Spread the Word to end the Word

Making a video as part of your vision

I often recommend families create a vision statement for their child as part of the IEP. If you don't clearly state what you hope for your child, you're likely to be taken off course by others at the case conference meeting. 

This article from Wrightslaw shows how to use a video as part of sharing your child's strengths, interests, etc:

I recently made a video to introduce my son, Alex, to the IEP Team.  It was a great success.  I’m writing this article to tell you about how we created it and the impact the video had on my son’s IEP meeting.

My Purpose

The intent of the video was to portray my son in a positive way to the IEP Team.

He changed schools this year as he began middle school. He will have many new teachers and administrators who have not met him.  They know nothing about him.

I wanted the IEP team to see Alex as a child, not a label or a diagnosis with a set of issues and problems.

My Plan 

1. I made a list of what I wanted the video to convey.

I wanted the IEP Team to know that Alex has hopes and dreams for his life. He likes to play on the computer, enjoys reading, and he loves science. 

I wanted them to relate to him and say to themselves “What if this was my child?”

2. I got out all of the pictures I wanted to use.

I used pictures of him when he was a baby, toddler, playing on the beach, dressed up for Halloween, and doing all the things that other kids do.  These pictures let the Team see my son for who he really is.  Can’t we all look at a baby picture and remember our own children at that age?

3. I wrote what text I wanted to include.

I wrote about what kind of learner Alex is, what he likes to do, and his hobbies.  You could also include specific goals or accomplishments, and ways to best help your child.  Make it personal. I also included a couple of quotes from Alex.  These were things I specifically remember him saying at some point in time that were particularly meaningful.

Tip:  Don’t forget to include a thank you to the Team for taking the time to listen and watch the video, and for helping your child.    

4.  I picked out a song to go with the video.

Be careful what you choose.  I chose one that had a message that was the same message I wanted the video to convey.

Tip:  You want this to be a positive message, not something to make them feel sorry for your child.

My Tools

There are many programs available that you can use to make a video.  I used Windows Movie Maker software.  I had no previous experience with it prior to putting the video together, so anyone can do it.  Just play around with the software a bit to get comfortable with it.  It only took me about 2 hours to put it all together once I was comfortable with the program.

You import your pictures and music directly into the program, then add your text wherever you want.  I found it helpful to put the pictures in the order I wanted in the video first, then add the music. The text is added last.  Your video should be about 3 to 4 minutes long, any longer and you may lose the Team’s attention.

If your pictures are not already on your computer, you will need to scan them.  If you do not have a scanner, you can take them to a place that develops pictures to have them scanned and put on a disc. You can do this yourself at a Walmart photo center.

My Helper

My son helped me put his video together.  He is old enough to understand why it was important.  This was a good way to include him in the IEP process.

It was also a good way to begin teaching him self-advocacy skills.

Our Success

Our video had a tremendous impact on the IEP meeting.

It allowed the new school staff and the IEP Team to put a face and an identity to my son’s name.  It made him real to them.

The principal of his elementary school came up to me after the meeting and said she almost cried.

Using the video was a great way to start the IEP Meeting.

Before the Team discussed anything else, Alex became a real person to them, with all attention focused on him. By Tiffany Moody

Time to fuel your tank

Tips for writing effective letters

12 Rules for Writing Effective Letters

Read 12 Rules for Writing Effective Letters. If you follow these Rules, you make it more likely that you will get the relief you want. 

1. Before you write a letter, answer WHY and WHAT. 

2. First letters are always drafts. 

3. Allow time for "cooling off’ and revisions. 

4. You are always negotiating for services. 

5. Never threaten. Never telegraph your punches. 

6. Assume that you won’t be able to resolve your dispute, that the dispute will escalate, that a special education due process hearing will be held, and that you won’t be able to testify or tell your side of the story. 

7. Make your problem unique. 

8. You ARE writing letters to a Stranger. You are NOT writing letters to the school. 

9. You ARE writing business letters. When you write business letters, you DO use tactics and strategy (your brain). You DON’T ventilate anger or frustration (your emotions). 

10. NEVER make judgments. 

11. You are telling a story. Write your letter chronologically. Don’t broach the main issue in the first paragraph of the letter. 

12. Write letters that are clear and easy to understand. Make your letters clear, short, alive, and right. 

You can read the entire article and look at samples of what TO DO, and what NOT TO DO here.

The paper trail: creating documents

What Documents Should You Create?

Why is it important to create documents? One reason is that you may have to tell your child's story to another person -- an evaluator, an advocate or lawyer, or a hearing officer -- in order to get help. Documenting events as they occur will help you tell the story accurately. A second reason is that documents can help clarify understandings you reach with people -- particularly with service providers or school administrators. A third reason is that documents that are written when something happens support you when you need to prove that the event happened the way you say it happened.

Keep a Journal

It can take years for parents to realize that they should have kept better notes of meetings, telephone calls, and important events in their child's educational career. If your young child has a disability in need of special education, get ahead of the game by developing this habit now.

Your notes may be important later when you need an accurate description of what key people said at a CCC meeting, at a parent meeting, or in an evaluator's office.

Some parents keep a journal with dates, short descriptions of events or conversations, and the names of people who were involved. This doesn't mean you need to include every tiny detail of your child's life, but a well-kept journal can help you explain to others (or to yourself) how you got to the current situation.

Try to record these events:

• Dates of meetings with school personnel
• Dates you received key documents (such as notices of CCC meetings)
• Dates you sent or delivered key documents
• Dates you gave school personnel important information (such as "1/7/99: Told Mary's teacher
• hat she'd been spending three hours every night trying to do 15-minute math assignments").
• Dates on which your child was suspended or disciplined

Create Agreements

Some documents are designed to record understandings reached with others. The most formal example of this is a contract signed by the parties who agree to its terms. (Note: An IEP is really a contract. It records an agreement reached between parents and school systems that governs: 1) the types of services to be delivered to a child for a specific period of time; 2) the location of those services; and 3) the identity of service providers. It's signed by each party.

