The IEP Process – Special Education Advice for Parents (Part I – The Beginning)

March 8, 2009 by 3 Comments

Learning about special education is a daunting journey. I’ve been doing it for over four years now and I’m still learning. I can barely remember the very beginning and how confusing it all was. That’s why when I read a call from Karen Nowicki (an integrative coach) for tips for parents with children on IEPs, I responded, even though it was tough to make my response so brief to meet the 100 words limit.

Karen was gathering responses for an article for Root & Sprout (a site I’ve never heard of until then) and has published her piece on IEPs just recently (update on December 3, 2009 – the site seems to have gone defunct since then).

When the article was posted, Karen wrote to me to let me know she received a lot of responses, and could not possibly include all of them, so I’m more than flattered that she did quote parts of my submission and included a link to this blog, even though I’m not anonymous any more. (I was planning to “go public” soon anyway, although I probably would not have published my name, just give the readers enough information that they would be able to find who I am.)

I’m also happy to be in the company of www.weddingsx3.blogspot.com, by Debbie Yost writing about mothering, family life & Down syndrome awareness; www.motheringautism.blogspot.com, by Pam Walsh, and on the same page that mentions www.wrightslaw.com, by Pete & Pam Wright, William & Mary Law School, Education Law Clinic & Special Ed Advocates, and www.LDpodcast.com, by Whitney Hoffman.

The first tip on how to prepare

Preparing for an IEP will require you to read everything made available to you by the school and everything else you can get your hands on to support your child’s rights to special services.

Is similar to what I wrote to her as well

Read, read, read – You have to know the law, your rights, and what the school is obliged to do for your child. There are several very good books on IEPs out there. My absolute favorite: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

The “Top Ten IEP Tips” from Carrie Gilmer and “Parent IEP Tips” from Eileen Mullin, are great too.

All that said, I tried to read this article as if I were a parent just starting out in this journey, and I’m afraid I probably would still not know what IEPs are all about and how to start the whole process, especially if my child was not in school yet and I did not know any staff from the district yet.

Most likely I would not understand the advice “Know and use IDEA 2004 laws and proper IEP procedure,” especially given the fact that the article does not explain what IDEA 2004 laws are. It is, of course, everyday language for parents of children with disabilities and in special education, but typical parents usually have never heard of IDEA (the Individuals with Disabilities Education Act), unless they work in Special Education themselves. And if they go searching for the term, they are most likely to get to the U.S. Department of Education web site, which is not very “beginning parent” friendly. (as I commented on in “IDEA (Individuals with Disabilities Education Act) U.S. Department of Education Web Site” from December 31, 2008)

The advice “Become an expert on your child’s disabilities” while extremely important, also assumes a parent knows what the child’s disability is. At the beginning of the journey, many parents may not even have a diagnosis yet and don’t know what to search for. In our case, the specialists disagreed on a diagnosis for quite a while. (as I complained in “Personal Introduction“ from September 2007)

So here comes:

Advice for Parents of Preschool-Age Children

When nearly four years ago my son’s private daycare teachers politely told us they won’t be able to “meet his needs” the following year when the number of children in the classroom was going from nine to fifteen and advised us to contact the local school district to see if he qualifies for special education services, I had to call a couple of places in the district before I found the right person to talk to. By the way, at that age “special education services” meant an “integrated” preschool with a comparatively low number of kids and a high number of teachers in the class, who can keep good tabs on everyone.

I know now that the place to start may not necessarily be called “Special Education Office.” In Massachusetts that’s usually called “Pupil Services.” If a district is large, the main office might refer a parent to a local school’s special education coordinator.

Whoever you talk to in that office will probably ask why you think your child should be evaluated and will ask for copies of any paperwork that would support that. They might ask for letters from the pediatrician and/or current teachers. It wouldn’t hurt if you wrote a letter too, listing all of your concerns, with examples. (I like to say things like “I am concerned about my son’s x y and z, because I have observed that …. Because of the concerns mentioned above, I am asking for ….”)

Starting the Binder

The day you first call the “Special Education” department at school is also when you should start a binder to document everything and where you start filing all paperwork, including the logs of phone calls.

