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PLUK News June/July 1998 Volume 12 Number 11/12
	PLUK News is published by Parents, Let's Unite for Kids, a private nonprofit organization founded in 1984 by a group of parents of children with disabilities and chronic health problems. Subscriptions are free to parents in Montana and $15/year for other interested individuals. PLUK News is available in alternative formats. Editor: Katharin A. Kelker PLUK Office 516 N 32nd St Billings MT 59101 1-800-222-7585 in MT; 406-255-0540 (voice/TT); 406-255-0523 (fax) E-mail: plukinfo@pluk.org
The contents of this newsletter were developed under a grant from the Department of Education. However, those contents do not necessarily represent the policy of the Department of Education and you should not assume endorsement by the Federal Government. Products and services described herein are not endorsed by PLUK, the U.S. Department of Education, or by the Federal Government.

Article Index

Visit PLUK on the WWW IDEA '97 Regulations Still Not Ready Congress May Limit Disability Benefits Hehir Clarifies Parent Involvement Literacy Funding Tied to Special Education Retention Becomes a Political Issue Higher Education Topic for Congress Why Some Children Can't Read Suggestions for School Readiness Praise the Doctor SPAM Makes Recommendations Pros and Cons of Drug Holidays Bicycle Genius Parent Sets Record Straight on Braille Getting Out & Still Being a Good Parent Sending a Healthy Child Off to College

ASK PLUK??? Survey of Parents on Behavioral Issues Parent Corner Workshop on Behavior Management Rules for Kids Watching TV Parents' Essays Wanted Prevalence of Fetal Alcohol Measured Wound Glue Approved for Use Neonatal Origin of CP Social Skills for Children and Youth Resiliency Traits How Would You Respond? Do's & Don'ts of Dealing with "Angry" People Angus Reviews Recreational Software PLUK cyberNews HONOR ROLL

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Visit PLUK on the Web at: http://www.pluk.org

The PLUK Web site designed just for you--Montana families of children with disabilities--is loaded with features that will keep you abreast of the latest information and services. Join us at http://www.pluk.org for information about early intervention programs, language development, school readiness, scientific breakthroughs, disability-specific information (e.g., Down syndrome, attention deficit disorder, learning disabilities, sensory impairments, physical disabilities and emotional disorders), legal issues, parent-to-parent support, and much more.

On our Web Page you will find copies of PLUK publications that you can peruse; current issues of PLUK News and back issues as well; information on upcoming conferences and events; descriptions of disability services in Montana and how to access them; and a special feature provided by Janice Sand, our librarian. Janice explores the World Wide Web for you and locates great web sites that provide cutting edge information on disability issues.

The PLUK Web Page is edited regularly and featured information is refreshed and changed so that the Web Page is as current and accurate as possible.

In the future, we plan to add interactive features on the Web Page so that children and family members can connect with each other and exchange information on-line.

Eventually, we will have the many of our resource databases including the TRIC/PLUK Library on-line so that you may access the materials in our collection through our Web Site.

We are excited about the possibilities for our Web Site and hope that you will be, too. If you have ideas about topics you would like to see on the PLUK Web Page, please let us know (e-mail: plukmt@wtp.net).

If you do not personally have access to the Internet, check with your local library, university or college branch, or school district to see if you would be able to have Internet access through one of these institutions. Some public libraries are providing free Internet access so check out the possibilities!

PLUK has developed its Web Page as one more avenue for people with disabilities and their families to have access to the information they need. Our commitment is to keep the Web Page simple, attractive, cost effective, Montana-oriented, and user-friendly. If you would like some help with how to access the Internet and specifically the PLUK Web site, please call the PLUK office at 1-800-222-7585.

IDEA '97 Regulations Still Not Ready

Even though IDEA '97 passed into law in June 1997, the regulations to implement the law are still in limbo--stalled by some of the same contentious arguing that occurred during the reauthorization process. Some members of Congress are still concerned about the "no cessation" clause which says that special education students who are suspended or expelled must still receive educational services.

On May 1, 1998, representatives from the U.S., Department of Education and congressional staff met behind closed doors to discuss special education policy.

Republicans criticized the Department's proposal to limit the use of 10-day suspensions without academic services to once per school year.

In revising IDEA, Congress said only that schools may move a disabled child to an alternative setting or suspend the student "for not more than 10 school days." However, the law does not include an annual limit or authorize schools to use such suspension each time a child misbehaves.

This closed door meeting was described as simply an opportunity to discuss proposed regulations in private. However, key Congressional leaders who participated in the bipartisan development of the IDEA legislation used the private meeting as still another opportunity to protest that numerous provisions in the draft regulations go beyond the bipartisan agreement that resulted in passage of the IDEA amendments. The concerns raised appear to mirror those raised during the IDEA legislative process by organizations representing school administrators and school boards.

The actual rule-making for IDEA '97 is supposed to be left to the Department of Education for completion. In the meantime, school districts are wondering when the final regulations will be available and whether they will ready before the next school year begins.

Congress May further Limit Disability Benefits

Adults and children with mental disabilities who rely on federal benefits continue to be targeted by the House Ways and Means Committee's Human Resource Subcommittee. Subcommittee leaders are circulating draft amendments to the Supplemental Security Income (SSI) disability program that would make it more difficult for adults with mental impairments and children to qualify for disability benefits and would reduce the level of payments to certain individuals.

Stricter Criteria for Children

The subcommittee has significantly changed an earlier proposal that would have tightened the standard for disability benefits to require that all adults and children have a "marked" limitation in at least two areas of functioning. This provision would now cover only children who apply for benefits in the future. Despite its protection of adults and of children who are now on the rolls, this provision represents yet another inroad on the children's SSI program--already drastically cut by Congress in 1996 as part of welfare reform. The impact of this change would fall primarily on children with mental retardation, cerebral palsy and epilepsy.

Other Proposed Provisions

Other proposed changes to the SSI Program include:

• Applying a family cap by reducing the payment of two SSI recipients who live together by 25% and reducing the payment of 5 or more recipients in the same household by 40%;
• Prohibiting asset transfers (including trusts) that facilitate SSI eligibility. Transfers made within three years of application to receive SSI benefits would be treated as a financial resource of the person making the transfer. This proposed provision would affect individuals in Montana who are making use of the Self Sufficiency Trust established by state statute.

Hehir Clarifies Parent Involvement

Many schools have in-building teams of teachers and administrators who review the cases of children who are not succeeding in the classroom and make recommendations for strategies to help such students in the regular education process. These in-building regular education teams do not have to include parents, according to Tom Hehir of the Education Department's Office of Special Education Programs, unless the team proposes to evaluate the child for an undiagnosed disability.

Mr. Hehir says that when student assistance teams begin discussing whether the child's educational problems are linked to a disability, "that's when you need to begin parent involvement." It is each local school district's responsibility to notify parents when there is a concern that a child may have a disability.

Tom Hehir made these remarks while responding to questions from directors of special education at the Office of Special Education Programs' annual conference in Washington DC. According to Hehir, IDEA '97 requires school districts to include parents in any group that makes placement decision for their child. However, parents do not have to be included in discussions among professionals that are not part of the special education process or a process to consider evaluating a child for special education.

Congress has already voted to increase special education funding during the last two years up from $3 billion in fiscal 1996 to $4.53 billion in FY 1997. But President Clinton proposed in his 1999 budget request to level-fund IDEA programs.

Literacy Funding Tied to Special Education

The Senate Labor and Human Resources Committee has approved legislation designed to enhance reading and literacy skills in children, but made funding for the initiative contingent upon significant annual increases in special education monies through fiscal year 2001.

The legislation (HR 2614), which passed unanimously, is intended to "improve the reading and literacy skills of children and families by improving inservice instructional practices for teachers who teach reading, to stimulate the development of more high-quality family literacy programs, to support extended learning-time opportunities for children, to ensure that children can read well and independently not later than third grade, and for other purposes."