Even without an "official" agreement, you can create your own document to help prove that an understanding was reached. Here's an example:

Your special education director tells you that the school system will hire an expert on inclusion techniques. You'll be given the chance to meet with the expert about your child. Follow up this conversation with a friendly letter to the director. In the letter, thank her for taking the time to discuss your concerns about the classroom, and describe your understanding of the steps she promised to take. End your letter by asking the director to respond immediately if you have misunderstood anything.

This letter may not "prove" that the director said what you claim she said, but if she doesn't send back a response, there's an implication that she did say those things.

Other Documents

There may be other documents that can help your child. Has your child been tested repeatedly over the years, with steadily declining results? You may want to create a chart of test results to focus the CCC on that history.

Have the people who work with your behaviorally-involved child wondered what precipitates his aggressive outbursts? Keep a record of the things that are said and done immediately before such explosions -- whether witnessed by you or told to you. You may be able to solve the mystery, and focus your child's service providers on developing a plan to work with these behaviors.

from Wrightslaw by Robert K. Crabtree

The paper chase: educational records

If you've got kids with special educational needs, you can be overwhelmed by the paperwork in no time at all. From the beginning of school to the time your child either graduates or "ages out" of entitlement to special ed services, the accumulation of IEP's, evaluations, progress reports, correspondence, notes, journals, samples of your child's work, and medical records, will fill several drawers of a file cabinet or take up most of your shelf space.

You might be tempted to throw out papers when they get out of hand, but this may be a mistake. Even the oldest documents in your child's history can sometimes help you make a case for increased or different services under IDEA.

Make sure you understand the relative importance of different documents and organize them sensibly. 

Here are some guidelines to help you manage them.

Which Documents Are Keepers?

Here's a list of the different documents that you'll see over the course of your child's special needs education. You should keep them all!

1. Individualized Educational Programs (IEP's) and other official service plans. In addition to IEP's, you may have Individualized Family Service Plans (IFSP). These are service plans that govern early intervention programs for kids before they're old enough to receive special education services, or plans that are written by agencies other than the local school system (such as a department of mental health or mental retardation).

2. Evaluations by the school system and by independent evaluators. Depending on your child, these will include educational, psychological and/or neuropsychological, speech and language, occupational therapy, and physical therapy evaluations.

3. Medical records. You probably don't need to keep all medical records with your child's IDEA documents. Keep only those that relate to the disability or disabilities that affect his ability to learn or to access school programs and facilities. As with any other kind of document, when in doubt, keep it!

4. Progress reports and report cards. These are the formal documents where the school system periodically describes how your child is doing.

5. Standardized test results. School systems often administer standardized tests (such as the California Achievement Tests) to all students. These tests can provide a helpful comparison to the progress reports written by your child's teachers.

6. Notes on your child's behavior or progress. These will include notes from you to the teacher, from the teacher to you, or journal entries between you and your child's service providers. Sometimes notes from a concerned teacher tell a different story than the formal report the teacher develops at the request of her supervisor when the TEAM convenes.

7. Correspondence. Save any correspondence between you and teachers, special education administrators, TEAM chairpersons, and evaluators. Don't forget emails -- print them out and include them in your correspondence file. Also save correspondence from the school system that's addressed to you or to all special education parents describing issues that affect your child. This may include letters describing new programs, changes in programs or services, school system policies for children with special education needs, or budget issues.

Note: Do you use certified mail, return receipt requested, when you send letters or notices to the school system? Sometimes this is necessary, but more often, this just adds unnecessary delay to the delivery of the letter or notice. 

It's better to hand-deliver the document and ask for a receipt. Remember that in most courts and administrative forums, a letter mailed in ordinary first-class mail is presumed to have been delivered within three days of its mailing.

8. Notes from conversations and meetings with school personnel, evaluators, the child's TEAM, or other interactions relating to your child's program or needs. Be certain to take excellent notes at key meetings or, better yet, bring someone with you whose only task is to take notes (especially at TEAM meetings). These notes can help enormously when, months later, you try to remember exactly what various people said or what agreements were reached.

Note: Should you tape TEAM meetings? Do you have the right to tape them? The answer to both questions is "probably not." Under the laws pertaining to discrimination on the basis of handicap, you may have the right to tape a meeting if it's necessary to accommodate a disability (for example, if one or both parents have a language processing disorder). You may also have the right to tape a meeting if it's conducted in a language other than the parents' first language. Generally, the right to tape a meeting hasn't been determined to exist under IDEA.

Ordinarily, if you ask in advance to tape a TEAM meeting, the school system should let you as a courtesy, and will usually tape the meeting also. You need to consider, however, that having a tape recorder may inhibit the participants and create a feeling of hostility at the meeting. Again, it's usually better if someone takes excellent notes.

9. Documents relating to discipline and/or behavioral concerns. These include notices of detention and suspension (both in and out of school), letters describing the concerns of service providers or school administrators about behavior, records of behavioral assessments, and records of behavioral plans for addressing behavioral issues.

10. Formal notices of meetings scheduled to discuss your child. When you get a notice like this, jot down the date you received it. Sometimes the question of whether a school system has met time requirements is important under IDEA. (It is sometimes a good idea to keep copies of the envelopes in which such notices arrive. Check the date of the notice or letter and the date of the postmark. It could be significant if the postmark is later than the date on the notice.)

11. Samples of schoolwork. You don't need to keep every scrap of writing or drawing that your child produces, but it can be helpful to keep examples each year. You can compare these to show how much progress he's made in different academic areas.

12. Invoices and cancelled checks. Save the ones from services that you provide for your child's educational development. For example, if you hire a speech and language pathologist for an hour of therapy each week to supplement the school system's services, keep a record of any payment. Eventually, you can seek reimbursement for this expense. (You must be able to prove that it was necessary because the school's services weren't allowing your child to progress effectively.)

13. Public documents. These help explain how your school system works with children like yours. They include newspaper articles featuring special education administrators, school committee members, or superintendents talking about reorganizing special education programs, cutting expenses, or new teaching approaches.

