It is a wondrous thing that if you manage a small thing like a silent smile at me, unfocused eyes trying so hard to see me... a haphazard touch by your hand, planted somewhere on my body when we play wrestle on the floor. I feel your life, your significance, your purpose. I become happiness, I become healed. I understand my purpose... you are my gift...
Friday, 11 November 2022
Monday, 3 October 2022
PARENTS OF CHILDREN WITH DISABILITIES AND STRESS
PARENTS OF CHILDREN WITH DISABILITIES AND STRESS
Raj Kumari Gupta*, Harpreet Kaur**
ABSTRACT
The present study examined stress among parents of
children with disabilities. 102 parents formed the sample of this study, 30 of
whom had children without a disability. A stress assessment test with internal
validity of 0.608 was utilised. This test had two parts: physical and mental,
former with 19 items and latter with 21 items. The test was applied to check
differences in stress, gender differences, and differences in mental and
physical stress. Results show that, most parents of disabled children
experience stress, physical and mental stress are significantly correlated,
gender differences in stress experienced occur more in the mental area, and
parents have higher mental stress scores as compared to physical stress.
INTRODUCTION
Diagnosis of intellectual and physical disability in a
child provokes a period of disequilibrium followed eventually by an adjustment
to life with or without undue stress. There are various stresses which emerge and
continue over time. Discrepancies between expectations and the development of
the disabled child continue bringing feelings of loss and grief (1).
A parent shows a series of reactions after knowing
that their child is disabled. These include shock, denial, guilt, sorrow, rejection,
and acceptance. Questions like ‘why me?’ ‘How can it be?’ keep arising without
answers. Some of them undergo tremendous guilt feelings, experience ongoing deep
sorrow, have strong under expectations of achievement, may have unrealistic
goals, may want to escape form reactions, and ultimately turn to accept the
child (2). All this can affect parents differently. Their physical and mental
health suffer (or it is perceived to suffer). Wikler (1) mentions that the continuous
stress chronically affects their lives.
Farber (3) found that initial stress in parents
appears to be sex-linked which shifted with time. Parents of severely disabled
children undergo more overall stress than parents of chronically ill or normal
children. According to Faber (4), jealousy and resentment may also develop in
siblings if the disabled child requires most of his parent's attention, leaving
short tempers and impatience for the others.
Jani (5) in a study examined the social problems
related to the presence of a disabled child in a family. Results indicate that
parental feelings were marked by ongoing anxiety about the future, especially
as the disabled child and parents gets older. Psychological stress with decreased
social interaction. Misunderstandings within family coupled with economic loss and
stress were significant facts associated with the presence of a disabled child in
the family.
Dupont (6) found in a review of a four-year caseload
of a small community mental health centre, that community mental health
services often had a policy of not providing services to families with a
disabled child.
Loeb (7) has expressed that parents of disabled
children face many special stresses. They have little opportunity to explore
their own needs, dreams, and personal challenges.
Fishman et al. (8) in their study examined the role of
parenting stress and parental depression and marital intimacy among parents of
disabled children and developmentally normal children. Results showed that
mothers and fathers of disabled children showed significant greater stress and
depression than parents with non-disabled children.
Heller et al. (9) found that parents of disabled
children, carry a heavy ongoing impact burden in terms of living within the
daily challenges of caring for their disabled child.
Peshawaria et al (10) stated that there were inhibiting
factors affecting parents in trying to cope in caring for disabled children. The
challenge and pressure lie in trying to balance caregiving and ‘normal’ life. Overall
support was mostly lacking.
Seshadri et al (11) reported a direct relationship
between the degree of perceived burden, social emotional burden, disruption of
family routine and disturbance in family interactions and relationships for
parents with disabled children.
Hedov et al. (12) studied self-perceived health in
Swedish parents of disabled children. They found parents of disabled children had
significantly lower, less favourable scores on self-perceived health than did the
control group.
Shin and Crittenden (13) in their study provided
explanations for wellbeing of Korean and American parents of children with
disabilities. Causes of stress for the American parents were specific to the
individual variables. For Korean parents, cultural values that carry social
influences were strongly associated with their experience of stress.