Lawmakers earmarked $210 million annually over three years for the program, but said such funding would only be authorized if special education dollars increase by $500 million a year through fiscal year 2001.

Retention Becomes a Political Issue

Politicians from governors to the President of the United States are taking public positions against social promotion, the practice of moving children to the next grade even if they have not mastered the material in the previous grade. Social promotion has been widespread in the U.S. schools for at least 20 years. Its rationale is to avoid damaging the pupil's sense of self-worth and to assume that, if promoted, the child can catch up. But school officials and politicians are increasingly saying that social promotion, though well intended, has been an academic disaster. President Clinton is on record against social promotion, as is the American Federation of Teachers. California Gov. Pete Wilson is pushing the state assembly to prohibit it by law, and Texas Gov. George W. Bush launched his 1998 reelection campaign with a vow to abolish social promotion in his state's schools, starting with the third grade.

The difficulty, of course, with all this political rhetoric is that there is no evidence that merely retaining children in grade, instead of promoting them, will help children to be more successful academically. The real challenge is figuring out ways to ensure that children who are failing subjects in school will get the academic support they need.

Neither retention nor social promotion addresses the problems faced by children who find school learning difficult. There is no evidence that expanding grade retention or ending social promotion will address the learning problems of children with low average intelligence, language impairments, limited experience, emotional problems, or specific learning disaiblities. Only a decade ago, many school systems ended social promotion, instituted promotional standards, and then discovered the sad truth that flunking did not solve the problem.

The real problem is a lack of school programs designed to meet the needs of children who have academic difficulties. Realistically, there are always going to be students who learn material more slowly because they have low average intelligence and need more time and practice to assimilate new material. In addition, there are children who have academic difficulties because English is a new language to them or because they have learning disabilities which have to be addressed by teaching them to read, write, and calculate in very different ways. The weight of evidence of literally hundreds of studies shows that retaining children does not produce higher achievement. In the long term, retained children remain behind and retention substantially increases the likelihood that the child will drop out of school.

Retention may also be an expensive fad that wastes taxpayer monies. Grade retention is estimated to cost as much as $13,000 per child per year. A more cost effective way of addressing the needs of children who have difficulty in learning would be to provide daily intensive tutoring by qualified personnel; this intervention could cost half as much as retention and, unlike retention, intensive tutoring reliably has been shown to enhance achievement. The evidence shows that slow learning students and students with learning disabilities need greater amounts of better, more intensive teaching than other students in order to meet the same basic achievement standards. Retention in grade, on the other hand, offers nothing but the same instruction which failed to work the first time.

Rather than flunking students, Dr. Sylvia Richardson, Chair of the National Joint Committee on Learning Disabilities, suggest that "schools should try to provide high quality instruction for children who find learning difficult." According to Dr. Richardson, "flunking penalizes children for the failure of school systems to develop effective extraordinary instructional plans for children who need more and better instruction if they are to succeed. More of the same just does not work."

The National Joint Committee on Learning Disabilities (NJCLD) represents ten national organizations consisting of more than 350,000 parents and professionals concerned with children with learning disabilities. The Joint Committee recommends that instead of retention, school districts should consider providing:

• High quality instruction for all students;
• Early intervention for students who have difficulty learning;
• Smaller class size to facilitate the provision of high quality instruction;
• High quality professional development for all teachers;
• Extended instructional time (e.g., summer school, extended school day or school year);
• The opportunity for qualified tutorial support for students who need it.

Higher Education Topic for Congress

Action on reauthorization of important federal student aid programs, including the TRIO Student Support Services Program and the Pell Grant Program, was delayed until the current session of Congress. If Congress does not act this year, there could be significant increases in the cost of student loans in the upcoming fall semester and colleges and universities could lose the funds they use to provide support services to students with disabilities who are attending college.

Why Some Children Can't Read

Reading is a complex task involving vision and hearing, brain processing, experience, intellectual potential and many other factors. Parents and teachers have long been puzzled about why some children learn to read so easily and others struggle with the process despite having adequate intelligence, good instruction, and family support.

For many years now, Sally and Bennett Shaywitz, codirectors of the Yale Center for Learning and Attention, have been saying that some children have a hard time learning to read because their brains do not function the way the brains of good readers do. Recently, with the help of functional magnetic resonance imaging (MRI), the Shaywitzes can prove their theory. The two researchers designed a series of tasks readers perform as they sound out words: seeing the sequence of letters on the printed page, transforming the visual image into a sound or phoneme, and combining phonemes to make words. Then they recorded MRI images showing where oxygen-enriched blood--a sign of activity--concentrated in the brains of 29 adults with dyslexia and 32 good readers as they performed those tasks.

The scans record when the subjects tried to sound out nonsense syllables. In individuals with dyslexia, there was more activity at the front of the brain than found in the good readers. In good readers, the images show that good readers use areas in the primary visual cortex, the angular gyrus, and the superior temporal gyrus at the back of the brain. These areas were not activated in the subjects with dyslexia. The dyslexic pattern of more anterior activity and less posterior activity, according to the Shaywitzes, may be the "neural signature" of dyslexia. For more details of this study, see the March 3rd edition of the Proceedings of the National Academy of Sciences.

Suggestions for School Readiness

Parents can do many things that will help their children be better prepared for the demands of school. Here are a few suggestions:

• Encourage language by reading, singing songs, and talking about what you are seeing and doing together;
• Limit television watching to less than one hour a day of appropriate programs and watch with your child;
• Encourage interactive play as a way of learning social behavior;
• Encourage independent behavior, curiosity, emerging autonomy, and feelings of competence;
• Model language that is grammatically correct and respectful;
• Offer your child acceptable choices to promote a sense of competence and control;
• Read interactively with the child (e.g., "Show me the duck in the story." "What is the story about?")
• Encourage your child to tell you about school, friends, observations;
• Take your child's questions seriously and answer them;
• Visit parks, museums, and places of historical or cultural interest.

Praise the Doctor

Some parents of children with disabilities have strong complaints about doctors they have encountered who have uncaring, insensitive, or unprepared to deal with disability. Many others, however, have had great experiences with doctors who have been helpful and supportive. The Special Child Magazine is looking for a great doctor that you can tell others about. They have a "Praise the Doctor" section that was created so parents can refer other parents to excellent physicians. If you know of a great pediatrician, neurologist, gastroenterologist, family practice doctor who does a great job for children with special needs, let Special Child Magazine know about him or her and what your experiences have been. You can contact the magazine at: <<editor@specialchild.com>> or contact PLUK and we will pass the information along.

SPAM Makes Recommendations

In April 1997, a Task Force of sixty-four individuals convened in Helena to develop a strategic plan for the Developmental Disabilities System in Montana. With the support of the Developmental Disabilities Planning and Advisory Council (DDPAC), this Task Force brought together consumers, parents, advocates, service providers and State employees, representing all parts of Montana.

This planning process became widely known as Strategic Planning Across Montana or SPAM.

Between April 1997 and May 1998, the Task Force met five times. At the first two meetings, the following statements of mission, vision, and values were developed:

DEFINITION

The Developmental Disabilities System is a private-public partnership of services and supports for individuals with developmental disabilities in Montana. It includes consumers, their families, service providers, advocates, and funders. It includes, but is much larger than, the Developmental Disabilities Program of the Montana Department of Public Health and Human Services.

MISSION

To support Montanans with developmental disabilities in living and working as citizens in their communities.

VISION

A lifelong array of choices for quality family and individual supports which are consumer friendly, flexible, and accessible on an equal basis and which foster dignity and respect.

VALUES

We value--

• the uniqueness of every individual
• dignity and respect for everyone
• equal opportunity for risk and reward
• the right to expect the same things out of life as everyone else
• self-determination; the opportunity to make life choices
• informed choice so that people can select what they need
• individual responsibility; everyone does what they say they will do
• accountability for effective use of community resources and for individual actions and their consequences
• health and safety.

