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Old 12-11-2013, 09:16 PM   #1
KandiB47
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First School IEP Meeting for Son; UPDATE post 19

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.
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Old 12-12-2013, 05:08 AM   #2
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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.
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Old 12-12-2013, 09:03 PM   #3
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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.
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Old 12-13-2013, 05:02 AM   #4
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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
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Old 12-13-2013, 05:08 AM   #5
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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.
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Old 12-13-2013, 05:44 AM   #6
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Originally Posted by KandiB47 View Post
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!
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Old 12-13-2013, 06:03 AM   #7
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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.
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Old 12-13-2013, 02:50 PM   #8
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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.
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Old 12-13-2013, 04:11 PM   #9
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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
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Old 12-13-2013, 05:04 PM   #10
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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.
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Old 12-13-2013, 05:16 PM   #11
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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.

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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.
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Old 12-13-2013, 05:33 PM   #12
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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.
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Old 12-14-2013, 09:31 AM   #13
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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
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Old 12-14-2013, 09:51 AM   #14
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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.
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Old 12-14-2013, 10:01 AM   #15
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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?
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