Laurvick et al. (14) while working on physical and
mental health of parents caring for a disabled child found that factors
positively related with better mental health were the following: the parent working
full time or part-time outside the home.
Kermanshahi et al. (15) in their study on perceptions
of living with children with disabilities found six major themes: challenging
the process of acceptance, painful emotional reactions, the interrelatedness of
parent health and child's wellbeing, struggles to deal with oneself or the
child, inadequate support from family and community, and the anxiety related to
the child's uncertain future.
Studies in literature indicate that parents of
children with disabilities, would have high stress and low health scores. On
the other hand, Mahoney (16) documented some positive effects. He found that
the a disabled child can have an integrative effect by focusing the family's
energy in a concerned, loving manner, thereby minimizing some of the other day
to day problems. Some parents expressed a new appreciation for life and
ordinary things they used to take for granted.
The present study was planned with the hypothesis
that, a) Parents of Children with Disabilities (PCD) will experience significantly
greater stress as compared to Parents of Children with No Disability (PCND), b)
Parents of children with disabilities will experience significantly greater
mental stress than physical stress.
The major findings of this study are that parents of
children with disabilities experience more stress than normal. However, all the
subjects experience higher levels of mental stress than physical stress.
*Address for correspondence
# 3379, Sector 35-D, Chandigarh. U.T. - 160022, India
ACKNOWLEDGEMENT
Thanks to Ms Harpreet Kaur, for collecting data and
reviewing part of the literature for this study and Dr Nisha Duggal for
collecting some part of the data.
REFERENCES
1. Wikler L. Chronic stresses of families of mentally
Retarded Children. Family relations April 1981; 30(2):281-288.
2. Berdine W H and Blackhurst A E. An introduction to
Special Education, US: little Brown and Company. 1985 ; 618-625.
3. Farber B. Family organization in crisis maintenance
of integration in families with several mentally retarded child. Monograph of
society Research and child development 1960, 25(1).
4. Faber B. Family organization and Parent – Child
communication: parents & siblings of a retarded child. Monograph of society
research and child development 1963; 28 (whole no. 91).
5. Jani MC. Social a mentally retarded child in
family. Dissertation Diploma in Medical and Social Psychology. Bangalore
University 1967.
6. Dupont H. Community mental health centres and
services for the Mentally Retarded. Community Mental Health Journal. Springer,
Netherlands. March 1967; 3 (1).
7. Loeb RC. Group Therapy for parents of mentally
retarded children in Attwood, T. The crydon workshop for the parents of
severely handicapped School age children. Child: Care, Health and development;
5(3): 1979177-188.
8. Fishman S N. Woff L C. and Non S. Marital intimacy
in parents of exceptional children. Canadian journal of Psychiatry 1989; 37(6):
519-5257.
9. Heller T, Hsieh K, and Rowitz L. Maternal and
Paternal caregiving of persons with mental retardation across the life span.
Family relations 1997; 46 (4): 407-115.
10. Peshawaria R, Menon D K, Ganguly R, Roy S, Rajan
Pillay P R S, & Gupta S. A study of Facilitators and Inhibitors that effect
coping in parents of children with mental retardation in India. Asia Pacific
Disability Rehabilitation Journal 1998; 9(1).
11. Seshadri M K, Verma S K, and Prashad. Impact of
mental retardation of child on the family in India. Journal of Clinical
Psychology 2000; 473-498.
12. Hedov G, Anneren G, and Wikblad K. Self perceived
health in Swedish parents of children with Down’s syndrome. Quality of life
research. May 2000; 9( 4).
13. Shin Y J, and Crittenden K S. Well being of
mothers of children with mental retardation : An evaluation of the double ABCX
model in a cross cultural context. Asian Journal of Social Psychology 2003;
6(3): 171-184.
14. Laurvick CL, Msall M E, Silburn S, Bower C, Klerk
N de, Leonard H. Physical and Mental Health of Mothers caring for a child with
Rett syndrome. Pediatrics Sept 2006; 118 (4): e 1152 –e1164.