RECOMMENDATIONS ADOPTED BY SPAM

1. Increase appropriation for expansion of services to address in priority order:
   1. people on the waiting list who receive no services;
   2. students about to graduate from special education; and
   3. individuals at risk of losing services due to transition requirements (e.g., children leaving Part C programs, children entering school, dually diagnosed individuals, persons living in institutions recommended for community placement, and seniors).
2. Provider rate increase of 2% per year.
3. Direct care staff salary increase of 1.6% per year.
4. Funding for transportation
   1. vehicle replacement;
   2. adequate reimbursement rates;
   3. expansion of hours, routes, and number of people served; and
   4. expansion of transportation options.
5. Increased spending authority for DPHHS.
6. Individualized plans for persons at Eastmont.
7. Lifespan respite.
8. Continued involvement of families with DD adults.
9. Arrangement of medical and other care prior to new placement.
10. Crisis-intervention teams and facilities.
11. Design and implement an effective transition from school to work.
12. Employment and business development.
13. Supported retirement.
14. Public awareness.
15. Teacher preparation concerning disabilities.
16. Development of natural supports.
17. Continuation of Part C entitlement.
18. Home investment/ownership for DD adults.
19. People with disabilities helping families to promote families of persons with disabilities hiring individuals with disabilities.
20. Individualized supports based on a futures planning approach to identify an individual's needs, desires, and resource.
21. Funding to support the People First organization.
22. Prevention of abuse and neglect.

For more information about the SPAM recommendations, contact DDPAC at 406/444-1334.

Pros and Cons of Drug Holidays

Some doctors recommend that their patients who take Ritalin or other stimulants for ADD stop taking the medication over the summer. Other physicians continue the medication because it seems to help some children to cope with social situations during the summer. Each of these points-of-view has some merit. Here are the pros and cons of "drug holidays."

Reasons to Take a Drug Holiday Over the Summer

• There is no evidence that medication improves sport skills or acquisition of sport skills. Benefit in attention deficit without hyperactivity is also difficult to prove.
• Evidence also is lacking that medication enhances social abilities. Medication does not solve all ADD children's problems. Medication can help with paying attention, but it cannot make children be "good."
• The need for medication is at least as likely to stigmatize a child as the behavior that results when he or she is off medication.
• There is no evidence that taking Ritalin decrease accidents, though this may occur.
• Hyperactivity can aggravate parents, bosses, and family friends. But having to pay more attention to the child when he or she is off medication may be beneficial.
• Some children need a drug holiday so that their normal appetites return, they eat more, and they have an opportunity to grow physically.

Reasons NOT to Take a Drug Holiday Over the Summer

• Continuing to take medication during the summer may help a child with ADD to be safe while participating in sports. If the medication assists with concentration, it may help a child to attend to directions and be better prepared to follow the "game plan."
• Medication reduces impulsivity and overactivity. The child who is "out of the social loop" because he or she is inattentive and distracted misses the interpersonal cues necessary for smooth interactions with peers and adults. With medication, the child may attend better to social cues and be better able to practice skills of making a friend.
• Anything can stigmatize a child who perceives himself or herself as different from peers. Ostracism by others can be lessened by giving medications when no one is around to observe, teaching the child about the disability, empowering the child to learn to compensate for this disorder.
• Paying more attention to children's needs and not relying on medication alone leads to a better outcome, but an impulsive, overactive, and overreactive child can frustrate the most well-intended efforts of parents.

So the decision about whether or not to give medication during the summer depends upon a number of factors: (a) how the child reacts to medication, (b) what other supports are in place to help the child manage ADD, (c) what the demands are in the child's summer environments; and (d) the parents' ability to help the child with behavior management and socialization.

Bicycle Genius: How Do You Define Success?

A teacher who wishes to remain anonymous sent us this "cautionary" tale about Dennis, a young man with learning disabilities who never liked school but had a passion which his parents' supported.

Dennis is a genius at fixing bicycles. He has always liked working with his hands. In fourth grade, some of his best friends were striving for A's. But not Dennis. He was taking his bicycle apart and putting it back together. By junior high, his mind was constantly turning over with wheels, sprockets, hand brakes, and ten-speed drives. During his high school years, he made his spending money fixing bicycles.

All through school, Dennis was dutiful about doing his school work, but in terms of grades, he just got by. Not only was Dennis not a star student, he also did not participate in sports or any school-related activities.

So it was no surprise that, by most standards, Dennis was not a success in school. His parents were both teachers who valued education and originally had high hopes that Dennis would do well in school and go to college, but early on Dennis' parents could see that he was different, and they had to have different expectations for him.

Today as a young adult, Dennis is a high school graduate who owns and manages a successful bicycle shop. Bikes all over the place! New ones, used ones, broken-down bikes waiting for his work. No big deal? It is for Dennis. He lives in an area where bicycling is popular and he is highly respected for his skills and his reliability. He loves his work, supports himself well, and feels a part of his community.

His parents always told him, "We'd like you to graduate from high school. But we're going to get off your back about grades and having a good record and going to college. We're proud of the way you can do things we can't do. More than anything we want you to be you."

Dennis counts himself a success and his parents do, too.

Parent Sets the Record Straight on Braille

Marty Greiser, a Dillon parent of a son who is blind, is the secretary of the National Organization of Parents of Blind Children, a division of the National Federation of the Blind (NFB). Marty writes, "I have accompanied representatives from the Montana Association for the Blind to Washington D.C. along with more than three hundred individuals representing more than forty-eight states in 1995, 1996, and 1997 to lobby for, among other issues, a strong Braille literacy provision in the final reauthorization of IDEA. We also participated in and contributed greatly to the language of this provision which IDEA now contains. No other group of or for the blind has contributed the time, effort, resources or magnitude of input into this issue as did the NFB."

Through personal experience, Marty knows the effort that it takes to influence national legislation, and he also knows the satisfaction of being able to put into law something that is vitally important to people who experience blindness. According to Marty, "the strength of this provision lies in its language: 'The IEP team shall...provide for instruction in Braille..' This makes Braille the default medium of literacy for blind children."

Marty rightly notes that the new language in IDEA '97 requires that blind children will receive instruction in Braille, unless the IEP Team rules out the use of braille for a particular child. As a result of this change in law, every blind and visually impaired child's IEP should begin with Braille included. In other words, the decision to be made by the team is on "ruling out" rather than "ruling in" Braille. It is significant that the law uses the word "provide," rather than "consider the need," for Braille--leaving no doubt that Braille is the preferred medium for teaching literacy to blind children.

Also according to IDEA '97, if a dispute over including Braille instruction arises and progresses to an administrative hearing, Braille instruction must be provided until that hearing resolves the dispute.

The reason that Marty and other parents like him have worked so hard to get this language into the law is that, just as with all children, blind children need to develop literacy and for most blind children Braille is the medium which allows them to become literate. If a blind child does not have the opportunity to learn Braille, preferably at an early age, the child is in effect being denied the chance to become literate--a basic purpose of public education.

Thanks, Marty, for you hard work and for setting the record straight about the inclusion of Braille in the IEP!

Getting Out of the House and Still Being a Good Parent

One of the hardest things for many parents of children with disabilities is finding time for themselves. Parents say that they feel guilty about leaving their child, or they sometimes feel that no one else can care for the child properly. In the extreme, some parents limit their social life to such a degree that they lose friends and greatly restrict their own opportunities for leisure and rest.

Free time is essential for parents of children with special needs, but it can work only when certain conditions are met.

