my son can do better. But I don't know that this can happen at this school even with all of the accommodations his teacher has already made for him. She's been a teacher for 19 years and everyone raves about her and I think she's fabulous as well. She's made a lot of accommodations already for him without an IEP, but there's a limit to what she can do with a class of 27 kindergartners.

I'm not sure what else I can ask for to turn things around for him this year. It just breaks my heart remembering how excited he was for Kindergarten to start and how he begs now to not have to go back to school. As a last resort, I could pull him out and send him back to the Montessori school he was at last year. If he did that, my understanding is he would have to test into 1st grade next year though, and that still leaves the issue of coping in a regular school environment. On top of that I have little idea how the public school system works. I never attended public school myself and don't have the experience of an older NT child in the system.

I'm sorry for the very long post. I just have no idea how to help my son. I know he's not NT ... I just don't know what's really going on with him and I don't know how to help him succeed in the public school system. We're just now introducing tracking his behavior by each segment of the day. My understanding after the last meeting was that they were going to start that immediately, but it still hasn't started. On Friday his teacher showed me the chart they would use, so hopefully that will be starting soon. Apparently the school psychologist did an observation one day but that day was a quieter day for the class and an "on" day for him so I don't think that's really helping him at all.

Oh yes, and his dad moved out in July. Hence, maybe it's just anxiety issues. He brings up broken families pretty much daily. He's brought up a couple of times out of the blue my mom dying when I was young (we had maybe a 10 minute discussion about that months and months ago). He talks very negatively/violently towards himself ("I'm going to die right now", "Just hit me in the face", etc etc). I'm dealing as best I can with his anxiety, but I don't think that's all of it given how, in the past, I've come up with elaborate coping mechanisms for transitions since he was 2. And then there's the food. The extreme pickiness about the appearance/texture of food has gone on since he started solid food. Again, beside the point. So what can I ask for at this meeting that can actually help him? I don't even really know what is in the realm of the possible in our school system. I just know my son begs me not to send him back to school.

Hi, and welcome. It sounds like you are in the right place, to me.

By "chart" I am assuming that you mean a visual schedule. A visual schedule can be very helpful for transitions, and if it is not what you mean, it is definitely something you can ask for.

I don't know if his noise issues will be enough for you to qualify for occupational therapy, but it is something to consider asking for. There are many uses for it, but it sounds like even if you not qualify for it with the noise issues, you should be able to ask for something like noise cancelling headphones or something like that.

I do not know how knowledgeable the TA is but, TAs are often used to help the teacher with children in the class who need additional help. It is also possible to get a 1 on one paraprofessional, although the district may not want to spring for that.

Other possible things to ask for is a visual clock timer to gently remind him of transitions (no noise) He should also have a quiet place he can go or signal to be escorted to, when he is having sensory issues. It should be a place your child finds to be comforting, not just some place they think ought to be.

There are other things, of course, but it really depends on what other specific needs he has. Generally kids on the spectrum tend to have pragmatic/social speech issues even if they do not require obvious speech. So speech therapy tends to be very standard.

You want to make sure he gets tested for all the relevant things and that they use the ADOS if they suspect autism. I would, at minimum, ask for ADOS, speech and occupational testing.

The other thing to be wary of, is that the questionaires will include questions about home life, and so they may attempt to explain things with your separation that have nothing to do with it. I am not saying they will, but I know that when we have had issues that the school district just did not want to deal with, they tried to "find" things to pin it on that had nothing to do with a disability. So social anxiety might be mislabeled. I am not saying that he does not have anxiety about anything else, but you want to make sure that anxiety having to do with autism (or whatever label, if any applies) is appropriately dealt with.

To me, one of the hardest parts was getting my son to tell me, what was going on and what was upsetting him. As much as NT little boys do not like to talk about these things, having a kid with a communication issue makes it that much harder. If you can, I always advise people to try to get some in-school observation, if at all possible. Even if the teacher is wonderful, you might be able to see things they do not just because you know your kid better. It won't be the same as being invisible as everyone will act differently with you there, but I always found my time observing to be very illuminating.

The hating school thing is really important to address immediately. Hopefully, if you have a great teacher, and good rapport, maybe you can try some things right away without an IEP or 504, to try to get him on better footing. I have an 8 year old that I ended up homeschooling starting this year, and I can tell you (not to panic you, honest) that it is very important to reverse that, especially with a child prone to anxiety as most spectrum (and other kids of course) are. Towards the end, my son had anxiety tummy aches (or just plain school aversion) and it makes it really tough.

I am sleepy, so I may think of more things later, or others will plug in things I missed.

Thanks for your response. You're going to have to slow down on your jargon just a bit there, though. I don't know what an ADOS at all or what occupational testing really means.

