First School IEP Meeting for Son; UPDATE post 19

[KandiB47]

We have our first IEP meeting (requested by me) next week. What should I expect? My main concerns are that my son (7, 2nd grade) is overwhelmed by the noisy classroom, unable to follow directions or complete work in large group settings, speech pattern inconsistencies, and low phonics scores. As far as I know, he has not been evaluated by the school. The school is going off of what my pediatricians eval says. The school psychologist called me and said I need to be prepared to advocate for my son but Im not sure what is best for him. Suggestions? He is only diagnosed with ADD and "sensory disturbance". Im working with insurance to get further neuro psych testing.

 

[bookwormde]

Hi,
First off as a technical note, if your child has not been evaluated yet and has not qualified for special education under IDEA or Section 504, the meeting is a pre-evaluation meeting, not an IEP meeting (still part if IDEA/504 process).
It is great news the psychologist has advised you to be prepared to advocate for your child, since that shows that she is "on your side". Unfortunately it also indicates that other parts of the school team may not be.
You indicate that your child is exhibiting 2 major characteristics, sensory processing differentials (no such thing as sensory disturbance), and Executive function differences (ADD). My first question (and the first thing your clinicians should have looked for also) is any social perception or presentation differences either hypo or hyper. The reason for this is that the first 2 are most often from Aspersers ( autism genetics) and the social differentials are the 3rd.
Even of you are not seeing the 3rd, your clinical neuro eval should be done by a team that has a high level of competency with high functioning Autism/Aspergers, since they have the best experience with the first 2 and the speech concerns.
Not sure how much you know about Aspergers, but while it dopes present challenges, they are very manageable with the rights supports, accommodations and environment. The good news is that the genetics come with amazing gifts that make individuals who are Aspergers (or have a large part of the genetics) have abilities well above their typical peers in many areas. I would suggest going to your library or bookstore and getting a copy of The Complete Guide to Aspergers by Tony Attwood and read it before the meeting. If the information resonates then you have a path to explore.
As part of the legal requirement now that you have indicated to your school that your child may have a disability, is to evaluation for all possible disabilities that are in any way possible. From your description this would include other health impairment (ADD/ADHD), or sensory processing disorder, speech impairment, and Autism (Aspergers). You should list these out for the team at the meeting.
If you have a friend who has been though this process, bring them with you as support since these meetings can be very intimidating and emotional for parents. If not see if your schools' PTA has a special needs/exceptional child or advocacy committee, and they may have someone who will go with you.
Do not let them wait for the full evaluation and recommendations or be completed to begin accommodations, since under 504 they must be provided as soon as practical. noise dampening headphones, repeated and visual instructions, are just a couple that can be tried right away.
Here is the website for your state's Parent training center, which is paid for by USDOE to ensure that parents have access to the information they need to advocate for their children with special needs.
www.wifacets.org
Also here is a link to the National PTA special education toolkit which has lots of useful information and links
https://www.pta.org/advocacy/content.cfm?ItemNumber=3715&navItemNumber=3728
Sorry for being so long, but you have lots of homework to do before the meeting.
Bookworm

 

[KandiB47]

Thank you for the info. I did not know about the pre-IEP meeting. This will help with planning. I have had him evaluated for autism by a pediatrician and a neurologist and they both said he does not have autism. He has sensory processing disorder (determined by OT) but I was told that is not a diagnosis the school can help him with. I just called it "sensory disturbance" because that was the diagnosis listed on his paperwork from his most recent dr. visit.

 

[bookwormde]

Almost all HFA/Aspergers children's parents are initially told that it is not Autism, and only after doing their own research and having the child evaluated by a highly qualified team specializing in Aspergers do they get a proper diagnosis.

Your child may not meet the formal diagnostic criteria, but there is a very high probability that what you are seeing derives from Autism genetics. The good news is that in a few years there will be a genetic scan testing, so most of the clinical lack of competence in this area will not create such serious delays in identification and support with our children.

Oh by the way any clinician who says they can "rule out" autism genetics in kids with the characteristics is basically incompetent in the science of Autism.

Good luck on the journey and trust your instincts

 

[KaLyn]

Well, I was going to chime in here but it seems that bookwormde covered everything that I was going to say (especially with IDEA)! OP, you are in good hands.