• Scheduling. The duration and frequency of free time are not as important as the fact that it is scheduled. Coping with demanding tasks is easier if you know when a break will come. Not knowing makes the task seem more difficult.
• A competent surrogate. Parents must know that the caretaker who stays with the child is experienced, sensitive, responsive, and able to cope with the child's behavior and special needs. Strangers or immature baby-sitters will not do because parents cannot focus on their own needs if they are worrying about the child while they are out.

  Some parents like to spend time with the baby sitter and the child as a dry run for an actual night out. When the parent has an opportunity to work with the baby-sitter, then the parent can feel more confident that the sitter has the skills necessary to manage the child well.

  Some parents hire two baby-sitters so that the sitters can help each other care for the child. This option is obviously more expensive but may be worth it in terms of peace of mind.

• An established time to return. In order to do the job well, the surrogate caregiver needs to know that the parent will be back at the promised time
• The ability to forget the child for a while and really enjoy the time out. The greatest obstacle to implementing free time is the feeling that focusing on one's own pleasure is not okay. Parents must allow themselves to believe that free time for them is necessary and beneficial to the child and the entire family as well. If parents cannot let go and enjoy time away, it is sometimes helpful to invest in personal counseling to resolve guilty feelings.

Sending a Healthy Child Off to College

When sending a child with disabilities off to college, there are many things to think about and do. In the rush to get ready, sometimes health needs are overlooked. Here are some health care-related reminders:

• Make sure your child has an annual physical this summer before leaving for school.
• Find out how your child is supposed to access health care on campus and what services are available.
• Check with the college well in advance for any requirements as to medical history or proof of immunizations.
• If your child wears glasses or contacts, schedule an eye appointment to make sure that the prescription is appropriate. Be sure that child has a spare pair of glasses to take to college.
• Have any prescription medications filled before your child leaves town.
• Consider a supply of multivitamins. While maintaining a proper diet with adequate exercise and rest will help your child stay healthy, your child may not set aside the time for such activities at college.
• Make a list with your child of the over-the-counter medications that are helpful for minor stomach irritations or diarrhea.
• Discuss with your child the physical symptoms that warrant getting medical attention.
• If your child is still covered on your health insurance, make sure that he or she carries a health insurance identification card.
• Make a first aid kit for your children. Some of the items you may want to include are:

  -Thermometer

  -Band-Aids

  -Acetaminophen or Ibuprofen

  -Ace bandage

  -Hot and cold pack

  -Cough syrup

  -Throat lozenges

  -Antacids.

ASK PLUK???

The following questions are recent inquiries received by PLUK staff.

Q: Can a school district refuse to conduct a special education evaluation when a parent requests one?

A: Yes. A student should be tested for special education eligibility when the school has reason to suspect that the student may qualify. This involves two inquiries: Do we suspect that the student may have a disability that qualifies under IDEA? Do we suspect that the student may need specially designed instruction or related services? If the answer to either question is no, the school can refuse to conduct the testing.

The refusal to conduct an assessment is one of those events which triggers a duty for the school district to provide written notice to the parent. The school district cannot simply ignore the parent. The school must respond to the request for an assessment by doing the assessment or by providing written notice with a full explanation of why the assessment is not being done.

At PLUK, we always recommend, when a parent wishes to request an assessment, that the parent put the request in writing. That way the parent has a "paper trail," proving that the request was indeed made.

If a school district refuses to do an evaluation, the parent can request a due process hearing in which the parent would ask the hearing officer to order the district to conduct the assessment.

Q: We have requested a functional behavioral analysis of our son's behavior because we have had so many complaints about him, and the situation seems to be getting worse. Our request has been denied because the special education director says that functional behavioral analyses are not required yet by the law, and he has no one trained to do such an analysis. What should we do?

A: Behavioral observation and analysis have always been potential parts of the assessments done for students suspected of having a disability. You certainly can ask for an assessment of your son's behavior so that the IEP Team can develop an appropriate plan to modify his unacceptable behavior. If the school district is not prepared to do such an assessment, ask for an Independent Evaluation at school district expense. Call the PLUK office for a list of individuals who are qualified to do behavioral assessments.

Q: Our son who is deaf is an excellent wrestler. Next year he will be in high school, and he would like to participate in wrestling at that level; however, we do not think he can be successful in "stiffer" competition unless he has an interpreter to sign directions for him and provide signals from the coach. We have been told informally that the school district will not provide an interpreter under any circumstances because it would cost too much money. Our son really has athletic potential. Is it true that an interpreter is out of the question?

A: No, it is not true that an interpreter is out of the question. Section 504 of the Rehabilitation Act has been found to require school districts to provide nonacademic and extracurricular services and activities in such manner as is necessary to afford students with disabilities an equal opportunity to participate. For example, in Lambert v. West Virginia State Board of Education, the school district was required to provide an interpreter to a student athlete who is deaf because without an interpreter she was dismissed from the basketball team for not following directions.

If your son cannot compete in wrestling unless he has an interpreter, he certainly is entitled to the services of an interpreter as part of his IEP. As you are writing the IEP for next year, be sure that it includes a statement that your son will need an interpreter in order to participate in wrestling. If the IEP Team is unfamiliar with Section 504 or its requirements, contact the TRIC/PLUK Library for legal cases that will demonstrate school district responsibilities for providing access to extracurricular activities for students with disabilities.

Q: I took my son to a screening for kindergarten for next fall. We were told that his test results show that he is not ready for kindergarten yet. Our son will be six in July. We are really hesitant to keep him out of school. He is a big boy and will certainly tower over other kindergartners if we wait a year and send him to school when he is seven. What shall we do?

A: Even in the best of circumstances, some children are not ready for kindergarten at age 5 or 6. Some educators recommend delaying school entry for those children until they are older.

Unfortunately, that is not a strategy that is likely to work because the child whose entry is delayed will simply remain in the same environment that failed to produce readiness in the first place.

Research on school entry is showing that difficulties associated with early school entrance (e.g., entering "too young") tend to disappear by third or fourth grade. On the other hand, students who are older than their classmates because their entry was delayed have higher rates of behavior problems and health-risk behaviors, including substance use in adolescence.

Because of potential problems with being "too old" due to late school entry, the educational trend is to recommend that children enter school along with their same-age peers, although some may require extra help or support to be successful in kindergarten. Some may even require placement in a special classroom or program.

Why don't you meet with the kindergarten teacher or whoever gave the readiness test and find out specifically the areas where your son is not showing that he is ready for kindergarten. Indicate to the teacher that you want to keep your son with his same-age peers, but you would like to see what kinds of supports or enrichment might help your son overcome some or all of his readiness problems.

Overcoming the lack of school readiness requires intensive efforts by parents, children and teachers. Let the teacher know that you will do whatever you can at home to help your son and that you are hoping the school will provide the educational enrichment or special programs that your son may need to be successful.

References

Boyer, E. (1991). Ready to learn: A mandate for the nation. Princeton, NJ: Carnegie Foundation for the Advancement of Teaching.

Byrd, R., & Weizman, M. (1994). Predictors of early grade retention among children in the United States. Pediatrics, 93, p. 481.

Gardner, H. (1991). The unschooled mind: How children think and how schools should teach. New York: Basic Books.

Q: Are children with brain damage more likely to be irritable and have trouble sleeping than other children? Our nine month-old daughter who has cerebral palsy cries almost constantly and sleeps fitfully. We are at our rope's end and need some rest ourselves. Can you help?

A: The simple answer to your question is: yes, children who have had brain damage are more likely to be irritable and there are a number of good reasons for that.

Agitation is common in children with brain injury and is usually transitory. If you are sure that your daughter is physiologically stable, then her irritability is likely to go away as she matures. However, sometimes medication is necessary to help the child get enough rest (and to give parents some respite as well).