15. Karmanshahi S M, Vanaki Z, Ahmadi F, Kazemnezad A,
Mordoeh E and Azadfalah P. Iranian Mothers’ perceptions of their lives with
children with mental retardation: A preliminary Phenomenological Investigation.
Journal of Developmental and Physical Disabilities 2008; ISSN, DOI 10.1007/S
10882-008-9099-3.
16. . Mahoney S C. Observations Concerning Counseling
with parents of mentally retarded children. American Journal of Mental
deficiency 1958; 63: 81-86.
Monday, 13 June 2022
Prayer Request
On June 8, 2022 at 9:21 AM GMT+5:30 forms@life.church wrote:
Formstack Submission For: Spiritual Support - Prayer
(Banner)
Submitted at 06/07/22 10:51 PM
First Name :
Pieter
Email :
labusch@loquat.co.za
Gender : Male
Prayer Topic :
Children
Prayer Request: In RSA we get little support from state and community with our 2 adult profoundly disabled kids. My wife and I are 70 years old this year, caring for Anke 42 and Markus 39 we sometimes feel so afraid and alone...
Response:
From: Shelton Johnson spiritualsupport@youversion.com
Sent: Thursday, 09 June 2022 01:40
Subject: Re: Children
Dear Pieter,
Thank you for reaching out to the SPIRITUAL SUPPORT TEAM. Very much appreciate your commitment in taking care of your children for so many years. You both have weathered so many storms with OUR LORD'S HELP. God shall continue to do the same for you and let me pray with you and for you, your wife and your 2 children now PIETER.
OUR HEAVENLY FATHER,
Please Lord, now they are aged, grant a Supernatural
way, to comfort them and provide some relief through some agencies LORD.
Please move in the hearts of people around this
couple, that they come forward to help them.
LORD send, help. Please Lord send help and Glorify
Your Holy Name.
Thank you for hearing our prayers, LORD. AMEN
Shelton Johnson
Spiritual Support Team
Serve at YouVersion — Spiritual Support Team
Friday, 6 August 2021
The Lockdown of a Disease. What are mitochondrial diseases?
Mitochondrial diseases are chronic (long-term), genetic, disorders that occur when mitochondria fail to produce enough energy for the body to function properly. Mitochondrial diseases can be present at birth but can also occur at any age.
Mitochondrial diseases can affect almost any part of the body, including the cells of the brain, nerves, muscles, kidneys, heart, liver, eyes, ears, or pancreas.
How common are mitochondrial diseases?
One in 5,000 individuals has a genetic mitochondrial
disease. Each year, about 1,000 to 4,000 children in the United States are born
with a mitochondrial disease. With the number and type of symptoms and organ
systems involved, mitochondrial diseases are often mistaken for other, more
common, diseases.
SYMPTOMS
Poor growth. Muscle weakness, muscle pain, low muscle tone, exercise intolerance.
Vision and/or hearing problems. Learning disabilities,
delays in development, mental retardation. Autism, autism-like features. Heart,
liver or kidney diseases.
Gastrointestinal disorders, swallowing difficulties, diarrhoea
or constipation, unexplained vomiting, cramping, reflux. Diabetes. Increased
risk of infection.
Neurological problems, seizures, migraines, strokes. Movement
disorders. Thyroid problems. Respiratory (breathing) problems. Lactic acidosis
(a build-up of lactate).
TREATMENT
Treatment varies from patient to patient and depends on the specific mitochondrial disease diagnosed and its severity. However, there's no way to predict a patient’s response to treatment or predict how the disease will affect that person in the long run. No two people will respond to the same treatment in the same way, even if they have the same disease.
Mitochondrial Disease Organizations
United Mitochondrial Disease Foundation (UMDF) https://www.umdf.org/
Organic Acidemia Association https://www.oaanews.org/
Fatty Oxidation Disorder Support Group https://fodsupport.org/
Friday, 18 June 2021
Significance of the number 40 (Anke turned forty in 2020)
I am
realising more and more that the past forty plus of my sixty-eight years on
earth has passed with me pausing life in more than one way, holding my breath…
holding my breath
...
