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Learning

Turner Syndrome is characterized by a variety of physical implications and development and learning issues which include deficits in visuospatial organization, social cognition and math abilities. While some are diagnosed at birth or prenatally, over one third of girls with TS are diagnosed in mid-childhood and adolescence.  Early diagnosis and treatment are vital to successful outcomes for girls with TS. 

It is essential that educators be knowledgeable about the condition and prepared to consult with school nursing staff for possible referral for diagnosis and clinical oversight.  It is equally essential that educators be informed about the cognitive issues likely to have an impact in the classroom and be prepared to collaborate with school psychologists to maximize educational outcomes.  

Lastly, it is crucial that school nurses and school psychologists have current information about TS and be aware of the potential impact that TS has in their respective fields.

                                                                                                                                 



INSIGHTS TO LEARNING:

1. What are the cognitive issues with TS?

2. What are the typical services needed by age group:  Infant, Toddler, Pre-School, Elementary, Middle School, High School, College?

3. What is a 504 education plan?

4. What is an IEP?

5. What are some of the psycho-social implications? 

6. What are some possible treatments?  OT/PT/speech/social skills/Orton Gillingham Therapy, etc.

7. What are the evaluations and when should they be administered?

8. What are optimal re-evaluation intervals?

9. Do I have to share the diagnosis to obtain services?

10. How can I get the support I need?

11. How can I help secure in-house education program for teachers?

12. What are the benefits of in-class vs. small class sizes?

13. How can tutoring help?

14. What are extended education/enrichments?

15. What strategies can help with homework?

16. What are strategies to help with test-taking?

17. How can I assist with social skill development and socialization?

18. What are the typical social difficulties?  How can I help in maintaining friendships, adapting to new situations, peer pressure, bullying?

19. What can I do to alleviate anxiety and depression?

20. Are there proactive measures to fend off or overcome hurdles?

Psychological and Social Issues




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1. What are the cognitive issues that may be associated with TS?

Some cognitive issues with Turner’s Syndrome include difficulty with visual-spatial tasks, such as mentally rotating objects in space, which is a problem shared by those with nonverbal learning disability (NLD).  This is a problem that is present to some degree in 99% of females with Turner’s Syndrome.  Those with NLD and girls with TS may have trouble with math, particularly geometry.   Challenges may also involve using visual maps to navigate.  Since their problems are so specialized, they have what is known as “Turner neurocognitive phenotype;” this terminology refers to the fact that the complete or partial absence of the X chromosome impacts the development of parts of the nervous system.

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2. What are the typical services needed by age group:  Infant, Toddler, Pre-School, Elementary, Middle School, High School, and College?

Because the particular strengths and weaknesses of those with NLD and TS vary from person to person, we list services which may be useful.  These are organized by school age group.

For Infancy:
If TS is identified during this period, the child may qualify for early intervention services, depending upon the severity of their problems.

For Preschool:

  • Occupational therapy to develop fine motor skills such as coloring, buttoning clothes,  tying shoes, and cutting paper
  • Speech therapy to work on speech sounds
  • Training in social skills

Elementary School:

  • Continued occupational and physical therapy
  • Continued speech therapy
  • Specialized gym classes designed for those with physical or other disabilities instead of being in a regular gym class
  • A “resource room” environment with more individualized help in subjects where academic difficulties have been identified
  •  If necessary, the student may need to be in a special education classroom for part of the day.  However, the benefits of remaining   in a mainstream classroom with non-disabled students may be more important to the development of social skills. 

Middle School

  • Specialized gym classes
  • Speech therapy if there is still any difficulty with speech sounds
  • High School and College
  • Allowing the student to use a word processor for any assignments that require writing since students with NLD may have issues with handwriting
  • Time management training
  • Extended time on tests
  • Tape recorder to record lectures

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3. What is a 504 education plan?

A 504 education plan is an education plan designed for a child who meets the following conditions:

Has a mental or physical disability that significantly limits one or more major life activities

  • These may include specific learning disabilities, physical disabilities, physical abnormalities, or disabilities that affect the way the body functions.
  • Difficulties with major life activities may include taking care of oneself, performing manual tasks,  walking,  seeing, hearing, speaking, learning, and working

Has a record of that disability: do you need a colon here? Was there supposed to be something else written?
Is regarded as having that disability
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4. What is an IEP?