Remember that except in rare cases, you don't need to keep drafts of any documents. The drafts may lead to confusion if you ever need to seek services for your child through the due process system. This is one area where you can and most often should lighten your document load.

from Wrightslaw by Robert K. Crabtree

Keeping and organizing medical records

Why should you keep copies of your child’s medical records?

Keeping copies of your child’s medical records is an important part of your role as your child’s advocate. Here are some reasons for keeping these records:

1. You can take time to review the records for accuracy.

2. You will gain more detailed knowledge about your child’s condition. This will help you feel morecomfortable when you talk to your child’s doctors.

3. You will have a resource to answer questions about your child’s condition.

4. You will have the records on hand during emergencies. Emergency departments may not have easyaccess to your child’s records. You should bring the most current and relevant records with you if yourchild needs an emergency room visit.

5. If your child sees several specialists, you can collect all your child’s records in a comprehensive set foreasy access.

6. You will have records available if you file an appeal for health coverage or apply for a public program.

Suggestions for organizing medical records:

Keeping track of your child’s medical records can be overwhelming. Once you create a recordkeeping system,organizing the records should become easier. Here are some suggestions:

1. Use a three-ring binder divided into relevant sections. (See below.)

2. Purchase a commercial medical record organizing system.

3. Keep all records in a box until you have the time and energy to organize them into a three-ring binder.

This way you will still have the information, even if you don’t have the opportunity to organize it.

Organizing a three-ring binder system:

Every child has a unique set of records. Your binder will not necessarily contain all of the sections listed below. However, you can use this list as a guide to help you get started.

1. Addresses/phone numbers: List contact information for your child’s primary care physician,

specialists, and pharmacist.

2. Medications/immunizations: Keep a chart of medication and immunization information that details thedates given, any side-effects, medication changes, and the reasons for the changes.

3. Lab/test results: Keep track of the type of tests taken, dates performed, the location, reference norms,and results.

4. Doctor visits: Keep a list of the date, the doctor visited, symptoms, diagnosis, and the outcome of thevisit.

5. Medical history: Detail your child’s diagnoses, any specialized plan for handling illness, surgeries, past hospitalizations, growth and development information, adaptive equipment used, and other past health information pertinent to your child.

6. Home health care: Keep a chart of telephone records with home care agencies and copies of service plans.

7. Therapies: Keep information about therapies that your child receives, including the type, provider names, and dates.

8. School information: Keep a list of contact people within the school system, a record of phone calls, and education records, including IEPs, report cards, and notes from meetings.

9. Advocacy records: Keep a record of phone calls made to advocacy organizations.

10. Financial/insurance information: Keep a record of phone calls to insurance companies, a copy of your benefit plan, insurance claims, bills, and payments made. If you have a significant amount of insurance records you may want to create a separate binder to collect and organize this information.

11. Phone record: Keep a list of phone calls made to health care providers and other persons involved in the care of your child. The list should indicate who you spoke with, the date, reason, and follow-up information.

Keep your own notes

Notes about your child’s condition. Keep detailed notes about your child’s condition when you notice unusual changes. The information that you record will depend on your child’s situation. You may want to record factors such as: temperature, eating patterns, sleeping patterns, and reactions to medication. Be sure to record exact times of the events you note. This information is important for the doctor to consider and more useful than a general description.

Notes about calls to the doctor’s office. You may consider keeping a spiral notebook by your telephone to keep a log of phone calls to your doctor’s office. In addition to writing down what was discussed, record the date and time of the call along with the name and title of the person that you spoke with. This way you will have detailed information available for follow-up calls.

from PACER

Planning for the future

ESY: extended school year

This is usually the time of year that families discuss ESY with the schools. We want to be sure you know the definition of ESY and where to find the technical assistance document the schools should be using.
These are tough economic times, so asking for ESY may be more difficult than usual. You need to ask yourself if this is a critical need for your child. There may be other issues that impact your child's education more. Only you can make that decision. We just want to make sure you have the tools to effectively advocate for FAPE (free appropriate public education).

Indiana’s definition of ESY services mirrors the federal definition. Article 7 requires every public school to “ensure that extended school year services are available as necessary to provide free appropriate education. A public agency may not limit extended school year services to particular categories of disability or unilaterally limit the type, amount, or duration of those services.” The regulations further require that each IEP contain “a statement of the student’s need for extended school year services.”

In order to meet their obligation to provide a FAPE to students with disabilities, schools must ensure that all students with disabilities receive special education and related services consistent with their IEPs. Some students with disabilities may not be afforded a FAPE unless they receive services during a break in instruction when other students normally do not receive educational services. Special education and related services provided through the IEP, in excess of the standard school year, are ESY services.

ESY services often are provided during a time when the full continuum of educational placements is not normally available. The school is not required to establish programs to ensure that a full continuum of educational placements is available solely for the purpose of providing ESY services. ESY services may look different from the student’s regular school year services. Extended school year services may be provided in various locations and through various service delivery options as determined by the CCC. If the CCC determines that interaction with nondisabled peers is required, the school may provide the student with services in an integrated, nonschool setting.

Summer school is not the same as ESY services. Summer school is a discretionary program that is typically operated on a set schedule for a number of weeks during the summer. While participation in discretionary summer school is available to students with disabilities, if the identified ESY services for the student include participation in summer school, it (summer school) must be included as part of the student’s IEP.

Extended school year services may be delivered through the summer school program, provided the recommended summer services are consistent with the implementation of the student’s IEP goals and benchmarks, and the personnel who teach summer school classes hold appropriate licensure. In addition, the amount and duration of ESY services cannot be limited arbitrarily to the school’s summer school schedule. Summer school should not be the only option considered or available when addressing the student’s individual needs.

You can find the ENTIRE Technical Assistance document for determining ESY in Indiana here.

