Caregivers' Guide: Section 5
Looking Ahead
Raising a happy, well-adjusted child
Once I stopped blaming myself and came to terms with it, it seemed to just flow into Ben’s life, and he became a happy, generous little boy, so different from the child who used to be lazy, moaning, and overwhelmed by the sense that he was different.
All parents of children with ichthyosis hope and wish for improvements in their child’s physical condition. This is only natural. Wouldn’t it be nice if she could wear normal shoes, or if he could walk into a store without drawing stares? Yet, these are dreams that rely on the superficial assumption that “beauty is only skin deep.” Beauty is the inner person we want our children to become: a person who is bright and kind, loving and humorous, thoughtful and generous.
Dr. Wilmer Betts*, a psychiatrist and father of four children, three of whom have ichthyosis, knows for a fact that children with ichthyosis can develop into successful, self-assured people. He urges parents to put more energy into accepting ichthyosis than in trying to find a cure for it; more energy into raising an emotionally well-adjusted child who copes well with the disorder than into elaborate physical treatments and endless searches for the “right” doctor. It is crucial, he says, for parents to accept that they didn’t cause the disease, nor can they cure it. A parent’s job is to accept it as a chronic disorder, relieve discomfort (both physical and emotional), reduce cosmetic problems, and help their child develop a healthy ego and a strong personality.
Parents should strive to develop an objective, unemotional attitude about the ichthyosis and its treatment, and separate this one characteristic from the child himself. If you need to give a painful treatment, explain it (don’t lie and say it won’t hurt), and then do it, preferably while distracting your child with some fun game, song, or activity. Don’t let yourself get delayed by crying or excuses. This just prolongs the bad moment for both of you and sets you up for a more elaborate tactic the next time. Imaginative games during treatments work wonders for some children. Be Goldilocks during one treatment, a low-voiced bear the next. It will relieve the stress for everyone if you are not wincing, your baby screaming, and the treatment lasting seemingly forever.
Parents have a legal right to be with their minor children during any medical visits. Calm your child during these times. Carry puppets, toys, or other diversions. Again, don’t lie to your child about treatments. Explain what will happen, why they need it, and how long it will take. Remind them that the quicker they get through it, the sooner they will be able to do that special activity you have already described: feeding the ducks, reading a special story, whatever.
Touch your child often, and frequently express your love and pride. If others make hurtful comments, teach them by example how to deal with rudeness and cruelty in a dignified way. Later, let them know that those people should be pitied for their ignorant, mean attitudes. In this way, you teach sensitivity and remove the onus from your child. The fact is, although your child has a problem with their skin’s metabolism, this is a far less serious problem than the handicap of a person who lacks sensitivity and tolerance.
Avoid talking about your child as if he or she were invisible. Never ask your child to pull down her sock and show your neighbor how nice the ankles are looking this week. Your child is not a specimen. At a very early age children become sensitive to how you treat them. Be sensitive to your child’s privacy and, most of all, dignity.
As your child grows, do not let their skin become an excuse to shelter themselves and avoid activities and people. Furthermore, a child with ichthyosis should be held to the same standards of good behavior that you would expect of any other child. It is not okay for your child to be rude or selfish. It is not okay for your child to hit you, or scream vicious things at you, even if you are administering a painful treatment. Set firm and specific rules in your household and be consistent in their application. Inconsistency can result in behavioral problems for your child with ichthyosis, and can breed resentment in their siblings.
The sooner you allow your child to take over the care and responsibility for their skin, the better. Every child needs to exert independence. Children as young as three can begin putting on lotions or scrubbing skin with a pumice stone. (At FIRST conferences, young peoples’ most frequent comment is how they wish their parents would let them do more for themselves, and this includes decision-making.) A 12-year-old should be able to help weigh the benefits and risks of playing soccer, for instance.
Within reason, let your child pick out school and play clothes, making sure there are plenty of things in the closet that do not cause irritation. Soon they will learn to dress for the weather and skin comfort. Over time, you will no longer get into battles at the closet, and your child will become more self-confident.
Encourage your child to have friends. While they should know you are always there for them, early on they will begin needing support from others beyond the immediate family. Suggest to your child that they contact FIRST for help seeking connections with other children their age. Closer to home, adolescents may need an adult other than mom or dad to speak with. This may be a special aunt, a counselor, clergyman, or a teacher.
You should resist your instinct to overprotect your child and shield them from outside contact, even if it means a few hard knocks.
If bullying becomes an issue, you’ll find a bullying resource sheet that addresses strategies for dealing with rude behavior and bullying, including expert tips, books, and best practices from those who have had this very experience.
*Dr. Betts passed away in November 2010
On the first day of school, Ryan’s kindergarten teacher sat down with the children in a circle and they had a talk about skin. What does our skin do for us? Are there different kinds of skin? Oh yes, there is brown skin and white skin and tan skin. There is freckled skin and skin with wrinkles and dry skin. All of the children were praised for their uniqueness and encouraged to touch each other’s arms to experience the different colors and textures. Ryan’s skin was just as fine and different as everyone else’s, more interesting, perhaps, than Alice’s, but not really as fascinating as Nathan’s hundreds of freckles and two skinned knees.
When parents of children with ichthyosis talk with one another, they quickly learn there are many ways of parenting these special children. One mother keeps her child inside and only sends him to school in gloves, to protect his hands. One dad decides to let his daughter play intramural basketball, even though he knows the sport will take its toll on her skin. Another mother has to return to work six weeks after giving birth, even though it means training a babysitter in complex medical regimens. As you make decisions about your family’s future, keep in mind that children are different, the severity of their condition is different, and parents are different, too.
