Caregivers' Guide: Section 4

Where to Turn

I had always wanted a baby girl, and I had a closet full of beautiful baby cloths: pink rompers and dresses with lace. Rachel couldn’t wear clothes for almost a year, and I had a very hard time getting rid of the things I had saved for my “dream baby.” Eventually I did it, though, when a friend who had been infertile for years had a healthy baby girl, and my joy for her overcame my sense of loss.

Coping

The experts recognize that parents of children with ichthyosis hurt more than the children themselves. The hurt you may be feeling now is undeniable, and many parents before you have experienced it. Here are some tips from other experienced parents that may help you cope with your situation.

Share your feelings with your spouse. Don’t blame one another; strengthen each other. Share responsibility for learning about ichthyosis and become active about your child’s special needs. If you don’t have a spouse, develop a support system among family and friends.

Turn to those who have strengthened you in the past - friends, relatives, counselors, or clergy. If you find that someone you would normally turn to does not offer the support you need, look elsewhere. You may be surprised at which people end up becoming your strongest sources of support.

Remember, you are not alone. Parents who are experienced with ichthyosis may be your best source of information for the practical day-to-day questions about skin care and other care management concerns. These parents can offer you support, understanding, and encouragement. We encourage you to become active in FIRST’s Regional Support Network so you can interact with other parents in circumstances similar to yours.  Look into the Internet community as well.  Try out the links provided at the end of this booklet.

Take one day at a time. Worrying about negative possibilities will only drain your energy. Keep your attitude about your child’s prognosis positive and open. On bad days, visualize an older version of your child being a successful swimmer, a fine musician, a happy and sensitive adult. Your child can only benefit from your good attitude.

You may find yourself thinking about ichthyosis almost constantly at first. Over time, though, you will think about it less and less. As you become accustomed to your child’s skin, the lotions, baths, and other parts of the skin-care regimen, the ichthyosis will become a normal part of your life. In fact, you may find that it shrinks in importance beside the normal demands of parenting.

Although relatives and friends can offer wonderful support for you and your child, they may not support you in ways you need because they have difficulty understanding what you are dealing with, or they may find it too painful or overwhelming.  Most will be concerned for you and your child, but their lack of knowledge about ichthyosis may cause them frustration and embarrassment. They will not know what to say, so they may be silent; or they may say things that make them feel better, but which leave you empty. Their words might minimize or invalidate your feelings (“It could be worse...” “At least you have one normal child...” “It’s only his skin.”)

Of course, you can (when you have the energy!) take time to educate others about what you need. Reacting to every thoughtless comment will exhaust you over time and isolate you from needed support. For example, you can say, “It doesn’t help me when you say that, but it would help me if you could just listen and offer support.”  Involve family members in giving your child a bath or creaming.  The more they see, the more they will understand.  Share links to informative websites so they can get the information themselves as well as asking you.

Because you cannot change some people’s feelings, it may be easier to listen to the insensitive ones politely and then move on. Find other friends and supporters who will accept your child as he or she is, and who will support you in the ways that you (not they) truly need.

When you are out in public with your child you will sometimes encounter rude questions, remarks, or stares from strangers. Some of these people are sincerely curious, some are just plain nosy, but all of them are uneducated about ichthyosis.

You can choose to educate these people, or you can ignore them. Tell the stranger as little or as much as you feel comfortable discussing. Depending on how the stranger approaches you (curious, concerned, rude, intrusive, etc.), you might say your child has “very dry skin,” or that “my child was born with a genetic skin disorder.” Some find that using the word “disorder” rather than “disease” lets strangers know quickly that ichthyosis is not contagious. Many will compare their own experiences with eczema or psoriasis and suggest their favorite lotions or treatments.  Sometimes it is easier to simply thank them for the suggestion and end the conversation. To rude or pushy strangers, you might respond strongly, saying something like “I’m sure you don’t mean to be cruel, but I am upset by your intrusion.” Older children are often self-conscious of their skin and prefer that you ask them for permission to discuss their skin.  Experiment to find which responses work best for you in different situations.

If you haven't done so already, we encourage you to join the FIRST Facebook Group Page for Parents.  This can be a great resource for support, friendship building, and gathering tips from thos who are in your very same situation.


* FIRST also offers an awareness card that can be carried with you to educate people you come into contact with.


Grandparents
The most devastating thing my parents did was offer to raise our baby for us. It signified a complete lack of faith in our abilities, and made us feel that we could never turn to them for support in difficult times. It took years to heal our relationship with them, and the irony is, they were just trying to help.

Your child’s birth may profoundly affect the grandparents, who may have to deal with many of the same issues you dealt with, but without the benefit of having control over the circumstances. They, too, imagined the birth of a perfect grandchild whom they could boast about, display pictures of, and spoil with clothes, toys, and unbounded love.

Some grandparents may experience guilt if the ichthyosis is genetically traced to them. Others may react by focusing too much attention on the condition, becoming overbearing; or the opposite, by pulling away from the grandchild to avoid dealing with emotional issues. However, just as most parents do, they will probably overcome their initial reactions and become tremendous supporters and advocates over time.

In times of trouble, we tend to turn to our spouses first, and then to our parents - no matter how long it has been since we lived under their roof. We hope that our parents will respond to our needs calmly, and that they will be pillars of support. And sometimes they are. If your parents fall into this category, be grateful and let them help, always being careful that they do not exert undue control, which is rightly yours.

