Hi all,
I really need some help here. To recap, my son has been diagnosed with a non-verbal learning disorder, and auditory processing disorder, inattentive ADHD, and an anxiety disorder. He is an auditory learner (NLD) who has trouble with competing signals (get mixed up into nonsense words in his brain), figure/ground, auditory short term memory, loud noises. He has a slight visual processing disorder. He was 10 on Monday and is in the 4th grade. He currently takes 100 mg. Wellbutrin SR and 20 mg. Ritalin LA. Giving him the drugs was a very difficult decision, but they have helped him tremendously.
He had the full range of testing 14 months ago (prior to meds). FS IQ is 108, with PIQ of 106, VIQ of 110. Of course, this could be affected by his APD (bottom 1% on all SCAN-C subtests).
Last school year, the school provided Earobics (unsupervised), writing worksheets in the Resource Room (30 min. daily), and a few accommodations. I ended up pulling my son from the Resource Room. The first eight weeks he was in there, the teacher didn’t give him any feedback on his work. I went in for a conference and asked to review his file. Nothing was corrected. I came home and asked my son, and he said he just did it and left. So I e-mailed the teacher to ask her about it (politely) and she responded that since she only had him for 30 min. a day she “just didn’t have time.” The work came home magically corrected two days later – but had still never been reviewed with my son. Several months later, I asked the same teacher to put my son on a positive behavior plan because he was refusing to work for her. She said I would have to implement the rewards at home. I said they didn’t have to cost money, and I felt he should get immediate rewards (5 extra min. on computer at end of a good day, sit at her desk to work, etc.). Very shortly (within a week) of that conversation, my son was putting other students into headlocks to avoid doing his work. He never went back.
After fighting with the school system for a year for appropriate services, I tutored my son myself using Reading Reflex (or PG - thanks Shay), and he finally learned to decode words. This was accomplished with great angst – meltdowns every time I mentioned reading and then me pushing him to finish the lesson on a successful note. It worked, but it was hard for both of us. I still see he needs a lot of work with fluency and comprehension.
He also has a school identified disability in written expression, but my “mom” opinion is that if he is exposed more to the written word by learning to enjoy reading, some of those problems will self-correct. His spelling is atrocious – so bad he can’t get enough of the word into a Franklin speller to get the correct word out – a huge waste of time. In addition, he has social skills problems, and math calculation problems (although he understands the concepts). His favorite things to do are projects – especially where he gets to build something. He has invented several helps through the course of his life.
We had an IEP meeting for him last Friday. At the IEP meeting, the special education supervisor told me that NONE of his identified disorders affect him educationally, and he doesn’t need any of the help I asked for. She said this because my son did so well on the Virginia SOLs (advanced proficiency on three, proficient on one).
He only has the same three writing goals he had last year (surprise!). I don’t know what to do for him. The last couple of nights, we have spent a couple of hours reviewing his work for this week – stories, vocabulary for science and social studies – and reviewing the words I know he will have trouble with using the Reading Reflex techniques. We have done this with the associated meltdowns (again!) and angst – but I don’t know how else to get him to read.
How can I get REAL help from his school?
Suggestions? Thanks,
Lil
Re: Unbelievable IEP meeting! (long)
Thanks -
Yes, my son has had all the testing - his discrepancy between Broad Reading and IQ is 19 points, between Broad Writing and IQ is 26 points. After he was medicated, he took several reading tests and scored more than two years behind on the “blending sounds” subtests of two different tests, and more than one year behind on a couple of others. Since the evaluator (employed by the school system) wrote in her summary that he was “on grade level” for everything (ignoring the subtests), that is all they acknowledged in the IEP meeting, in spite of the fact that I pulled the eval and pointed the subtests out to them during the meeting.
I agree with you that the school system is not able to appropriately remediate my son. All I am asking them to do is support what I am doing at home - and give him a little extra help with fluency and comprehension. I’ve met the reading specialist at the school, and believe she CAN help him. There are only so many hours AFTER school that I can expect my son to spend working on this material. So far, we are averaging 1 1/2 to 2 hours a night to get through what the school doesn’t teach in a way he can learn it - with several meltdowns along the way.