I learned about the binder idea in a workshop “Getting Organized” presented to our local Special Education Parent Advisory Council by the Federation of Children with Special Needs. Until then I had been just simply keeping files in my file cabinet. But just about the same time I went to the workshop I found out I routinely ended up taking the files out of my file cabinet and lugging them to various appointments and meetings, where inevitably I was asked if these are originals or copies. I had to say “these are originals,” at which point they’d go and make copies, and sometimes, not often but it did happen once or twice, a page or two from the original would get lost.

Now I still keep the originals in the file cabinet, but as soon as I get any paperwork, I make at least three copies of the originals for the binder, one of which serves as the “pseudo-original” for copying, the other one is an extra copy I can just give out if necessary, and the third one is a “mark-up” copy where I write my comments.

I learned about the phone call log from what I consider one of the best books on special education — Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide, by Pam Wright and Pete Wright, founders of the Wrightslaw web site, which is packed with useful information. Until then it never occurred to me to create a written record of meetings and phone call conversations, but it’s a great idea, because couple months down the road you may not remember the day you called, who initiated the phone call, even if you remember who you talked to, the reason for the meeting or the call, and exactly what was discussed.

What I do now is a bit different than what the Wrights suggest — I write a follow up e-mail to the person I met with starting with “Thank you for taking the time to meet with me (talk to me) on (date) to discuss x, y, and z.” and including all the pertinent information about the conversation, especially if something was decided or agreed to during the conversation. I then print the e-mail and put it in the binder in the “Correspondence” section.

My son’s binder currently has the following sections, separated by labeled tab dividers (like the Avery(R) Write-On Tab Dividers With Erasable Laminated Tabs, 5-Tab, White):

  • Current grade work by date (the work he does at school that is being sent home)
  • Current year’s correspondence by date
  • Current year’s IEP
  • Current year’s progress reports, meeting notes, and data
  • Current year’s report cards
  • Last year’s correspondence by date (for the first couple of months of meetings in a given school year, after that I file it in an “archival” binder)
  • Last year’s IEP
  • Last year’s progress reports, meeting notes, and data
  • Last year’s report cards
  • Extra copies of documents (for photocopying, each in a separate plastic sleeve)

First meeting with the school (pre-IEP)

During the first meeting the school will probably hand you a lot of forms to sign consenting to various testing. The testing is supposed to assess the child “in all areas of suspected disability.” (IDEA Statue, Title I, B, 614, b, 3, B) The typical testing at preschool age usually includes

After all the testing is done, the school will (should) send the parents all results, with raw data and an explanation and recommendations for the future, and schedule a meeting to develop an IEP. At that point the school usually also asks (should ask) the parents to write a “Vision Statement” and “Parent or Student Concerns.”

The thing is – without knowing any information beyond the basic “Procedural Safeguards” and “Special Education Guides” that the school hands out, figuring out what to include in the “Vision Statement” and “Parent Concerns” might turn out to be a tricky homework. But that’s a huge topic, probably deserving a separate blog entry. I’ll try to get to it soon. (I’ve been very busy recently, hence the decline in the number of posts.) But I hope the above, nearly two-thousand word-overview somewhat covers the “What to Expect” part covering the very beginning of the process.

By the way, the tips I narrowed down to 100 words or fewer that I sent to Karen were as follows:

1. Don’t despair. Join a parent networking group if your district has one. In some states a Special Education Parent Advisory Council is mandated by law. It may be very active and working closely with the school administration or it may not. But it’s a great place to meet other parents who understand what you’re dealing with.

2. Read, read, read! You have to know the law, your rights, and what the school is obliged to do for your child. There are several very good books on IEPs out there. My absolute favorite: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide.

I see networking and knowledge as crucial to the whole process. You need to learn about what you’re dealing with and since you’re not the first person starting on this daunting journey (even though it might feel like it at the beginning), connecting with other parents who’ve been doing it for a couple of years usually turns out to be very helpful for several reasons.

Filed Under: Education, Intelligence, Other Blogs, PDD-NOS, Personal Information, Special Education, Testing, Unwrapping the Gift of ADD series

Following the Web from “organic foods” to “hyperbilirubinemia”

February 8, 2009 by Leave a Comment

What does it tell you about eating “conventionally grown” foods if your own health insurance plan includes in its newsletter a short article about eating “organic”?

