In So Many Words

Excerpt reprinted with permission from a featured article in the May/June 2011 issue of Autism Asperger’s Digest magazine. Learn more at www.AutismDigest.com.

When parents participate in an IEP meeting, they’re often given a document called Procedural Safeguards. It may seem like such a small part of the sometimes overwhelming mounds of IEP paperwork that you might be tempted to ignore it. But don’t. Tucked within the Procedural Safeguards is an important tool called Prior Written Notice.

What is Prior Written Notice?
Prior Written Notice, or PWN, is a written record of certain decisions made by the school that impact your child’s education. Whenever the school changes your child’s special education program, or refuses a parent’s request to provide services, PWN (or PWNR – Prior Written Notice of Refusal) must be sent to the parents.

The federal law states Prior Written Notices must be sent before the school initiates any changes, or within a reasonable amount of time if a request is denied. The actual amount of time allowed differs according to each state’s law, and should be stated within the Procedural Safeguards.

Why is PWN Important?
For starters, it allows parents to be better involved in their child’s education by providing detailed information about school decisions. Since it’s in writing, it creates a record – a paper trail – of decisions made that can be used in a legal proceeding if parents decide to pursue a due process hearing. Finally, PWN discourages decisions made subjectively, too quickly, or those made with prejudice.

What’s Contained in PWN?
Here’s a scenario: your child is in his first year of middle school and his social skills challenges are interfering severely in his ability to interact appropriately in class and with his peers. You call an IEP meeting to discuss the possibility of the school incorporating regular social skills training into his program. By the end of the meeting the school denies your request.

The PWN should include all the following pieces of information about what the school is either proposing – or in this case, refusing – to do. Read these seven PWN criteria carefully; they are powerful tools IDEA set up to make schools accountable for their decisions:

• Description of the action proposed or refused by the school.
• Explanation of why the school wants to initiate action or why they refuse the request.
• Statement about what other options were considered, including all ideas contributed by IEP team members, including parents, and why they were rejected.
• List and description of all evaluations, tests, records, or reports the school used to make their decision. (Decisions must be based on data and assessments, not on money, lack of staff, or subjective comments on the child’s perceived ability.)
• Description of all other factors that were relevant to the school’s proposal or refusal.
• Notice to the parents that procedural safeguards are available and how to get them.
• Statement about whom the parents may contact to get help in understanding their rights under IDEA.

Can Parents Request PWN?
Parents most definitely can – and should – request PWN if 1) you learn the school has made changes in your child’s services or special education program without first sending PWN; or 2) anyone from the school informed you of changes being made in your child’s program either in person, at a meeting, or over the phone.

Be sure you make your own request in writing. Remember the experienced words of Pete Wright from www.WrightsLaw.com, “If it was not written down, it was not said. If it was not written down, it did not happen.” This is why it’s so important to be sure you receive PWN, and to put any requests you make – whether for PWN or services – in writing.

The National Dissemination Center for Children with Disabilities (NICHCY) offers a publication at www.nichcy.org called “Communicating with Your Child’s School Through Letter Writing.” This informative document shows a sample letter you may copy for requesting PWN.

PWN Tips
In How to Use a Parent IEP Attachment (WrightsLaw.com), Judy Bonnell recommends creating a simple form to help you keep track of all requests and changes addressed by the IEP team. Bonnell’s form includes columns for proposal, accepted, rejected, reason accepted or rejected, start date, and responsible person. You’ll also find a printable “Record of Proposals” at www.SpecialNeedsAdvocate.com/proposal_record.htm.

PWN as a Proactive Tool
Under IDEA law, the IEP team must formally consider – and accept or reject – any suggestions made by a team member. This means that parents may present their proposals and they have the right, not only to a formal discussion of the proposal, but also an explanation from team members about its merits, shortcomings, and other options. Most importantly, these discussions and decisions fall under PWN requirements. Either take a PWN form with you to the meeting and fill it out as the discussion unfolds, or follow-up with a written request for PWN afterwards. Make PWN an ally as you advocate for an appropriate education for your child.

Find more practical, proactive articles like this one in every issue of the Autism Asperger’s Digest. Six issues per year, just $29.95. Learn more at www.AutismDigest.com.

Copyright © 2011 Autism Asperger’s Digest. All Rights Reserved.