 

[Vidia2]

Thank you for the info. I did not know about the pre-IEP meeting. This will help with planning. I have had him evaluated for autism by a pediatrician and a neurologist and they both said he does not have autism. He has sensory processing disorder (determined by OT) but I was told that is not a diagnosis the school can help him with. I just called it "sensory disturbance" because that was the diagnosis listed on his paperwork from his most recent dr. visit.

It sounds like the professionals have ruled out autism which is a good sign. In your son's case with sensory processing disorder OT would probably be a good place to start as far as pushing for services. I would work on getting letters from professionals - pediatrician, neurologist, OT, stating what services they believe would be helpful.

Regarding the meeting, try not to be intimidated by the system. Be positive and thank them all for their help but let them know that you're willing to fight for what your child needs based on what the professionals are telling you.

Maybe your OT could help you find a parent support group in your area. The benefit of this would be finding out what other children are getting as services in your county for the same issues. Parent groups aren't for everyone but they can be useful especially in the beginning to sort out how the system works.

Best of luck to you!

 

[Fjobe]

Good luck to you at your referral conference. I wanted to mention that OT is something that can be addressed in schools. It is a related service which means if he receives OT under an IEP, it must be related to the disability he is categorized under as well as support the stand alone services he receives.

I agree with others who have stated that ADD symptoms coupled with SPD looks a lot like Aspergers. I have seen multiple children with an early diagnosis ADD & SPD later diagnosed with Aspergers.

 

[KandiB47]

He makes friends easily and doesn't have social skill problems, which is why he has been ruled out for autism by the two doctors. Personally, I think he has auditory processing disorder and that causes his other symptoms. We haven't tested for that yet but he has a neuro psych eval next month.

I should also add that the speech concerns are that he confuses certain sounds like n and m, b and v, and s and th. For example, he says "seben" (seven), "sunsin" (something), "afout" (about) but he is able to say them correctly if I ask him to.

 

[bookwormde]

Just so you know making friends easily and Aspergers are not mutually exclusive. In Aspergers kids it is the sometime times the subtle social variances and lack of fluency in less familiar situations that are seen in the highly adaptive kids. The speech stuff is not that unusual and does occur is both NT and AS kids, so that is not the best indicator. I have had kids who have seen dozens of clinicians who said "no" before going to a highly qualified team and finding out "yes" or as I said he may only have a few pieces of the genetics. Time will tell

 

[2tinkerbell]

Seems like you are on the right track. I would suggest that since you are starting the IEP process, get the book, "From Emotions to Advocacy" by Pamela Wright. Excellent book full of advise.

I suggest that you listen to what the school is saying, but, don't sign anything until your neuro-psych evaluation. Be up front and tell them that you have this evaluation and want to get the results and recommendations before finalizing the IEP.

My DD has Central Processing Disorder, Sensory Integration Disorder and Executive Function Disorder and is NOT on the Autism Spectrum. Very hard for school professionals to deal with that concept. My DD has right frontal lobe brain damage.

 

[KandiB47]

Just so you know making friends easily and Aspergers are not mutually exclusive. In Aspergers kids it is the sometime times the subtle social variances and lack of fluency in less familiar situations that are seen in the highly adaptive kids.l

I did not know that. Thank you.

Seems like you are on the right track. I would suggest that since you are starting the IEP process, get the book, "From Emotions to Advocacy" by Pamela Wright. Excellent book full of advise.

I suggest that you listen to what the school is saying, but, don't sign anything until your neuro-psych evaluation. Be up front and tell them that you have this evaluation and want to get the results and recommendations before finalizing the IEP.

My DD has Central Processing Disorder, Sensory Integration Disorder and Executive Function Disorder and is NOT on the Autism Spectrum. Very hard for school professionals to deal with that concept. My DD has right frontal lobe brain damage.

Great. Thank you. I just bought the book on kindle.

 

[Vidia2]

Just so you know making friends easily and Aspergers are not mutually exclusive. In Aspergers kids it is the sometime times the subtle social variances and lack of fluency in less familiar situations that are seen in the highly adaptive kids. The speech stuff is not that unusual and does occur is both NT and AS kids, so that is not the best indicator. I have had kids who have seen dozens of clinicians who said "no" before going to a highly qualified team and finding out "yes" or as I said he may only have a few pieces of the genetics. Time will tell

Sorry to cut in... Just curious about your use of the word genetics. Is this new terminology? Just wondering since this isn't a disorder that's proven to be genetic except in some cases.