Some families can afford to have a parent stay at home full time with their child. This may put the couple at ease knowing that their child is getting the most loving, competent care there is. For others, this would be a major financial or emotional strain. If you need childcare during infancy, the ideal caregiver may be a family member.
You may find that a caregiver who dealt wonderfully with your first child (without ichthyosis) cannot cope with a special needs baby. If this is so, don’t feel guilty about finding a new caregiver. In fact, your decision might be met with relief by a person who feels obligated to stay, but knows she cannot cope with the many challenges of caring for a child with ichthyosis.
If your baby’s ichthyosis is painful, seek a caregiver who is compassionate, but able to demonstrate a nurse’s detachment during treatments. A caregiver for such a baby must be intelligent, flexible, a quick thinker, reliable, and a lover of children. You do not want someone who is competent, but cold. You can check the availability of licensed practical nurses in your area, or a nanny or caregiver with an interest or experience in medical care.
Such people do exist. Many of us have found wonderful devoted caregivers whose loving care helped us realize we are not the only people who can cherish and care for our children.
This is just as important for families where a parent stays home to care for the children. “Burn-out” can flourish when a parent rarely gets a break from the hard work of raising a family and keeping a home on top of the responsibility of caring for a special needs child. Find a friend, relative, or mature high school or college student, and train them to care for your child so you can get away occasionally from your family responsibilities. In many areas, state or local social service agencies provide access to respite care, a program providing temporary in-home care of children with special needs so that primary caregivers can have much needed breaks.
Eventually, most parents will want to explore outside childcare. The time will come when your child will need to begin interacting with other children in a play group, preschool, or school setting, if only for a few hours a week.
Most experts do not recommend home schooling for children with special needs unless their physical condition would be compromised by contact with others. Children whose conditions are “disfiguring“ are likely to do best if they interact with other children at the earliest possible age. Two and three year olds take people “as they come” better than seven year olds do.
Day-to-day contact and play with peers is a normal part of childhood development. Beginning these experiences early will offer your child essential social skills, and will give your child friends to rely on later. A child who has spent the first five years of life isolated at home will enter school not knowing how to share, how to cooperate, or how to play affectionately with other children. Such children may have problems adjusting to school, not because of ichthyosis, but because they lived in a cloistered world.
Check out preschools and schools as soon as you can. By law, public schools must accommodate all children. Most private ones will too. But seek a school that will embrace uniqueness gladly and willingly. Schools that welcome people of many cultures and backgrounds are likely to welcome children with special needs. (Some even state in their brochures that they seek applications from children with disabilities and/or a special need because they feel this kind of interaction is valuable for all children.)
After you have visited several schools to compare their philosophies, environments, and teaching styles, it may be time to meet with the administrators of the ones you like best. In an objective way, explain ichthyosis and describe your own child’s condition and needs. Be careful to neither exaggerate nor downplay the severity of the condition. Ask whether the administrator believes the school can benefit your child. You might want to give the administrator some published information on ichthyosis, along with a letter from your child’s doctor stating that your child’s ichthyosis is not contagious and that he or she would likely fare well in child care.
Once your child is accepted into a program, offer to do an in-service with the center’s teachers. If your child would like to participate, let your child help demonstrate how to apply medications or lotions. Explain what an infection looks like and how to treat it. Explain what to do for a scrape or very dry skin areas, and be sure to explain the warning signs of overheating.
Encourage teachers to treat your child just like all of the other children. Preschool should be a place to play, get dirty, be silly, and make messy art projects.
Dress your child in comfortable clothes that he or she can get dirty. Keep extra changes of clothes at school and plenty of necessary medications, lotions, and sunscreen. Water play should be fine if lotion is used afterward. On hot days, put a spray bottle of water in your child’s cubby and remind your child to spritz to prevent overheating. Make sure the teacher knows why your child must do this. Even the sandbox may be fine for most children, although on days when your child’s skin is raw or open, you might ask the teacher to encourage alternative activities.
This said, you might be thinking “why should I let my kid get dirty and sweaty, not to mention possibly scraped up?” The answer is, because it’s part of being a kid. An occasional extra blister or scrape and some extra baths are a small price to pay for a childhood full of fun, games, and learning-by-doing.
FIRST offers a Guide for Teachers and School Personnel, which includes a thorough explanation of how to create a successful school environment for your child affected with ichthyosis. It is a great tool for both parents and teachers and can help make the transition as smooth as possible.
The occurrence of ichthyosis is unexpected in most families. The more you know about ichthyosis and how it came to be in your family, the better prepared you will be to make decisions about adding more children to your family. The hospital where you delivered your child with ichthyosis can refer you to geneticists and genetic counselors who can discuss the genetics of ichthyosis with you and inform you about the probability of future children having ichthyosis.
Prenatal tests can diagnose some forms of ichthyosis before a child is born. Depending on the type of ichthyosis involved, these tests may include amniocentesis, chorionic villus sampling (which provides the material for genetic sequence analysis), biochemical tests, or microscopic examination of a fetal skin biopsy. Genetic testing may be done to obtain information about the baby that might be helpful for delivery, or for making decisions about continuing the pregnancy.
You should know that prenatal tests are not always one hundred percent accurate. Further, the tests can be expensive and your health insurance may not cover them. Some may also pose a risk to the fetus. Prenatal testing should be discussed with your physician, and you should have a clear understanding of the risks, benefits, and reliability of any available testing.
Pre-implantation diagnosis is a relatively new technique in which embryos are created outside the body through in vitro fertilization. Genetic testing is performed on the embryos. Only the embryos that did not inherit the mutation are transferred into the woman’s womb to create a pregnancy. This method is performed at only a few specialized centers in the world. Because this procedure is invasive and has benefits and limitations, it is best to have a thorough discussion with your physician and the specialists who perform the procedure before you consider pre-implantation diagnosis.
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.