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Sunny Start Fact Sheets

The Indiana State Department of Health's Sunny Start project has created a series of fact sheets to highlight the basics of key resources available for Hoosier families. Fact sheets on the following topics are now available: 

• Assistive Technology 
• Section 504 
• First Steps 
• CHOICE 
• Other Funding Options 
• Resource Organizations 
• Children's Special Health Care Services (CSHCS) 
• Prescription Drugs 
• WIC-Women, Infants & Children Program 
• Medicaid Disability 
• Medicaid Waivers: DD, Autism & Support Services 
• Autism Mandate 
• Bureau of Developmental Disabilities Services (BDDS) 
• Medicaid Waivers: Aged, Disabled & TBI 
• Medicaid 
• Resource-Area Agency on Aging 
• Private Health Insurance 

Fact sheets can be found at http://earlychildhoodmeetingplace.indiana.edu/ 
1. Click on "Family info and resources" 
2. Click on "Financial Resources" (box on right side) 
3. Select the sheet you would like to see 

What to do when your child is diagnosed with a developmental disability

The great sleepover debate

From virtually the moment of my daughter's birth, I have be consciously focused to ensure her inclusion in all aspects of life.  We do things and go places that a typical family does even when issues of accessibility make it a huge hassle.  I have always wanted her to think that the whole world is hers.  I have insisted (sometimes loudly) that she always be fully included at school.  So, I should be celebrating success today; her backpack contained an invitation to a classmate's sleepover birthday party.

Yet, this has sparked a crisis.  I don’t know the parents of the girl that invited my daughter.  And while their daughter likely  has some inkling of what having my child over means, they may not.  Do I call them to explain?  How many details do I ask (can a wheelchair get into your house? Are you comfortable with my daughter's needs?)  Do I invite myself along?  And what about all of her needs (medications, emergencies)?  Do I only let her go for the evening  and miss the sleeping part? 

I am amazed at how a happy, exciting invitation can cause so many issues and concerns.  After a few deep breaths, I decide to enjoy the occasion and let my daughter enjoy the invitation.   Inclusion works; she is “one of the girls”.  Tomorrow we will figure out all the details. We have done this many times over the years; because for inclusion to work, it often takes some work on our part.

Surviving a Child’s Death: Four families share their experiences

The death of a child is probably the most wrenching experience a parent can endure. Yet, many parents of children with severe disabilities or chronic illnesses must face the medical prognosis of alimited life expectancy for their sons or daughters. Four Minnesota families share their experience of losing a child in the hope they can help others.

They did not look like the “Gerber Baby,” nor were they as precocious as the neighbor’s

child. To their families, however, Jared Odash, Evan Colón, D. J. Moore, and Scott Jackels

were “beautiful,” and “precious.” Despite the physical, emotional, and financial

challenges they brought to their families, the children were cherished. Their families said

they are grateful for the opportunity to have loved them. “We knew a lifetime of love in a short time,” said Joanne Odash, whose son, Jared, died a week short of 3 months old. She remembers her concern about becoming attached to her child when she learned of his disabilities and prognosis and advises other parents: “Don’t pull back because you’re afraid of getting hurt. Knowing and loving Jared was a rich experience for us.” 

How did the families live with a child expected to die? Despite the differences of their circumstances, their answers were similar.

1. Understand the medical realities, but maintain hope.

Doctors told Joanne and Klink Odash that Jared was deaf and blind and would never know them. “But Jared proved them wrong. We brought him home when he was six days old, and he blossomed,” said Joanne. Jared responded to his parents’ voices and made little sounds to attract Joanne’s attention when he heard her. Their doctor later told them, “It’s amazing what love can do.” Evan’s imminent death was “always over our heads” until he was about 2 years old, said Katie Colón. Then she read about a little girl with Evan’s diagnosis who already had lived to age 5. “It gave me hope that we could have a while,” she said. Evan lived to be 7½ years old. When Scott Jackels, who died at age 16, was diagnosed with muscular dystrophy (MD) at age 5, his mother, Julie, said she grieved for “the football player that would never be, the young man never to marry.” For several years, she clung to the outside chance of a cure for MD, she said. Each of the parents interviewed said they relied on spiritual faith as they faced their child’s illness and death.

2. See your child as unique in his or her own way.

“This was our child, and we were proud of him.” Each family said those or similar words.

They also said it was important to them that their child’s life had purpose. Children with disabilities or illnesses often touch people in profound ways, said Ed Colón. “They elicit an incredible response in people and cause them to do things that are extraordinary,” he said. The Colóns said they saw medical professionals, paraprofessionals, teachers, friends, family, and others express love and reach out to Evan and their family in unexpected ways that touched Ed and Katie deeply.

3. Don’t settle for less than the best you can give your child.

“Regardless of the circumstances, you want your child to have the best of what you have

to give. You just never know how much time you have with that child,” said Peggy Moore.

“I feel good about D.J.,” she said. “I know I did all I could as a mother to care for him.”

The Jackels are glad they encouraged Scott’s participation in the celebrations that enriched his life, Julie said. He was confirmed in their church, participated in adaptive sports, and took a date to his high school homecoming. “Those are the things we look back on,” said Julie.

One of Evan’s greatest pleasures was going to school, said Katie Colón. The Colóns realized the danger of exposing him to the illnesses that circulate among youngsters, but they didn’t want to exclude him from experiencing school. “We wanted him to enjoy life and to have the best quality of life. School was part of that,” she said.

4. Find professionals and support that are sensitive to you and your child’s needs.

Ed Colón recommends finding professionals and other parents who can empathize rather than sympathize. They understand that the feelings you are experiencing are part of the process and can assure you that the emotions are okay, he explained. Moore said she had to “get rid of some doctors” before she found the ones with whom she was comfortable. The families also said they depended upon information and support from PACER Center and organizations representing

specific disabilities or illnesses, as well as extended family. Get help from all sources, advised Ed Colón, because each may provide something different.

