Don't assume the educators know what your child needs


I stumbled across a site today that has the following listings:

Anthony: leukemia
Jessica: neurofibromatosis
Ashley: cerebral palsy
Mysti: Pseudotumor ceribri
Jess: lupus
Trudy: Vater's syndrome
About operations
Angela: cystic fibrosis
Matt: spondo-epiphiseal-dysplasia
Tyler: neuroblastoma
Peggy: bipolar disorder
Matthew: idiopathic juvenile osteoporosis
Thomas: leukemia
Trevor: Wilm's tumor
Elizabeth: muscular dystrophy
Quinn: ataxia
Katy: amputation
Yum Yum: sickle cell disease
Margaret: Spinal muscular atrophy
Devon: chronic intestinal pseudo obstruction
Children: ADD
Children: asthma and diabetes
Devin: Hirschprung's disease
Emily and Amanda: asthma
Kathryn: otosclerosis
Ashley: cerebral palsy
Christophe:xeroderma pigmentosum
Brittany: hydrocephalus
Courtney: maple-sugar disease
Chris: celiac disease
JJ: hemophilia
Nathan: Hirschprung's, colostomy
Conor: multiple hereditary exostoses
Nicole: ditto-MHE
Bobby: double ditto-MHE
Megan: asthma
Courtney: g-tube
Becca: tetralogy of Fallot
Christopher: autism
Craig: Moebius syndrome
Robyn: Moebius syndrome
Kristina: Moebius syndrome
Jonathan: cystic fibrosis
Melanie: sickle cell disease
Andy-Gabriel: Behcet's disease
Ashly: skeletal dysplasia
Corinna: Moebius syndrome
Ashley: leukemia
Colton: diabetes
EmaLee: pseudo tumor cerebri?
Jackie: cystic fibrosis
Sage: Von Willebrand's disease
Michael: leukemia
Rashad: rhabdomyosarcoma
Zachary: neurofibromatosis
Libby: hypogammaglobulemia
Katie: Grave's disease
Rebecca: scoliosis
Alexis: CP, SCD, lupus...
Adam: Crohn's disease
Maddy: Ewing's sarcoma
Dani: Rett syndrome
Heather: rheumatoid arthritis
Angela's essay
Megan: arrhythmogenic right ventricular dysplasia
Laura: aplastic anemia
Georgianna: kidney stones
Liz: arteriovenous malformation
Emmah: bipolar disorder
Natalie: Moebius syndrome
Joe: adhd, asthma
Stephanie: anklyosing spondylitis
Lily: diabetes
Jayme: vocal cord paralysis
Nava: Beckwith Weidemann
Rachel: protein-losing enteropathy
Betsy: reflex sympathetic dystrophy
Tonia: cerebral palsy
Megan: brain tumor
Shannon: avm
Lacey: spina bifida
Jackie: GERD
Marina: CP. Borderline (BPD)
Amity: MVA
Ashley:fibromyalgia, IBS
Jen: neurofibromatosis
Jamie: psoriasis"ish"
Kelly: cp, Raynaud's
Oriana: Down syndrome
Sophie: Hirschprung's disease
Jenny: scoliosis plus
Minna: physical disability
Bridget: lupus, fibromyalgia
Christina: irritable bowel sydrome
Litaya: nephrotic sydndrome
Heather: congenital heart disease
Jonathan: Duchenne muscular dystrophy
Ryan: VATERS association
Tieanna: lupus
Lauren: porphyria
Troy: liver transplant
Mariane: osteosarcoma
Sandy S: polycystic kidney
Sandy G.: Moebius Syndrome
Martin: benign congenital hypotonia
Barbara K: ITP
Barbara R: deafness
Fiona: M.E., CFIDS
Judy: polio
Joel: brain tumor
Lynn: depression
Joe: bi-polar illness
Keara: congenital strabismus, etc.
Angela: cerebral palsy
Robert: spina bifida
Amanda: asthma, allergies, depression
Lori: kidney transplants

I think as parents of children with disorders, we sometimes expect school personnel to automatically know about our childrens' disorders and how best to develop appropriate supports and/or IEPs. It's easy to forget that unless an individual has been personally touched by any type of illness, chances are they have little more than rudimentary knowledge about the specifics.

