How do I get my ds extra time in school?

[Broo100]

Hi everyone and best wishes for 2014. I hope you can help me with this one. My ds, 11, was diagnosed a year ago with PANS/PANDAS. He is doing much much better now but the fall is tricky for him as the exposure to many vriuses/illnesses, at school, make him less concentrated and more jittery than normal. At school (he attends a private school in NY), he has needed more time to get his work done and he has been getting Bs instead of As despite knowing the material inside out because he is unable to finish his tests on time. It is very discouraging to him and I spend a lot of time telling him that "Bs are a fine grade" but he feels like his body is not letting him get the grade he deserves (I hope this makes sense). He has been going to a therapist, once a week, that helps him organize and structure his work but I have refused to go down the ADHD medication route as who knows what can happen to his brain on it. He was on fish oil once and his tics increased very dramatically.

 

My question is, can a kid like this get extra time for exams? How does this work? I don't want to come across as a tiger mom that just wants to get her sonthe extra leg in life but I do feel that he has a bone fide disadvantage. Is there a process for this type of request? He is in 6th grade and, in the spring, when he was very stabilized he was a straight A student. Any thoughts welcome. Thanks.

[911RN]

Hi everyone and best wishes for 2014. I hope you can help me with this one. My ds, 11, was diagnosed a year ago with PANS/PANDAS. He is doing much much better now but the fall is tricky for him as the exposure to many vriuses/illnesses, at school, make him less concentrated and more jittery than normal. At school (he attends a private school in NY), he has needed more time to get his work done and he has been getting Bs instead of As despite knowing the material inside out because he is unable to finish his tests on time. It is very discouraging to him and I spend a lot of time telling him that "Bs are a fine grade" but he feels like his body is not letting him get the grade he deserves (I hope this makes sense). He has been going to a therapist, once a week, that helps him organize and structure his work but I have refused to go down the ADHD medication route as who knows what can happen to his brain on it. He was on fish oil once and his tics increased very dramatically.

 

My question is, can a kid like this get extra time for exams? How does this work? I don't want to come across as a tiger mom that just wants to get her sonthe extra leg in life but I do feel that he has a bone fide disadvantage. Is there a process for this type of request? He is in 6th grade and, in the spring, when he was very stabilized he was a straight A student. Any thoughts welcome. Thanks.

My suggestion is to have him have an IEP under OHI- "Otherwise, health Impaired" and have this accomodation built into his IEP. You may need psychoed testing or support from MD. My son has this and he was exempt from timed tests for multiplication tables etc when this was done in 3rd-4th grade etc. He is in 7th grade now. We have many things built into his IEP to accomodate for his weaknesses and to allow him greater success. His math teachers will tell you he is probably the best in class at straight math facts and computation-addition, subtraction, multiplication, division but he is very methodical and does not do well with time pressure. He is always accurate if not fast. Not that he is exceededly slow but he does need more time.

[Broo100]

thank you. that is exactly my son

[Broo100]

ps. Sorry. what is IEP and how do I get one?

[pr40]

teachers need to be aware of the kind of difficulties our kids have. I tried to form a relationship with teachers and meet with them every two months to monitor dd10's progress. we did move schools, from public to montessori for this reason. I compared PANDAS to ADHD and they got that something was different with dd which was the point. Now, next step is to figure what works best for dd, when they can expect her to do work like other kids and when they cannot. Of course, this puts much pressure on teachers AND that is exactly why we moved to a private school where you can demand, if not expect, that.

so, my advice is form a personal relation with teachers. try to explain to them what kind of behavior they can expect, what kind of difficulties your child is going through. and also don't expect your PANDAS child to have all As. that's an unrealistic expectation which puts too much pressure on the child and on you. ANd, conversly, if grades are your worry, you are lucky.

[911RN]

An IEP is an Individualized Education Plan. In public schools it is a right for any child that has special needs or kids that do not fit into the box in school to be able to have an IEP...their plan differs from what is considered universal teaching norms for most kids in school. It is individualized "plan" to state accomodations to utilize child's strengths and work on weaknesses. For example, in our state kids take End of Grade (EOG's) testing required for state and federal goverment. If the school allows different accomodations for EOG testing then it must offer those same accomodations in class-- all year long-- for child in the classroom. For example, my son takes EOG's that only have one question per page and 3 choices rather than 4.

 

He is a tad OCD and one of his quirks is he likes to finish and complete things on a page as quickly as possible. At the expense of getting it right--he just wants to "get it done." He will also not read all the choices throwing out the ones that obviously not the answer and narrowing down between 2. That's why less choices are better for him. We have found it helpful not to overwhelm him with a lot of problems on one page. He does better if it is one question per page. This year they have gone to all computerized testing (which, may be better?) so I'm not sure how that is going to play out. We'll see??!! Kids with ADHD, learning disabilities, medical conditions, autism can all be under an IEP for school.

 

I don't know how it works in private schools???? However, this is a process. Have to meet certain eligibility, may need testing and support of MD for diagnosis etc. However, you should ask school about it.

[peglem]

It might be easier to get a 504 in place. That is just a plan that details accomodations for your child to access the regular curriculum w/o any special ed services. Your problem, of course, is that Bs are fine grades, and most schools will not consider his difficulties urgent enough to address. On the other hand, 504s generally do not cost anything-

[bigmighty]

DS qualified for a 504 plan for accommodation. Much easier than an IEP. Here's the letter his pediatrician sent to the school.