5. Let your child participate in family life as much as possible.

The families advised including the child in family events and outings. There may be times, however, when it is not wise, they added. Although the Colóns tried to plan trips in which Evan

could be included, his health and the weather often dictated whether such outings were possible. The family, however, took advantage of respite care, which gave them the opportunity to go places with their other children, even if Evan could not accompany them. The Jackels family, too, tried to make allowances for Scott’s illness without infringing on others’ activities. “Scott would

have been a spoiled brat, if I had reared him alone,” said Julie. Curt had more common sense in dealing with some of the issues surrounding Scott’s illness than she did, she said, and he insisted Scott be treated and disciplined like any child.

6. Live day by day.

As she accepted Scott’s illness, religious teachings helped her focus on living each day fully and not be too anxious about the future, Julie Jackels said. She learned to handle one crisis at a time.

Peggy Moore also advised to “not let things pile up.” She said it is better to deal immediately with little problems that are upsetting, rather than to let them accumulate to the point

that they seem insurmountable.

7. Decide what you feel is right for your child and family, and do it.

Whether it is determining a treatment method or planning a funeral, parents need to follow their instincts, said the families. Katie was Evan’s primary caregiver, but the Colóns depended

on nursing care to help. “At first I felt very guilty about using help, but someone who is totally dependent takes a lot of time and energy,” said Katie. “The nursing care helped us provide as normal a life as we could for the rest of the family,” she said. Doctors advised the Odashs to leave Jared in the hospital, but the couple took him home and are “so glad we did.” There they cared for their son and experienced intimate moments as a family. The Moores had D.J.’s body cremated, despite relatives’ misgivings. D.J.’s memorial service was meaningful for her and Dennis, said Peggy. “People who love us had to respect our decision,” she said.

8. Take care of yourself and other family members.

As they care for their sick or dying child, parents need to also take care of themselves, including getting rest, eating properly, and taking an occasional break. It’s important to recognize when you’re reaching the limits of your endurance, said Ed Colón. He also advised each parent to learn to accept help. “You may be reaching the end of your rope and not realize it, but your spouse may sense it,” he said. He suggested that parents be alert to how other children in the family are faring. A change in behavior may show stress or sadness before a child can verbalize it, he said.

The Colón family talked a great deal about Evan’s illness and death. He and Katie wanted their young children to understand the situation. The discussions helped Katie and him clarify their feelings, too, he said. Peggy Moore said she would deal with D.J.’s disability and death differently now than she did three years ago. “It took a lot of work to care for D.J., and I wanted to do it all,” she said. Although Dennis tried to help, she didn’t include him as much as she should

have in D.J.’s care, she said. The Jackelses had a day between when Scott collapsed and when he died to talk about “things that only we could understand,” said Julie. She appreciates her husband’s approval and support in her care of Scott, Julie said. “It is nice to be on the same page as your spouse when you are going through something like this.”

9. Prepare for the death, if possible.

Evan’s deteriorating health warned the Colóns of his impending death. They chose the funeral home and cemetery and planned much of the funeral before he died. Anticipating that Evan would die at home, they informed the coroner of the situation and completed as many legal

responsibilities as they could. They did not want the coroner, sheriff, paramedics, and other strangers coming to their home when Evan died, because they wanted to say good-bye to Evan in “quiet privacy,” they said. Also, they did not want to further upset the younger children. Only one person, someone from the funeral home, came for Evan, said Ed. Grieving families may also wish to prepare themselves for well-meaning, but misplaced, comments such as “His passing was a blessing” or “You’ll get over it.” They might also wish to prepare a response to the inevitable

question from strangers, “How many children do you have?”

10. Grieve in ways that comfort you.

Grieving is as individual as fingerprints or handwriting. Some people need to talk. Others wish to be alone. A teacher, Julie Jackels returned to work two weeks after Scott’s death to finish the last days of the school year. “It helped to come back to my kids,” she said, but added she

probably could not have handled an extended time at school. The Odashs keep mementos of Jared throughout their home and visit his grave often. At Jared’s funeral, Klink wanted to carry the tiny casket himself rather than using pallbearers. The Moores prominently display D.J.’s photo. “I refuse to take it down. It is so important to keep him alive,” said Peggy. She talks often about D.J. to the little sister he never knew. The Colóns found solace in planting trees in Evan’s memory, one at his school and one at a neighborhood park, and in hearing memories about Evan from his classmates, family friends, and relatives. The families said gestures of sympathy such as notes of support and sympathy cards helped the grieving process. They read and reread them, they said. And sometimes the perfect gift comes unexpectedly. A friend gave Katie Colón wind chimes. “I think of Evan’s spirit as I hear them,” she said.

—By Patricia Bill, PACER Center

Dealing with a diagnosis

Receiving a diagnosis of a developmental disability is an emotional roller coaster for all involved. But the diagnosis is only the beginning.

For most, there is a process of guilt, anger and sadness to overcome before returning to a life of hope, calm and a sense of normalcy. In this installment of Scoop Essentials, genetic associate Louise W. Gane from the M.I.N.D. Institute at the University of California at Davis walks you through the process.

Check out what Gane has to say and then click here to submit your own questions to her.

Disability Scoop: What are the steps to dealing with a diagnosis?

Louise W. Gane: When a child is born with a disability, the parents go through an emotional journey. It doesn’t occur in a specific order but it may include grief, anger, guilt and real sadness over the loss of the child that they hoped to have and the loss of the expectations that they had for the child. They may feel why me? They may wonder if the disability resulted from something that was done during pregnancy. Often when a child is born with a disability, the parents will search for a reason.

Disability Scoop: How do males deal with a diagnosis differently than females?

Louise W. Gane: Men and women deal with the grieving process differently. I don’t want to sound sexist, but often women are more tearful and more emotional and may also experience depression. Whereas many of the husbands or fathers of the child will get very busy learning what can be learned about the condition so that they can take control and feel like they’re doing something to help the child.

Disability Scoop: How long does it take for families to come to terms with a diagnosis?

Louise W. Gane: I’ve seen some families go through the process — the grief, the anger, the denial, etc. — very quickly, within a matter of two or three months. I have seen other families take eight years. So there is no time limit on the process and there is no sequence to the emotions experienced during the process. What I do know is that eventually the parents reach a place where they come to peace with the disability.