Irritability in children with chronic severe brain swelling is more complex and requires considerable detective work. The behavior may be attributed to any of the following conditions:

• Exaggerated normal responses to hunger, gas from swallowing air, or pain from prolonged teething;
• Unrecognized ear or sinus infections;
• The effects of some medications like phenobarbital;
• Pain or discomfort caused by reflux or headache associated with a shunt, muscles spasms from spasticity, constipation or hip dislocation;
• Frustration from an inability to move or to communicate; or
• Unrecognized or untreated seizures.

It is important that you try to find out what may be causing your daughter's irritability. Review the possibilities with your child's doctor. Working with the doctor, you may be able to find ways that your daughter can be made more comfortable so that her crying is reduced. Your child's doctor may also want to refer you to a pediatric neurologist if the causes of her irritability are not readily apparent.

Q: I was so excited to learn that IDEA '97 specifically requires that positive behavior plans should be part of a student's IEP when behavior is an issue. My son has had behavior problems since he was very young. Now as an eighth grader, he has been in trouble constantly at school. But the measures taken at school to improve his behavior (e.g., detention, in-school suspension, Saturday School) have not been effective. When I asked for a positive behavior plan, the school staff acted as though they had never heard of such a thing. What does the law say?

A: One provision of IDEA '97 requires students' Individualized Education Program (IEP) teams to consider using positive behavioral supports whenever a student's behavior gets in the way of that student's own ability to learn or the ability of other students to learn.

Another provision requires the IEP team to assure, within 10 days after the student has been disciplined, that the student will receive a functional assessment of behavior and a behavioral intervention plan (if the student does not already have one).

If there is a plan in place, the IEP team must review and revise it, if there is need.

If your son is having behavior problems, you can certainly ask for a functional assessment of his behavior. This assessment should involve collecting information about when, where, and why challenging behavior occurs. A functional assessment should--

• Describe the challenging behaviors, including behaviors that occur together;
• Identify the events, times, and situations that predict when the challenging behaviors will and will not occur across the range of daily routines;
• Identify the consequences that maintain the challenging behaviors (what the person "gets out" of the behaviors like attention, escape, preferred items);
• Develop summary statements or hypotheses that describe specific behaviors, specific types of situations in which they occur, and the reinforcers that maintain the behaviors in that situation; and
• Collect directly observed information that supports these summary statements.

With the information from the functional assessment, the team can then write a plan to modify your son's behavior using positive supports, and reinforcers for appropriate behavior.

Q: We adopted a little boy from Korea who has been receiving speech therapy at school for the past two years. This year he attended kindergarten, too, but did not do very well. His kindergarten teacher is suggesting that there may be something wrong with our son. He does not appear to be learning English very fast and he is also having trouble learning letters and numbers? Is this normal for a foreign adoptee or should we be concerned that our son has additional learning problems?

A: Research on foreign adoptees raised in the United States shows that if the foreign adoptee is already speaking the original language, then acquisition of English should occur fairly quickly. If, however, the child is old enough to be speaking in the native language but is not, then the child may have a problem and should be referred for evaluation. In other words, if the child is old enough to be talking and is speaking neither his or her native tongue or English, then there is cause for concern.

Also of concern is the case when foreign adoptees begin to speak English in whole phrases or sentences, but seem to be parroting what they have heard without comprehension of what they are saying. This pattern suggests that the child might have a central auditory processing defect, which is common in children who have undergone an insult to the central nervous system.

Many young adopted children have had chronic ear infections and, because they were institutionalized, have lacked the stimulation necessary to acquire language. Some have experienced poor nutrition during crucial developmental periods and may have suffered mild brain damage because of lack of nutrients.

Lack of language, either the original language or rudimentary, meaningful English, is an indication of a problem that should be investigated further. Types of assessments to consider include: a hearing evaluation, cognitive testing, tests for learning disabilities, and speech/language evaluation.

Q: Our 10 year-old son who has learning disabilities does not really like team sports (e.g. soccer, baseball). Unfortunately, the boys his age are mostly involved in sports and our son feels very left out. Do you have any suggestions for how to get a shy LD child involved in activities that will be fun for him?

A: Many children with learning disabilities shine in the performing arts like music, dance, and theater which foster creativity and self-expression and boost self-esteem. Participation in the arts also provides the opportunity to work in a group to reach a goal, much as being on an athletic team does, but without the aggressive behavior team sports involve.

If your son does not want to be at center stage performing, he may enjoy some of the support roles like managing props, building scenery or handling the lights for theater productions. If he likes music, there are many avenues for pursuing that interest: playing an instrument, singing in a large or small group, or assisting with musical productions.

Investigate in your community to see if there are opportunities for your son to try something in the performing arts. Often in the summer, local YMCAs or city recreation programs provide music, theater, or art lessons that your son may enjoy.

Q: Are there ways of treating attention deficit disorder that don't involve medication? I've been hearing a lot about homeopathic approaches, but I don't know if they are safe.

A: Medication is certainly not the only or even the preferred treatment for ADD. Almost every month some new method for treating attention deficits receives publicity. The difficulty from the parent's point-of-view is figuring out which methods are likely to be helpful and which are not useful or are actually harmful.

The first rule of thumb is to be highly skeptical of treatments that are supported exclusively by anecdotal evidence (e.g., success stories told by a few). For example, no hard data support the use of acupuncture for attention deficits. Biofeedback, homeopathic approaches, and hypnosis remain controversial and require further scientific scrutiny.

While further research may shed light on these strategies, it is very unlikely that any one form of treatment will benefit the very diverse group of children who have attentional difficulties. Future investigations need to examine subtypes of children with attention deficits to determine which are likely to benefit from a particular treatment. Children with academic problems and children with behavioral problems, may need different management, for example.

As a general rule, the strategies which are helpful in treating ADD without medication include individual and family counseling, behavior modification, and educational adjustments within the classroom.

Q: What are sliver grants?

A: Sliver grants are new funds provided to states through IDEA '97. These funds are targeted to help school districts provide direct services to students with disabilities and to make systemic changes that would improve academic results for them.

Sliver grants may be spent on any number of services, including--

• Alternative education programs for students with disabilities who have been expelled or are incarcerated in correctional facilities;
• Implementation of improvement strategies identified by the state (e.g., inclusion in the general education curriculum);
• Adoption of promising practices, materials, or technology derived from educational research;
• Implementation of interagency agreements for the provision of services to children with disabilities and their families; or
• Implementation of methods to increase cooperative problem-solving between parents and school staff, such as promoting the use of alternative dispute resolution.

The sliver grants must be distributed to school districts in the same fiscal year that the funding comes to the State from the Department of Education. Sliver grants will not necessarily exist every year; their availability depends on whether Congress increases funding for IDEA by a rate that exceeds inflation.

During the past two years, the overall increase in special education funding from the federal level has been 1.5 billion new dollars. Parents can certainly inquire about whether their school districts have requested money from sliver grants and how those funds will be used at the local level. In some districts, parents may be asked to help decide what the best uses may be of additional special education funding as it is made available.

Survey of Parents on Behavioral Issues

Researchers at the University of Illinois-Chicago are conducting a research study that asks parents of children and adolescents (ages 6-18) with Down Syndrome, Prader-Willi Syndrome, Angelman Syndrome or mental retardation to fill out approximately 30 minutes worth of confidential questions. The questionnaires can be completed at your convenience and returned by mail. With the help of experienced parents, they hope to gain a better understanding of the behaviors and other characteristics of the children and to learn what strategies parents find helpful when dealing with problematic behaviors. A summary of the results of the study will be made available to parents once the study is complete. The Institutional Review Board of the University of Illinois at Chicago has approved this study.

Parents will receive a gift certificate for their participation. If you are interested in participating or have any questions, please contact Nicolay Chertkoff Walz at 312-914-3632.