Harvard Pilgrim’s Winter 2009 mini-magazine includes a brief feature titled “Eating Organic on a Budget.” (see page 11)

Now, if you read the “fine” print (the paragraph titled “A Guided Tour of the Supermarket”), this feature seems to be just somewhat of an ad for one of the Harvard Pilgrim programs called “Supermarket Shopping” which

includes an aisle-by-aisle supermarket tour, led by a registered dietitian, that teaches you how to make informed decisions about the food you buy for yourself and your family.

Too bad they do it only on Cape Cod! I’m quite a long way from the Cape.

But the article also includes “Tips to avoid pesticides” and provides a link to a pdf of the “Shopper’s Guide to Pesticides in Produce” released by the Environmental Working Group. I especially like the page titled “Reducing Exposure is Smart” on the EWG site, which has a section “Tiny Doses Can Be Toxic to Children” and a list of references at the end.

I took a peek at Pesticides in the Diets of Infants and Children and what really got me interested was a quote that’s actually not related to pesticides or organic food at all.

Chapter 2, “Special Characteristics of Children” says

Because of the dependence of behavioral development on physical and functional development, toxic effects occurring before maturation may permanently alter behavioral development. The most commonly encountered and well-known toxicants that can permanently change all four of the components of behavioral development are bilirubin toxicity in the newborn and lead toxicity in the infant or young child. All four aspects of behavioral development are important in studies of developmental toxicology, but much more attention has been given to the first two because they are easier to measure.

The four aspects of behavioral development that they’re writing about are:

(a) gross motor and fine motor activities; (b) cognitive ability; (c) emotional development; and (d) social development.

And apparently:

Alteration in one of these domains can affect the development of each of the other three.

Interestingly, both of my children had neonatal hyperbilirubinemia, which was caused by our blood type incompatibility.

My son’s hyperbilirubinemia was severe enough that he had to get phototherapy. (if I remember right, when he was two days old his levels were at 17 or 18 mg per dL).

My daughter also had hyperbilirubinemia but didn’t receive phototherapy because supposedly her levels were never high enough to warrant that. I do not remember what they were and I do not have these records at home, and now I wonder, because her jaundice hung around for much longer. In fact, she is quite yellow in the pictures from the first days of her life.

Now, I knew that one of the effects of hyperbilirubinemia might be “mild mental retardation.” But if I understand the paragraph I cited correctly, hyperbilirubinemia might also influence the other aspects of “behavioral development” such as gross motor and fine motor activities; emotional development; and social development.

I wonder if anyone has done studies what percentage of people with autism and ADHD had neonatal hyperbilirubinemia as compared to “control group.”

Another thing to add to my “things to research” list…

Filed Under: ADHD, Autism, Gifted and Talented, Nutrition, Personal Information, Therapy and Treatment

Antibiotics and increase in symptoms

January 28, 2009 by Leave a Comment

My son got strep last week and is on antibiotics until the end of the week. Interestingly, I don’t know if it’s because of the antibiotics, lack of exercise and fresh air (it’s either snowing or too cold to go outside), boredom, or what, but we’ve seen some increase in symptoms recently — much more distractibility and fidgeting, some “strange” behavior (high pitched “chanting,” licking things, hanging off the sofa with head upside down). It’s like his brain is going haywire.

It has been a pattern in the past, when he was little, that whenever he was on antibiotics his hyperactivity would go through the roof. This time there are other things happening as well.

I wonder if it’s the red #40, or the antibiotics in general. Or something entirely else… I guess we’ll find out when we stop the medicine.

I’m curious whether anyone has done studies on the influence of antibiotics on the brain, if there are any subgroups of people for whom antibiotics changes their behavior. Or maybe it is the disappearance of the beneficial gut bacteria? I think I’ve read somewhere a theory that antibiotics may increase the severity of autistic behavior, but I don’t remember the explanation of why it would happen and who worked on that. I’ll have to try to look for it…

Filed Under: ADHD, Autism, Medication, Personal Information

NTs or the Neurotypical

January 16, 2009 by Leave a Comment

In her comment to my post “Why are white lies considered ‘politeness’?”, Debra mentions “the NT world.”