To the op - from our experience, a neuro-psych eval is very thorough so if there's anything else you should be worried about now, it will show up, as far as any link to ASD.

 

[bookwormde]

Sorry to cut in... Just curious about your use of the word genetics. Is this new terminology? Just wondering since this isn't a disorder that's proven to be genetic except in some cases.

To the op - from our experience, a neuro-psych eval is very thorough so if there's anything else you should be worried about now, it will show up, as far as any link to ASD.

Yes Autism has been demonstrated to be primarily generated by genetics. There are a significant number of strand sections of genetic differentials that have been identified and confirmed by both active scan and post mortem brain structure and activity analysis of differentials. The strands identified likely are only a small percentage of the total number so while a large percent of individuals show having these, not all do. More to come as the genome project and full 2b pair scans become more affordable. If you are interested in more info visit NIH and the genome project web site and read though the released over the past couple of years. certainly environmental factors as well as other individual factors have impact in the intensity of presentation, but it is the neurological rewrite of brain structures, their use and the associated connections are at the core of the variation. We will be scanning genetically for Autism at birth within a few years

 

[Vidia2]

Yes Autism has been demonstrated to be primarily generated by genetics. There are a significant number of strand sections of genetic differentials that have been identified and confirmed by both active scan and post mortem brain structure and activity analysis of differentials. The strands identified likely are only a small percentage of the total number so while a large percent of individuals show having these, not all do. More to come as the genome project and full 2b pair scans become more affordable. If you are interested in more info visit NIH and the genome project web site and read though the released over the past couple of years. certainly environmental factors as well as other individual factors have impact in the intensity of presentation, but it is the neurological rewrite of brain structures, their use and the associated connections are at the core of the variation. We will be scanning genetically for Autism at birth within a few years

I don't want to hijack this thread any further but when NIH finds something useful, like an effective medical treatment, please send me a PM.

 

[J.C.&ALI'SMOM]

He has sensory processing disorder (determined by OT) but I was told that is not a diagnosis the school can help him with

I am surprised by this. Our school system in VA offers services by an OT and they treat children with sensory processing disorders. Is this unusual? Not offered in other states or school systems?

 

[kirstenb1]

I am surprised by this. Our school system in VA offers services by an OT and they treat children with sensory processing disorders. Is this unusual? Not offered in other states or school systems?

Our school has an O/T too, and we're in Virginia. Here's the disconnect for us. The services provided are "educationally necessary" or words to that effect. Meaning if your child struggles with handwriting, or cutting with scissors, they qualify for services. Sensory processing, no.

Now I will say our current school O/T is great, and does try to integrate strategies to help kids with sensory issues. However, she only works part time, and every kid I've met (I sub, and am often called into SPED classrooms) gets 30 minutes once a week, max.

So we had our dd in private practice O/T for a little over 3 yrs, where they worked much more extensively on sensory issues.

 

[bookwormde]

I don't want to hijack this thread any further but when NIH finds something useful, like an effective medical treatment, please send me a PM.

No problem, if you could send me a pm I can find follow up as things come out. NIH is research, CDC /FDA generally work on the broad clinical application.

 

[bookwormde]

I am surprised by this. Our school system in VA offers services by an OT and they treat children with sensory processing disorders. Is this unusual? Not offered in other states or school systems?

Schools are required to address and accommodate for sensory processing disorder since it always has an impact on educations (both academic and functional).

Many districts lack the knowledge and skill in this area since the science and treatment are advancing rapidly. We are luck in my state to have a pioneering program, which was started by a mom who could not find services for her child.

 

[KandiB47]

Just so you know making friends easily and Aspergers are not mutually exclusive. In Aspergers kids it is the sometime times the subtle social variances and lack of fluency in less familiar situations that are seen in the highly adaptive kids. The speech stuff is not that unusual and does occur is both NT and AS kids, so that is not the best indicator. I have had kids who have seen dozens of clinicians who said "no" before going to a highly qualified team and finding out "yes" or as I said he may only have a few pieces of the genetics. Time will tell

I have a couple of updates. First, my son was denied an IEP by the school in December. Long story but they mainly said he is doing well enough (reading and writing at one grade below his grade, which is good enough and average, according to the SE coordinator). He was enrolled in Response to Intervention at that time. He did not have a "good enough" diagnosis because the ADD diagnosis was unsure and his speech was understandable most of the time.