 

To Whom It May Concern:

XXXX is a XX year old boy (DOB XXXXXX), who is well

known to our practice. In Month/Year, XXXX received a definitive

diagnosis of PANDAS Syndrome by the National Institute of Health in

Bethesda, MD. His NIH diagnostic team included Dr. Susan Swedo and

Dr. Paul Grant.

PANDAS Syndrome is an autoimmune disorder that causes inflammation

of the basil ganglia area of the brain. This results in behavioral, motor,

and neurological challenges that are sometimes severe. Currently, XXXX

displays characteristics of motor deficit hypotonia, and also struggles with

math facts and rote memory. It would be appropriate to offer any

accommodations that might assist him in his school and/or testing

environments. These may include, but not be limited to: calculator use

when calculators would not otherwise be permitted; the opportunity to use

a keyboard on written assignments; modified PE assignments, as needed;

and additional time on tests.

If you have any questions, please do not hesitate to contact our office.

Thank you for your consideration in assisting XXXX in a

successful academic experience.

[Hopeny]

Just to consider, extra time in our school meant testing in the help room outside the classroom with a different teacher. It's just something to be aware of as that may worsen the situation

[Broo100]

Thank you so much. I will call a meeting with the administration and teachers next week and see how it goes. Thanks

[mommybee]

IEPs are only used in public schools. Public schools are legally required to educate all children who live in their district and ensure that they make effective progress. Private schools are not required to provide special services for children with special learning needs. Furthermore, PANDAS (or even OCD) are not, in and of themselves, reason for services or accommodations. However, Section 504 of the Americans with Disabilities Act (ADA) prevent institutions that receive state funding (or tax breaks) to discriminate against students who have disabilities. The statute is available online. You might want to check out the Office of Vivil Rights web pages for a more detailed expiation. The bottom line is that if you can show (this usually requires professional documentation) the school that your child has a disability that substantially impacts a major life activity (schooling qualifies), your child will be entitled to accommodations p. Extended time is an accommodations.

 

Because school personnel tend to be suspicious of parents who seek testing accommodations as children move from elementary to middle school or middle school to high school, I would advise you to proceed with caution if you want to be offered an enrollment contract for next year. If you can afford it, you might want to consider getting a full neuropsych evaluation. Typically, the usual way to get accommodations is to present the school with an educational testing report done by a licensed neuropsychologist that shows that the student either has a specific learning disability or slow processing speed. The testing includes ability testing (usually the Wisc-IV), achievement testing (either the WIAT or the Woodcock Johnson) along with other inventories to assess specific strengths and weaknesses. The report would need to say that because of a slow processing speed, attentional deficits or anxiety, the student would be unable to demonstrate what he learned in a test setting without extended time.

 

If you feel that such testing would be therapeutically destructive p, another approach is to ask you sons licensed psychologist to write a letter which includes the following information: the diagnosis (I think you're better off using anxiety or OCD than PANDAS because everyone understands what they mean and if you go with a medical diagnosis, your son's ability to participate in athletics may be limited), the length of time that your son has been receiving therapy (how long the therapist has known your son), the diagnostic tools that the therapist has used (the Y-BOCS?) and severity of the illness, the last time your son was seen and the date of their next appointment. Additionally, the therapist would need to state that you son's anxiety level in a test setting would be expected significantly reduce his processing speed and ability to concentrate and that without extended time he would be at a disadvantage relative to his up encumbered peers.

 

Depending on how your school is set up, the point person with whom to initiate the process will vary. You may find the answer to this in the student or parent Handbook. If not there, I would recommend that you inquire of your son's advisor, home room or team leader, or the director of academic support (if your school has such a person).

 

Before you assemble documentation of the problem and the way in which it impacts learning and the ability to demonstrate that learning, you will not be prepared to have this conversation and less likely to accomplish your goal.

 

I doubt your doctors/psychologists need a boilerplate letter. I'm sure they have written these before and know the drill.

 

Please feel free to message me if you have questions. I am an educator.

 

Good luck.

[JoyBop]

A private school does not "have to" accommodate your child, but a good private school will want your child to succeed and keep your tuition dollars if at all possible and cost effective for them. I would recommend going in a very politely and kindly ask for modifications and suggestions on how to help your child so that he may remain in their school system. They may already have specific policies in place for children with special needs. Other schools have particular standards, and as a private institution, have the right to decide if a student is a good fit for their program. I would also get the nueropsych eval, but I wouldnt share it with the school until I knew their take on the results. For example, if your school is not looking to serve children with certain deficits or disabilities, I would keep that info private for now until you see how treatment and intervention goes. If they are on board with helping in any way, I would share the info and allow it to guide them in creating new solutions to help your child. I would be fearful that if you presented them with a professional eval that showed XYZ that they may use it as grounds for dismissal. Again, private schools are not required to accommodate or modify, but many of them will and do. You just have to get to know your school.

[Rachel]

My son is currently homebound due to his medical condition. He is enrolled in a k12 virtual online school and he is on an IEP. An IEP provides more protection than a 504. I taught for 21 years in the public school system as a special education teacher. As a parent, you know what your child needs to be successful. Be up front and tell your school how this condition is affecting your child.

Rachel

[Broo100]

update. I had a meeting with the teachers and administration today. It could not have gone better. The teachers agreed that there is a real gap between my ds' knowledge of the material and his testing performance in math and science. They had never heard of PANDAS and we very interested and supportive and, as of today, he will be getting "time and a half" in his tests. They will, in the meantime, reseach PANDAS to be able to help any other kids with it in the future. They said that they will get back to me on what type of documentation I am going to need going forward to provide accomodations for him. I was blown away by they support. I feel like I can breathe so much better. Thanks to everyone here!