I hear you-5th grader here
Your description of your nightly ‘ordeals’ could have been written by me last year when ds was in 4th grade. Fifth has gone a bit more smoothly but Im not sure that its due to a leap in his abilities or the difference in the class-we are in a new district which pays more than lip service to ‘multiple intelligences’ and he is learning better(though he still has many issues and the school keeps telling me how GREAT he is doing)But the meltdowns have almost vanished-phew
We started with a reading tutor-4th session today. I fought it because of the money and the feeling that the school should be handling this, not me, but middle school looming so close in the future put a different twist on things. I am glad I went this route-she is able to do so much with him in that one hour. As mom, I just couldnt get that much out of him.
Too soon to see if there are measurable point increases in his abilities, but Im wishing I bit the bullet and sought help outside the schools earlier now.
JMO
Re: I hear you-5th grader here
Thanks for the feedback. I’ve already hired three private tutors at different times, explained what I see my son needs, and asked them to work with him based on that info. They have (without exception) told me that wasn’t really what he needs - and have worked with him some on writing, or used a program different than the one I requested and provided for reading - and then given him work to bring home on top of his school work. He needs modeling for writing, and reading methodology that works for him. He doesn’t need tutoring in a way the tutor is comfortable with, nor does he need extra work in addition to his school work (where I again provide the modeling). Preferably the modeling would come from someone other than me because of the meltdowns - I have a sneaking suspicion he’s too proud to do that in front of others - but Mom is OK.
By the way . . .
The little dickens told me last night during one of his melt downs that it was far more important for him to be happy than it was for him to learn to read (anxiety being an NLD issue) … wonder where he heard that!?!
Re: Unbelievable IEP meeting! (long)
Lil,
it does sound so familiar…
I would also suggest outside tutor (if you can found one soon)- I also had a very hard time helping my son- I did it because I did not have any other choice- but shortly and at great emotinal cost.
If you think that the reading specialist can help - I would suggest to schedule another meeting and get this service written down on his IEP. When we asked for a lot of change the action we took was the following: we created “A Portrait of X (our son)” ( I am e-mailing you a copy of a full document- and copy most of it below- the graphs cannot be shown though). I had found this suggestion on the Web and used it very successfully, although I should say it was a lot of work to create one. Our portrait contained all the info about our son’s IQ results, his strengths and weaknesses and description of how he reads, what kind of mistakes does he make and where our concerns are coming from (very specifically you can address the subsets that your son had trouble with). I also included results of his individual testing with graphically marked his intellectual potential and his academic skills to clearly illustrate the discrepancy (we also had three years of data, so we could demonstrate that the gap is getting bigger). In your case- you should certainly add the other diagnosis and the fact that you put him on medication which helped tremendously and that you had tutored him - you need to illustrate that you are doing whatever you can, but there is more that needs to be done. Also add specific concerns/suggestions related to him needing a feedback system to provide him with instant rewards (fortunately my son’s teacher was good at that).
We also submitted in writing what we propose the action should be- we asked for an hour daily 1:1 and believe it we got it (not completely and it took another two months and some tricks to get it going, but our son was receiving such help). We also brought an advocate from LDA- she was extremely helpful mostly because we had a witness and she was good in asking a “clarifying question”, she also was good in brainstorming where can we find a compromise. I believe that once you involve somebody other than parents working with you - it really changes the school perspective.
Remember to add the sentence “We would like this “Portrait of X” (record of proposals) be included in the written record of this meeting as part of his parents input”.
A Portrait of X
PPT Meeting, September 12, 2001
X is a very sensitive and caring child. He enjoys riding a bike and skiing. X likes playing board games, with “Monopoly” being his favorite, and is fond of LEGO blocks. He enjoys very much driving virtual cars on his computer. He is very curious about the world around him and has great interest in nature and science.
X is a bright boy. He has a high average verbal I.Q. of 112 (79th percentile) and superior performance I.Q. of 129 (97th percentile), which combined give a superior full scale I.Q. of 122 (93th percentile). X’s performance score is more than one standard deviation higher than the verbal score, indicating that he processes better information presented in a non-verbal form.
