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
- Psychological assessment most likely administered (given) by the school psychologist (in our case it was:
- KSEALS Kaufman Survey of Early Academic and Language Skills
- Behavior Assessment System for Children
- Teacher Form, Parent Form
- Teacher Interview
- Observation)
- Speech and Language Evaluation administered by a Speech and Language Pathologist (in our case that included:
- Preschool Language Scale
- Informal evaluation and parent interview)
- Physical Therapy Evaluation administered by a Physical Therapist (PT) (in our case that included:
- Peabody Development Gross Motor Scales
- Clinical Observation
- School Performance Checklist
- Occupational Therapy Evaluation given by an Occupational Therapist (OT) (in our case that included:
- Teacher / Parent Interview and Checklists
- Informal Evaluation
- Sensory Profile
- Peabody Developmental Motor Scales)
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.