In So Many Words

I’m finally getting back to my notes from the National Autism Conference. After the great afternoon spent learning about motor planning, I was more than ready to hear this presentation on physical education the following morning.

The speaker was Garth Tymeson, a Professor of Adapted Physical Education in the Department of Exercise and Sport Science at the University of Wisconsin – Lacrosse. Initially, the session was advertised as being on adapted physical education, but Dr. Tymeson revised it to the broader topic of “Preparing for an Active and Healthy Lifestyle in the Community.”

Following are some of the notes that I took during his presentation:

Collaboration Between Teachers and Parents

The starting point for any physical education program is the goals, and the goals should reflect the functional skills we want to see them using in the community.

In order to create goals that will mean something for the student after they leave school (for the day or for good), there must be collaboration between teachers and parents. Teachers must find out what parents what their kids to be able to do.

So, what do parents was their kids to do? Parental goals for physical education usually include things such as:
- socialization
- learning basic skills
- acquiring functional physical fitness
- finding things that provide success and enjoyment
- having a positive self-concept, reduced anxiety and frustration

More specifically, parents most often want their kids to learn to:
- ride a bike
- swim
- play individual sports
- know the basics for sports of interest
- understand how to use exercise equipment
- BE SAFE

His main point was that the goals should reflect these things. One of the most useful things a student can learn is how to utilize fitness equipment and set goals and routines for themselves related to ongoing physical fitness. That is far more helpful than knowing how to play dodgeball.

Program/Class Challenges

Another important area to look at is what is preventing a child from achieving in physical education and deriving these benefits. Is it related to social communication difficulties? Physical/motor issues? Staff?

Dr. Tymeson strongly recommended that kids with ASD who are in regular PE classes have an assessment done by an adapted PE teacher to determine what physical skills they need to develop. They may need specially designed instruction, possibly in a smaller group, and/or the regular PE teacher may need ongoing consultation on adapting the class for the student.

Sample Assessment Tools
Test of Gross Motor Development 2 (TGMD-2)
Brockport Physical Fitness Test
Fitnessgram
Peabody Developmental Motor Scales 2 (PDMS-2)
Adapted Physical Education Assessment Scale (APEAS II)

He also pointed out that adapted physical education does not have to be all or nothing. A student may be able to participate in the regular class but need an extra session each week to work on specific skills.

I remember during first grade that we would have the physical education teacher let us know what sport or skill was going to be introduced next. Since the school insisted that they were not able to provide any pre-teaching due to the lack of available time and staff, we could at least find books related to that topic at the library and help our son gain some familiarity with what was coming.

Considerations for Students

In the Adapted PE program at the University of Wisconsin, learning management and instructional techniques is considered to be just as important as the rest of the curriculum. The focus is on how to make things predictable and successful for the students, and they are taught to use things such as:
- picture and communication boards
- lanyards with laminated icons in place of the usual whistle
- schedule boards
- visual aids
- social stories
- smart boards and iPads

For kids at home, he strongly recommends getting them up and moving and playing outside as much as possible. The use of active video games, such as the Xbox Kinect or certain games on the Wii (like Outdoor Challenge, Dance Dance Revolution, or Wii Fit), can also be very helpful in motivating kids to engage in physical activity.

During the break, I asked Dr. Tymeson about my son’s biggest challenge, which is competition. He can make anything into a competition, even an individual sport.

His response was to teach my son that there are other ways besides winning to have success are improvement and accomplishment. Practical suggestions might be giving him a pedometer or heart rate monitor and helping him set a target so that he can focus the competitive aspect on himself.

IDEA requirements for Physical Education

Under IDEA, physical education is a required service, not a related service or therapy. A variety of placements should be available and placement should be made based on an assessment of the unique needs of each student.

Dr. Tymeson’s advice is to “Get it on the IEP and KEEP IT THERE.” I would say this is much easier said than done.

I did ask for an assessment by an adapted PE teacher and was told no because the team feels he does not have gross motor issues and that his problems in PE are related to his autism and could be addressed by the autism consultant. This seems to be a reflexive no on the school’s part, especially since he has not had any formal evaluation of his gross motor skills in well over 4 years, but I chose not to pursue it since the teacher he was assigned for PE this year is one who works very well with him and with the rest of the team.

