Family Adaptation: Living, Loving and Angels
Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Sharon R. Katz, RN MSN - Mother, Wife, Nurse and Family Therapist
Introduction:
As a mother of three children (Seth 12 years, AS deletion positive), a wife of 16 years to Steve (president, Angelman Syndrome Foundation (ASF), USA), masters prepared child and adolescent psychiatric nurse, and family therapist, I am amply prepared to be able to educate you on a large variety of topics. I could speak for hours on the topic of sibling relationships, psychological developmental stages of an Angelman child, couples relationships, or even grandparent's issues. In twenty minutes, I must limit my focus to the critical topic.how to LIVE with an Angelman child within the family.
Living a day to day life, even without an Angelman child is a challenge. We all have hopes and dreams of how our lives could be. We dream of loving and being loved. Exploring the world, and living our dreams. An Angelman child in our midst does not mean the end of these dreams, but adaptation. This talk today will hopefully give you some tools to use to adapt to living and loving with an angel in our families.
Normal Emotional Struggles
Before I begin to discuss adaptation stages, I must give a plug for my professional life as a psychotherapist. Raising a handicapped child is a very difficult job. Even in normal families, without children with such challenges, many individuals struggle just to get through each day. Depression, anxiety, and deep emotional problems might hold us back from truly experiencing life. If you were prone to everyday struggles prior to children, finding yourself with the overwhelming task of raising a handicapped child will be emotionally draining. Depression is an illness that inhibits your problem solving ability and emotional energy. Symptoms of depression include: feelings of helplessness, hopelessness, physical lethargy, poor appetite (or overeating), wanting to sleep all the time or getting no sleep, negative thoughts, suicidal or even homicidal ideation. These feelings are treatable, but could create a large obstacle for adapting to life's challenges. If life really gets you down, reaching out for an empathetic and capable psychotherapist or physician could be a lifesaver. Such a professional could assist in developing a much healthier mind, enabling you to develop a positive and energetic self-esteem to assist you in raising your handicapped child. They can help you learn to overcome emotional struggles, address fear, learn to challenge your thinking, and communicate more effectively with your spouse, your family or your physicians. In many ways, they can coach you through the hardest time in your life. Nothing is hopeless.
Early Adaptation
Most families embrace the prospect of having children with great excitement and expectation. Having a child with a disability shatters the dreams we had of our relationship with our child, our relationship with our spouse, and greatly impacts the other children in the family. We all have to adapt to the having a handicapped child at our own pace, reforming expectations and dreams. The truth is.life goes on. It does not stop for your adaptation or search for answers. You still have your job to do, a child or children to care for, and a relationship with a husband or wife to continue, and emotional needs to satisfy.
Sometimes this pace is too slow for our spouse. They want us to be able to spring into action, know all the answers and get on with raising the child regardless of the situation. Our other children do not know enough to understand that anything would be different for them. They still have normal child needs, and push for them to be met. Your AS child will still have needs, and you need to respond to their normal pediatric needs and illnesses as you would every other child.
Every one of us in the family, from the grandparent's to the siblings go through the stages of adaptation. As parents, we need to have a higher level of emotional grief and adaptation, as we are on the front line of caring for our Angelman children. The first stage of adaptation, denial serves a real purpose. Denial buys us time needed to discover the inner strength to handle the problem and makes the pain bearable. When parents can find the inner strength and the external support necessary to face the reality of the situation, then they can move on to seek answers to what is different about their child.
It is not unusual for parents to blame themselves for something they did or did not do prior to birth that caused their child's impairment. This is part of the intense sadness, shame, and anger that allows gradual acceptance of the impact of a disability. With Angelman Syndrome, once families understand the mechanism of transmission and the chromosomal abnormality, the level of guilt and shame diminishes considerably. Ambivalence to educate themselves about Angelman Syndrome indicates fear and inability to accept the reality of the diagnosis. Families need to gain an understanding about the syndrome, beyond what they are experiencing. We now have amazing advantages in ways families can reach out. Through the internet, families can see pictures of other children, communicate to other families through the Angelman Syndrome mailbag, direct their friends and physicians to gather their own information on the various web pages, and get phone numbers of contacts in their areas.
As regional Angelman Syndrome representative for the past 6 years, I receive many phone calls from parents in the early stages of accepting that their child has Angelman Syndrome. The common questions reflect the unknown of what to expect anxiety and fear. In these initial calls, they do not know what to say, let alone ask. Anxiety spills over in their voices. Some calls come when families are in crisis over seizures, or another medical problem, but other new families generally call to understand what Angelman Syndrome means on a practical level. They want to know about my experience, and what my son has done throughout the ages and stages of growth, school, and dealing with other siblings. The gradual sense of acceptance is reflected in the end of these conversations, as they really did not know what to expect, and have had answers to
Anxiety of the unknown is normal. We fear how this will impact on your life, your relationship, and the future. Anxiety and fear can inhibit our dreaming about the future. Connecting with another family with Angelman Syndrome is an important step in acceptance as it decreases anxiety and addresses fears. Without this connection, we can not easily become confident and proactive parents. We would spend too many hours focusing on the diagnosis and medical treatment, and not learning how to live with it.
