Educational Advocacy Series: Part Four

CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series in October dealing with Educational Advocacy. This post is Part Four in our October Series. Please also check out Part One, Part Two, and Part Three.

Paula, Bob, Aaron and Scott on a
Celebration Cruise for Scott's Graduation

THE ALL-IMPORTANT PARENT REPORT

While working numerous years as an InSource Regional Program Specialist, Sycamore Services Transition Coordinator, and Evansville Vanderburgh School Corporation (EVSC) Special Education Department Coordinator of Parent Supports, and later--EVSC Family Engagement Coordinator at the alternative school, my focus was on helping parents to become A) informed and B) equal participants in their child’s educational process.  A previous entry discussed informed. This one focuses on equal. One of the best recommendations I ever received or gave was to write and present a Parent Report. This suggestion came in 1994 from fellow a Hoosier advocate, Pat Howey (www.pathowey.com), as Bob and I were preparing for our son, Scott, to be have his placement changed from a segregated classroom for students with multiple disabilities to a general education setting at our neighborhood school. After Pat noted that everyone except the parent typically presents a report at case conferences, we were convinced to prepare our own Parent Report.

With Pat’s guidance and the help of a dear friend who was also writing parent reports for her children, Bob and I wrote our first Parent Report for that very important case conference which included 19 people and lasted 11 hours over 2 days. We continued to prepare and present a Parent Report at all of Scott’s conferences. At my encouragement, numerous parents have prepared a Parent Report for their own child. The time needed to prepare the first report can seem daunting. Future years’ Parent Reports will be much easier as the initial report can simply be updated. The report will serve as a history of your child’s progress. The presentation of a Parent Report will also aid in developing clear, measurable, and observable Individualized Educational Plan (IEP) Goals and objectives based on your child’s strengths and challenges.

Scott Performing in Godspell in 2002

Parent Report

Why? How do you prepare? What is included?

Parents are important:

• Parents are generally the only permanency throughout a child’s entire life
• Schools only provide services until a student is 22

School Personnel Should Value a Parent Report:

• Parents provide a wealth of information
• Parents know more about their child than anyone else
• Parents know the child’s abilities in a variety of settings, not just school
• Parents were the child’s first teacher
• Parents are more efficient in conferences if a report is prepared
• Parents and school can better focus on the child’s needs
• Parents take an active role in their child’s education

What is a Parent Report?

• It expresses the parents’ knowledge, understanding, concerns, hopes, dreams, and intents for the child’s future
• It is direct and to the point
• It gives school personnel a document with information they would not easily have otherwise
• It is always written. Then, you should verbally present it at the case conference committee meeting along with school personnel who present their reports. Written copies should be handed out and included in the committee report. NOTE: It can be productive to provide the report to the conference coordinator for distribution in advance of the conference.

Prepare for the Parent Report (NOTE: This section relies heavily on good record keeping—the topic of my next blog entry)

• Gather notes from previous meetings
• Gather your child’s previous IEPs
• Gather reports from service providers
• Gather report cards, school reports, evaluations & assessments, and test scores
• Gather medical information (diagnosis, vision, hearing, speech, mobility, diet, therapies, genetic testing, diseases, allergies, heat intolerance, personal care)
• Gather information about your child’s activities other than school (Scouts, church, youth leagues, etc.)
• Think about your and your child’s hopes and dreams for school and beyond

What are Your Child’s Present Levels of Performance in Every Area of Their Life?

• Home
• Community
• Leisure and recreation
• Academics
• Daily living activities
• Verbal and written communication skills
• Fine and gross motor skills
• Social and emotional levels

What are Your Child’s Strengths?

• Academic
• Social/emotional
• Verbal and written communication abilities
• Athletic abilities
• Likes/dislikes
• Personality
• Leisure/recreational
• Fine/gross motor skills
• Daily living skills
• Unique skills

What are Your Child’s Challenges?

• Academic
• Social/emotional
• Verbal and written communication abilities
• Athletic abilities
• Likes/dislikes
• Personality
• Leisure/recreational
• Fine/gross motor skills
• Daily living skills
• Unique skills

What Supports Are Needed to Help Your Child Overcome Challenges (to “level the playing field” for the disability)? Including your thoughts about supports in your Parent Report will let school personnel know of your expectations.

