Effects of WAS on the Family
Epidemiology & Disease Mechanism
Treatment of WAS
Coping with WAS
A major illness of any kind effects not only the person who manifests the illness but also the entire family system surrounding them. Families are like exquisitely balanced mobiles (think of wind chimes or the musical mobiles we often hang over the beds of our newborns). Families rely upon the finely tuned balance of their system to provide a sense of security, safety and predictability with every member having their own place and role within the system. When a major illnesses such as the Wiskott-Aldrich Syndrome enters the system it shakes up and disrupts this exquisite balance and causes discord, uncertainty and chaos within the family as each member attempts to deal with the unexpected and unwelcome effects of the intruder (WAS). Families living with Wiskott-Aldrich Syndrome are challenged by many stressors and often struggle with the imbalance it causes. Some of the stressors of WAS include variability of the disease's presentation, sudden and unexpected onset of the symptoms (infection, bleeds, malignancies and autoimmunity), the lack of consensus in the medical community on how best to treat WAS, and the incurable nature of the syndrome without bone marrow transplantation that in itself carries significant risk of serious side effects including death. They also struggle with the potentiality that their child's symptoms may increase or worsen with age, and, because of the rarity of the syndrome, families are often dealing with a disease that is not well understood and specialists that are often hard to find. These types of acute and prolonged stressors naturally challenge the safety and predictability within the family system and also the emotional stability of all members within including the child affected with WAS as he ages.
Although each family is unique and each family member is different in the ways in which he or she responds to the stress and trauma associated with WAS, many experience moderate to profound grief, anxiety and or depression. Some experience hyper-vigilance, avoidance of situations or places reminiscent of traumatic events associated with WAS, have nightmares or recurring intrusive traumatic thoughts or images associated with the trauma and or isolation. While others may experience panic attacks, sleep disturbances, eating disorders, ADHD-like symptoms, under performance at work or school and or symptoms of oppositional defiance.
While parents often are responsible for the day to day care and well being of their child affected by WAS, they ultimately have little control over the natural course of the disease itself. This is not to say that the parents of these children are powerless to influence their own lives or the lives of their children. On the contrary, parents who have learned to take care of themselves and seek support from others outside their family system have developed positive new methods for coping with the stress and trauma associated with the Wiskott-Aldrich Syndrome and in this way have improved the quality of their own lives and the lives of everyone within the family system thus creating an exquisite new balance within their family that includes the Wiskott-Aldrich Syndrome.
Common Effects on the Parents
Parents are uniquely challenged with the grief associated with the loss of their "normal" child and "normal" life while at the same time they are threatened by the reality that they could lose their child affected by WAS to death. Concurrently, these same parents are challenged with the responsibility of caring for the needs of their affected child and his (or her) siblings. Too, they are charged with the daunting task of explaining WAS to their children (both those affected by WAS and those unaffected), extended family, friends and peers while at the same time desperately trying to understand it themselves. They are challenged by the inexplicable responsibility of making tremendous decisions regarding the medical care of their child affected with WAS, spend many hours traveling to and from doctors appointments, specialist appointments, and hospitalizations while at the same time somehow managing to get themselves to work so they can continue to pay the mortgage and provide health insurance for their child. Parents often feel isolated and alone in their grief and may have difficulty reaching out for help or locating support outside of their family. And Mothers who carry the WAS gene may feel guilty for passing it on to their sons.
Common Effects on the Couple
As a couple each spouse is faced with figuring out how to relate to the other through their own grief, and each is faced with reconciling how to manage the many needs of their new child as well as the many needs of his older siblings and still have time to spend with one another. Each spouse is faced with delicate negotiations around the medical choices they face with their child's WAS and they must somehow find a way to come to an agreement on the options available in managing it.
Common Effects on the Siblings
Siblings, too, face unique challenges. In the best of circumstances, older siblings are naturally challenged by displacement within their family system after the birth of a new sibling. Older siblings of brothers affected with WAS are additionally challenged with the loss of the life they knew within their family before it was affected by WAS. Many of these older siblings are too young to understand the nature of what has happened to their family and often experience grief over the loss of their parents, who are now torn between caring for them and caring for the many medical needs of their younger brother. They may not understand why suddenly they are kept away from their new brother (in order to protect him from illness) and may perceive themselves as the cause of his illness or the cause of the loss of their parents. These kids pick up on their parent's emotions, often do not know how to manage this and in turn act out behaviorally, become quiet or angry, or take on the role of parentified child as they attempt to control what is happening around them by taking care of their parents or siblings.
Younger siblings born after the birth of an older sibling with WAS must sometimes have to deal with reconciling why their parent's spend more time and energy looking after their older sibling's needs than looking after their own. They may perceive this discrepancy as related to love and perceive their parents as loving their older sibling more than them. They, too, may act out in much the same ways as the older siblings.
How to Build Emotional Resiliency in Yourself
Join a support group! If you are reading this, Congratulations, you are already on your way to building emotional resiliency!!
Recognize that we all experience trauma differently and that all of our responses to it are normal!
Trust that your psyche will allow the processing of the trauma in ways that are manageable rather than all at once. Give yourself the necessary time it takes!
Recognize that we all experience trauma differently and that all of our responses to it are normal!
