Development challenges for children with ichthyosis

Issues in infancy

Students’ developmental challenges do not exist in a vacuum. They exist in the context of how well the tasks of previous developmental stages were resolved. Because of this, it is important to review the issues that infants with ichthyosis face so we can better understand challenges that young people with ichthyosis face as students.

For the child born with ichthyosis, there are two threats to the infant’s development of a healthy sense of self and trust. First is separation from the mother at birth and continuing isolation if the infant is admitted to a neonatal intensive care unit. The experience interrupts the infant’s opportunity to bond with the mother and develop trust in consistent care from a single caregiver.

The second risk is intrinsic to ichthyotic skin. Because the baby was likely born with raw, blistering or cracking skin, in some cases as striking as a burn victim’s, the infant’s basic need for touch is compromised. Additionally, the repertoire of comforting behaviors that infants frequently develop-such as thumb sucking and rocking-may be inhibited. These circumstances produce a powerful impact on the infant, with possible repercussions in later development.

Caregivers should engage the infant in activities that stimulate development and provide distraction. Provide an environment that stimulates the infant’s senses of touch, smell, vision and hearing. Soft blankets or pieces of fabric, stuffed animals and sturdy rattles to grasp and hold will appeal to the child‘s sense of touch. Music, as well as the soothing use of voice, may be comforting. Mirrors can be placed at the child’s eye level, and mobiles overhead, to engage the infant’s attention. Furthermore, because infants develop a great deal of their self-esteem through touch, the caregiver should include
physical touching in routine care as much as circumstances allow.

Caregivers also need to know about special care requirements for infants with ichthyosis. Parents are the primary source for this information, but key issues involve these factors:

  • The need for periodic moisturizing of the skin through application of lotions, creams, or ointments.
  • Application of antibiotic ointments to breaks in the skin’s barrier;
  • Attention to increased fluid and caloric requirements;
  • Special bathing considerations;
  • Special diapering and clothing needs;
  • Close attention to temperature and the child’s physical comfort;
  • Attentiveness to subtle clues to pain or discomfort.

Through daily interaction with the infant, the care giving professional will soon become attuned to deciphering and responding to the child’s needs for interaction and comforting.

Issues for toddlers & preschoolers

For the parent or caregiver, the challenge at this stage is to let the child explore the environment while not giving in to the urge to over-protect.

Because child care and preschool programs are frequently the first social experiences the child has outside the family, parents may be anxious about the reactions of other adults and children to their child’s appearance. This may also be the first opportunity for the child to recognize that she is visibly different from peers.

Separation from parents and family, and the ensuing anxiety it causes, are key issues for all toddlers and preschoolers. The child with ichthyosis may be more vulnerable to separation anxiety due to either impaired body image or traumatization from hospital stays. Allowing the child to explore this issue through play and literature can help lessen anxiety. Games such as peek-a-boo, pop-up-boxes, hide and go seek, and open ended dramatic play give children many opportunities to explore their feelings about separation.

The challenge is to provide open and honest answers to questions that will inevitably arise. There is no advantage in trying to protect the child from his or her condition. In fact, attempting to do so is counter-productive. It is essential that children be able to articulate their own grasp of the situation. For example, one parent has shared that her daughter was able by the age of two to say, “I have ichthyosis. It’s a recessive genetic skin disorder.” This may sound precocious, but words became a valuable tool and empowered the child to cope with daily questions from people around her.

Teachers are powerful role models for young children. Open and positive responses to other children‘s questions and concerns will set the tone for how children deal with differences in general, and the child with ichthyosis in particular. Preschoolers need concrete, simple explanations for these visible differences. For example, “Johnny’s skin is different than yours, but you cannot catch it. He was born that way. Everybody has skin that looks different. How is your skin different from your friend’s skin?”