 §Modifications/Adaptations (adjustment to an assignment or a test that changes the standard or what the test or assignment is supposed to measure)

      Modifications/Adaptations examples:

§  Manipulatives

§  Alternatives such as posters instead of written reports

§  Assignments that are “chunked”

§  Assignments that are shortened

§  Use of a computer

§  Use of a calculator

§  Voice activated or touch software

§  Braille instruction

§  Enlarged type

§  Textbooks on tape

§  Adaptive or adapted physical education

 § Accommodations (allows a student to complete the same assignment or test as other students, but with a change in the timing, formatting, setting, scheduling, response and/or presentation without significantly altering what the test or assignment measures)

Accommodations examples:

§  Written or oral instructions

§  Study sheets

§  Note taker or scribe

§  Text books that are highlighted

§  Textbooks on tape

§  Frequent breaks

§  Dictate answers

§  Extended time for assignments

§  Extended time for testing

§  Oral testing

§  No timed tests

• Assistive Technology

Assistive technology examples:

§  Writing instruments

§  Communication boards

§  Communication devices

§  Computers

§  Word processors

• Related Services

Related Services examples:

§  Therapies (OT, PT, Speech, Music, etc.)

§  Paraprofessional/Aide (part time or full time)

§  Transportation (special equipment, ramps, short route)

§  Transition services (vocational, aptitude, and ability assessments)

§  Counseling (for the student, other students, or parents)

§  Administration of medicines

Scott & Paula at Scott's HS Prom.
(Mom was a chaperon!)

There will be one final post in the series, so please check back next week. 
--Paula

Grateful Sunday

Quote from Thomas S. Munson

Thoughtful Thursday: My Mantras

“Meditation is the ultimate mobile device; you can use it anywhere, anytime, unobtrusively.” 
-Sharon Salzberg

I am guilty of a bad habit: a lot of negative self-talking. My younger self tried diligently to manage every possible outcome of a situation before it happened. I was constantly afraid that my friends would be embarrassed by me, my coworkers/boss would be disappointed with me, or I would just look stupid when I attempted ... anything really, from taking a turn bowling to asking a cute guy to share his class notes.  

To get over these anxieties and negative thought patterns, I've read a lot about meditation and “Being present in the moment.” Being present helps me perform better in meetings and interviews, it allows me to stick to my principles in difficult situations, and it calms my mind when life gets overwhelming.

However, meditation is definitely something one must learn and practice. I’m still a novice, but I have claimed a few mantras that help me return to the present when I find myself languishing in the past or nail-biting the future.

Erica’s Top Four Mantras

1. Time Will Pass. I have several iterations of this mantra, but I have found this phrase to be comforting whenever I'm "stuck" in a situation. I particularly like to use this mantra when I'm feeling regretful or embarrassed. I get in plank position (also great for core strength!) and repeat "time will pass." Taking even 3 minutes to slow down and focus reminds me that every situation is temporary and meditating prevents me from putting a negative thought reel on replay.
2. Feelings are just feelings. I had a great counselor once share this with me: she said, “So what if you feel crappy? It’s just a feeling. Feel it, acknowledge it, but realize this feeling is an emotion, made up of chemical responses and thought patterns.” What you decide to do in a situation should not be based on a feeling, because feelings come and go. When I have a feeling that is overwhelming and halting my progress, I sit in dignity* and repeat “Feelings are just feelings.” Pretty soon, I don’t feel the same – I feel calmer, slightly more in control, and even a little hopeful. (Remember I said this took a year to practice? Just trust the process and keep trying.)
3. Abide with me. This mantra is actually a hymn my Mom used to sing to me when I had to wear a dental device that required nightly tightening. It hurt quite badly and I would be very upset when it was time for the crank. My mom would have me lay on my bed and close my eyes. She would softly sing the song and rub my hand. I still remember the peace that came over me in those moments. Now, when I am in intense pain that can't be avoided, I lay out flat or in child’s pose, and I repeat the mantra in my head. I love the word abide when dealing with pain. With pain, you can't just will it away; you are forced to abide in it. This song reminds me of the people who are with me in spirit: from my family all the way to my ancestors who never had the luxury of medication, climate-controlled bedrooms, and a post-surgery Coca-Cola.
4. Show Up, Be Tough. I feel a twinge of guilt admitting this, knowing what my CCA little brothers and sisters go through on a daily basis, yet it's true: I freak out a little when I have to get an IV. Once the blasted needle is in and taped up, I'm fine, but right before or during the sticking part I sometimes usually faint. Oy. Last week I had to have an IV, so I decided to try my meditation skills to prevent myself from fainting. I chose "Show up, be tough," because showing up means being in the moment. I didn't want to let my brain check out and faint as a defense mechanism -- I wanted to be in my body and acknowledge the care being given. Be tough means just that and I channeled my younger CCA sibs and their natural-born toughness to get through it. I also played a couple of calming songs on my iPhone and my nurse shared that she does this too during dental procedures. Full disclosure, when she flushed the IV, I did almost faint (ick, that taste and smell) but through meditation I stayed present and avoided passing out. I consider this a huge success and you are free to chuckle at my wimpiness. :) 