There are a lot of disorders that members on this board deal with on a daily basis that are not denoted above. There's not a teacher, diagnostician, principal, special education coordinator that can be an expert in every medical or neurological disorder -- it's just not possible in my opinion. With this in mind, it's even less likely that individuals will understand how one disorder impacts a co-existing condition.

Food for thought: What's your plan for helping educate school personnel about your child's disorders? What presentation method do you think would be best to use in providing info to the educator(s)?


New Member
My oldest son has PANDAS (pediatric autoimmune neuropsychiatric disorder attributable to streptococcal infection syndrome). Every school year, at our very first meeting, we discuss what it is and how it affects our son. It's not a difficult concept, basically it's an allergy to strep. Where other kids get high fever and sore throats, my son gets Obsessive Compulsive Disorder (OCD) like behavior and enuresis. It's treated with amoxocillin. However, we tell everyone each year because we want them to know that it's a neuro disorder and he is not, for instance, wetting himself on purpose. As he is getting older, it is improving. He hasn't wet in school since 4th grade, but up until this year, occasionally had accidents on the way home.

In grade 6, I prepared a ton of stuff on NonVerbal Learning Disorder (NVLD) to be placed in his file, but nobody read it.



New Member
The only way we've actually had educators truly listen and take recommendations to heart was when we had a "professional" - someone who had a degree that trumped theirs - tell them like it was.

I don't know how we alone could present effectively in our SD. I thought I did, but I was wrong every time. Outlines, graphs, concise letters and lists...We're not "bona fide." But a PhD could walk in and fart and they'd applaud.

Sorry...bad day


Active Member
Alisha, well this year my husband and I sat down and went step by step with how we wanted our son to be treated this year. Although, in our opinion, we weren't 100% sure if he was ready for grade six, academically, we were tired of fighting with his old elementary school. So....

We knew this school would have his cum file. That's a given. That terrible report like card will follow him right up until he finds employment, no doubt. what we did was...

We met with the principal of his new middle school. We practically harassed the Principal via emails to get a TA,(God sure was watching over us, cause we got two part timers that equalled at least one of them with him in every class) and we sat down with the Methods and Resource supervisor and got an SEP in place before the end of September. They just wanted to be sure what he could and could not do first, else he would have had it done before school started.

We have regular case conferences, daily updates through phone calls or emails. As well, we prepared an information package and I went to the school and did a presentation on Tourette's Syndrome/Obsessive Compulsive Disorder (OCD)/ADHD (just a touch on ADHD) and continue to be very cooperative with the school.

Although the ONLY ONE single solitary complaint I do have is that we do find the M&R supervisor negative quite abit. She jumps to conclusions about our difficult child and thinks total chaos is going to erupt, even when it doesn't. We think the negativity is just a natural part of M&R teachers role. I dunno...

Anyways, but we have found that making sure we are cooperative, flexible, consistent, and most of all available at all times helps. As well we have taken parenting courses to ease the last schools minds that we aren't bad parents and our difficult child has had many tests done.

Its a lot of work but worth it. At least we are hoping the next report card will tell us we are doing good along with difficult child.

Bonnie Jean


New Member
This is a good subject and here is what I have done:

My daughter has ADHD/PTSD/ODD and Depression and was getting ISS which I have documented 15 times in her first semester of school.....IEP was requested by me in Aug.....