Responding to her comment, I wrote in the post scriptum “I doubt that anyone visiting my site would not know what NT, mentioned by Debra, means — but just in case — NT is short for ‘neurotypical’ or, as most people who don’t know any better would probably say — ‘normal.’”

Then I remembered seeing on the Attention Deficit Hyperactivity Disorder Forums a question about what NT means and wondered whether, even though within the “autistic” community pretty much everyone knows what the acronym stands for, others are not as familiar with this term.

The NTs who have a good sense of humor and are not easily offended might find amusing the “Institute for the Study of the Neurologically Typical” site, especially the page listing the “diagnostic criteria for 301.666 Normal Personality Disorder.”

That site reminds me of a joke Stephen Shore made during the presentation I saw nearly a year ago (see the entry  “Understanding Autism (for Dummies, by Stephen Shore)” from April 10, 2008) – that his next book will be titled “Understanding Neurotypicals for Dummies.” He even had a slide of a mock book cover with the bullet points saying things like “learn to decode nonspectrum behavior”; “educate children on radical acceptance of differences” (I’m not sure what he meant here, I’m afraid); “successfully communicate without eye contact.”

As I’m still learning and sometimes have trouble navigating American social customs, I could relate to the joke.

Along the similar lines, but much more philosophical is the blog NTs Are Weird written by an adult male who’s autistic.

NTs Are Weird is full of “opinion” entries, as well as plenty of passionate advocacy and “issues” posts. It also includes quite a bit of personal (sometimes very personal) reflections. Overall I found it a fascinating read, and quite philosophical too.

Reading it made me wonder if my son will think and feel like that when he grows up, and I had a bit eerie feeling of reading letters from the future. But it also gave me a desperately sought glimpse into what the world looks like to an autistic adult.

I remember having a somewhat similar feeling when I read posts of adult ADHDers on the Attention Deficit Hyperactivity Disorder Forums but also remembered how much some of them disagreed with the way the parents on the forum thought the ADHD kids should be handled.

I wonder what the author of NTs Are Weird and other adults with autism think of the parents’ posts and blogs and how much they hate the parents for saying how stressed or upset they are sometimes by their kids’ behavior. I frequently wonder myself how much my son would hate me, if he knew what I wrote about him (especially in the first post).

Yet, we don’t really hate our children, and at least in my case I actually don’t wish my son were a typical child. He’s very interesting the way he is. I just wish I knew how to deal with some of his “moments” and how to keep “cool” at those times. That is still hard.

I do hope my son will be able to express himself in the future as well as the author of NTs Are Weird. He’s not much of a talker, he doesn’t like handwriting, and doesn’t know how to type (yet, I’ll make sure he learns). So I don’t really know what’s going on in this 2e head of his.

Going back to NTs Are Weird, I got very intrigued by the post “Disability Awareness Day” (Sepember 28th, 2008)  and was somewhat surprised by the negative responses to the idea #2, because I like this idea the most. I would add the following exercise to the list — go into a room with strobe lights flashing, music blaring and several TVs turned on, each to a different channel. Have a teacher read a story and then quiz the students on how much they remember from the story and if they do not remember much, have the teacher complain that they should have “tried harder” to concentrate on the story.

I’m also curious though why the author of the NTs Are Weird thinks “ABA is unethical” (“Negative Definitions,” January 10th, 2009) I did not read the entire NTs Are Weird but I did use the search engine and could not find more posts about that. ABA seems to be like a religious doctrine in “correcting” the behaviors of children with autism – everyone seems to be expected to do it and believe in its efficacy.

Filed Under: "Insider's" view, ADHD, Autism, Other Blogs, Special Education

Nestle caving in (and removing artificial coloring) … but only in Australia (and Britain)

December 23, 2008 by Leave a Comment

The Age – Business News, World News and Breaking News in Australia reports in an article “Smarties to lose a little of their lustre” by Kelly Burke (December 20, 2008) that apparently Nestle Australia has caved in, and despite years of insisting that artificial coloring in candy and other food products is safe, has decided to replace the artificial colors in Smarties with “ingredients derived from natural sources.”

That’s because of “an overseas study” linking artificial coloring “possibly linked to Attention Deficit Hyperactivity Disorder.” (see also the entry “Food dyes and the Center for Science in the Public Interest”.)

I’m not holding my breath on when that will happen in the U.S. or even Canada.

