Fathers' Reactions to Their Child's Diagnosis of Down Syndrome

Terre K. Graham Rockhurst University American Speech-Language-Hearing Association Convention, Philadelphia, PA November 18-20, 2004 Poster 0960

Reprinted with the permission of the author (Revision 2005)

Author's Information

You may contact Dr. Graham at:

Wichita State University

1845 Fairmount

Wichita, KS 67260-0028

316-978-6866

Background Information

• Choice of topic
  • Passion for children/adults with Down Syndrome.
  • Father representation in literature.

"Father" Defined in the Literature

• Social role has changed dramatically in the past 100 years.
• Mother – nurtures/Father – adventurers.
• Mother – experienced caretakers.
• Father – inexperienced who had to learn the competencies of child care.
• Participant Comment – "When mothers are seen with their children, they are said to be mothering or parenting – when fathers are seen – they are called babysitters."
• 1960's & 1970's – increased interest in and study of the role of the father.
• 1980's – fathers described as interested in the care of their children but weren't spending as much time with them as the mothers.
• Included in the birthing process.
• Interactions considered less verbal but more vigorous, physical, and play oriented than mothers. (Sparling, J., Berger, R., & Biller, M. E., 1992)
• Traditional role of the mother is familiar, and the effects of maternal behavior on young children well studied, if not well known. (Clarke-Stewart, 1978).
• Fathers are "forgotten contributors to child development" (Lamb, M. E., 1975).
• Difficult to generalize about fathers whose children have special needs because many factors affect their experiences including:
  • Type of disability
  • Health and behavioral characteristics of the children
  • Fathers' education
  • Personal characteristics
  • Financial resources
  • Employment
  • Marital status (Lamb, M. E., 1986)

What is Down Syndrome?

• Chromosomal disorder caused by an error in cell division that results in the presence of an additional third chromosome 21 or "Trisomy 21."
• Most frequent genetic cause of mild to moderate mental retardation and associated medical problems.
• Occurs in one out of 800 live births, in all races and economic groups.

Characteristics of Children with Down Syndrome

• Flattening of the back of the head.
• Slanting of the eyelids.
• Small skin folds at the inner corner of the eyes.
• Depressed nasal bridge.
• Slightly smaller ears.
• Small mouth.
• Decreased muscle tone.
• Loose ligaments.
• Small hands and feet.
• 50% of all children have one line across the palm.
• Often a gap between the first and second toes.

Health Concerns Related to Down Syndrome

• 60-80% have hearing deficits.**
• 40-45% have congenital heart disease.**
• Intestinal abnormalities.**
• Eye problems.**
• Nutritional aspects.**
• Thyroid dysfunctions.
• Skeletal problems.
• Others – leukemia, seizure disorders, sleep apnea, etc.
  ** Concerns apparent in this study.

Prenatal Assessment and Diagnosis

• Amniocentesis
• Chorionic Villus Sampling (CVS)
• Percutaneous Umbilical Blood Sampling (PUBS)
• Maternal Serum Screening (Multiple-marker screening/Triple Test)
• Ultrasound: Level 1 and 2
• Genetic Counseling

Relationship of Down Syndrome Incidence to Mother's Age

Purpose of the Study

• Describe the responses of fathers following the birth of their child with Down Syndrome.
• Effects of the child's birth on their family and daily life.
• Examined the fathers' thoughts and ideas regarding their role in the family.
• Examined fathers' perceptions regarding their involvement in:
  • Development of child's language
  • Intervention
  • Educational planning

Participants

• 11 fathers
• Child with Down Syndrome between the ages of 0-5 years old.
• Volunteered through support group/Down Syndrome Guild.