So, those are a few mantras that work for me. Think about ones that may work in your life and here's another blog post about mantras with even more suggestions. I encourage you to begin incorporating meditation into your wellness care. I can honestly say I knew about the benefits of meditation before I started practicing, but after just a year of practice I have found that meditation is a wonderful tool for medical patients.

Namaste, y’all. 

--Erica

*Sitting in dignity is a pose where you sit in a chair with your feet flat on the floor, back straight with shoulders relaxed, with your hands flat on your lap. Your eyes should be closed, but you should look straight ahead. Try to feel your muscles relaxing all the way from your head to your feet, as you breathe in compassion and breathe out fear, anxiety, and negativity. 

Educational Advocacy Series: Part Three

CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series in October dealing with Educational Advocacy. This post is Part Three in our October Series. 
Please also check out Part One and Part Two.

Parent Participation in the Special Education Process

Paula, Scott, Aaron and President Clinton at the signing
of IDEA on June 4, 1997. Scott played "For He's A Jolly
Good Fellow" on his Liberator communication device
for the President Clinton.

Bob and I felt that we had to learn special education acronyms, procedures, and laws to adequately advocate for Scott. We recommend that strategy for all parents of children who receive special education services. Once you are informed, you will be more confident when you are preparing for and attending case conference meetings. You will most likely know more about the laws than some of the school employees in attendance. Special education department administrators typically know and understand the laws and appreciate when parents do also.

This entry has two parts. If you don’t care to read about Special Education Process Rights, skip them and go to Suggestions for a Smoother Case Conference Committee Meeting.

Special Education Process Rights

The Individuals with Disability Education Act (IDEA) gives parents and their children with a disability the following rights for participation in the educational process:

• A Free Appropriate Public Education for Your Child. Free means at no cost to you. Appropriate means meeting your child’s unique educational needs.
• Have your child educated in the least restrictive environment possible. Every effort should be made to develop an educational program that provides your child with the services and supports needed in order to be taught alongside children who do not have disabilities.  Start with the position that your child belongs in ‘regular’ classes, and only allow special “pull-out” classes if the school and you agree to it.
• Request an evaluation at any time you think your child needs special education services or related services. The request should be written and dated. Keep a copy for your records. Give it to one of the following school employees: teachers, school counselors, school psychologists, school social workers, building principals or other administrators.
• Be notified in the language you normally use whenever the school wants to: 1. Evaluate your child, 2. Change your child's educational placement, or 3. Refuse your request for an evaluation or a change in placement.
• Informed Consent. Informed consent means you understand and agree in writing to the evaluation and educational program decisions for your child. Your consent is voluntary and may be withdrawn at any time.
• Obtain an independent evaluation if you disagree with the school's evaluation.
• Request a reevaluation if you think your child's present educational placement is no longer appropriate.
• Have your child tested in the language they know best.
• Review all of your child's school records. Give school personnel a dated, written request. Keep a copy for your records. You may also request copies of any part of the records, but the school might charge you a reasonable fee for the copies.
• Request that information in your child’s records be changed if you feel that it is inaccurate, misleading or violates the privacy or other rights of your child.  Give the dated, written request to school personnel. Keep a copy for your records.
• Request a hearing if the school refuses your request to change or remove the questionable information in your child's records. If you’d rather, you may file a complaint with your state’s Division of Special Education.
• Be fully informed by the school of all rights that are provided to you under the law.  Ask school personnel to tell you of your rights.
• Participate in the development of your child's individualized education program (IEP), or individualized family service plan (IFSP) if in preschool. The school must make every possible effort to notify you of the IEP or IFSP meeting and then arrange it at a time and place that is convenient for you and school personnel.
• Participate in all IEP or IFSP team decisions, including placement.
• Request an IEP or IFSP meeting at any time during the school year.  It is advisable for you to make this request in writing and keep a copy for your records.
• Be kept informed about your child's progress at least as often as parents of children who do not have disabilities.
• File a complaint with your state’s Division of Special Education if the school has violated federal or state laws that apply to special education programs.
• Voluntary mediation or a due process hearing to resolve differences with the school that cannot be resolved through case conference committee meetings. Put your request in writing, date it, and keep a copy.