The obvious nature of this disorder forces the student to develop coping skills related to the issue of looking so different.  What the student seeks is acceptance and less attention.  A teacher would be wise to hold an attitude of benign neglect. Cuts and injuries to ichthyotic skin are common and can look shocking, but often heal quite rapidly.  Caretakers should not be unduly alarmed by their appearance.

Children often gain self-esteem by helping others. Teachers can encourage community spirit by assigning helpers whose job is calling “time out” during physical activity when they see their friend getting overheated. Books can also be a positive tool for exploring how children feel about all kinds of differences. A list of suggested reading is included in the back of this manual.

Issues for the school-aged

School-aged children are ready to apply themselves to specific skills and tasks. The challenge is to nurture the child’s sense of competency. On the other hand, a danger lies in the child’s possibly developing a sense of inadequacy or inferiority, which in turn may lead to low self-esteem and apathy.

For the child with ichthyosis, this stage presents some unique and difficult challenges. A child may do fine academically, but have difficulty socially or physically. Appearance factors may lead to social isolation, leading in the extreme to being ostracized and ridiculed by peers. Physical limitations may lead to below average performance in games and sports. Resulting low self-esteem may impact academic performance as well.

Children with ichthyosis should be encouraged to focus on at least one thing they excel at, both in the academic and extracurricular realms. The teacher may play an extremely critical role in this. One second-grade teacher discovered the affected child’s aptitude was for writing, and encouraged her expression through poetry and prose. That child is the original author of this manual.

Teachers must have the same academic expectations for children with ichthyosis that they have for others. Diminished expectations only contribute to the child’s isolation and could exacerbate low self-esteem.  There may be times when academic pursuits can even prove to be therapeutic.  For example, one 5th grade girl with EI chose to study her condition as her year-long research project.  After writing to scientists, she was able to give a speech to her class detailing progress in the search for a cure.  Certainly, there may be times when accommodations in assignments may be needed due to the motor issues or problems with dry, tired eyes.  Allow and encourage the child’s sense of humor, even self-deprecation, or stating the obvious about his or her appearance.  Don’t allow the child to overuse adult help at the expense of strengthening the ego.  ‘Tis better to help the child develop a ‘thicker skin’ to protect against life’s slings and arrows.

In the athletic arena, however, expectations should vary on a case-by-case basis.  The school nurse’s input is a critical piece in assessing a child’s capacity and options while participating in Field Day or sports where a child is exposed to 80°+ temperatures.  Some children with ichthyosis can participate in sports and outdoor activities so long as they have ready access to water, shade or an air-conditioned room. They should be encouraged to be free and uninhibited about calling “time out” when overheated. Other affected children may be more restricted and should be offered other roles or tasks, such as assistant coach or scorekeeper. If unable to go outside at all, children can be involved in indoor projects, or given a special job in the school office. In every situation, children should be encouraged to set and respect their own limits for physical exertion. Limitations imposed by others can inhibit development of the child’s full potential.

The most difficult and painful issues for children with ichthyosis are social isolation, teasing and ridicule. The teacher faces a true balancing act on this issue, on the one hand being supportive, while at the same time trying not to single the child out, causing further ostracism and ridicule. General class discussions about prejudice, cultural and physical differences and friendship will help address these important issues without undue attention on the child with ichthyosis.  Discussions about values and character building reinforce the true nature of our happiness.  The crucial message is that “different” does not imply a value judgment-better or worse. As with preschoolers, enlisting peers as helpers can foster understanding and respect for the child with ichthyosis.  When doling out school justice – a vice-principal, teacher or guidance counselor must view the use of humor, or even “attitude” issues through the prism of a child growing up appearing vastly different from everyone else –including his or her own family.

Special education services considerations

At some point a teacher or parent of a student who has ichthyosis may wonder if academic deficiencies or specific behaviors require further educational expertise and remedy. At this time a referral should be made for an evaluation by a Special Education Services team.  In most school districts “other than routine” (not that there is much routine about teaching children) type of recognition or service requires justification via specialists’ examination.  The range of skin disorders and a specific condition’s unique expression in your student with ichthyosis is just one piece of the puzzle before you. Skin issues alone may require a formal designation of the challenges presented by ichthyosis via 504 Education, Special Education or IDEA Laws. Since 1974, the Federal government has legislated schools to provide students with special needs to be in the most “normal” setting possible and still provide adjustments or remediation to encourage the child’s maximum potential.  