Father Descriptors

• Marital Status: 11 fathers married
  • Years of marriage ranging from 3-21 years
• Age Range: 31-50 years old
  • 31-35 years old: 3
  • 36-40 years old: 2
  • 41-45 years old: 5
  • 46-50 years old: 1

Children Descriptors

• Males: 7     Females: 4
  • 6 mos. old: 1 child
  • 1 years old: 3 children
  • 2 years old: 4 children
  • 3 years old: 3 children
    • 1 set of twins – one with Down Syndrome and one developing typically

Siblings

• 2 children: No siblings
• 2 children: 1 sibling
  • Sibling was older
• 6 children: 2 siblings
  • 3 of the 6 - child with DS was youngest
  • 2 of the 6 - child with DS was in the middle
  • 1 of the 6 - child with DS was a twin, younger than other sibling
• 1 child: 3 siblings
  • Siblings all older

Fathers' Description of Their Child

• Easy going
• Fun to have
• Outgoing
• Stubborn
• Independent
• Light of our life
• Just one of the boys
• Little love bug
• Observant
• Imitator
• Very determined
• Engaging
• Sense of humor
• On the go
• Having a bad day – makes it all better
• Fearless
• Very happy/active
• Greatest thing that ever happened to the family
• Angelic
• Loves music
• Good natured
• Rarely cries

Timeframe of Initial Diagnosis

• Knowledge of diagnosis
  • 1 family knew prenatally (amniocentesis).
  • 10 families knew postnatally.
  • Views on prenatal testing.
• Diagnosis relayed
  • Parents together/parent alone.
  • Immediately at birth/hours later.
  • Confirmed within 3-5 days up to a month.

Father's Reaction to Initial Diagnosis

• A mountain of emotion coming at you.
• Hit by a ton of bricks – a slap in the face.
• Emotionally you are in a valley and aren't coming back up.
• In room at end of corridor – away from everyone else.
• Elephant in the room.
• Stages – Denial, Grief, Acceptance

The Day the Music Stopped

"It was the day the music stopped. Sadly, that is how my wife and I remember the birth of our twin sons. Before they were born, the hospital delivery room was bustling with activity, a happy medical team and LOTS of upbeat music. It was just like the movies."
"However, within minutes, we learned that one of the twins had Down syndrome. Instantly, the "chatter" ended, activity slowed and – you guessed it – the music stopped. At that time, we thought the abrupt halt to all that was upbeat in the delivery room represented how the rest of our lives – as well as my son's – would be."

A Father's Perspective #2

"I'm sure her intentions were well meaning. But I still struggle with what in the world was going through her and the Dr.'s minds. Are they truly sorry for these children? Do they believe that they cannot have hopes and dreams? How can we raise our children without any expectation for greatness? Certainly as we see them develop, we can frame a degree of success for them. But we obviously are not in control here."
"It does irritate me that they cannot give us the benefit of Divine intervention in my life or at least the fact that we could possibly have some influence on our children. I can only guess that they wonder if we made a choice here, but that is not entirely true. Our choice was to have a baby. And that is just what we got."
"I have to tell you that the medical profession was turning out to be the last place I wanted to go for support. I've always thought that perhaps because they saw and knew too much from their work experiences, their judgment was clouded. Our daughter was no longer a person, she was a diagnosis and the medical profession is so good about giving you the worst case scenario."

Medical Professionals

• Verbal checklist of inabilities: DS vs. Typical.
• NICU Pediatrician picked apart the child.
• Pediatrician unfamiliar at first, more familiar on second visit.
• Nothing helpful to say – just love her like a normal child – like they wouldn't anyway?
• Geneticist gave results like a death sentence.
• Very impersonal, matter-of-fact, morbid.
• A great deal of sympathy relayed.

Comments of Professionals

• Shame on you.
• I'm sorry.
• I hear they are lovable and good natured.
• You better pay close attention to the mental health area because you know......
• Typically very happy kids.
• She seems to be incredibly alert.
• Of all the different birth defects, if you had to choose one, DS is one of the better ones.