Adaptation Phase
Our AS children can not convey their needs to us verbally, and we need to learn to read into their needs and actions. During the adaptation phase, families learn to read the needs of their children, and tend to the tasks of daily living. This can be exhausting without the support of others to assist us, teach us and our children, and direction of others in the same situation.
Every family has different needs for support, and different issues. Some families have supportive elders, siblings, or friends eager to assist. These support systems learn as much about the Angelman syndrome child as they can, attend conferences, and give their time and energy to enabling you to have time away. Many families have more difficulty with extended family accepting our AS children, especially grandparents. This becomes evident in family invitations not being extended, forgotten birthdays, lack of supportive visits to assist in childcare.
Support begins with sharing our emotions in a supportive manner within our own household. Couples need to understand each other's needs, and must share emotions about how they are coping with having a disabled child. In the United States, the divorce rate is very high. About 50% of all marriages end in divorce. Among families with a handicapped child, the average is estimated to be 50% higher than in "normal" families. Many divorces could be avoided through working on issues in the marriage, instead of abandoning or ignoring signs of trouble. Everyday I see people in my office who search for ways of communicating their needs to their spouses, learn to deal with anger, and learn to grow.
Divorce might be a reality for some. Some relationships are too dangerous to keep together. Some couple do not have common interests, ideals, personalities, and are not compatible. Many single parent families with handicapped children that divorce, struggle to survive, living at or below the poverty line. Couples need to learn to communicate their feelings, and deal with issues as they arise. As regional representative for the Angelman Syndrome Foundation in the United States, I am aware of several single AS parents who are very happily found good supportive relationships after divorcing.
Building a support system is a key to adaptation. It is impossible to live without the support of others. We need the input of educators, physicians, nurses, and specialists to give us expert advice on how to enable our children to reach their potential. We need to know who we can ask for child care assistance. We need to be able to ask other families questions, and use older AS children and other families as inspiration.
Community involvement with your Angelman child is the final phase of adaptation. Life does not exist just within your family home, but beyond its four walls. To live means the ability to experience the sights and sounds of the community. Being accepted in your community begins with your acceptance of your child. Communities take cues of how to react from the families. They will adapt to your needs, once they understand what is needed, and educate themselves on how they can meet these needs. We need to examine how our children can function in schools, churches or synagogues, sporting teams, social events, holiday resorts, shopping complexes, restaurants, or any place you wish to go with your family.
Religious institutions are traditionally inspirational settings for prayer, meditation, and emotional growth. Religious services follow consistent order, ritual, and social expectations. The holidays involve symbolism. I believe that all individuals with AS, in fact all people with disabilities benefit from exposure to religion. The consistency of the rituals and rote and repetition of the routines can be very soothing. The support systems of religious institutions advocate acceptance of all. Hold them to their creed, or move to more accepting environment. Our Angelman children should have a place in any house of worship, and we need to feel welcome in such an environment.
In Conclusion, A Personal Reflection
My son Seth went to the neighborhood elementary school, attending in a regular classroom. He had specialists and a full time aide to assist him and his teacher. Over the 5 years he attended the school, he had a consistent group of peers who he learned valuable behaviors, social expectations, and daily routines. We have used our public funding to hire a special child care that continues the educational process of school in our home. We travel with Seth on vacations, adapting our choices to enable the whole family to be included. Seth was on a special little league team a few years back, but regularly attends his bothers sporting events. Our Jewish synagogue recognizes the importance of including Seth in rituals, and educational activities. We will be celebrating Seth's Bar Mitzvah on April 28, 2001 with a community celebration.
Steve and myself could not have achieved this level of adaptation to Seth without the heart wrenching emotions all families go through. We worked hard over many years to communicate about our emotions, needs, and supported each other. We recognized the short comings of our families support, and found other supports in our community to assist us.
Barry and Jason, Seth's siblings, have had to learned a great deal. They attended the same school with him, and were never harshly teased or treated by their peers. This enabled them to accept their brother. Indeed their patient, positive, and compassionate manner developed from having Seth as a brother.
The Angelman Syndrome Foundation, Audrey and Harry Angelman, and the families we have met over the years have given us a wealth of strength and knowledge. We have truly grown to be better, more loving, and giving individuals because of our experiences with Seth and Angelman Syndrome. All the years of university medical and psychological education, never taught us what we learned from the Angelman community.
In closing, I wish to share with you all a poem I received from an Angelman Syndrome Foundation newsletter long ago, when we were new parents. From this poem I began to believe we could gain from learning to adapt to Seth's life, laughter, and that there is a larger purpose for us all. The author is unknown.
Heavens Child
A meeting was held quite far from earth
"It's time again for another birth"
Said the Angels to the Lord above,
"This special child will need much love."
His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From the folks he meets way down there.
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped.
So let's be careful where he's sent
We want his life to be content
Please, Lord, find the parents who
Will do the special job for you.
They may not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild
Is Heaven's very special child
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