Talking with my friend (son with epilepsy, been through the IEP process, etc), I was thinking about pushing for academic testing in Feb time frame, but I think maybe you're talking about something else. Keep in mind I have no frame of reference. This is my first venture into the public school system. It's intimidating.

The chart I mentioned is less for his benefit than mine, showing his behavior (green/yellow/red) during each of the class stations/subjects during the day. I've not introduced a schedule chart for mornings/evenings, but I could do that if it would help. Our home routine is pretty set. Sometimes we'll go out to fast food (w/ a playground) in the evening but we always have the same bedtime schedule and routine. I guess I've never thought about having a visual routine for school given they have a set routine there. They do use a visual timer but I'm not sure when they use it and I don't think it has an auditory chime. We use the same visual timer at home but it has the auditory chime. I use it with him whenever he has an activity that needs a transition at the end and that doesn't have it's own natural break points ... if that makes sense. Like I can let him watch 2 episodes of Might Machines (but I have to specify up front how many) but I need the visual timer if I'm going to let him play for 20 minutes with Legos and still expect him to get his shoes and jacket after without a meltdown. Even then it can be touch and go depending on his tired/hungry he is and what's happening after the shoes/jacket.

On speech issues, I don't think anyone thinks he has a problem there. He started talking early and he's very articulate. It wasn't until I started reading about HFA that I even thought that his preference for talking to adults vs. kids might be atypical. Latest theory ... random adults smile and nod during the exhaustive descriptions of how Voltron differs from Transformers. Not that I let him watch Voltron and Transfomers. At least he's never seen the movies! Regardless, he's very articulate and he looks you in the eye when he's telling you all about Voltron and Transformers (hence, "couldn't possibly be autism") so mostly they're focused on his negative talk and disruptive behavior.

get a disability advocate, they will be a big help because they know the ins and out of the laws and the school will be more likely to listen to them

Sorry,

http://en.wikipedia.org/wiki/Autism_Dia ... n_Schedule

The ADOS is used to gauge whether is child is likely or not to be on the autistic spectrum, and what the specific issues are. As far as I know, it is the gold standard, but not all districts use it as part of the evaluation.

Occupational therapy involves different things. Some of them may be relevant; some not; some may become relevant later. It includes a lot of different things, ranging from assistance in helping a child deal with sensory issues, motor skill issues, and later, if needed, other practical skills needed for daily living. In terms of young autistic children, and the schools. it tends to include sensory issues like noise, but also other types of sensory issues you may or may not be aware of your child having. It also includes fine motor skill issues like handwriting, shoelaces etc. We did not qualify for this until kinder, but we had unofficial assistance with some of the sensory things until the handwriting gap was significant enough to qualify.

My son is the "little professor type." He was so even when he was economizing his speech. His vocab is/was splendid (He would imitate mine and duplicate speech he heard others use.) but he needed it for issues with switching pronouns and difficulties with social speech. They also cover some other communication type issues as well as things like turn taking games, and social norms and expectations. Later on it can include figurative speech like idioms and metaphors. Even if your child's speech looks "normal" he may still qualify on the basis of these other things.

Some autistic kids make eye-contact, some are snuggly (mine is.) There are a lot of stereotypes out there that do not hold for everyone on the spectrum. That is why they call it a spectrum, and why a good eval is so important. We were initially flagged at 2 for behavioral issues (excessive crying) and poor eye contact, (The ped said it could not be autism b/c he was snuggly....)and we passed the county's phone screen b/c he is/was smart (He is hyperlexic and could read at 2)and they were mainly looking for cognitive delays. To the extent that they were looking for autism, the snuggly thing threw them, too.

I am not telling you this to scare you, just so that you are aware.

Okay, if I'm interpreting things correctly, the ADOS is what the behaviorist would do. I know I can go through the school system however, based on my friend's experience, going the private route might get me further faster. And it will be nice to maybe get some answers about what's going on with him and some strategies for helping him.

My boy is also a snuggle bug. If I can get him to cuddle as he's getting wound up, it can avert a meltdown. There are several things like this and his articulate speech that made me completely discount ASD. I still don't know even after reading a lot more and seeing how well other things fit. Given how common ASD is, it's amazing how unhelpful media depictions are. I guess either way I feel like I have more understanding now about why some things are so hard for him.

chris5000: I'll look at disability advocates. I'm not sure that we need to go that far right now. It's not that the school is trying to avoid doing anything ... it's that I don't know what to ask for. Does that make sense?

Have you requested an evaluation for an IEP in writing? I'm guessing that this Thursday meeting is the first meeting in the process, where you make a plan for what testing the school will do over the next 60-90 days (timeframe depends on your state.) If you haven't requested an evaluation yet, hopefully, the school is planning to ask for your permission to do an evaluation, and will plan the testing during this meeting.

Get a copy of the book From Emotions to Advocacy by Peter Wright. It has a very thorough explanation of the IEP process, and how to start documenting everything from now on.