His poor reading skills and high level of frustration that he experiences while reading and writing, impact his performance at school. Over the last two years, there has been a regression of X’s reading and writing skills as assessed by Woodcock-Johnson Revised Achievement Test (1999 and 2001 testing) and by Wide Range Achievement Test -revision 3 (WRAT-3; 2000 and 2001 testing) - illustrated on Page 3 of “A Portrait of X”. His reading score has declined by 15 points (one standard deviation) over the last school year alone, as measured by WRAT-3. His letter word identification skill is one standard deviations below average and two standard deviation below his potential (as assessed by WJ-R, 2001; see evaluation by Y)
His reading level is roughly two years behind his grade placement, with difficulties in decoding and fluency, but strength in comprehension. For example, he reads “no” for “on, “ever” for “even”, “was” for “saw”, “house” for “home” or “street” for “road”.
In writing, X makes many spelling errors (for example, “bruns” for “burns”, “ilo” for “oil”, “oringe” for “orange” or “tI” for “it”), letter reversals, (for example “glab” for “glad”), and often mixes capital and lower case letters (for example “It Live in caves”). He has not learned to write in cursive.
X can be easily distracted and has difficulty to sustain academic activity, which results often in him not completing tasks during classroom instruction; nevertheless, he can be re-focused on tasks without difficulty with teacher’s attention and effort, as reported by the evaluators who worked with X.
Strengths:
” Excellent expressive and receptive vocabulary (PPVT-III; WISC-III-vocabulary; CELF-3)
” Excellent knowledge of vocabulary and concepts in science (WJ-R; broad knowledge)
” Excellent math reasoning (WISC-III- arithmetic)
” Very good logical analysis
” Creating imaginative stories and expressing them verbally and/or in artistic form
” Responds well to encouragement
” Works well in small groups or in one to one setting
” Responds well to structure
” Very creative
” Competitive
” Charming
Weaknesses:
” Poor short term auditory memory for numbers (TAPS-R; WISC-III- digit span)
” Difficulty in following oral direction (TAPS-R)
” Auditory perception delayed by almost 2 years (TAPS-R)
” Weakness in visual perception, visual-kinesthetic memory and visual-auditory association skills (Slingerland Screening Test)
” Difficulty in visual planning and execution (VMI)
” Difficulty in breaking large tasks into manageable steps
” Lack of persistence; rushes through work without regard for performance
” Lack of self-confidence; does not like to take an academic risk
” Very low self-esteem
” Poor peer interactions, related mostly to X’s wish to be in control and his lack of skills to deal with criticism and frustration
” Easily irritable; angers easily; feels targeted by other children
” Problems with transitions
Hopes for future:
We hope X will keep his enthusiasm for exploring the world around him. We want him to learn to read and write at the grade level so he can learn through reading and present his knowledge and thoughts in written form. We want him to learn to respond appropriately to criticism and frustration, so he will be able to resolve challenging social situations and will improve peer interaction. We want X to become a valuable member of the society who will find an occupation at which he would excel in many of his talents.
We would like this “Portrait of X” be included in the written record of this meeting as part of his parents input.
Re: Unbelievable IEP meeting! (long)
Thanks Ewa,
I’ve written all those things and submitted them to the IEP team in the past, but not all in one document. Maybe I can do a cut and paste - or it might be easier to re-write it … today I’m just tired, and I can feel my own meltdown coming!
Re: Unbelievable IEP meeting! (long)
Is there any chance you can find an LDA advocate? In our case- she really helped- not only formally, but she kept me going- I had someone to re-evaluate that I am not crazy and that I am right- meltdown is understandable… I think I was in depression when my son was really drowning academically.
Do you have a director of special ed for your district involved? We started CC: to her as well and she/he needs to be at the PPT meetings when you ask for a lot, b/c she/he is the only person who makes decisions that require a drastic change in the way things are done in a particular school.
Re: Unbelievable IEP meeting! (long)
Hi again,
The sped supervisor (second only to the director) comes to all my son’s IEP meetings, and is the one who made the inane statement about these things not affecting him educationally. I do copy the sped director with all correspondence, and I HAVE phoned the sped director - who is suddenly not available, and then the sped supervisor picks up.
I usually copy everything to the superintendent - I’m on two of his committees, and we know each other a little bit. He did take action the end of last year - but is taking no action this year re: my issues with special ed. So I suppose that avenue is dead …
I am really at a loss as to how to get any REAL help for my son other than providing everything myself.
Re: Unbelievable IEP meeting! (long)
Lil,
How can you get real help from school? This does seem to be the eternal question we parents face.