Secondly, yesterday I received the final results from the Neuropsychologist and he was diagnosed with autism spectrum disorder. I wanted to
thank you for your comments about social functioning and how it relates to autism. After you posted the above comment, I started researching and autism seemed possible. It softened the blow when the Neuropsychologist first suggested the possibly a couple of months ago.

Now, of course, I want another IEP eval. Should I get an advocate this time? The SE coordinator was difficult and blew off every concern the teacher had and we had in the first meeting, saying repeatedly that he was in "normal" range and we don't want SE. I also don't want to make the group mad, as we are going to have to work as a team for a long time. I think with his new diagnosis and test results showing that his IQ is above average, we probably can get the IEP this time but I am so lost with these things.

Thanks!

 

[3doodlebugsmom]

I have a couple of updates. First, my son was denied an IEP by the school in December. Long story but they mainly said he is doing well enough (reading and writing at one grade below his grade, which is good enough and average, according to the SE coordinator). He was enrolled in Response to Intervention at that time. He did not have a "good enough" diagnosis because the ADD diagnosis was unsure and his speech was understandable most of the time.

Secondly, yesterday I received the final results from the Neuropsychologist and he was diagnosed with autism spectrum disorder. I wanted to
thank you for your comments about social functioning and how it relates to autism. After you posted the above comment, I started researching and autism seemed possible. It softened the blow when the Neuropsychologist first suggested the possibly a couple of months ago.

Now, of course, I want another IEP eval. Should I get an advocate this time? The SE coordinator was difficult and blew off every concern the teacher had and we had in the first meeting, saying repeatedly that he was in "normal" range and we don't want SE. I also don't want to make the group mad, as we are going to have to work as a team for a long time. I think with his new diagnosis and test results showing that his IQ is above average, we probably can get the IEP this time but I am so lost with these things.

Thanks!

There are three questions that need to be answered as YES to qualify a child for an IEP:

1. Does your child have a disability? What type?
2. Is your child not making effective progress in school due to the disability?
3. Does your child require specialized instruction to make effective progress or require related
services in order to access the general curriculum?


And these are the categories used to determine if a student has a disability that makes them eligible for special education (these are based on state and/or Federal laws and regulations):

Autism
Deafness
Deaf-Blindness
Developmental Delay
Emotional Disturbance
Established Medical Disability
Hard of Hearing
Mental Retardation/Intellectual Disability
Multiple Disabilities
Orthopedic Impairment
Other Health Impairment
Specific Learning Disability
Traumatic Brain Injury
Visual Impairment



Question #1:
1. Does your child have a disability? What type?
Yes: Austism And it's on the approved list, so no argument (They answered no in your first meeting)

Question #2
Is your child not making effective progress in school due to the disability?

This is where the school can argue with you, and did. You have to have documentation proving he is not making effective progress. And obviously there will be an argument as to what effective progress is. (As you've already seen- he's a grade level behind, they are calling that acceptable. )

Question #3
3. Does your child require specialized instruction to make effective progress or require related services in order to access the general curriculum?

Again the school can argue here. They will want to know exactly what specialized instruction can be given to allow the student to access the general curriculum. And they won't want to hear about "accommodations" as the teachers are supposed to do that for all students, and accommodations are not special education, and can be handled in a 504 plan.


So this is the information you'll need to present to the IEP team to deem him eligible for special education services. I would at least talk with an advocate to see if they could help you answer these questions.


It was at the end of 5th grade that we finally did neuro pscyh testing with my son. He tested onto the spectrum. I always knew he was different, but he was passing in school, and his teachers just naturally made accomodations for him, but there were red flags in school every year. Each year brought a different problem. We started asking for an IEP in 6th grade- denied, he was passing. (See question 2 for them passing = effective progress). We finally got the IEP written at the beginning of 8th grade, and that was after a miserable 7th grade year where he was passed by the skin of his teeth- mostly d's a couple of low c's. The difference was this time we had support from the behavior therapist and one of his teachers in particular who were able to answer those 3 questions in a way that made him eligible.

He now has a behavior plan and and his IEP is written specifically for organization and completion of work as he reads above grade level and does math at grade level, and his NECAP scores put him in the proficient range, so he didn't need "individualized education" in that regard. But they did put him in resource once a day, every day, where he finishes all the work he didn't do in class and they make sure to "chunk" out projects for him. They also keep track of his homework as this year he has decided he was not doing any school work at home.

Good Luck!! Get or talk to an advocate and be ready to answer those 3 questions!!