Last night, I had the immense honor of sitting in the audience at a local school board meeting (not my own district) while a young man who is a junior in one of their high schools addressed the board regarding the lack of accommodations being provided so that he can be a successful learner and meet his goal of being an independently employed individual after high school.

I have tears in my eyes just writing that sentence.

Mike Chabanik is one of my heroes. He is an extremely bright young man who is also legally blind, has Asperger’s and other health issues. Although he is an honor roll student, he has been on homebound instruction since Thanksgiving after his doctor recommended that he not return to school until the proper accommodations were provided for him.

Here is what Mike is asking for:

• Text-to-speech software and instruction on how to use it
• A computer with a larger screen
• Texts provided in audio format
• Class lectures, including discussion, to be taped for him

It was so amazing to see how composed he was during his speech and to hear how clearly he articulated what he needs and why he needs it. And he got a standing ovation from the many people who turned out in support of him from his district and beyond.

I have embedded the video from one of our local news stations about it. I don’t know if the clips and stories rotate or how long this video will be available, but it came from the CBS21 website:

I took my son Michael with me and explained that we were going to show our support for Mike. He was very upset that the school was not giving him what he needed and was extremely well-behaved during the meeting, for which I was very thankful.

This morning, we had a two-hour school delay due to snow, and Michael was upset about something that he was afraid would not happen because of the shortened day. I asked him if he wanted me to email his teacher about it and he did. As I opened up a new email window, I realized that it’s never to early to start teaching the kind of self-advocacy Mike’s mom had taught him, so I had Michael dictate what he wanted to ask his teacher and then sent the email from him.

I think it was a good start, and I can only hope that one day my own son will be as confidently able to express his needs and goals as clearly as Mike did last night.

Sunday Best is a collection of my favorite links from blogs I have read in the past week (or sometimes a bit more if I get behind!) Posts may range from thought-provoking or challenging to instructive or informational, with a dose of fun and light-heartedness thrown in occasionally for good measure.

Advocating 101: How to Write a Letter – Caitlin at Welcome to Normal shares some amazing tips on how to write an effective letter. As she says, “A masterfully crafted letter can be an incredibly powerful weapon in an advocate’s arsenal.” This post is a must read for anyone who wants to improve their advocacy skills.

Helping Teachers to Understand Your Aspergers Child at My Aspergers Child – This post addresses the question of what to do when your child has received a diagnosis but the school is still reluctant to provide an Evaluation/IEP/Special Education. It includes a template and an example letter that you can modify to officially request help from the school. This is a perfect follow-up to the first post I listed.
(This site was not coming up for a few days. If for some reason you can’t get to the link, I do have the article in my email and can forward it to anyone who would like it.)

Another great tool for advocates is this PDF entitled Anatomy of a Behavior Plan put together by Community Health Connections. The document walks you through the process of assessing behavior and putting together a plan.

I realize these are a bit heavy on the advocacy side today. I’ve got IEPs on the brain as we have a team meeting tomorrow to discuss a number of issues regarding implementation of the existing IEP, as well as possible modifications and additions to it. All positive thoughts and prayers are appreciated!

Please feel free to share your favorites from the week in the comments – I’ll be sure to check them out!

Sorry I haven’t written much this week. I have been preoccupied with a few things, including a major car repair that I need to get scheduled and a letter I need to write to Michael’s IEP case manager with several concerns regarding implementation of the existing items and discussion of some new ones.

I know what I want to say but I am stuck on how to say it in the best way to get results. Unfortunately, that can sometimes lead to procrastination, which in turn affects all the other things I need to get done as well. Quite the vicious circle!

It’s posts like these that give me the strength to gird my loins again and write the first draft of the letter.

The Inclusion Dance by Susan Etlinger

It’s official: I’m a bitch. By which I mean I’ve moved past that initial flush of optimism and teamwork and wanting everyone to feel good about themselves to disappointment, confrontation, detente, anger and now — inevitably — relentlessness.

F-Word Series: Fortitude by Mom-Blog

Your mental and emotional strength lies in your ability to STAY there, after your fit or break down, or Dove-choco-fest. To push away the bad thoughts and take your kids to the park or the beach or the birthday party or bowling. To, even a for a moment, damn the despair and find gratitude for this family of yours.