Parent Corner

Items of interest to parents

Cookbook Resource

Ellen Laird of Auburn, California has created a cookbook--Cooking Made Easy--for people with developmental disabilities who can read. Laird's cookbook presents recipes in clear language with simplified cooking processes. Every recipe is coded from 1-5 according to level of difficulty. Recipes are written in large print, all capital letters, for easier reading. Recipes are broken down into detailed, easy to understand steps. Dollar sign codes on each recipe signify cost of ingredients. There are 88 recipes, divided into the following categories: appetizers/beverages, soups/salads, vegetables, main dishes, breads/rolls, desserts, and breakfast.

The cookbook costs is $19.95. Shipping is free. Discounts are available for orders of 5 or more. For more information, contact:

Eileen Laird

P.O. Box 5431

Auburn, CA 95603

<<elaird@mindsync.com>>.

Disability Bookshop Catalog

The Children's Disability Bookshop Catalog is a shop-by-mail catalog listing hard-to-find titles covering a wide range of health topics for children. The catalog includes books about general medical topics, various specific disabilities including asthma, autism, Tourette syndrome, deafness, learning disabilities, and cerebral palsy; computer technology; games; and financial aid. To receive the catalog, send $4 for the print version and $5 for the audiocassette to:

Disability Bookshop

P.O. Box 129

Vancouver WA 98666-0129

360-694-2462.

Minding the Stove

The Stove Power Controller is a stove minder equipped with an alarm for use with conventional electric stoves. The timer/alarm may be set for 15, 30, or 60 minute intervals before the auto shut-off occurs. This device may be used with individuals who are forgetful or by a family member who is concerned about leaving something unattended on the stove. The price is $150.00. For more information, contact: TASH International Inc. at 1-800-463-5685.

Special Reading Program

Picture Me Reading is a visual-conceptual method of teaching ABC's and the 220 high frequency sight words which make up 60-80% of primary texts. Unique pictorial cues are embedded in words and letters, and auditory cue (sentence) for each enables "right brain" visual learners, dyslexic, developmentally delayed, the very young, and also typical children to quickly memorize these critical (often non-phonetic) words. Right brain, visual-conceptual cues and left brain, word/language = efficient learning. Parent and teacher feedback on this method ranges from positive to ecstatic. Prices are reasonable: materials range in price from $1 to $25. Write or call for information and samples:

Picture Me Publications

3899 JK Kenwood Drive

Spring Valley CA 91977

800-235-6822; 619-462-3938

<<picturemereading@mindspring.com>>.

Book on Feelings

Judy Barton has written a book of verse--Little Feelings-- for children ages three to eight. The book is intended to help youngsters be more comfortable expressing the wide range of feelings they experience. The book encourages children to share these feelings, and, in doing so, acknowledge their existence. For more information, contact <<Barton395@aol.com>>.

ADD Coach

An emerging profession is the ADD coach, an adult who assists adolescents and adults with attention deficit disorder to organize their daily lives. Kate Kelly is an ADD coach and the coauthor of: You Mean I'm Not Lazy, Stupid or Crazy?! and the ADDed Dimension. Both of Kelly's books are geared to adults with ADD. For more information about her books and about ADD coaching, contact Kate Kelly at her website: <<http://www.addcoaching.com>>.

Workshop in Great Falls & Havre on Managing Disruptive Behavior

The Montana Region II CSPD Council is presenting "School-wide & Classroom Practices for Preventing and Managing Disruptive Behavior: Simple Solutions" on August 17 in Great Falls and August 18 in Havre. J. Ron Nelson of Arizona State University will present and focus on students with emotional and behavioral problems in the regular classroom. This workshop is for parents and professionals with 6 renewal units available. To reserve a seat call 791-2270 in Great Falls and 265-4356 in Havre.

Rules for Kids Watching TV

Children with learning problems can be especially vulnerable to the bad aspects of watching television. They may watch too much television because they do not have other activities to occupy their time; they may have difficulty distinguishing between fact and fiction on television; or they may be unduly influenced by the aggressive behavior depicted on television.

Parents play a key role in influencing how children with special needs respond to television. Here are some guidelines for parents to consider, especially during the summer when children may have time on their hands:

• Make a point of showing children the differences between fantasy and reality as they are watching television.
• Put violent shows off limits. Children should be told not only how long they may watch TV but exactly what programs they are allowed to watch.
• Rating systems can be helpful in deciding what children would be allowed to watch, but there is no substitute for screening shows yourself.
• Monitor what children are watching and try to watch with the child, even if you are reading or doing something else at the same time.
• Limit television viewing to one to two hours a day (less if possible).
• Keep the television off during dinner so that family members have an opportunity to talk to one another.
• Don't allow children to have a TV set in their bedroom. Solitary TV viewing isolates the child and makes it more difficult for parents to monitor what is being watched.
• Remember that television is not the only medium that emphasizes violence. Be aware of violent content in song lyrics and video games as well.
• Encourage other forms of entertainment besides watching television: books, board games, computer programs, physical activity, and outdoor play.

Parents' Essays Wanted

Experienced, "veteran" parents of a child with a disability and/or special health care need are the most important source of emotional support and wisdom for new parents of children with disabilities and/or special health care needs.

A new book being prepared is intended for parents who have recently learned that their child has a disability and/or special health care need--at birth, during early childhood or any time thereafter. This is a book of short essays by experienced parents, essays that can be read, re-read and shared with others -- one at a time, at any time, and in any order.

What do you wish a friend had told you at that time in your life? What information do you wish someone had given you? What type of personal stories do you wish veteran parents had shared with you?

Stan Klein and Kim Schive are preparing the book. Stan is a clinical psychologist who has worked with children with disabilities and parents for over 35 years. In 1971, Stan and two colleagues founded EXCEPTIONAL PARENT magazine. Kim is a graduate of Harvard University and a former faculty member at Gallaudet University, the world's only liberal arts university for students who are deaf.

The authors of selected essays will share in any revenue generated by book sales.

The deadline is August 15, 1998; sooner is better!

Guidelines:

1. Keep essay to about 1500 words or less.
2. Tell the story of your own journey. Parents benefit greatly by hearing the personal stories of others and, from those stories, gleaning bits of wisdom and lessons they can apply to their own lives. You can also offer specific words of advice and encouragement.
3. Please submit clearly typed or printed material that is double-spaced. If at all possible, please also submit the essay on disk as well. Please label each page of your printed essay and the disk with your name and address and tell us what software program you used on the disk. Please send disk and printed copy to:
   Stanley D. Klein, Ph.D.
   82 Evans Road
   Brookline, MA 02146-2118

   You can submit your essay by e-mail, either by entering it as the text of your e-mail or by sending it as an attached file. Please send e-mail submissions to <<stankbrkli@aol.com>>.

4. At the end of your essay, please write a paragraph or two telling us about yourself and your family. Please do this even when this type of biographical information is included in your essay. Please do not count the words in this short biography in the word count of your essay.

Prevalence of Fetal Alcohol Measured

Fetal Alcohol Syndrome is thought to be one of the most common causes of mental retardation yet it has been very difficult to determine just how many cases of the Syndrome occur in the general population.

The Center for Disease Control (CDC) in Atlanta recently conducted a study to determine how many cases of Fetal Alcohol Syndrome and Fetal Alcohol Effect were occurring. The CDC study found that the prevalence of full and partial cases of fetal alcohol syndrome in Atlanta, Georgia, is similar to those reported in nine other states at 1.0 and 2.5 per 10,000 live-born infants, respectively.

By linking the data collected by two Atlanta child development surveillance programs, the CDC was able to determine how many of the 285,538 children born in Atlanta from 1981 to 1989 had the disorder.

Children were categorized as having full, partial, or no fetal alcohol syndrome based on the Institute of Medicine criteria.

At present, 31 states operate birth defects registries, and five states have received CDC funding to establish multiple-source fetal alcohol syndrome registries like the one created for this study.