Suggestions for a Smoother

Case Conference Committee Meeting

• Ask for all anticipated proposals or changes to be shared with you before the conference. You don’t want surprises in the conference clouding your thinking. Receiving the information at least 3 days in advance is recommended.

• Ask for your child’s progress-to-date information and goal achievements to be provided in advance (at least 3 days in advance is recommended). Reviewing this information before the conference will help it go faster. It also gives you the opportunity to get your questions / comments ready.

• Ask for all test results to be shared and explained in advance (at least 3 days before the conference). This will help the conference go faster. You don’t want surprises in the conference. This will give you the opportunity to gather facts and be better prepared for decision making in the conference.

• Prepare a Parent Report about your child to present at the conference. My next blog entry will be devoted to preparing the Parent Report. Give a copy to the conference coordinator for distribution to conference participants in advance of the conference. Since you’re asking for all school personnel’s reports in advance, give them the same courtesy.

• Go into the conference knowing that you are an equal partner with school personnel. Share in decision-making. Remember that everyone in the conference is supposed to be on the same side—that of the child!

• Before the conference, give school personnel a written list of topics you want to discuss so they can be put on the agenda.

• If you have obtained an independent educational evaluation on your child, share the results with school personnel in advance.

• Invite a friend, family member or advocate who is knowledgeable about your child to attend the conference with you.

• At the beginning of the conference, ask how much time has been set aside for it.

• If you have concerns during the conference, state them. Expect school personnel to take them seriously.

• Ask questions about anything you don’t understand. You will be respected for speaking up.

• Take notes. This will help you stay focused on what’s being said. They will come in handy when the written IEP is received.

• If you like something, express your appreciation.

• Do not sign the written IEP until it is completed and you’ve had the opportunity to read through it, compare it to your notes, and ensure that it accurately contains all information that you expected it to contain based on decisions made at the conference.

Resources: For training opportunities, contact the Parent Training and Information Center in your state.  This link to the Wrightslaw Directory of Parent Training and Information Centers (PTI) and Community Parent Resource Centers (CPRC) has a listing by state. http://www.yellowpagesforkids.com/help/ptis.htm

Stay tuned for Paula's next post!

Wrightslaw (www.wrightslaw.com) provides accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

 --Paula

Media Monday: Owen & Nathan Anderson

Three-year-old Nathan Anderson is living with a craniofacial disorder and his story has inspired his 7-year-old brother, Owen, to raise thousands of dollars.


TRENTON, Mich.

Three-year-old Nathan Anderson is living with Craniofacial disorder and his story has inspired his 7-year-old brother to raise thousands of dollars.

Nathan was born with Treacher Collins syndrome. His father, Dave Anderson, explains how that has resulted in his Craniofacial disorder and hearing loss.

"The bones in the face don't grow as fast as other bones, so his jaw was really small, he had to have a surgery on that when he was 11 days old. He will continue to have to have surgeries on his jaw because the bones will not grow," said Dave.

In Nathan's short life he already has undergone seven surgeries. His adversity has inspired his big brother Owen.

"We saw this video about this older brother who helped his brother finish bike races, so I wanted to do something, too. And this is what I ended up doing," said Owen.

Owen personally called Stevi B's -- his favorite restaurant -- to coordinate a fundraiser. He also called the school superintendent to get permission to pass out flyers. Between online donations and the restaurant fundraiser, Owen has raised more than $5,000 for the Children's Craniofacial Association. It's an impressing feat for a 7-year-old boy.

"Sometimes they'll whisper to their mom and dads, and sometimes they will point at him," said Owen.

"As parents we understand that 5-year-olds and 6-year-olds aren't going to ask in the most kind way, but the questions are so important because from that brings awareness," said Dave.

Owen is making great strides at raising awareness and funds in honor of his baby brother, who is very thankful.

"Thanks Owen!" said Nathan.

If you are interested in donating to the Children's Craniofacial Association, click here.

Original Story can be found on Click On Detroit and Fox 17 West Michigan.

Grateful Sunday

from here

Educational Advocacy Series: Part Two

CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series in October dealing with Educational Advocacy. This post is Part Two in our October Series. You can read Part One here.

Scott’s Journey, Part Two: "Get it in Writing!"

In response to comments to last week’s entry about Scott’s first five school years: Scott’s placement in a segregated setting is what was considered “best practice” at that time. It’s refreshing to hear that people are surprised. We hope that the educational best practice of inclusion is now taken for granted.