(By the way, apparently Kellog’s also has decided to include natural colorings in their products sold in the U.K., but those sold in the U.S. are still loaded with chemicals, see http://www.cspinet.org/fooddyes/index.html)

Well, I guess we’ll just have to continue banning Nestle and Kellog products in our house. I’m not feeding my children that crap.

Filed Under: ADHD, Nutrition

Gifted and Special Education in Texas

October 12, 2008 by 1 Comment

Going over the news I’ve bookmarked a while ago I found a brief story from FortBendNow.com “FBISD Gifted and Talented Academy Students Connect with Real World,” by John Pope that talked about gifted students “learning about the nutritional perspectives of various cultural food items, including those representative of the Latino, Indian and Asian cultures.”

FBISC is the Fort Bend Independent School District funded by the taxes collected by the Fort Bend County in Texas. The district introduced a gifted program in 1990. According to their Gifted and Talented section of the FBISC’s site, GT program is available for identified GT students at every grade level in every school throughout the district. Kindergartners start getting GT services in February of their Kindergarten year.

Texas has a mandate to identify and serve gifted students, (see the Genius Denied, Gifted Education Policies site), and the programming is partially funded by state.

The mandate “that all school districts must identify and serve gifted students at all grade levels” was passed in 1987. (I found this info on the Texas Education Agency “Gifted/Talented Education” page.)

The “Gifted/Talented Education” page has a lot of interesting links. I especially liked the Texas Performance Standards Project link which led me to the “Texas Performance Standards Project Additional Tasks” page with links to specific projects for various grades.

Other interesting info I found on the “Gifted/Talented Education” page were the “G/T Teacher Toolkit II: Resources for Teachers of G/T, AP and Pre-AP Classes” page; and the “Gifted and Talented Teacher Toolkit,” which interestingly includes a link to a page titled “Seven Essential Instructional Strategies for Powerful Teaching Learning” hosted at the Bellingham (Washington State) Public Schools site.

I wish we lived in a state with a gifted mandate…

But on the other hand, I saw a post on ADD Forums from a parent from Texas whose child has been diagnosed with ADHD impulsive at 3 ½ years old and she did not want to enroll him in a public school because did not want him “labeled as special ed” (post # 7 in the “Came home and just cried tonight” thread) because he’d be “thrown into resource classes or self contained classes.” (post # 27 in the same thread). I guess they don’t do as much inclusion in Texas as they should be. Also, the neuropsych doctor who evaluated my son is from Texas and she said that autistic kids do not get very good services around there.

Yet, the FBISD site includes a page titled “Gifted Students with Disabilities,” which includes a section on Giftedness and ADHD, so I suppose that district does recognize (and possibly serves) gifted students with disabilities.

By the way, in case anyone is interested what (average) kids in Texas are supposed to know at each grade level, here’s the Texas Essential Knowledge and Skills (TEKS) page.

Filed Under: ADHD, Education, Gifted and Talented, Special Education, Texas

Food dyes and the Center for Science in the Public Interest

October 10, 2008 by Leave a Comment

This isn’t exactly news – I found this information months ago, when the press release just came out, but I had no time to blog during the summer, so here it is:

An organization calling itself the Center for Science in the Public Interest (CSPI) petitioned the U.S. Food and Drug Administration to ban artificial colorings from food. The press release page has links to the petition itself, and also mentions Dr. Ben Feingold with a link to his Feingold Association of the United States, and two British studies exploring the effects of artificial food colorings on children’s behavior.

The first study was published in 2004, in Archives of Disease in Childhood – “The effects of a double blind, placebo controlled, artificial food colourings and benzoate preservative challenge on hyperactivity in a general population sample of preschool children,” by B Bateman, J O Warner, E Hutchinson, T Dean, P Rowlandson, C Gant, J Grundy, C Fitzgerald, J Stevenson.

The second study was published in 2007 in The Lancet – “Food additives and hyperactive behaviour in 3-year-old and 8/9-year-old children in the community: a randomized, double-blinded, placebo-controlled trial,” by Dona McCann, Angelina Barrett, Alison Cooper, Debbie Crumpler, Lindy Dalen, Kate Grimshaw, Elizabeth Kitchin, Kris Lok, Lucy Porteous, Emily Prince, Edmund Sonuga-Barke, John O Warner, Jim Stevenson.