Debrief traumatic experiences as soon as possible (preferably within several days after the traumatic event) with someone outside of the family system (Pastor, Rabbi, Imam, and or Psychotherapist)
Keep a personal journal and take those traumatic thoughts, sensations and emotions out of your body and put them down on the page! Afterwards, close the book.
Whenever possible, engage in enjoyable activities that take you out of your head and put you into your body (art, reading, poetry, sports, golf, animals, exercise, hiking, nature)
Challenge your "emotional backpack" (past trauma and losses). Current traumas often stir up past trauma and become mixed. Resolve past traumas and losses whenever possible.
Challenge unhelpful belief systems ("It is my fault", "I must keep the house clean or I am a bad mother" , "I must remain on at all times in order to keep my son safe" "I can control this illness")
Accept the help of others. If it is not offered, ask for it!
Allow the unnecessary chores to go undone. The house does not have to be perfect!
Interrupt catastrophic thinking and if you find yourself engaging in it, challenge it with recognition of positive current aspects and/or with thoughts of possible positive outcomes.
Offer to help someone else who may be suffering! Helping others helps us, too.
Try to remain present in the moment and try to find the beauty that is always offered within it.
How to Build Emotional Resiliency in Your Children
Speak to your children (both those affected with WAS and those not) about WAS as soon as possible and continue talking! WAS does not go away so don't stop talking but do so in an age appropriate manner.
Speak to your children about what is happening not about what hasn't yet happened! Remain in the present!
Children are often overwhelmed by too much information and are unable to take it all in. Provide them with small bits of truth and information, invite them to ask questions and let them know that you will be available to them when and if they want to talk to you about it.
Be patient with your children, trust them, they will come back and ask questions. When they do, take a breath, and go back to telling them the truth in age appropriate ways.
Children are often frightened by their parent's vulnerable emotions (sadness, fear, anger), whenever possible speak to your children about your emotions and avoid speaking to them when you are in your emotions. There is a difference!
Take the time to process your own emotions first before you attempt to speak to your children about them and their own. Think of it in terms of how flight attendants instruct parents to apply their own oxygen masks before applying oxygen masks to their children. There is a good reason behind this!
Allow your children to speak about their own vulnerable emotions, thoughts and experiences. Practice reflective listening, accept their experience unconditionally and validate them for having the courage to share it. Become comfortable with the knowledge that you do not have all the answer to all of their questions and become comfortable with answers as simple as "Oh", "Hmm", "I hear you", "I get it" and "Wow". We do not have the power to take away or protect them from their experience but we do have the power to witness it for them and this in and of itself is profoundly helpful.
Parents often have difficulty or feel overwhelmed with the task of speaking to their children about WAS. If you are having difficulty, recognize that this is a normal response to a difficult situation and seek out professional help for yourself and for your child.
Recognize that although WAS is not normal, your child affected with WAS certainly is! And make sure he knows this, too!!
Protect the affected child and his siblings from overhearing your frank conversations with doctors, friends and family about WAS, it's symptoms and the risks your child faces.
Openly and honestly recognize that indeed your family has changed and it will be different from now on.
Express your love and commitment for each child in your family directly to that child and explain why you must spend so much time with the child with WAS.
Build into your new life some of the "normal" activities you used to enjoy before WAS entered the family. Routines and traditions help us stay connected and grounded!
If you have to be away from home for medical reasons. leave a photo album for your children at home and take another with you for your child affected with WAS. Be sure to include pictures of each family member in your albums and of your family doing "normal" family activities. These albums often help the children at home and the child in the hospital remain connected to you and to each other.
Try to remain present in the moment and find the beauty that is always offered within it.
Finding a Therapeutic Counselor
Living with WAS challenges families in many many ways including emotional, psychological, physical and spiritual and family members are often in need of support. Whereas our parents, siblings and friends can offer a caring ear or shoulder to cry upon, they, too, are often traumatized by WAS and sometimes have difficulty managing the needs of their loved ones and also their own. It is in these situations that family members may turn to Religious and/or Professional Counselors for help. Whereas it was once considered a sign of weakness, today many people are benefiting from the support they receive from counselors and in doing so are better able to cope with the many challenges they face.
Religious counselors are usually highly trained and are easily found by way of a phone call and or visit to the local Church, Synagogue, Temple or Mosque. These counselors are often available to support grieving families and do so from the perspective of their faith.
Professional Counselors (Marriage and Family Therapists, Psychologists and Pyschiatrists) are also highly educated and trained in providing therapeutic counseling and they do so from a more universally spiritual perspective (although there are professional counselors that practice their profession from the perspective of their own faith). Word of mouth is usually the best way to locate an effective counselor as most do not actively advertise. Often doctors and friends are good sources of referrals. Most states oversee the licensing process for these professionals and provide online databases of the professional counselors practicing in their state by the city.
Websites that list providers of professional counselors by state/city:
Whereas it was once considered a sign of weakness, today many people are benefiting from engaging in psychotherapy. Families who are challenged with WAS find themselves suddenly managing situations in which they often have very little control and yet must remain mindful of the many risks their child faces. With the help of counselors many WAS families have found the tools they need to support not only their children who are affected by WAS but also themselves.