I would be greatly interested in hearing if any of you have had success with convincing your school district to pay attention to this area of your child’s education, especially with regards to accommodations and specially designed instruction.

Recommended Reading

Physical Education (PE) & Adapted Physical Education (APE) on Wrightslaw.com

Adapted Physical Education and Sport – 5th Edition, Edited by J. Winnick

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.

I have alluded to an incident that occurred at my son’s school, but haven’t gone into detail because I have been working on getting it resolved and have just not had the emotional energy to write about it. There have been several outbursts which could have been handled better by the teacher and/or TSS*, but they are both learning more about how to work with Michael as time goes on, and I feel that both of them want this year to be very successful for him.

The thing that is the biggest issue is that the school secretary got involved in one of the situations and ended up carrying him into a room. Because this qualifies as a restraint, it actually has to be reported to the department of education. Also, an IEP meeting is supposed to be held within 10 school days unless I waive the meeting in writing.

The meeting was supposed to be Thursday (Friday was 10 days), but now it has been moved to Tuesday and allotted 15-20 minutes since we are evidently only talking about the restraint by the secretary. I’m going to email them back and say that we will need another meeting to talk about the rest of the issues that have arisen, and also that whatever we decide about how escalated situations arise needs to be added to the IEP in writing. I’m sure they’ll just love me, but I really don’t care anymore about that.

For anyone who is interested in the details, I’m copying the letter I sent to the Special Ed Supervisor after speaking with her the day after the incident. I’ll keep you posted on how it goes.

Thank you for calling on Friday; I appreciated the opportunity to speak with you regarding the incident that occurred at my son’s school on Thursday afternoon and, at your request, am emailing you my understanding of what happened. I am also copying the IEP team to keep everyone in the loop as we move forward.

The note in Michael’s daily communication folder on Thursday mentioned that the secretary had brought him into the music classroom when he didn’t want to go in, but wasn’t clear on exactly what happened, so I went in on Friday morning to discuss the situation with the school.

I have not spoken to everyone involved in this situation, but I did hear about the physical intervention directly from the school secretary, Mrs. X. Evidently Michael had become quite upset during music class when a movement activity was introduced (this is a known trigger for him). Because a quiet space has not yet been identified in that classroom, the TSS took him out in the hallway to calm down, per the “Engine Level” chart we have in his IEP.

For reasons I do not know, Michael went from the hallway to his first grade classroom to “pull a card” (this is related to the school behavior plan; we are currently in the middle of an FBA to develop a Positive Behavior Plan for Michael). While he was there, the teacher talked to him about returning to music. The teacher reported to me that he said, “I would rather die than go back to music.” At some point, she called down to the office for the principal to come and talk to him. He was not available, and eventually Michael agreed to walk back to class with the TSS. Upon arriving at the music classroom, he became upset again and refused to go back in.

Since the principal was not available, the school secretary had come upstairs to assist with the situation and told me that Michael was lying down in front of the door to the music room. She stated that she told him he couldn’t stay there because it wasn’t safe and that he had to go into the music room. I was not told of him being given the option of returning to the quiet space, or any other options. She then picked him up under the arms and carried him into the room.

I understand that she was acting on her best instincts, but I feel this crossed the line both physically and emotionally. I need to feel that my son is safe when he comes to school each day, and it scares me that a situation can get so far out of control on just the fourth day of school and with a seven-year old child who is simply trying to communicate his distress in a way that will be heard by those responsible for him.

We need to respond to his behavior as a form of communication and to follow the plan agreed on in the IEP to handle the situation instead of escalating it by our actions. Then we can go back later to look at what we need to change to avoid his being triggered the next time he is in a similar situation.

I have followed up by phone with the principal, Mr. Y, who has apologized for the incident and assures me that there will be no further involuntary physical intervention with Michael. His case manager, Mrs. Z, and I will also be working with Ms. A, his autism consultant, to address the various other issues at work here with the staff and the IEP.