I expect very little from the school. All of the remediation of his deficits is done outside of school. I firmly believe, in my son’s case, that sped, as it exists at school (2 teacher classroom with in class support) is the wrong placement for him. I don’t want them to intervene with him, because sadly, they are incapable of getting it right. I think some get lucky and get great sped teachers who truely understand what it takes. Many of those very special teachers are here on this board. Unfortunately the real world is very different.
I have put my son in a regular class. I have asked that the teacher work with me so that I am informed of areas of difficulty so that we may get help for them. I ask that he get every opportunity to demonstrate his areas of strength. (Like your son, this is in the area of verbal expression.)
The only thing I ask of the school is that they do not destroy his love for learning. Anything else would be gravy.
I think your child needs a very specific type of teacher. If he is anything like my son he does better with people who value him. I think many feel the need to control these kids which just sends them off in the other direction entirely. Mel Levine really understands this when he says, “Success is a vitamin.” Children who are able to see that they can succeed even if it is only in a few areas are more likely to have better self esteem and approach school with a positive attitude. Children who get the message that they are failures will often live down to those low expectations.
Re: Unbelievable IEP meeting! (long)
Lil,
I think there are two issues here. One is whether the school can provide adquate remedial services for your son. The second is whether that would be enough. I other words, does your son need support in the classroom? I ask the latter having read lots of posts over several years about NLD kids.
You can perhaps do remediation at home and privately but if your son still needs support in the classroom that won’t do it.
I would def. get an advocate to help. As I understand it, once you are legally classified, they have to provide for all needs. So my son has IEP goals for writing, even though his classified as SLD.
My fourth grade son has somewhat of the same profile (diagnosed with right brain disorder, ADD-inattentive, CAPD, SID, word retrieval, visual processing disorders) but he is classified as SLD on the basis of his reading disability. We have had limited support from the school and have done most everything privately. Mostly our private work has focused on underlying processing issues rather than academics. But my son does not have the anxiety issues and I think that is a very major difference.
Also, we now have the school working with us instead of against us. That happened mostly because of personnel changes with a very difficult and ineffective resource teacher leaving.
Beth
Re: Unbelievable IEP meeting! (long)
Beth from FL wrote:
> Also, we now have the school working with us instead of
> against us. That happened mostly because of personnel
> changes with a very difficult and ineffective resource
> teacher leaving.
unfortunately, such solution is not readily available to most of us…
There was once a post about chances of changing a special ed teacher and somebody said - it is easier to get out-of-district placement than change the way things are handled by a particular teacher.
Since Lil mentioned she believes that the reading specialist can help- it might be worth pursuing this avenue since nothing is better than receiving appropriate help at school during school hours.
Re: Unbelievable IEP meeting! (long)
Oh, I know. We fought with the teacher and the district for two years. We eventually pulled out son out and partially homeschooled. And then the resource teacher left. I still wonder if it was the spotlight we shone on her (I had district people telling me she was doing the programming wrong).
I was really raising two issues: one that I think that her child is entitled to help in all areas once he is classified and that an advocate could help with that. Second, is remedial help enough or does her child need on site assistance when needed to suceed and keep anxiety in check.
Beth
Re: Unbelievable IEP meeting! (long)
Thanks all,
I think I really need to sit down and prioritize here. With kids like this we have such a juggling act. Yes, I feel that the reading specialist at the school can help my son. However, the sped supervisor said during the IEP meeting that it could only happen in the Resource Room. I have since done more research and discovered that is not true. I think I was being railroaded because she didn’t want to provide the service.
I talked to the SLP at the school, who would normally do audiology and the type of language related issues my son has - but she is adamant that he is just fine, and doesn’t need her help. So why would I waste his time by forcing her to teach him?
In the meantime, we live in Fredericksburg, VA (Spotsylvania County acutally) - and the private resources here are almost nil - I’d have to drive over an hour each way to find a professional capable of helping my son (already tried almost everyone here). During the school year that is almost impossible to pull off - so I end up doing everything myself. I love him, and he loves me - BUT there is such a thing as too much togetherness!