Disability Scoop: How will your life be different after receiving a diagnosis?

Louise W. Gane: It seems like your whole world is turned upside down once you get a diagnosis. Everything that was is not the same any longer. It feels like there’s a loss of control. Parents often need support to deal with the physical needs as well as with the emotional needs. It generally takes a good year for things to get back into a routine and for a degree of normalcy to be obtained. Parents do get there, but it’s a process.

Disability Scoop: What are common issues or fears people have when they learn about a diagnosis?

Louise W. Gane: Usually the concerns and fears people have are based on misconceptions and sometimes miscommunication by professionals. When lay people, such as most parents, hear terms like mental retardation, they think that the child will never really progress or develop or have his or her own personality. Their understanding of what those words mean are not really accurate.

No matter what a child’s disability is, they all develop their own personalities and become their own individuals. Mental retardation just is a number. Every child, no matter the diagnosis, continues to grow and learn and change.

It’s really important for parents to have hope and faith and understand that there is a future for their child. Their child does have possibilities, especially in today’s society and even more so in tomorrow’s society, to be productive in his or her own way.

Disability Scoop: Do parents have preconceived notions of what disability means that they have to overcome?

Louise W. Gane: Absolutely. That’s part of the process. It is a journey to learn what is really meant by a diagnosis and what goes along with the diagnosis as far as difficulties. These days most parents go to the Internet, which can be a really helpful place, but the Internet can also be an extremely scary place. When parents of a newly diagnosed child call me, I often ask them to stop getting on the Internet or not to get on the Internet as much. The reason is that often what you find on the Internet is the worst-case scenario. The future for children born prior to today is different than the prognosis for a child that’s born today or tomorrow.

Disability Scoop: What about feelings of guilt and shame?

Louise W. Gane: Guilt is a normal reaction. Usually you don’t know what caused the diagnosis and so you look for something within your own frame of reference and you feel that it’s something that you caused as a parent.

I understand that people feel guilt. However, most disabilities occur sporadically or maybe in conjunction with other difficulties. They’re not something people need to feel guilty about or ashamed or embarrassed about.

Every child no matter what his or her disability, has real strengths and has a personality. That is what needs to be recognized and valued. When parents get a new diagnosis, I will tell them to spend 15 to 30 minutes a day not thinking of the diagnosis but seeing their child for who they are.

Disability Scoop: How do you break the news to friends and family? What should you expect when doing so?

Louise W. Gane: You can’t expect anything because friends and family are their own individuals. Some friends and family are instantly on board and supportive and will help with whatever needs to be done. However, others will say, “this is your problem, not my problem,” and don’t want to have anything to do with it. Yet others will say, there’s nothing wrong.

If it’s a genetic disability like spina bifida, cystic fibrosis or fragile X, it’s important to let family members know because it may impact other family members. Sometimes people will let family members who are resistant know about the diagnosis by sending a letter. I have a letter for people to use that says, “someone in your family has been diagnosed with a disability.” The letter talks about what it is and gives them my phone number and might suggest that they contact a genetic counselor in their area to get further information.

In other situations, people may have a family reunion and talk to family members then. Often in families that are resistant, it can be helpful to identify a family member who’s in touch with everyone else. Enlist them in the mission to let other people know about the disability and, if it’s genetic, the potential risks for other family members. There is no right or wrong. There is not just one way. It’s very individual. It has to be a way that the parents are comfortable with. Sometimes parents aren’t comfortable telling family or friends for several years. Others may talk about it immediately.

Disability Scoop: Is dealing with a diagnosis something you do for a brief period of time when you first learn of it, or is it a lifelong process?

Louise W. Gane: It’s lifelong. But the first year is the worst. I always tell my patients that once they get through the first year, they can survive anything.

There are lots of times when these emotions reoccur, however. When the child is three and makes the move into preschool, there’s a jolt. Then when they go into elementary school, that’s another time when parents are hit with a lot of the ramifications emotionally from the diagnosis. When the child goes into middle school, again, that’s another time when the emotions are likely to arise, going into high school and then getting out of high school.

During these times parents are faced with the emotions that they dealt with when the diagnosis was first made. However, those emotions are usually not as strong and having had a history of coping with prior transition periods, it’s usually not as severe or as crippling as it was when they got the original diagnosis.

Disability Scoop: Families may be inclined to search for a cure after learning of a diagnosis. How can people come to terms with the idea that there may not be a cure out there and that disability is lifelong?

Louise W. Gane: This is normal. When a baby or a young child gets a diagnosis, the parents are going to focus on curing that child. It’s a coping mechanism. It leads to great advocacy and is a productive channel to direct one’s energies.

Young parents with a young child are very creative and very innovative. There are many examples of what new parents accomplish either through money, through energy or through education that older parents don’t necessarily accomplish. That’s because when the child with the disability gets older, it becomes more normalized within the family. The parents have reached a coping stage where they’re back to a normal routine. The parents are often older, so they have less energy. These parents are often looking for answers that won’t change who their child is, but will be of help to lessen some of the difficulties that the individual is experiencing. That’s the progression of coping with a diagnosis.

Young parents are often looking for that magic bullet. It is important that when they work with professionals, that the professionals explain that there may not be a magic bullet.

Disability Scoop: If you have a genetic condition or have a child with a genetic condition, can you have other children that don’t have the condition?

Louise W. Gane: If you’ve received a genetic diagnosis, even if the child has an isolated congenital defect like hydrocephalous or spina bifida, you are at a slightly increased risk to have another child with the same problem or a similar problem.

If it’s a single gene disorder or a recessive condition where each parent gives a gene that contributes to the condition, you can have chorionic villus sampling (CVS) or amniocentesis during pregnancy. With chorionic villus sampling, they take a little bit of the placenta and can do chromosomal and gene analysis to rule out any problem in the fetus. Or, they can do an amniocentesis, where they take amniotic fluid and do a similar procedure.