My DS8, who is in 2nd grade, just had an extremely thorough eval in our new district. His "Assessment Plan" had the following items checked. After the dash is the testing they actually did
Academic Achievement -- a Resource Teacher gave him standard tests measuring reading, writing, math, and listening comprehension. At my urging, she also gave a test of phonemic awareness (part of a dyslexia evaluation).
Health -- school nurse did basic vision and hearing screening, parent health questionnaire
Intellectual Development -- IQ test
Language/Speech Communication Development -- speech therapist gave standard tests of vocabulary, articulation, listening comprehension, direction following, and at my urging the Test of Pragmatic Language (TOPL-2). Parent and teacher also filled out a pragmatic speech questionnaire, and she observed his ability to hold a conversation with her.
Motor Development -- occupational therapist his pencil grip, handwriting, cutting with scissors, hopping on one foot, etc. and observed him in class
Social/Emotional -- observation in class by school psychologist; questionnaires filled out by teacher and parents
Adaptive/Behavior -- observation in class by school psychologist; questionnaires filled out by teacher and parents

Some things you might want to be sure to ask for, because they might not do them if you don't ask:
Test of Pragmatic Language TOPL-2
Test of phonemic awareness (25% of kids with ADHD also have dyslexia)
Sensory Profile (a questionnaire)
Functional Behavioral Analysis -- observations of classroom issues by someone with autism expertise and experience in behavioral analysis

In our case, the school psychologist is actually a neuropsychologist. It's unusual for a district to have one on staff, so we were very lucky. She did extensive testing on working memory, attention span, processing speed, auditory processing, visual/spatial abilities, more in-depth sensory and motor integration testing, and detailed observation during the testing and in the classroom related to executive function. She also gave rating scales to the teacher and parent regarding executive function and behavior. This type of in-depth testing can be done privately for around $2,000.

If the school has staff trained to perform the ADOS (autism diagnostic observation schedule), and they're willing to do it, say yes. I think this is unusual, though, most school psychologists do not have this level of training. (In our last district, the school psychologist basically handed out questionnaires to the teacher and observed DS in class for 2 hours total, then declared all his behavior to be motivated by "obtaining a desired item.")

In parallel with the school testing, you might consider having the ADOS done through your medical insurance. You'll need to find a developmental psychologist, developmental pediatrician, or neuropsychologist who is qualified to give it. If he receives an ASD (autism spectrum disorder) diagnosis from a medical professional, your insurance may then cover private speech therapy, occupational therapy, and ABA (applied behavior analysis) therapy. You could ask this professional to also evaluate him for ADHD -- they'll have you and the teacher fill out rating scales, and also take a detailed history and observe him during an office visit.

Your insurance may also cover assessments by a private speech therapist and occupational therapist (look for one trained in Sensory Integration). You can then take the results of these assessments (which may be more thorough than the school assessments) to the school, to be considered in writing up the goals and supports in the IEP plan.

It's a lot to take in -- keep coming back here and asking lots of questions!

I find I'm just full of advice today.

To understand better how ASD might be a fit for your son, I recommend you read Parenting Your Asperger Child by Alan Sohn. He has some fantastic descriptions of very verbal, articulate, quirky kids with Aspergers, and you might recognize some of your child's behavior in it. (Side note -- the diagnostic label "Aspergers" has been merged with the autism category, and all new diagnoses will get a label like "mild ASD".)

An excellent 3 hour lecture on ADHD is available on YouTube -- Russell Barkley Essential Ideas for Parents.

As far as the school goes, I would suggest keeping your DS in his current class until the IEP eval is complete and you see what they recommend for goals and support. In parallel, you can begin looking into options for Plan B. If he did well in Montessori preschool, you might see if there is a Montessori elementary in your price range. Also check out the options for charter schools and other places that have small classes. I suspect full-time homeschooling is not likely to be an option due to the separation, but some states have hybrid schools where you go to school 4 days a week and are at home 1 day. It may be that your public school can offer good support or a suitable class, but it's good to explore the options in case you need them later.

This is the sort of "pragmatic language" issues your son might need speech therapy for. (Your school's therapist may or may not have the expertise needed...)

From http://jillkuzma.wordpress.com/assessment-of-pragmatics-and-social-language/:

Thanks! That's a lot of really good information. I think I understand the language pragmatics thing now. I'd actually never really thought about it but I translate figures of speech, teasing, and so forth for my son. Though with certain people I think he's picking up when they're joking at least some of the time. I'm working my way through some of the other info like the ADHD video which is just really, really depressing =\ When I go through material like that I just have to remind myself that my little boy is such a smart, funny, and sweet kid. Okay, he has challenges but nothing is fated if we can give him the proper support.

