Most often, women and girls living with Turner Syndrome generally have normal intelligence, behavioral function, and self-perceived physical and mental health. However, more subtle difficulties have been recognized. These include selective impairments in nonverbal skills, slowed response times, increased rates of attention deficit disorder, increased risk for social isolation, immaturity, depression, and anxiety.
Shyness, social anxiety, and reduced self-esteem generally relate to the premature ovarian failure and fertility issues.
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.
The new guidelines recommend timely, comprehensive psycho-educational evaluations and re-evaluations as needed, age-appropriate pubertal induction and social interactions, and career and vocational planning for the best long term outcomes.
Go to SHOP for some helpful materials.
The most important first steps in communicating productively and effectively with individuals who have mental health challenges are to establish a positive rapport and to use sound communication skills. Gaining the attention and cooperation of the individual is not always easy; however, there are basic premises that can help further your efforts to establish a positive, productive and trusting relationship with even the most hesitant individuals. It is important to establish trust. Let them know that you are a person who can be trusted and is genuinely interested in their well being.
Building a sense of trust. It is important that you live up to your word. If you indicated that you will/will not do something, make every effort to follow through and complete the task. When circumstances arise that prevent you from doing what you said you would do, be sure to calmly and clearly explain the reason you are unable to follow through. If at all possible, make arrangements to complete it at another time or attempt to ask another person to assist you in completing the task. Be kindly honest. Avoiding the individual, telling untruths or half truths will not instill trust.
Actively listen. Other people will share information with the individual they see most often. Frequently, the most heartfelt communication is that which is unsolicited. It spontaneously occurs as the result of a sense of trust, comfort, and familiarity. It is often tempting to ignore, minimize or change the subject when we are focused on other things of interest or we are uncomfortable that we may not say the right thing in response. Most often, the individuals are not looking to you to solve the problem as much as they are looking to you to listen and acknowledge what they are saying and how they feel is important. They are seeking validation that their concerns, thought, feeling are important, and that they are important.
Avoid judgment/advice. There are two statements that do not belong in accepting communication. The first is should, in all of its many contexts. You should… I should…they should… she should…. The word should implies judgment and rendering advice. It is best to eliminate it from your vocabulary when interacting with others. The second and actually a question, is why? Think about how many times in the course of one day you have asked another person why? Using the question why puts people on the defensive— they are being asked to justify, defend, and explain themselves. It is far less likely a question that will result in information from an individual as much as it will yield a defensive answer.
Skip the Shame Tactic. While it might have an immediate response, the overall result is not long-term and it will damage your relationship. Reminding someone that you have already told them something, reminding someone that you are doing something inconvenient for their benefit, playing on a sense of embarrassment to coax an individual to comply is not sound interpersonal skill and will create more problems than it could ever resolve. There are many individuals who experience memory impairment as a result of an illness, medication, distractions etc that will not remember that you told them the same information earlier. Telling them that you already told them is an indication that they are being bothersome, which is not the message that will inspire a mutually satisfying relationship.
Extend Respect. The individual may not be in control. They may be verbalizing anger, displeasure, or disagreement. The language the individual might use can be outside acceptable social norms. It is our responsibility as a person in control to always extend courtesy and respect—- especially when the individual you are attempting to engage is struggling to do the same. It is not productive to respond in kind. Remaining calm, attempting to communicate clearly, honestly and kindly to the individual and recognizing when the individual is unable to communicate is as important as knowing. It is more productive to calmly and kindly end a conversation than to join in with negative, pressured, or angry comments in response to the individual. It is respectful of the individual’s challenges to continue the conversation at a later time or to seek assistance from another person, or if needed, a professional health care provider.
Know Yourself. Self-inventory is helpful in all interactions, and especially helpful when communicating with individuals experiencing mental health challenges. Often, individuals with mental health challenges can touch us in ways that we do not readily recognize or cannot immediately identify. As we identify feelings of stress, discomfort, irritation, or frustration associated with the words or behaviors of another person, it is very beneficial to highlight for ourselves that it is the words or behaviors, not the individual that is problematic. It can make the difference between giving up (and blowing up) verses using a different strategy or approach to inspire stronger, genuine and meaningful communication.
Source: NAMI – Greater Monmouth 2009, by Cheryl Craig MA, RN
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.
- 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.
- 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.
- Bullying, Sadness, and Worry: Knowing what to watch out for and when to be concerned by: Becky Hashim, Ph.D., Attending Clinical Psychologist, Behavioural Consultant Team at the Children’s Hospital at Montefiore. Useful information for educators
Anxiety and depression may be seen in those with NLD. To deal with these major issues, 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.
Turner Syndrome Autumn Retreat
September 20-22, 2019
Meet and connect with other women, girls, and families affected by Turner Syndrome in the solace of nature. The retreat specializes in your needs, offering not just memories to last a lifetime, but skills and knowledge to help manage Turner Syndrome. The laid-back summer camp vibe offers a space for everyone to be comfortable to be themselves.