On 11/18 we had her IEP and what I did was to research what each disability was (awesome sites on the web) and came up with an 8 page document for my daughter this document started with ADHD what it is the symptoms and then I gave examples and solutions specific to my daughter and her behavior. I prepared it so that anyone can use this for her including myself.....Here is an example: My daughter got In school suspension because she was sharpening her pencil for too long of time..... I stated in a situation like that ISS is not necessary, what WE may want to try is saying "Hey Casara if that pencil could talk it would say I'm melting stop please.....Lets go to your seat and see where your at, I can help you" I included that this needs to be done in a sincere and positive manner. Another example is: Casara will exhibit body language such as laying head down, standing up in class, verbally saying "HUMMM" (outloud), Zoning out, looking out a window, sharpening a pencil to often or long. When she is exhibiting these types of signs is would be helpful to positively re-direct her (and be sincere) having someone come to her talk to her maybe read to her to get her back to where the class is, help her understand what is happening, what is being said. also adding Negative behavior should be ignored as much as possible, attention paid to it might only serve to reinforce it. Any neg. feedback should be given in private, reward effort and desired behaviors. Take a time out or break if you are about to make the conflict with the child worse and not better Pick the battles, since the child with-ODD has trouble avoiding power struggles, prioritize the things you want the child to do.

So what I did was included situations, methods, solutions, examples and including my advice and that advice given on the professional sites...And for my daughters situation I included a background on her emotional situation (how the PTSD came about). Also added that this is a confidential document at the top of the document, I have had no Special Education schooling in anyway but this in-depth report mimikced a short report from the school districts physiologist...WOW..... Now, hopefully you all are lucky enough to have a school that will utilize this information for behavior plans and IEP's..(you can add in the IEP that they are to do positive reinforcement and not be neg with-your child/Positive sincere)....My daughters school is having a spasm but at least they have an in-depth knowledge of my daughters disabilities. This document will also help if they ever refuse to help your child in some way, it's like this, They can't say they didn't know........ I hope that this will help and hope I was able to give a "clear" picture of what this document detailed......Renee

Here are the sites I used and quoted on my document (be sure to list all resources on your document bottom of last pg is good)
Information gathered from: WEB MD/MayoClinic/AACAP/Renee


Alisha, I find myself getting frustrated in having to listen to people within the school offer up new diagnosis's for my son. I have gotten to the point where I don't trust them, I don't believe most of what they say, and when they try to tell me "well maybe he has blah blah (tourettes for example)"...I snap back with, 'when did you obtain your degree in psychiatry?' They shut up pretty darn quick.
My latest frustration is with the school nurse who when my advocate brought me to her and said, Mrs *** wants to request a health plan be put in place because her son has a seizure disorder...the ding dong nurse said, "OH, I didn't know that"...okay, she gives difficult child his anti seizure medications every day at lunch (and this is a small school...what does she think he is taking it for?) I am so ooooooooo thankful that I finally found an advocate, because for so long I have doubted myself in making a big stink over certain things. Finally, I have someone to help me validate those feelings and tell me what is right or wrong. You should have seen the people at the school when they walked into our last IEP meeting and saw not only my advocate, but her supervisor came along for good measure. :eek:


New Member
WOW! You all have done some great preparation for meetings! My difficult child's AR is this afternoon. I have written a list of accommodation recommendations to consider...but thanks to your advice, I am going to go back and add some "situational" details to back them up. I can just hear "their" voices now...."But why would we need to do that???" Anyways, I also wrote up some goals and objectives, rewrote "old" goals that are not working, AND prepared a notebook of information for teacher's about Bipolar. Anything else I should add??? Ahh well. Wish me luck. I am already getting nervous and meeting is not until 2:45. difficult child's in-home therapist is coming with me for moral support and "back-up", so I am hoping for a positive and productive meeting.


Whew! Impressive!

I confess to the frustration of having to get difficult child's teacher's up to speed on his specific problems every year. Seems it takes several months for teachers to get to know difficult child, and valuable time is lost. (Quite understandable with-the number of kids in the classroom.) We've also run into a teacher personnel change in the middle of the year, so it was back to ground zero.

Anyway, I've taken the easy way out. (I think. lol) I created a website for my son's teachers. I send them the url, and will supplement with additional information if needed.