In speaking with Ms. A, she had said to me that this should be reported to the state as an incident of restraint. Mr. Y [the principal, in case you lost track of my assigned letters] feels that it did not go that far. I am not an expert in this area, and my primary concern is that we all acknowledge the inappropriateness of physically moving him and agree that any intervention of that sort would only take place in the face of actual immediate danger.

Again, I appreciate your time and concern for this situation. I am confident that as a team we can make the necessary adjustments to support Michael appropriately at [this school].

Any advice on how to keep my emotions on an even keel when they are changing daily (sometimes hourly) as I try to figure out how to deal with all the different issues this year has brought up so far is welcomed. It’s hard to really get my thoughts together because I get so upset when I start thinking about it all.

*TSS stands for Therapeutic Support Staff, and this is a person who provides behavioral support. They are not employed by school but are funded through Medical Assistance and directed by a Behavioral Specialist Consultant. The BSC does go to the school and will also be helping with this situation, but I didn’t mention her specifically in the letter.

If you, like me, are already thinking ahead to back to school time and making the transition as smooth as possible, take a look at today’s Try This Tuesday.

Amazing Grace from Moms of Special Needs Children is sharing a student orientation checklist that you can include with your child’s IEP so that everyone on the team knows what is required of them to support your child right from the start.

What are your best tips for a good transition into the summer and then back into school again in the fall?

The last couple of weeks I have been sharing about some of the ideas that came out of our recent team meeting at Michael’s school for Try This Tuesday:

• TTT#16: Micro Schedules
• TTT#17: Brainstorming

I am still hoping to expand this column to include more of our readers’ ideas and even their challenges that they need some ideas for. For anyone who may be interested in sharing something they found to be helpful with their child who has special needs, or who has an issue they are needing some input on, please get in touch with me at trish[at]anotherpieceofthepuzzle[dot]com or through my contact form.

If you are sharing an idea, I would like for you to write the post, but if you are asking for help, you could either write it yourself or I could just share the details, with or without identifying who you are.

I would also like to say to my regular readers that I know I have still been largely out of touch and I apologize. I even wrote out a post about how stressed I am while sitting in the waiting room at the psychologist’s office today but didn’t get time to type it up due to all the other things I had to take care of today. Plus it sounded really whiny, even to me!

I have no intention of disappearing but ask for grace as I deal with some of the stuff I am dealing with right now. Your kind thoughts and prayers mean more than you can know.

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!

Note: The first two texts deal specifically with special education law and the IEP process in the United States. The third book is more general in nature.

Have you ever read the Individuals with Disabilities Education Act? It starts out with the following statement of the findings of Congress (emphasis mine):

Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving education results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities. 20 U.S.C. § 1400 (c)(1)

Whether you feel that your child’s school is working towards these results or not, it is wise to educate yourself about the system and the laws governing it so that you can be an effective advocate and member of the IEP team.

In The Complete IEP Guide: How to Advocate for Your Special Ed Child, Attorney Lawrence M. Siegel covers the rights and procedures under IDEA (Individuals for Disabilities Education Act) for children between the ages of 3 and 22. He gives information and advice regarding the entire IEP process, from getting organized and understanding the evaluations to writing goals and even resolving disputes. I have found this book to be well-organized and very helpful.

Wrightslaw: Special Education Law by Peter W.D. Wright, Esq. and Pamela Darr Wright, MA, MSW includes the text of the key laws & regulations governing special education, including IDEA, Section 504, and NCLB (No Child Left Behind), as well as US Supreme Court decisions involving this area. The Wrights offer trainings on this subject, which I highly recommend. If you cannot go to one in person, they also have a massive Wrightslaw website with tons of resources, including some online trainings.

Another book from Pete and Pam Wright is Wrightslaw: From Emotions to Advocacy, which they tag as “The Special Education Survival Guide.” The goal of this book is to assist parents in moving beyond simply being overwhelmed and becoming effective advocates for their children’s education. One really nice feature is a selection of sample letters, which cover a variety of situations that may arise over the course of the IEP process.

I’m sure there are other resources available in this area. If you have others that have been especially helpful, I would love for you to share them with me.