Fetal alcohol syndrome can only be diagnosed by clinical observation, and almost 90% of cases are diagnosed after 6 years of age, which make surveillance of the disorder difficult. Multiple source registries will make it easier to compare its prevalence between states, according to the CDC.

Source: Bykowksi, M. (March 1998). Counting Fetal Alcohol Syndrome rates. Pediatric News, p. 10.

Wound Glue Approved for Use

A medical glue is one step closer to becoming the first product of its kind in the United States now that a Food and Drug Administration expert panel has recommended that it be approved as a wound closure device.

The FDA's General and Plastic Surgery Devices Panel unanimously voted to recommend approval of Dermabond, a "topical skin cohesive." It was shown to be as safe and effective as sutures in closing wounds and lacerations in a study of more than 800 subjects aged 1 year old and older.

Dermabond is useful for many of the lacerations seen in emergency rooms and urgent care centers that do not penetrate deep tissues but need some type of sutures.

In addition to traumatic wounds and lacerations, Dermabond also can be useful in closing wounds after elective skin incisions for removal of skin lesions or scars.

Dermabond can be used to join epidermal skin edges of many deep wounds, after subcutaneous sutures have been used to take the tension off the wound.

Using the glue eliminates the need for a return visit for suture removal.

Dermabond, which is contained in blister packs, is applied in multiple thin layers to wounds. The process takes about 25-45 seconds. Dermabond polymerizes within a minute and begins to peel off in 7-10 days. It is clear, so it is possible to see through the glue and observe the healing process to determine if there is any infection in the wound.

Dermabond is also pliable: It bends and moves with skin, making it useful for wounds in areas like the face, neck, and limbs where flexibility is important. It can get wet without compromising healing.

In trials involving more than 800 patients, Dermabond was compared with traditional sutures in procedures that included emergency repair of lacerations, closure of minimally invasive puncture sites and general surgical incisions, and facial plastic and reconstructive surgeries.

Wound healing, wound closure, and cosmetic outcome were at least as good in wounds and lacerations treated with Dermabond as in wounds and lacerations closed with nonabsorbable sutures, staples, or adhesive strips or tapes. Using Dermabond instead of sutures also reduced the length of the procedure.

The infection rate was slightly but not significantly greater in Dermabond patients.

The FDA panel recommended approval under the conditions that product labeling emphasize that physicians adequately cleanse a wound before using Dermabond and that the glue is not intended to replace subcutaneous sutures when they are necessary for closing deeper wounds.

In a study of 111 subjects aged 11 years and older who underwent elective facial plastic surgery, there was no evidence of infections or problems in any patient 5-10 days and 90 days after application of Dermabond. One year later, cosmetic results were better with Dermabond than with sutures. In addition wounds tended to be less inflamed with Dermabond, particularly in patients with thinner skin.

Source: Mechatie, E. (March 1998). Wound glue gets FDA panel's nod. Pediatric News, pp. 1; 5.

Social Skills for Children and Youth

Sometimes when a parent is raising a child with special needs, the parent loses sight of what is expected of typical children at a particular age. The following checklist indicates adequate social growth if a child usually displays these characteristics. Occasional fluctuations in mood do not necessarily suggest long-term difficulties. However, children who seem to be doing poorly on many of the items may be in need of more in depth assessment of emotional well-being.

THE SOCIAL ATTRIBUTES CHECKLIST

I. Individual Attributes

The young child:

• is usually in a positive mood.
• is not excessively dependent on teachers or other adults.
• usually engages in activities willingly.
• usually copes with rebuffs adequately.
• demonstrates the capacity to empathize.
• has positive relationships with one or two peers--i.e., indicates genuine care for them, misses them if they are not around.
• displays capacity for humor.

II. Social Skills Attributes

The young child usually:

• approaches others positively.
• expresses wishes and preferences clearly.
• is not easily intimidated by bullies.
• expresses frustration and anger appropriately, without harming others or property.
• takes turns.
• negotiates and compromises with others.
• shows acceptance for peers of other ethnic groups or backgrounds.
• is accepted fairly easily into ongoing activities or groups.
• interacts nonverbally with other children with smiles, waves, nods.

III. Emotional Maturity

The older child (12 years and older)

• deals constructively with reality.
• displays a capacity to adapt to change.
• is relatively free from symptoms that are produced by tensions and anxieties
• finds satisfaction in giving as well as in receiving.
• has the capacity to relate to other people in a consistent manner with mutual satisfaction and helpfulness.
• has the capacity to direct hostile energy into creative or constructive outlets.
• has the capacity to love.

Source: The Menninger Foundation, P.O. Box 829, Topeka KS 666601-0829.

Neonatal Origin of Cerebral Palsy

Cerebral palsy is a condition in which brain damage causes motor problems. It has been though that CP is frequently caused by brain damage that occurs before an infant is born or during the birth process, particularly in the case of very premature babies.

A new study in England, however, suggests that conditions related to prematurity which are treated after the baby is born may also contribute to brain damage.

In a study conducted in Bristol, England, at St. Michaels Hospital, 59 very premature infants who developed cerebral palsy and 234 who did not were compared. Researchers discovered that infants who experienced such neonatal factors as hypertension, transfusion, or prolonged ventilation were at increased risk of developing cerebral palsy.

Since there were indications of prenatal or birth-related problems in only 22 of the 59 cases, it is possible that the origins of cerebral palsy lie in the neonatal period for a large proportion of very preterm babies.

It also possible that cerebral damage from a prenatal problem such as infection in the mother may not be manifested until an additional further insult occurs in the period just after birth.

Source: Murphy, D. (1997). Neonatal origin of cerebral palsy. British Medical Journal, 314, 404-08.

Resiliency Traits

What makes the difference between families who seem to manage having a child with a disability and families that struggle a great deal? People have a variety of successful ways of responding to stress. The following are the personal characteristics that seem to help parents the most when they are trying to cope with the demands of having a child with disabilities:

INSIGHT

The habit of asking tough questions and giving honest answers about their child with a disability.

INDEPENDENCE

The ability to keep emotional and physical distance between themselves and outside criticism or social stigma.

RELATIONSHIPS

The need for--and ability to recruit--intimate and fulfilling ties with nurturing family members or adults outside the family.

INITIATIVE

The strength to take charge of problems and exert some level of control in demanding situations.

CREATIVITY

The ability to impose order, beauty and purpose on the chaos of troubling experiences through art, music, or some other outlet.

HUMOR

The ability to find the comic in the tragic.

MORALITY

The possession of a conscience through which the parent feels compassion, judges right and wrong, and determines personal values.

LOVE

The parents obviously and unconditionally love the child.

How Would You Respond?

Just for fun, get together with friends who also have children with disabilities and think of "snappy" comebacks for the following insensitive questions. Even though you never actually use your comebacks, it may feel good to express your feelings and perhaps have a good laugh as well.

1. Isn't your daughter seven? Why isn't she in first grade?
2. Why can't your child stand still?
3. Why is your child still in diapers?
4. Is your son brain damaged?
5. What's wrong with your child?
6. Can't you make that child behave?
7. It must be hard being the parent of a handicapped kid.
8. Why don't you keep that kid at home? ! He's disgusting to see in public.
9. Will he ever get better?
10. Have you had him long?
11. Can't you do something about that drooling?
12. You don't expect us to put a kid like that on T-ball team, do you?

Do's and Don'ts of Dealing with "Angry" People

Many parents dread confrontations with school administrators or teachers who are upset by their children's behavior. It is difficult for parents to remain "cool" and calm when someone is complaining about their child. Here are some suggestions that can help you acknowledge the problems being raised without feeling overwhelmed by the anger of the speaker:

Do's

• Listen--without interruptions.
• Write down main points of what has been said.
• When the speaker slows down, ask if anything else is bothering him or her.
• Exhaust the list of complaints.
• Ask for specific clarifications when complaints are too general.
• Show the speaker the list of complaints.
• Ask for suggestions in solving the specific problems, and write down the suggestions.
• As the speaker speaks louder, you speak softer.