I’ve read a lot more great posts over the last couple of weeks, but frankly I am so tired (I’ve also been giving rides to someone, which has cut into my schedule as well) that I’m just going to share these two today.

Title: Building Sensory Friendly Classrooms to Support Children with Challenging Behaviors
Author: Rebecca Moyes
Length: 102 pages
Genre: Nonfiction
Publisher/Date: Sensory World/Future Horizons, 2010
Source: Review copy

Over the last few years, I have read a number of books about sensory processing disorder (SPD) . . . books that explain in detail about subtypes of the disorder, books that give practical advice about implementing a sensory diet and dealing with the issues that arise when there is dysfunction and books that share a personal story about someone’s experience with SPD. I have learned a tremendous amount from these books and have even shared some of them previously on this blog.

But what I especially love about Building Sensory Friendly Classrooms is that it looks at the needs of children with SPD and addresses them in the context of the school environment. Even more specifically, it is focused on how SPD can result in behaviors that interfere with a student’s learning or the learning of others, words that will be familiar to anyone who advocates for children in special education.

Building Sensory Friendly Classrooms was written primarily to help teachers and administrators both understand sensory dysfunction and also implement helpful strategies for affected students. The book not only builds the case for incorporating treatments and accommodations for SPD in the school environment; it also gives a clear road map for how to identify and implement those strategies. Best of all, it promotes the use of data collection and analysis to guide the decision-making process.

Throughout the book, Rebecca Moyes (who is a former teacher and current autism consultant, as well as the parent of a child on the spectrum) emphasizes how a sensory diet and other accommodations can be approached within the framework of IDEA.

• For example, a child with a diagnosis of SPD could be found eligible for special education under the category of Other Health Impaired (OHI). From there, an IEP or 504 could be written to include the accommodations and support that is needed.
• Also, a functional behavior assessment (FBA) can be used to examine the cause of the problem behavior in a child with SPD. The information gathered by the FBA, which uses both data collection and anecdotal information to form a picture of what is going on, would then be used to create an intervention plan for the student.

In addition to the discussions of what SPD is and how to use data to make decisions about addressing it, there are also chapters on:

• Strategies to address SPD
• Creating a sensory room within your school or classroom
• Self-stimulatory behavior and self-abusive behavior – the connection to SPD
• Teaching stress management and self-advocacy through behavioral cognitive therapy

The last two chapters of the book give sample language for use in IEPs and 504 plans, as well as an example of a behavior support plan that was written for a student with SPD.

Building Sensory Friendly Classrooms is a tremendous resource for the educational community. In addition to teachers and administrators in both regular and special education, I would recommend this book to parents of children with sensory processing disorder (either by itself or with another disorder such as autism), as well as to those advocating for these children.

This is a day late because I didn’t get online until late yesterday and ran out of time, but I have a number of links I wanted to pass on.

Floortime

What is Floortime? – K over at Floortime Lite Mama put together a great post with the basic concepts of Floortime. In it, she talks about the concepts it is based on as well as how it looks in practice.

If you’re interested in more information, she also wrote about the difference between classic Floortime and using Floortime as a lifestyle in Portrait of a Floortime Evening and shared her heart about being mom vs. therapist over at Hopeful Parents.

Life Lessons

Autism: The Teacher at Puzzled – This is a thoughtful essay about the lessons we can learn from raising an autistic child. As she puts it, just like a non-elective class in college, we didn’t choose this path but can choose to learn from it.

Sensory Processing Disorder

I have been thinking a lot more about this topic recently, especially as I am reading a couple of books about SPD to review for this blog. The Gift Blog just published An Interview with Dr. Lucy Jane Miller, one of the foremost researchers in this area at the current time and one of the people working very hard to get SPD accepted into the Diagnostic and Statistical Manual (DSM).

On Advocacy

Advocacy Power – More Parents Leading the Way – If you are looking for some guidance on advocating for your child, this is a great place to start.

For those of us already in the trenches, An Open Letter to Special Needs Professionals really speaks for how I am feeling much of the time when dealing with many doctors, educators and other people in Michael’s life.

On a more practical note, this article on 5 Tips to Help Autistic Students with Transitions is concise and clearly written for teachers and other professionals who may not have a solid understanding of autism. In fact, I already passed it on to Michael’s autism consultant to share with the team.