Moving to the second part of Scott’s Journey. . .Scott was bussed across Evansville for five years to the class for children with multiple disabilities in a public school. His teacher understood that we wanted Scott educated with children in a general education (inclusive) setting. She found a first grade teacher who let Scott and an assistant come to her class for reading class. Other teachers let them attend reading, art, and music classes during subsequent years in that school--the result of “agreements.” Scott learned and made educational progress in that setting.

Scott's 1st day at Highland Elementary, our neighborhood
school. August 29, 1994.

During those early school years, Bob and I interviewed adults with disabilities throughout the country about their education, and we asked how they believed Scott should be educated. Everyone recommended an inclusive setting. These interviews contributed to our mission for Scott’s case conference committee that year and from that time forward: general education class in his neighborhood school with appropriate aids and supports.          

When it was time for Scott’s brother, Aaron, to enter kindergarten, we wanted both boys educated in the same school—our neighborhood school. Another parent (of twin girls with CP) and I met with our neighborhood school principal sharing our mission and further stating that we believed special education services could be provided in any school. He agreed and said he would welcome Scott and the twins.

Bob and I discovered that students with multiple disabilities were being successfully educated in inclusive settings in other school districts. We talked with their parents to see what attributed to those successes. We spent hours documenting Scott’s strengths and needs in all areas of his life. We wrote a ‘parent report’ to be presented at the conference. (A future blog entry will be solely dedicated to the parent report.) We wrote out the general education teacher’s role, the teacher of record’s (TOR) role, the resource room teacher’s role, and the necessary requirements of an aide to provide educational support and personal care to Scott.

Once word got out about our mission for Scott, a few other parents of children with disabilities called saying that’s what they wanted, too. So, at spring conferences in 1994, families worked with our school corporation to move five children with disabilities from segregated classrooms into inclusive classrooms. Scott was the only one classified as “multiply disabled.” Even though Scott was 10, we decided that he should be in a third grade class since he was ready for the third grade reading curriculum. More importantly, we’d been advised that 8-year-olds would be more accepting (compared to 10 year-old fifth graders) to a student with multiple disabilities.

Eleven hours of conferences with 19 people sharing and receiving information about Scott achieved the mission that he would transfer to his neighborhood school, be educated in a general education classroom, receive pull-out resource supports, and have the services of a dedicated classroom aide. We celebrated. . .until the written IEP was received. It did not include these three main points!

Scott and his classroom assistant, Karen Maxey.

(We’d previously learned the hard way that Scott’s rights weren't protected if “agreements” weren't written in the IEP. Years earlier we had an unwritten agreement that Scott would have increased speech services. He received those services; but, during that year the TOR took maternity leave, the speech therapist took medical leave, and the principal resigned. Bob and I were the only ones left who’d been in on the original agreement. The new TOR, speech therapist, and principal were obligated to provide the lesser services that were written. We had to conference again to get the increased services written in the IEP. . .a delay which could have been prevented if only it had been written when agreed upon!)

So, we wrote a letter to the Case Conference Coordinator explaining that we would sign the IEP only after the above three points of our mission were included. She apologized and explained that this was new to the school corporation. She corrected the IEP. We signed the IEP, and we never looked back.

Worth noting: I advise parents to NEVER EVER sign a blank IEP. One wouldn't sign a blank check, and one surely should NOT sign a blank IEP! Always read through the completed document and ensure that everything that was agreed to in the meeting is included in the IEP. If the IEP needs correcting before being signed, document the issues in an email or letter to the school and wait for the document to be corrected before signing it.

Our neighborhood elementary school principal hired an assistant. She worked with Scott from third grade until he exited the Evansville Vanderburgh School Corporation 10 years later. She was with him in all classes, at elementary band concerts, at middle/high school choir concerts, and at high school play rehearsals and performances. She went on field trips and work experiences. She was crucial to Scott’s success as were the attitudes of the many administrators, teachers, staff, and therapists who were a part of Scott’s journey.

High School Graduation! May 2004.

Scott remained in a general education setting until he graduated in 2004.

We now know there are benefits to inclusion that we did not anticipate. Some of Scott’s classmates have shared that Scott impacted their lives: some chose medically related careers because of him; some are teachers who are not afraid to have a differently-abled child in their class; some are parents of children with special needs who have said that they were better prepared for their own journey because of Scott; some are in jobs where they have opportunities to hire workers and are willing to select people with disabilities because of their classroom memories Scott.

Please do not read this and feel sorry for Scott or us. Instead, celebrate the victories and know that one person / one family can and does make a difference.

--Paula