A Special Services evaluation consists of
(1) psychological or IQ testing to assess the students’ relative cognitive strengths as well as capacity to focus and concentrate,
(2) learning disabilities testing by an educational specialist, which confirms current academic achievement or need for remediation.  The parents must sign an informed consent for the process to begin and are usually happy to provide the needed
(3) developmental milestones and medical and family history.  Parental and professional judgment is synthesized at a meeting of the child study team or an Individual Education Plan (IEP) meeting.  Primary concerns must be for the safest, least restrictive and most appropriate learning environment for the child.  Adequate deliberation at this meeting should address issues surrounding physical environment, socialization, and fostering the maximum growth of this student.

Junior high & high school students
Marked by rapid physical growth and pronounced physical changes, adolescence presents a stage where teens are frequently more concerned with appearance in the eyes of others than with their innate sense of self. Often they are caught in conflict between the joys of being a child and aching for the freedom they associate with being an adult. Faced with the added challenge of drawing on existing skills and interests as they prepare for life as independent adults, their dilemma can be summed up with three questions: Who am I? How do I fit in? and, What am I going to do with my life?

By this time, teens with ichthyosis have probably mastered the physical management of their skin disorder. They are acquainted with their limitations, but are still discovering and developing aptitudes and interests. However, the newfound focus on self-image can cause anxiety and self-doubt. As peers become more important, and physical appearance and fashion play prominent roles in developing self-image, the need for social acceptance becomes paramount.

Many teens feel isolated and misunderstood at this time. Those with ichthyosis may be particularly vulnerable due to their being different in a highly visible way. The pressures of dating add concerns about physical attractiveness and peer-appeal.

Transitioning to junior high or high school means leaving the security of a school where most people knew and accepted the students’ uniqueness. The teen is now faced with teaching those in the new environment about their condition, cultivating a new social environment, and establishing a new comfort zone. This is a lot for any teen to negotiate, but particularly so for the teen with ichthyosis, who may be more vulnerable to depression.

At this stage the teacher is most supportive as listener and mentor. The fortunate student will have a positive, interactive relationship with a teacher, nurse or guidance counselor who can help navigate the challenges of adolescence, or cultivate that special talent.

The adult’s challenge is to help the student find coping mechanisms and a personal style that works best for them. Ready-made answers and advice do not always apply to this young person. Instead, teens must be helped to find their own answers, even if this means watching them stumble along the way. It is important for the teacher to be an educator, sharing with colleagues, substitute teachers, student teachers and aides information about the student’s appearance, special needs and other issues. The more information others have, the more everyone can work together to make the school a supportive environment.

Above all, the teacher’s positive, open relationship with the teen can make a remarkable and lasting difference at a time when everything, it seems, is changing and uncertain.

Summary:  Key points checklist
1.    Start With The Positive - Every child has something unique to offer the world. Focus on what the child can do, enjoys doing, and does well.
2.    Respect The Child’s Physical Limitations - Create a supportive environment that allows the child to take self-care measures without embarrassment or shame, and in ways that minimize his or her being singled out.
3.    Different is OK - This is the crucial message that must be communicated to the child’s peer group. Answer questions about all physical differences with openness and frankness.
4.    Be Creative - When a child cannot participate in outdoor activities, develop meaningful and productive alternatives.
5.    Don’t Impose Scholastic Limits - Ichthyosis is physical, not cognitive. Avoid projecting physical differences into the academic realm.
6.    Don’t Be Overly Protective - In describing a teacher’s worrying and hovering, one child with ichthyosis said, “Don’t be afraid. Just let me be a normal kid!”

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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