Information Provided to Parents

• All fathers expressed limited knowledge of Down Syndrome initially.
• Internet searching
• Information provided at hospital:
  • 3 – ring binder
  • Social worker
  • Videos
  • Pamphlets
  • Other parents with children with Down Syndrome
  • None
• Books
• Referred to the DS Guild of Greater KC

Effects of Diagnosis

• Marriage
• Siblings
• Extended family
• Co-workers

Effects on the Marriage

• Brought closer together.
  • A united front.
• All on the same page.
• More in depth discussions.
• Provided them with resolve regarding their purpose in life.
• Ever evolving framework from how they judge and deal with things.
• Important to share feelings with your spouse.
• Big hit on the marriage but are much stronger.
• Takes a toll.

Effects on Siblings

• How do you tell them?
• Do you tell them?
• Live in the moment – events, therapies.
• Some jealousy due to extra attention.
• Majority very protective.
• Comment: Did I have DS when I was little?

Effects on Extended Family

• Where did this come from?
• Very supportive.
• Had to broaden knowledge base of family members.
• Difficult for some to share with family due to amount of emotion.

Effects on Co-Workers & Friends

• Relayed to boss and close co-workers.
• Need-to-know basis.
• Difficult because they didn't want pity.
• Generally, very supportive.
• Sent a birth announcement or let others do the relaying of information.
• Comments:
  • You're still a parent, it's just a different starting point.
  • Does he/she have Down Syndrome a lot or a little bit?
  • Will he/she outgrow it?
  • We'll love him/her anyway.
  • Oh... ... ...

Early Intervention

• All families started early intervention as soon as possible.
  • 3 weeks to 6 months
  • Infant-Toddler Services
  • Infant Development Center
  • First Steps – Missouri
  • TARC – Topeka Association for Retarded Citizens
  • Early Childhood Preschool Classrooms
  • Both parents involved as much as possible.
• Depending on job situation, mom typically involved in watching therapists, passing information along to father.
• Menu of items available.

Role in Language Development

• Dependent upon work schedule.
• Importance of being involved.
• Reinforce what therapists are doing.
• Praised wives for their involvement.
• Goes to daycare and watches therapists.
• Many saw their role as physical.

General Comments

• It's an honor to be their parent.
• Thankful child was born today vs. past.
• Forced to be in the moment for what you're trying to accomplish – not looking down the road too far.
• Appreciate the little steps.
• More protective of how people think of my daughter and will deal with her.
• Don't define expectations by the DS.

Support Group Participation

• Down Syndrome Guild of Greater KC
  • www.kcdsg.org
• Many attended events within 2-4 mos. after birth of child.
• Many are involved on the board, in fund-raising events or host area groups.
• Father vs. Mother's Night Out
• Newsletter
  • Father's corner

Child's Future

"If you treat an individual as he is, he will stay as he is; but if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be."
— Goethe

Hopes for the Future

• To be just like the rest of my children and to have all of the same opportunities.
• To be independent and possibly live on their own.
• To go to their own prom.
• To get married or have a significant other.
• To be successful in school.
• To have many friends and a social life.
• Will she be someone's girlfriend?
• What will happen when I am gone?
• Doesn't want siblings to be sole bearers of caretaking.
• No concept.
• To have a place in society as we all do and not be pitied.

What Does This Mean for Professionals?

• Continued education of peers/co-workers about disabilities in general.
• Providing a "menu" of services for families.
• Keeping in mind what the child can do vs. what they are unable to do.
• Treating fathers with equal importance at meetings, during therapy, etc.

References

Clarke-Stewart, K. A., (1978). And Daddy makes three: The father's impact on mother and young child. Child Development, 49, 446-478.

Lamb, M. E., (1975). Fathers: Forgotten contributors to child development. Human Development, 18, 245-266.

Lamb, M. E., (1986). The role of the father in child development. NY: Wiley.

Pueschel, S. M. (1990). A parent's guide to Down Syndrome: Toward a brighter future. Baltimore: Brookes.

Sparling, J., Berger, R., & Biller, M. E. (1992). Fathers: Myth, reality, and public law 99-457. Infants and Young Children, 4, (3), 9-19.