I hope you find some encouragement and new ideas in one or more of these posts. Please let me know if there’s a particular topic you want to hear more about and I will do my best to find information on it.

I have been reading so many great posts by bloggers lately, and whenever I see something that really speaks to me in some way, I feel an urge to share it. Rather than flood Twitter or Facebook with links that may or may not be seen by anyone, I decided to list a few of them here.

So here are some things that caught my eye in the past week:

On Advocacy – a subject that is near and dear to my heart:
What Is Advocacy? An Inside Scoop From Pathfinders For Autism from The Gift: A Blog for Caregivers of Sensational Children

An Amazing Moment When a Kid is Just a Kid
The Power of You and I from Welcome to Normal, Population 0

Insights Regarding the Division Between Biomed Moms and Neurodiversity
Desperate, huh? and Bridging the Gulf from Life as the mother of 4

Practical Tips
Simple Accommodations to Help Your Autistic Employee Excel from Spectrum Siblings

Autism Treatment – How to Use Supplements to Treat Autism, Part 1 and Part 2 from Dr. Kurt Woeller’s Autism Recovery Treatment Blog

And on a separate, somewhat superficial note, did you know that you can now put a Facebook “Like” button on your web site? It allows you to see how your Facebook friends are interacting with sites around the web. I put one on Another Piece of the Puzzle just for kicks, so feel free to pop over and “like” me (and let me know if you add one to your site)!

I met a new blogger this week. I mean, I met a blogger I haven’t known before now; she’s not really a “new” blogger. She actually popped over from the Mom Blog Network, which just goes to show you it was worth signing up with all the social media sites I have over the last year and a half.

Anyway, Shawnda’s blog is called Asperger’s Syndrome Awareness, and she is also writing a book about her experiences raising her son, who is 13 and has a diagnosis of Asperger’s. Pretty cool!

I was reading some of her posts and was intrigued by her thoughts on Least Restrictive Environment and whether the way it’s put into practice is really the best thing for some of our kids. I’d love to hear your thoughts on what she has to say about it. Do you think, like Shawnda does, that it’s often really code for spending the least money possible?

How confident do you feel going into a meeting to write an Individualized Education Program (IEP)?

Today over at 5 Minutes for Special Needs, I am sharing some resources for learning more about the special education process and how you can advocate for your child.  Please stop by and leave a comment with your favorite books or websites on the topic.

Related Posts on Advocacy/IEPs:

• Autism Resources: IEPs and Advocacy
• IEP Goals and Related Services
• IEP Modifications and SDIs

Happy Friday, everyone!

Well, so far I have had just one vote for a topic in the new Skribit widget I installed, and that was on the Little Guy’s transition from preschool to kindergarten [insert plea here for readers to suggest topics and/or vote on topics in the list].

I am ashamed to say the process hasn’t gotten much farther since my last post about it. After a couple of unanswered emails from the school psychologist, I called her and was told that she hadn’t gotten either of them and that they must have gone into the district’s spam filter. So I told her what I was looking for in regards to classroom visits, a team meeting prior to the IEP meeting, and the involvement of the autism consultant.

On the phone, she seemed unsure of what she could commit to on any of these items, but thankfully she called me back the next day with answers on all of them. So, here’s the current plan:

1. Visit both kindergarten and first grade classrooms this Thursday afternoon, with a chance to talk to each teacher and also to sit down for a few minutes with the psychologist and principal.
2. Meet with the team on the following Thursday to discuss the ER (Evaluation Report) and IEP (Individual Education Plan). Yes, this is only one meeting, but it is early enough that we could meet again and I do not plan to sign the NOREP (Notice of Recommended Educational Placement) at the meeting.
3. Autism consultant will be in attendance to provide “input into the IEP” – and I can make my case for her inclusion on the actual document. (Wow, we are now looking at between 8-10 people attending this meeting!)

I had a follow-up call yesterday with the supervisor of elementary special education for our school district today, and we discussed some of my concerns regarding the grade placement. Her advice is to take the long view approach and consider the Little Guy as a sixteen-year old who wants to play sports and go to dances and learn to drive; then ask myself if another year now might be of help to him later. She was very helpful and had some good suggestions for a couple of other concerns and issues I brought up as well.

So now I need to know what to ask the teachers/principal about grade placement – any thoughts?