If your parents do not immediately offer the help you need, don’t despair. If they are overbearing, talk to them. Explain that you appreciate their help, but that you are capable of parenting your child. When you ask them for help, be specific about what you want or need. Generalized requests for help might inadvertently be construed as an invitation to take over.

Here are some suggestions from parents on “How to Be a Terrific Grandparent:”

  • Listen. Take cues from your children about what they need. Bolster their self-confidence and take note of situations they handle well. It may be difficult for you to know how to deal with your child’s depression and bad days. During these times, avoid invalidating comments like, “Look on the bright side!” or “Don’t think that way.
  • Express faith and admiration in your daughter-in-law or son-in-law as well as in your own child.
  • If you feel guilt, despair, hopelessness, or anger about your grandchild, express it, but to a friend, counselor, or clergyman. Don’t burden your child with your feelings, even though your feelings are completely normal.
  • Get to know your special grandchild beyond the skin condition. You can play a key role in bolstering your grandchild’s self-esteem.
  • Occasionally chip in to help buy medications or lotions. The expense of these can be a terrible burden for a young family.
  • When buying clothes, first get advice about materials, styles, and sizes that will be comfortable.
  • Avoid favoritism to a certain grandchild, either those with normal skin or with ichthyosis.
  • Offer attention and time to siblings during the times when they get lost in the shuffle as their parents care for the special needs child.
  • Once in a while, spoil your child and their spouse. Give them theater tickets and offer to baby sit.
  • If you can, learn your grandchild’s skin regimen and relieve the parents of their duties once in a while.
  • Learn about ichthyosis, and make contacts that your children may not have time for.  Subscribe to the Ichthyosis Focus newsletter. If you come upon a new treatment, medication or research project, offer to share the information with the parents. Don’t insist they follow a certain course, or voice doubts about their abilities to care for their child.

Siblings and their special needs

I don’t have ichthyosis, but my brothers do. Whenever we went out in public, like to the swimming pool, people would ask me what happened to my brothers. I always felt very protective and wondered why people bothered asking. What is the big deal? I have to admit; they sometimes did have a smell, but not a bad one. My little brother used to ask me to grease up his back with lotion. I used to hate doing it, but later I felt proud. My siblings have turned out to be such normal people with happy, productive lives.

Unaffected siblings may sometimes feel lost because their brother or sister with ichthyosis gets more of mom and dad’s time. Parents have to be sensitive to the troubling emotions that siblings of children with ichthyosis sometimes experience.

Children know more than we give them credit for. It is a mistake to assume that children can’t understand the unknown. Parents need to make sure siblings understand ichthyosis so it does not become frightening and mysterious. Explain the disease in words siblings can understand, and reinforce that ichthyosis is not their fault. When they are old enough, they must understand the genetics of ichthyosis long before they plan to marry and have children of their own.

Siblings may sometimes feel anger and resentment towards their brother or sister with ichthyosis. They may feel jealous, neglected, or rejected as they watch most of their parents’ attention, energy and psychological support flow to the child with special needs. Parents should acknowledge these natural feelings and reassure siblings of their importance in the family. Special time should be set aside for siblings in order to help build their sometimes-fragile self-esteem.

On the other hand, the experience of a sibling may be a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with ichthyosis, sometimes assuming responsibility beyond their years. However, the roles should be clear, and a sibling should never be made to feel responsible for care giving duties.

It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with ichthyosis, or to experience feelings of great joy in watching him or her achieve gains. Increased maturity, responsibility, altruism and tolerance, humanitarian concerns, a sense of closeness in the family, self-confidence, and independence are among the other positive effects you may observe in siblings.

Ultimately, ichthyosis is a family matter, regardless of how many in the family are affected with the disorder. Everyone in the family will have issues to deal with, will have good days and bad, and everyone’s well-being is important. 


Dealing with grief

When my daughter was born with EHK, I started to feel sorry for her and for myself. I knew in my heart when she was only three weeks old that she would never go to the prom or get married. Finally, my dermatologist told me to stop trying to predict the future and that my daughter would do exactly as she pleased. She said she couldn’t wait to dance at my daughter’s wedding.

You have just spent an entire pregnancy expecting and hoping for a healthy, beautiful, perfect baby. Giving birth to a child who does not meet these normal expectations can be traumatic. Under these extraordinary circumstances, it is normal to feel powerful emotions; anger, guilt, fear and hopelessness, to name just a few. However, as you become more familiar with ichthyosis and the care giving routine, initial fears will give way to relief, and eventually optimism. Look ahead and visualize happy times, like witnessing your baby’s first toothy grin or first messy meal.

Many parents’ reaction is to blame themselves for everything that is wrong with their child, even their genetic coding. Some mothers consider themselves inadequate or defective because they didn’t deliver the “perfect” baby, despite the fact that the origin of ichthyosis is an act of nature determined at the point of conception. Allow yourself to coast in and out of conflicting emotions without berating yourself for feeling differently than you assume (or someone else assumes) you should. If you feel incapable of handling your emotions, talk to someone close to you. Lean on a social worker, pastor, family member, or best friend. Many parents have found that getting in touch with other parents of children with ichthyosis provides an invaluable source of support. You can draw on the Foundation and its Regional Support Network to connect with other parents who have been in your shoes.  Consider attending a national family conference sponsored by the Foundation.  Family conferences offer the opportunity to meet with medical experts and other families affected by ichthyosis.


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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