None of the professionals we have consulted here will advocate for our son in the school system. It’s still a rather small town, and they all have to work together and don’t want any hard feelings. Anyone I have consulted from the Washington and Richmond areas won’t drive this far - they have enough work where they are. None of the medical professionals we have seen are any help, either. They just medicate and move on … I actually had one tell me to move and put my son in the Lab School in Washington, DC! Then there is the insurance company … deny three times, after approving a referral - then when I threaten legal action they finally pay! Sheesh!
Sorry guys, major vent today - is it a full moon? :-)
Lil
Re: Unbelievable IEP meeting! (long)
Doesn’t Shay live in this area?
I don’t think you will find a better tutor than Shay. Check her posts and ask if she will help.
Please feel free to vent. It has really helped me to vent on this board.
I had a very trying but successful IEP meeting today. I just did not relent on what I wanted for my son. It has been exhausting. I haven’t been sleeping right because of all of the unresolved issues in the classroom.
I would say “Fix your sites on what you want and document document document.”
If they tell you, “We don’t do it that way here.” Call them on it. Reply to everything that is said with a letter reiterating your position and clarifying your interpetation of theirs. If they say they don’t provide specific types of placement that you request make sure you include that statement in your letter. Also you may want to use some of the terminology mentioned in IDEA and the 504 section of the ADA. I used the term that he was being denied access to the regular curriculum. (An insinuation that his civil rights under 504 were being denied.) I also mentioned is right to the least restrictive environment. (Implying a violation under IDEA.)
Be very specific about what you want. Make your position very clear and not up for interpretation. I read recently that schools believe parents are ineffective and that is why they will sometimes try to push you around. Be very effective.
I did this and it worked. It was exhausting but worth it.
Re: Unbelievable IEP meeting! (long)Hang in There!
In my state(MA), the reading specialist is under regular ed.(with more money to come in this area, under” no child left behind”), and she pulls kids thru 4th grade each day. Maybe if you exited spec. ed., your son could receive similar help. Don’t underestimate the help a tutor can bring, even if it’s only a high school student to do the Great Leaps program(for fluency)with him after school, to give you a break. We hired a special ed. teacher from another elementary school who tutored my son for 2years. Yes, prioritize, we felt so much better after leaving special ed. and not fighting the school anymore.
Hire an advocate
I think, to get the “most” from your school and an IEP, you should consider hiring an advocate or educational psychologist to go over records, help define needs and address these issues at any future IEP meetings. I’ve talked with numerous parents (locally in my area) and we all agree this is the way to go.
I was able to get a recommendation for the educational psychologist I hired, but I also called a few from the phone book and spoke with them as well before I made a final decision on who I wanted to hire.
To be quite honest, I don’t believe the school can actually “help” my son. They can provide accomodations and a positive environment (all good things), but truly “helping” him is something I’m going to have to do myself. And this I can only do by working with him and/or hiring people outside of the school to provide the services he needs.
Also, along with any type of work we do (Reading, cognitive exercises, etc…), we set up a reward system. He earns things for doing hard work. I don’t know if that would help with your son, but you could discuss it with him and see if it’s something he might be interested in. My son actually set up his own reward system! I think that made it easier for both of us.
Good luck to you!
Re: Unbelievable IEP meeting! (long)
Check this out for novel ways to fight the system:
http://www.reedmartin.com/doyouhaveacomplaint.htm
Has he had individual achievement testing(Woodcock Johnson, Test of Written Language 3, Gray Oral Reading 4), that would allow a comparison with his average intelligence? In other words, what measures are school people using to assert that he’s not learning disabled and doesn’t need special ed. services? Go to your state’s dept. of ed. site and read what categories of disabilities are eligible for special ed. in your state. In mine(Mass.), to qualify under SLD, you need to meet the SLD diagnosis, and NOT be making adequate progress in reg. ed. because of the disability AND need special ed.services. Only you can answer the question of what help is available in your school; I admit that we took our son out of special ed. and do everything at home; he functions adequately in reg. ed. despite his LD because of huge effort at home…but he’s not NLD…if you want emotional assistance, social skills training, anger management…talk to your prescibing MD(s), about a diagnosis of ED that may qualify him for more in school. What about a 504? I am in the minority in that I don’t think that school based special ed. can cover every child who doesn’t function up to cogitive abilitiy, I think spec. ed. is stretched too thin, and ends up doing very little for the higher functioning students. Good luck.