An IEP (or Individualized Education Plan) is a plan for all students who are enrolled in special education programs in public schools. The plan is designed by a team of staff members from the child’s school, the child’s parents, and special education personnel to provide for services and accommodations for the child. The IEP itself describes the specific issues of the disability, the goals the child is expected  to attain, including spec ific academic skills, services that will be provided by the school; and the type of educational setting for the child (e.g., special education classroom, a regular classroom, etc.) Some of the psycho-social implications of NLD include difficulties in adapting to new situations, which could lead to  inappropriate behavior in these situations; issues with social skills and making new friends as well as difficulty gauging how to act in a social environment; and anxiety and depression that may develop.

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5. What are some of the psycho-social implications? 

Some of the psycho-social implications of NLD include difficulties in adapting to new situations which could involve inappropriate behavior in a new situation; issues with social skills and making new friends; possible anxiety and depression (that could develop as a consequence of these difficulties); and possible decreases in physical activity levels with age.

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6. What are some possible treatments?  OT/PT/speech/social skills/Orton Gillingham Therapy, etc.

Possible treatments for NLD include:

Auditory integration therapy:

  • Improves auditory processing and the way the brain processes information, particularly in normally noisy environments
  • With auditory integration therapy, there may be an improvement in reading, writing, speech, and language development as well as greater abilities in handling noisy environments and social situations. There may also be improvements in comprehension and increased development of neural pathways that could improve handwriting and other fine and gross motor skills

Cognitive behavioral therapy:

  • This is guided therapy that enables the child or adult with NLD to perform better with everyday tasks such as concentrating and focusing on tasks  and making appropriate choices in social situations
  • Usually begins with an assessment of   the child or adult’s cognitive/thought patterns   and uses this information as the basis for deciding  what needs to be worked on throughout the course of therapy

Sensory integration therapy:

  • Helps with organizing and interpreting sensory signals in the environment, particularly for those who are overwhelmed by the many sensory signals that come from the environment such as smells, tastes, and sights

Social skills groups:

  • Helps increase social success and gives tips and strategies for confronting the challenges of being socially successful

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7. What are the evaluations and when should they be administered?

Possible evaluations for NLD include:

Neuropsychological evaluations—assessment of cognitive abilities, language abilities,  visual processing skills, reasoning, memory, handwriting skills, information processing, attention, and executive functioning (planning and managing complex activities)

  • Given at an age when a child is accustomed to doing schoolwork
  • Test length varies based on age, purpose, and mental abilities
  • A follow-up appointment will discuss the results of the evaluation and recommendations

Psychoeducational evaluations—assesses a student’s functioning in three main areas that impact learning and academic functioning:

Learning aptitude:

Also called intelligence or IQ tests; these tests measure a student’s abilities in several categories including

  • Verbal/linguistic—tests a student’s memory, abstract reasoning, vocabulary development, comprehension
  • Nonverbal skills – organization and memory, nonverbal reasoning, planning ability, visual motor coordination, and spatial visualization (being able to place objects in space)

Basic academic skill development

  • Tests a student’s skills in reading, written expression , mathematics, and sometimes other academic areas , and

Personality and behavioral  factors

  • Assesses a student’s functioning with respect to development of coping strategies and personal traits including self esteem,  anxiety issues,  internal pressures affecting the student, and levels of motivation with regards to schoolwork

These assessments are often given to determine whether a specific learning disability, such as NLD, affects the student’s performance in school.  Learning disabilities are often diagnosed with assessments such as these when there is a discrepancy between a student’s  scores on achievement tests and what is referred to as their educational expectancy range (age, educational background, and intelligence).

Should be administered when the student begins to experience academic difficulties or when there are discrepancies observed between performance in different subject areas, such as excelling in reading and failing in mathematics.  A psychoeducational assessment should also be conducted in the early elementary school years if a child has experienced an early history of developmental problems during infancy and/or preschool.