Don'ts

• Never argue with the speaker.
• Don't try to defend your child or become defensive.
• Don't promise things you can't produce.
• Don't own problems that belong to others.
• Don't raise your voice.
• Don't belittle or minimize the problem.

Though these techniques are difficult to implement, it really is worthwhile to try to use them. Angry people are most easily disarmed by empathy and good listening.

Angus Reviews Recreational Software

Hello again. This is Angus Macdonald and Fuzzballs after a long hiatus from writing--I have returned. This first effort is not going to be my usual column. For all you arm chair baseball managers, I am going to review Electronic Arts Sports (aka EA Sports) Windows 95 version of "Triple Play 99". This is an interactive baseball game where you can be any one of thirty teams from the Anaheim Angels to the Seattle Mariners. The compelling factor behind Triple Play 99 is the settings which can be adjusted through the options menu such that varying levels of talents, physical abilities, and competitiveness can be addressed. For me with my one finger "hunt and peck" keyboard maneuvering, I found this game to be one of the most user friendly interactive sports games for people with limited motor ability.

The game is an authentic representation of current major league teams (as of January 1998). The computer takes a team and you take the opposing team. You can adjust both the difficulty and speed of the computer's team as well as your own to play to your abilities and skills. The computer maintains up-to-date statistics on all the vital information for each player and team which can be easily accessed. These statistics, of course, change over time as games are played and these statistics also play a role in how the teams and players perform in future games. This mix of statistical input and difficulty adjustability create an atmosphere where the outcome is never fully predictable. There are some maneuvers which cannot be achieved with just one hand or with "sticky keys". However, these moves may or may not be important depending on how well you hit. For example, stealing bases requires two hands. I find this a minor inconvenience.

With adult supervision to set the initial difficulty levels, kids as young as 6 or 7 could play this game successfully. Older kids and adults would find this game challenging and enjoyable. Over all I find it a wonderful exercise in hand eye coordination and developing motor skills.

I paid about $50.00 for this game. If parents have questions about the operation of the game or its suitability for an individual situation, please contact PLUK and they will forward your questions to me.

PLUK cyberNews

News for parents, educators, and individuals with disabilities from the technology front: the internet, computer hardware, software, and assistive technology.

Getting a Copy of New IDEA

There are several places from which you can get a copy of the reauthorization of the Individuals with Disabilities Education Act (IDEA). The quickest route to go is the following Internet sites:

Office of Special Education and Rehabilitative Services (OSERS), at the Department of Education. Choose "The Law.": <<http://www.ed.gov/offices/OSERS/IDEA>>.

Education Administration On-line; choose "IDEA Full Text": <<http://www.lrp.com/ed/>>.

Also you can obtain a copy of the revised law by contacting your Senator Conrad Burns or Senator Max Baucus or Congressman Rick Hill. Ask for S.717/H.R. 5.

Disability Law on the Internet

The World Wide Web offers fast access to disability laws, regulations, and judicial decisions. Here are some excellent starting points.

ADA

Though it's not flashy, the Americans with Disabilities Act Documents Center provides good access to the statute, regulations, tech sheets, and many other ADA-related publications: <<http://janweb.icdi.wvu.edu/links/adalinks.htm>>.

If what you want is the Americans with Disabilities Act Architectural Guidelines (ADAAG), you might prefer the Access Board's easy-to-use hypertext version. Check out Building and Facility Guidelines at: <<http://www.access-board.gov/bfdg/adaag.htm>>.

The publishers of ADA Update provide summaries of Lawsuits You Should Know About at: <<http://panopticon.csustan.edu/mgt/ADA.HTM>>.

IDEA

EdLaw, another publisher, offers an easy-to-use hypertext guide to the Individuals with Disabilities Act and related laws. Check out their site at: <<http://edlaw.net/edcenter/index.htm>>.

Other

FedLaw provides links to a wide range of laws, rules, regulations and judicial decisions (e.g., the Rehabilitation Act, Technology-Related Assistance Act, Developmental Disabilities Act). The URL for its disability links is: <<http://www.legal.gsa.gov/legal6a.htm>>.

To find synopses or full texts of Supreme Court cases, go to the Legal Information Institute's Project Hermes, click on search, and then enter the law, topic, or name you want to find: <<http://supct.law.cornell.edu/supct>>.

Training Package On-line

A training package for the Individuals with Disabilities Education Act (IDEA) Amendments of 1997 is now on-line. It focuses on legal requirements and provisions of IDEA 1997 and includes 500 pages of background information, resources, handouts and a series of 145 overhead transparencies. The package, developed by the Department of Education's Office of Special Education Programs (OSEP) and the National Information Center for Children and Youth (NICHY) can be tailored to the needs of a variety of audiences--special educators, general educators, state special education directors and administrators, parents and others. The training package can be ordered from NICHY (for $175) by calling 1-800-695-0285 to request an order form. One is available on-line at: <<http://www.ed.gov/offices/OSERS/IDEA/train.html>>.

Teen Chat Room On-line

Young people with epilepsy now have a new way of reaching out to each other across the country.

EpilepsyRap, an Internet chat room designed for people ages 9 to 18, is open from noon to 2:00 p.m. EST on Thursdays on the Epilepsy Foundation's Web site <<http://www.efa.org>>. Time is subject to change.

Three chat rooms running simultaneously are available for the following age groups: 9 to 12; 13 to 15; 16 to 18.

Kids Stuff on the Web

Children can get a great deal of health education by browsing the World Wide Web. For example, the Food and Drug Administration (FDA) has some great features for children <<http://www.fda.gov>> .

• Information about glass eyes and other artificial body parts from Yorick the skeleton, who also has a cochlear implant, an artificial knee and hip, and a silicon gel-filled chin;
• A food-safety coloring book children can print out, featuring a suitably revolting picture of a green monster bacterium with guidelines for safe food handling;
• A word-find puzzle that helps children build a working health vocabulary;
• Hints for caring for pets and avoiding pet-transmitted diseases;
• A run-down on the vaccines children receive and the illnesses they prevent; and
• Information on the health hazards of smoking.

HONOR ROLL

The following educators have earned a place on the PLUK Honor Roll for their exemplary service to children with special needs. These individuals have been nominated for honor roll status because they have gone the extra mile for a student or students who needed special help to do well in school. Below each name is a quote from the letters of nomination.

Curt Prchal, Technology Teacher, Will James Middle School, Billings Public Schools

"Mr. Prchal has served as a mentor for our son (who has Asperger's Syndrome and CP) and gone the extra mile to not only assure he succeed, but to shine. We feel very blessed that Mr. Prchal has been a part of our son's life this year."

James Wood, Principal, Sidney Senior High School

"Mr. Wood has been instrumental in developing a facility designed for Special Needs students and has been supportive of mainstreaming efforts of teachers. He has always given of his time to support students with special needs that were a part of his school."

Debra Flynn, Teacher (Pre-8th), Molt School

"Debra teaches in a one-room, one teacher, preschool through 8th grade school. She has made school an enjoyable learning experience for all her students including our daughter who has Down Syndrome. She has no degree in Special Education, but a degree could not make her a better teacher."

Tamra Leland, Special Education Teacher, Sidney Senior High School

"She not only cares for her students, she challenges them to learn to their potential. She includes her students in school life and her students were the first to have a high school letter in Special Olympics."

If you know of an educator who deserves to be on the Honor Roll, send your nomination to:

PLUK

1500 N 30th St

Billings MT 59101

e-mail plukmt@wtp.net.

Those recognized on the Honor Roll have their names published in PLUK News and receive an Honor Roll certificate and a personal thank you note from PLUK.

End of the PLUK NEWS June/July 1998

Copyright © 1998 Parents, Let's Unite for Kids, all rights reserved.