Unfortunately homeschooling is out of the question. I earned the majority income even before our separation and having his dad homeschool him would be a disaster. So far as he's concerned, it's a behavior problem. He ends up getting frustrated easily when our son refuses to obey or to transition and then just forces the issue ... with predictable results.

I went ahead and got "From Emotions to Advocacy" and I'm reading through the IEP threads on here and getting some good ideas.

So the IEP meeting was .. unremarkable. We've had a whole 2 days of detailed monitoring and so far he's responded well to that. Yesterday he had one tantrum when he wouldn't transition from math but today was 8 greens. His teacher did a pretty detailed write-up of his strengths and weaknesses in each of the subject areas so we really appreciated that. A big thing seems to be he can't focus on group instruction ... has to have one-on-one adult instruction to "get" an activity. The school psychologist noted his behaviors aren't really typical but I don't think the school wants to spring for assessments/diagnosis if the increased feedback and rewards are working.

He's apparently now spending most of the day at a separate table from the other kids because of the noise sensitivity. And I'm kicking myself for not bringing up if they can accommodate lunch away from the cafeteria so he'll actually eat better during lunch time.

I'm pursuing setting up an appointment privately with a psychologist as much to deal with his anxiety issues as everything else.

Airess,

A diagnosis is not supposed to be a last resort when nothing else works. It is supposed to inform the process of figuring out what works. I also think they are trying to save money on the testing itself as well as whatever services you might be entitled to, post testing.

It is also not all supposed to be about behavioral issues. That may be what they care about, primarily, but they are responsible for more than that.

I definitely see us moving towards an IEP. Right now his teacher has put in a place a number of accommodations and we're seeing what is working for him. She's been fabulous with him and very proactive in trying things to see what will work for him. He does seem a lot happier right now that he did a few weeks ago. Given he's not going to have this teacher forever, his needs may exceed what she can do in her classroom, and his needs will change, I think we need an IEP in place before we end the year. I'm going the route of seeing a psychologist independent of the school system based on my friend's experience. I think the biggest frustration to me so far has been the lack of sufficient communication from the school and the biggest problem in the short term was his hating school and feeling like a failure and powerless. I feel right now both are heading in the right direction.

The book "From emotion to advocacy" was helpful for me just in being able to treat this like another negotiation. I do it all the time with work but it feels so completely different when it's my kid and the school.

I just want to tell you about my experience with letting the school handle things without an iep since we had a great Kindergarten teacher.
My son started having the same issues as your son in kindergarten. Making noises, getting in peoples space, trouble with transitions and so on. His teacher figured out how to keep him from melting down pretty quick. According to the school at that point he had no more issues. He was doing great academically so they weren't worried anymore.

Flash forward to the first day of first grade this year: teacher wrote in his behavior folder "we had a very difficult day, but I know tomorrow will be better" yeah the next day was not better. Almost everyday since then has been bad: refusing to do work, crawling around on the floor under desks, and running around the room when he gets overstimulated.

I asked for an iep evaluation with specific autism screening. We just got the results back this week that my son does have ASD. I wish that I had pushed the issue more last year because they didn't have enough "proof" that he was having so much trouble. His great teacher downplayed all of his issues to the point that the school thought he was fine.

Just don't let the school tell you it's better to wait. My son hates school so much now because he was not supported properly. He is in constant "fight or flight" mode while at school.

I agree with ASDMommy...the ADOS is THE gold standard test for autism. Other tests are useful as screeners, to see if it is even worth doing an ADOS, but if there is still any suspicion of autism after you are done with them an ADOS is in order. As I believe others have mentioned, a propper ADOS is expensive, and the school should cover that expense. Not just any behaviorist will be qualified to do the ADOS...I believe it's limited to psychologists, and only psychologists certified in its use. It's kind of cool; they have you sit there for parts of it while they try to interact with your kid and play with toys.

It's good that you've already sought advice outside of the school. At this stage especially, you should be trying to get information from various sources, since schools can be biased in certain ways. The fact that your teacher suggested the diagnosis of autism is a good sign though, that she is at least looking out for your child's interests over the school's bottom line. Your updates also indicate that she has been very proactive. These are all great signs. But that doesn't necessarily mean that she will be able to advocate for you against her administrators, so it's important to be familiar with your own rights, and expectations regarding treatments going into meetings.

As others have mentioned the first IEP meetings usually lay the groundwork for the actual IEP document, which you then have to sign off on, and you can revisit (at least once per year).

Regarding separating him from others because of noise sensitivity, I think other accommodations may be preferable. It is important for your son to be able to be in situations with noise/chaos without panicking in the long-run, which means he should be getting used to those situations now - otherwise what will you do when you have to take him on an airplane, or through the mall? It is also important for him to have opportunities to develop socially, which are abundant in the lunch room. It may be better to work on skills like asking for short breaks from noisy/chaotic environments, or maybe some kind of noise cancellation solution (if necessary). Good luck!