Vineland Adaptive Behavior Scales Second edition (or other valid measure of adaptive behavior)—measures adaptive behaviors such as the ability to cope with changes in the environment, learning new everyday skills, and demonstrating independence

This instrument, which is administered as a survey or questionnaire to the child’s parents/caregivers and/or teachers,  measures four main areas including:

1. Communication—evaluates how the child responds to communication, expresses themselves verbally, and writes

2. Daily living skills—measures personal behavior as well as how the child interacts with others at home and in the community
3. Socialization—assesses how the child is during play and relaxation, how the child  relates to others, and how she develops coping skills
4. Motor skills—assesses gross and fine motor skills

The scale is completed by parents or school administrators and is given then when the child is of school age (18 years and younger)

Other possible instruments to measure adaptive behavior skills include the AAMR Adaptive Behavior Scale- Second edition (ABS-2) and the Adaptive Behavior Assessment System – Second Edition (ABAS-II) 

Personality Inventory for Children—evaluates the child in many different dimensions and looks specifically at behavioral, emotional, and cognitive status

  • Given between the ages of 5 to 19
  • Administered to someone who knows the child well such as a parent
  • Dimensions in the inventory include:

1. Impulsivity and distractibility
2. Delinquency
3. Family dysfunction
4. Social withdrawal
5. Social skills deficits

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8. What are optimal re-evaluation intervals?

Re-evaluation intervals:

For the neuropsychological evaluation:

  • A year after the test to reassess academic achievement if there are questions about the student’s progress (alternate form will be given)

Psychoeducational evaluations:

  • Usually three years after the initial assessment to see if there are any differences in performance on the various sections of the assessment  over time. If the assessment is being conducted by the child’s school district, the most common interval is three years. If parents choose to pay for an evaluation outside the school district, there may be a shorter interval between assessments.

All other evaluations could be taken again if there have been any significant changes in the child since the test or inventory was first taken
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9. Do I have to share the diagnosis to obtain services?

Unfortunately, many school districts don’t recognize NLD as a diagnosis. There are other disabilities that could be used to obtain services for your child if NLD isn’t recognized.  These include

  • LD-NOS (Learning Disability-Not Otherwise Specified)—listed in the DSM(Diagnostic Statistical Manual which is used by psychology, counseling and other professionals)
  • Developmental Coordination Disorder (DCD)—also listed in the DSM
  • Semantic Pragmatic Disorder—a recognized communication disorder which would result in the student being classified as communication-disabled
  •  PDD-NOS (Pervasive Developmental Disability-Not Otherwise Specified)—This diagnosis is used when there are symptoms displayed that are similar to autism but symptoms do not meet the full criteria for autism or other pervasive developmental disorders.
  • Neurologically impaired or encephalopathy (brain damage of unknown origin)
  • Asperger Syndrome—specifically listed in the DSM under the category of Pervasive Developmental Disorders Disability
  • Other Health Impaired (OHI)- This is not a diagnosis from the DSM, but it is an educational classification used in schools. This classification indicates that the student has some kind of health condition, either acute or chronic, which adversely affects his or her educational performance.

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10. How can I get the support I need?

An evaluation by the special education staff in the school (also referred to as the child study team) is often used to determine what supports and services are necessary to best address the student’s needs.
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11. How can I help secure in-house education program for teachers?

In-house workshops and education programs help educate teachers about the issues that may be seen in the classroom, particularly when it comes to the matter of teaching students with learning disabilities
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12. What are the benefits of in-class vs. small class sizes?

Small class sizes often help provide more individualized attention to students with learning difficulties as could classroom aides in regular classrooms. Not all students with NLD or Turner’s syndrome require a smaller class. This is something that should be discussed with educational personnel at your child’s school.
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13. How can tutoring help?

Tutoring may assist in the organization of schoolwork, providing strategies for studying, helping in a particular subject, ---- or helping the child to progress if she is working below grade level.
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14. What are extended education/enrichments?

Extended education and enrichments provide advanced learning experiences for those who are not as challenged as they could be by the normal curriculum provided in the classroom. These classes go into more depth with the different subjects offered in the traditional curriculum and provide more challenging material to master. Extended education and/or enrichment may be provided to students who have advanced or gifted abilities in certain areas.
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15. What strategies can help with homework?

Homework performance can be improved by following a few strategies including:

  • Planning study time with a schedule
  • Prioritizing with a to-do list that includes homework that needs to be done, activities, chores, and plans that have been made
  • Organizing each day and making sure everything has been packed for school. Binders could be used to organize work for each subject
  • Setting up a workspace that has good lighting, plenty of space, no clutter, and little or no noise. Establishing “rules” such as avoidance of loud music, TV, and text messaging while doing homework.
  • Encouraging the student to ask for help from the teacher
  • Considering the use of a study buddy or homework partner who can be supportive of the child’s needs resulting from her disability and also helpful in organizing assignments, task division, and time management.