The CSPI is also “urging parents who believe their children are harmed by food dyes to file reports online at http://www.cspinet.org/fooddyes/.”

Filed Under: ADHD, National Organizations, Nutrition, Studies and Trials

Eagle Hill School’s graduation speech delivered by Dr. Edward M. Hallowell

June 12, 2008 by Leave a Comment

Dr. Edward M. Hallowell, a former instructor at the Harvard Medical School, one of the foremost experts on ADHD in the world, and the founder of the Hallowell Center for Emotional and Cognitive Health, was invited by the Eagle Hill School in Hardwick, Massachusetts to deliver this year’s graduation speech. (March 2, 2011 – Eagle Hill School does not have the speech posted to their website anymore, but you can read the text on Dr. Hallowell’s web site, and you can watch the video on vimeo.)

According to the school’s web site “Eagle Hill School is a private co-educational college preparatory boarding school for students with learning disabilities in grades 8-12. Specific learning differences include: Dyslexia, Language Based Learning Disability, Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, and Nonverbal Learning Disability. [...] Eagle Hill School is the preeminent private high school for students with learning disabilities and ADHD who demonstrate average to above average cognitive ability.”

If I read the information on the web site correctly, the school serves 150 students. Their tuition is $51,692 (day tuition is $36,586).

In addition, from early July through early August, Eagle Hill runs a five-week academic and recreational summer camp for students ages 10-18 who have been diagnosed with specific learning (dis)abilities and/or Attention Deficit Disorder. The tuition for the summer camp is $6,888.

Filed Under: ADHD, Education, Special Education

Heart Conditions and ADHD

May 8, 2008 by Leave a Comment

The American Heart Association recommends that children with ADHD should get “careful cardiac evaluation and monitoring, including an electrocardiogram (ECG) before starting treatment with stimulant drugs.”

Apparently, “studies have shown that stimulant medications like those used to treat ADHD can increase heart rate and blood pressure.” And while “these side effects are insignificant for most children with ADHD; however, they’re an important consideration for children who have a heart condition.”

What I found very curious is the following: “Surveys indicate that ADHD affects an estimated 4 percent to 12 percent of all school-aged children in the United States, and it appears more common in children with heart conditions. Studies report that, depending on the specific cardiac condition, 33 percent to 42 percent of pediatric cardiac patients have ADHD.” What is the link between heart conditions and ADHD?

Interestingly, during the recent American Psychiatric Association, a pediatric psychopharmacology researcher at Harvard, “emphasized that there’s no evidence that stimulant or non-stimulant medication for ADHD causes sudden death.” By the way, his talk was sponsored by drugmaker Abbott Laboratories, which is working on a new drug for ADHD.

What’s the issue here? Money, of course. It’s expensive to do ECG on every child diagnosed with ADHD. And then if a heart condition is detected (in a whooping 33 to 42 percent of the cases) the parents will be told about the risk of side effects and as a result may decide to avoid medications. This recommendation obviously is not in the financial interest of both insurance companies and drug makers.

Filed Under: ADHD, Medication

Bisphenol A and ADHD

May 7, 2008 by Leave a Comment

Apparently major retailers in Canada are pulling off the shelves products that contain bisphenol A because they’re anticipating an announcement from Health Canada that the chemical is “dangerous.” (See the April 15, 2008 article “Major retailers pull bottles containing bisphenol A” on the CTV News web site.

Bisphenol A or BPA is a component in polycarbonate, #7 plastic that is used to make food and drink containers (including baby bottles). It is also used in the lining of soft-drink and food cans.

No action from the Food and Drug Administration in the U.S. on it yet, but apparently, as The New York Times reports in its April 22, 2008 article “A Hard Plastic Is Raising Hard Questions,” the chemical is”facing increasing scrutiny by health officials in Canada and the United States.”

What I found interesting in the article on CTV is the following quote: “There are over 150 peer-reviewed studies that show that bisphenol A is linked to breast cancer, to attention deficit disorder, to obesity and a whole host of developmental problems.“

I knew about the studies linking BPA to cancer. I did not know there’s a link between BPA and ADHD. One more thing I need to do a bit more research on.

Filed Under: ADHD, Chemicals
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