Most people think that you only have CVS or amniocentesis if you’re going to terminate a pregnancy. This is absolutely not true. If you find out the child is going to have difficulties after birth, it allows you to prepare for that child’s birth and it allows you to have the right follow-up immediately after birth or within the first few months. It’s about good parenting because it allows you to make decisions that are in the best interest of the child.

Disability Scoop: How can people learn about their diagnosis?

Louise W. Gane: The Internet is a very good place to find foundations and associations. Many parent groups have great Web sites that are very supportive and helpful and then give links to other places. People can go to Genetic Alliance, which covers every genetic condition. Also, the professional who’s helping care for the child can certainly find resources and give referrals.

Often it is good to reach out to a genetic counselor because the genetic counselor can answer questions about whether or not the diagnosis could be related to a genetic condition and will know whether further steps should be taken as far as seeing a medical geneticist and risks to other families members. Nurse practitioners are also very savvy as to referrals and resources.

Disability Scoop: How important are friends and family in dealing with a diagnosis? What about support groups, therapy?

Louise W. Gane: Friends and groups are just incredibly important. Friends are invaluable because friends can provide respite and emotional support. Just being there as a friend is invaluable. Reach out and find someone who knows what you’re going through and understands it. That’s a huge relief to parents of a newly diagnosed child. You cannot in life, whether you have a child with a disability or not, get along without friends and support systems in place. This is even more true when a child has a disability.

The Journey: A Parent Comes to Terms with Her Daughter’s Disability

When Deborah, my eldest daughter, was diagnosed with epilepsy and {cognitive disabilities}, I read books and attended meetings and conferences that described parents of children with disabilities as being “in a state of chronic sorrow.” That bothered me. I felt that if my husband died or if I developed cancer, there would be a period of intense grief and sorrow. My living patterns would be permanently altered, but I would not be forever in a chronic state of grief.

The writers and presenters used words such as “denial,” “guilt,” “anger,” “bargaining,” “sorrow,” and finally “acceptance” to describe “stages of grief ” through which I was supposed to pass. They said the pattern was the typical reaction to becoming the parent of a child with a disability. Their language, however, did not fit what I was experiencing My feelings did not come in distinct phases, nor were they predictable. Rather they seemed entwined, their boundaries blurred.

Instead of framing the experience of having a child with disabilities as chronic sorrow, I believe I managed it as I would any unexpected and life-altering event.

There was:

• Initial reaction

• Extreme feelings

• Refocusing

• Integration of the situation into my life

• Initial reaction

Research tells us that in times of high stress (fire, accident, or storm) 15 percent of the people can take positive action, 15 percent are unable to act, and 70 percent exhibit odd behavior.

My actions encompassed all three categories:

I told my family and friends about my daughter’s disability. I sought information about {cognitive disabilities} and epilepsy. My husband and I talked about it a great deal. I was unable to act. I went to bed and pulled the covers over my head to shut out the world. I tried to forget. I bargained with God to remove the disability. I behaved strangely. I could not say the disability words. I didn’t want to see anyone. I cried a lot. I did not want to talk to anyone other than family about the subject.

Extreme feelings

I experienced a gamut of emotions: I was pessimistic, fearful. How could I be a good parent? What if I didn’t care for Deborah in the right way? Did we have enough money to support her? What was the meaning for our entire family? I saw my daughter through a limited lens; I saw only her differences. I was optimistic. Maybe the experts were mistaken. Surely there would be a cure in a few years. I was sorry for myself. Why did it happen to me? How could I tell her grandparents? Would she live with me forever? Looking back, my sorrow was not really about

Deborah’s birth. Instead my feelings were about myself and my concern about my ability to be the parent of a child with disabilities—a responsibility I did not understand.

Refocusing

As I lived with the reality of Deborah’s diagnosis, I began looking at Debbie and the world in a new way. She was a delightful child, happy most of the time and very loving. She learned but in a different way. I had new possibilities, redefined my expectations for her, and found joy again in her accomplishments. I also developed a new perspective of myself: I was a parent who had

a better understanding of Deborah’s needs and the meaning of disability in her life and

a parent who was able to manage the situation most of the time.

Integration, the final state

The notion of having a child with a disability became integrated into the fabric of my life and the life of our family. I still experienced uncertainty and at times I was fearful, but on most days I lived life looking forward, instead of continually glancing back to what might have been.

As I became accustomed to living with Deborah’s disability, I found that a quotation from an unknown source described my perspective: “Life is not a problem to be solved, but a

mystery to be experienced.”

Virginia Richardson, nationally recognized advocate for families of children and young adults with disabilities, is the parent training manager at PACER. 

The Teachings of Jon

We do not condone the use of the "R" word, but thought the message was bigger than that....

Behavior as communication

If your child struggles with behavioral issues, we suggest having someone look at communication issues at the same time, especially if the child doesn't have effective communication. Many times the two issues are linked and without addressing both of them, it will be challenging for the child to be successful.

This article explains the relationship in greater detail and offers some suggestions. It is specific tothose with autism, but would apply for any disability where communication is an issue.

Autism: Communication and Behavior Links By Linda Fielding

An inability to effectively use communication can lead to challenging behaviors. Recent literature substantiates the premise that a relationship exists between communicative intent and the function of the behavior. The function of a challenging behavior can usually be determined to be related to one or more of four specific communicative purposes: 1) to obtain attention; 2) to escape or avoid a request, activity, or person; 3) to procure an object (or tangible); and/or 4) to receive sensory feedback (Durand, 1990).

Programming practices for students with autism have also begun to reflect this linkage. Less emphasis is being placed on developing strategies to "manage" behavior while more attention is focusing on interpreting the purpose of the behavior and providing students with additional opportunities to enhance their communicative abilities. It is important to consider that no matter what the age of the individual with autism, teachers can actively plan programs (and offer parents suggestions) which will encourage communication, and perhaps, decrease the occurrence of inappropriate behaviors.