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16. What are strategies to help with test-taking?

Test-taking can be very stressful for students with learning disabilities but some accommodations can be used to make these experiences easier for those who qualify for them. Talk to your child’s teacher and/or special ed. personnel to see if your child may qualify for these accommodations. Untimed tests if the test is being timed for other students. This will reduce anxiety over the amount of time that is being given for the test.

  • If there are tests being given with a Scan-Tron answer sheet (a form that requires filling in a “bubble” which corresponds to a multiple-choice selection), provide the test-taker with an answer sheet on which her responses may be written directly  or provide larger spaces for the answer to be filled in.
  • Give the test in a different room away from other students to allow for less anxiety over the test experience and for less distractions or noise.

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17. How can I assist with social skill development and socialization?

Socialization can be difficult for a child with NLD but there are ways to make things easier and to allow for more successful social interactions or play dates. Here are a few different strategies:

  • Social skills instruction—this allows the child with NLD to learn appropriate social interaction skills and how to interact in different situations. Training can be in the context of group social skills classes or individual social skills classes. Social skills instruction is often conducted in schools.  Many counselors and psychologists who work with children are also qualified to provide this type of instruction.
  • Play dates can be structured with different activities organized ahead of time  so that there is no need  for  child-directed planning of what to do.
  • Keep play dates one-on-one as much as possible rather than in groups.

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18. What are the typical social difficulties?  How can I help in maintaining friendships, adapting to new situations, peer pressure, bullying?

Social difficulties:

Maintaining and making new friends.

  • Social interactions with new or established friends should be structured and one-on-one.

Adapting to new situations:

  • Go to the new environment beforehand and walk through it ,noting any prominent landmarks in the environment. Go to any areas that will be frequented and see where they are before the child begins to spend time in the new environment.
  • Provide a daily list of activities that will occur so that the child will know what is going on and be prepared for it.

Peer pressure

  • Teachers and parents can be more aware of interactions between students and try to intervene if necessary. Making an effort to change behaviors that could be thought of as peer pressure will make a great difference.

Bullying

  • There are anti-bullying programs in many school districts and many schools have provisions in their codes of conduct about bullying and its consequences. Even at a university or college level, there are policies against behaviors that could be seen as bullying. Check with your child’s school to find out what their specific policies are. This information might be provided on the school’s website.
  • Talk to your child if you think that she is being bullied at school and intervene, if necessary. Stop the bullying before it gets worse.
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Bullying, Sadness, and Worry: Knowing what to watch out for and when to be concerned.

19. What can I do to alleviate anxiety and depression?

Anxiety and depression may be seen in those with NLD. To deal with these major issues though, here are some tips for coping at home and at school:

  • Exercise regularly with a set routine. Exercise can be a great way to relieve stress and reduce depression.
  • Learn to relax. A good way to relax when stressed or anxious is to walk away from the situation that is causing the anxiety or just take slow deep breaths to relax your body and release any internal tension.
  • Establish a regular sleep schedule. Try to go to bed at the same time every day, including weekends and during vacation, and wake up at the same time every day. Regular sleep improves resilience to stress and depression.
  • Laugh.  Laughter is a great way to relieve stress.
  • Schedule “down” time—time where nothing is scheduled and no important work needs to be done.
  • Eat healthy.  Healthy eating helps make the body resilient to stress.
  • Have a support network available that can help.
  • Learn time management and organizational skills.
  • Use praise.  Parents and teachers should be generous with praise.

Don’t be afraid to seek help if you or your child needs it. Cognitive-behavioral therapy or mindfulness techniques (strategies which help you stay in touch with your inner experiences) can help with depression issues as can talking to a therapist, psychologist or psychiatrist. Actually, talking to anyone that can be trusted is a great way to deal with any issues of depression.
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20. Are there proactive measures to fend off or overcome hurdles?

Some proactive measures can be utilized to fend off or overcome hurdles. These include:

  • Preparing in advance for any major life transitions and guiding the child with NLD through each step of the transition to give a clear sense of direction on what is to occur throughout this new stage of life.
  • Social hurdles can be overcome through social skills groups or classes where the child can learn appropriate social skills for different situations they might face.
  • Ongoing counseling can be helpful in avoiding negative mental health issues.
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