Koegel and Koegel (1995) have suggested four strategies that can be implemented throughout the school day to assist with the development of communication in individuals with autism. The remainder of this article profiles these strategies and provides illustrations of each.

1. Increase awareness of and respond to all communication attempts. In order to accomplish this, teachers must begin to interpret all student actions (and behaviors) as having communicative intent. For example, Sam (a student in your classroom) is sitting on the floor. You ask Sam to go get his coat so the class can go outside. Sam grabs his knees and begins to rock. As opposed to labeling Sam as "noncompliant", perhaps we need to consider that Sam may be telling us that he does not want to go outside today.

2. Teach students with autism that their actions have distinct consequences associated with them. No second guessing the individual! He or she must learn that communication can be used to influence the environment. Kate is moving through the lunch line in the school cafeteria. The vegetable choices for the day are green beans (which she hates) or french fries (her favorite food!). Kate selects the green beans. Instead of being prompted to again choose which vegetable she wants, Kate should be given the green beans. If she screams or pushes them away she has communicated that she does not want them and should then be given an opportunity to choose another item.

3. Provide positive supports and learning opportunities. Identify and arrange communication opportunities in natural contexts throughout the school day. Sabotage the environment! Create circumstances which stimulate communication. For example, hide Sarah's favorite drum in the closet, "forget" to pour Justin's juice at snack time, "lose" Tommy's knapsack before it's time to go home, or give Ashley the incorrect amount of change needed to purchase a soda from a vending machine.

4. Encourage interactions by providing individuals with autism the opportunity to socialize in environments with age-appropriate peers. The experience of participating in a social group is essential to developing social-communicative skills. Exposing children with autism to situations in which good communication and social skills are modeled may assist with developing more appropriate interactive behaviors. Engaging in communicative interactions helps to teach students that positive outcomes can occur through communication.

By employing these communication strategies, will all challenging behaviors in individuals with autism be eliminated? Probably not. But by increasing a student's understanding and use of communication, we can reduce his/her use of challenging behaviors to "get their message across".

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The BIP: behavior intervention plan

An effective behavior intervention plan (often called a behavior support plan or positive intervention plan) is used to teach or reinforce positive behaviors. Typically, a child’s

team develops the plan. It usually includes:

• skills training to increase appropriate behavior

• changes that will be made in classrooms or other environments to reduce or eliminate problem

behaviors

• strategies to replace problem behaviors with appropriate behaviors that serve the same function for the child

• supports for the child to use the appropriate behaviors

A positive behavior intervention plan is not a plan to determine what happens to a student who violates a rule or code of conduct. That would be more appropriately called a discipline plan or a punishment plan.

Examples of behavioral intervention strategies

Schools use the following common strategies to help reduce problem behaviors and teach children positive behavioral skills.

Stop, Relax, and Think teaches children how to think about the problem they are having and find a solution. Children learn the steps:

1. Define the problem.

2. Decide who “owns” the problem.

3. Think of as many solutions as possible to solve the problem.

4. Select a solution to try.

5. Use the solution.

6. Evaluate its success.

After children understand the steps, role-play and practice can help the process become habit. Helping children to recognize their own response to stress (clenched hands, voice tone, etc.) may become part of the instruction needed to use this strategy effectively.

Planned ignoring is useful in stopping behaviors that are annoying. For example, it is useful for students who yell or interrupt the class to attract the teacher’s attention or that of

students who are not prepared for class. Planned ignoring acknowledges that children’s problem behaviors serve a function. If the purpose of a problem behavior is to gain adult attention, then not providing attention means that the behavior does not work. The behavior lessens over time

and eventually disappears. Ignoring nonserious behavior behaviors, however, especially if the behaviors interrupt what the adult is doing. Also, attention-seeking behaviors

often get worse before they eventually go away.

Planned ignoring is not suitable for behaviors that are extremely disruptive. It also may not work if other children laugh at the problem behaviors the adult is trying to ignore.

Some behaviors, including those that are unsafe or that include peer issues such as arguing, can grow quickly into more serious behaviors. It may not be possible to ignore these kinds of behaviors. Planned ignoring should never be used for unsafe behaviors. As children grow older and want attention more from their friends than from adults, planned ignoring is less useful.

Preventive cueing (also called signal interference) lets a child know when he or she is doing something that is not acceptable. Teachers or parents can frown, shake their head,

make eye contact, point to a seat for a wandering child, or snap their fingers, to let the child know he or she needs to pay attention or to stop the problem behaviors. When

using preventive cueing it is important not to smile or look pleased with a child. Preventive cueing may be used in steps, depending on the behaviors and how often they occur or

how serious they are. For instance, a hand motion may work the first time or two, but it may need to be combined with eye contact or a shake of the head for the next offense.

Proximity control means that a teacher or adult moves closer to the child in a gentle way. If the teacher does not get the child’s attention by using cues, then he or she may move

closer to the student or give the lesson while standing near the child’s desk.

Touch control, meaning touch that is not resisted, is a nonverbal guided intervention. It is used to direct a student toward positive behavior. For example, a teacher may gently

place a hand on a child’s shoulder to steer the child back to his or her desk. Touch control should never be used with children who react angrily or when school policy does not permit its use. If a child’s records show that he or she has a history of violence, has been abused or maltreated, is anxious, or has a mental illness or psychosis, touch control should not be used, unless specifically agreed to by a physician or psychologist.

Positive phrasing lets children know the positive results for using appropriate behaviors. As simple as it sounds, this can be difficult. Teachers and parents are used to focusing on

misbehavior. Warning children about a negative response to problem behaviors often seems easier than describing the positive impact of positive behaviors. Compare the difference

between positive phrasing and negative phrasing: Positive phrasing: “If you finish your reading by recess, we can all go outside together and play a game.” Negative phrasing: “If you do not finish your reading by recess, you will have to stay inside until it’s done.” Positive phrasing helps children learn that positive behaviors lead to positive outcomes. This, in turn, can help them gain

control of their behaviors.

from PACER

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