I have a new quiet hope inside my spirit. I so look forward to continuing this sometimes-painful
new let go journey I let myself into, journeying with Ardent in a direction
learning to breathe more freely, still some nerves but expectant to really get
to know Him in all His fullness.
I
need to let go and come up to the surface, to stop holding my breath – to live
and breathe fully in the knowledge that He has been my salvation, He did it all
for me too, I don’t have to do anything since He knitted me in my
mother’s womb. He knew me before my beginning of time (preservation/deliverance
from harm/ruin/loss).
According to the Bible, forty is the number associated
with waiting, preparation. Also, the Bible often resorts to the number 40 when referring
to a new chapter of the history of salvation. On the other hand, forty would
indicate the duration of a generation or a long period of time (of pausing
one’s life – holding one’s breath?).
Forty also symbolise the death with oneself and spiritual rebirth.
According to R. Allendy, "it is the achievement of a cycle in the world, or rather the rhythm of the cyclic repetitions in the Universe".
According to saint Augustin, forty expresses the perfection "because the Law was given in ten commandments, then it is through the whole world that the Law has been preached, and the whole world is composed of four parts, Orient and Occident, South and North; therefore, by multiplying ten by four, we obtain forty. Or well, it is by the four books of the Gospel that the Law is accomplished."
Forty represent the man incorporated in the Universe and combatting the prince of disorder, according to Claude of Saint Martin.
Forty represent the complete and sufficient period to finish a work, according to Lacuria.
Forty days after birth, Jesus was presented to the Temple of Jerusalem for his legal purification, according to the established law of the time.
The 40 days of fast of Jesus in the desert. (Mt 4,2). Forty days separate the Ascension of Jesus of his Resurrection. (Act 1,3)
The Flood of Noah lasted 40 days. (Gn 7,4)
Elijah walked 40 days and 40 nights before to reach the Horeb mount. He fasted during 40 days before to begin his public ministry and he remained 40 days on the Carmel mount. (1 K 19,8)
The priest Eli had been Judge of Israel for 40 years. (1 S 4,18)
Moses was 40 years old when he was called by God and that he killed an Egyptian and escaped in the desert of Midian. He kept the herd of Jethro for 40 years. He resided finally 40 days and 40 nights to the summit of the mount Sinai before to receive the Tables of the Law. (Ex 24,18)
During 40-day Goliath defied David. The children of Israel lived during 40 years in the constraint with the Philistines. (Jg 13, 1). The Hebrews wandered 40 years in the desert. (Nb 32,13)
The reign of Joash lasted 40 years in Jerusalem. (2 Ch 24,1). The people of Nineveh had to repent for 40 days. (Jon 3,4)
Isaac was 40 years old when he married Rebekah. (Gn 25,20). The embalming of Jacob was prolonged for 40 days. (Gn 50,3)
The reign of David on Israel lasted 40 years, just as the reign of Solomon in Jerusalem. (1 K 2,11 and 11,42; 2 Ch 9,30)
Ezekiel supported the iniquity of the house of Juda for
40 days.
The 40 years of repentance of Adam after his corrupt practice.
Forty is the number of chapters of the book of the Exodus of the Old Testament.
General
Jesus preached for 40 months. It is 40 years after the crucifixion of the Jesus Christ that Jerusalem was taken by the Romans and that the Temple was destroyed. The body of Jesus remained 40 hours in the sepulchre.
The 40 days of the Lent before Easter.
What does the Bible say about God's love? God's love
takes many forms throughout the stories of scripture. Parts of the Bible even
refer to God as love itself. Love could be explained as wanting the best for
someone, and that's exactly what God intends for us. God loves you simply
because he loves you. You do not have to work for his affection. You do not
have to set yourself straight before God can pour out his love over you.
God absolutely loves you. It is hard to get our minds around, but it is true. This is where the faith journey starts: understanding that God loves you. If you do not have an assurance of God’s love, your faith journey will not last long. Fortunately, reading the Bible can help to strengthen your faith in God's love. There is no force more powerful than the love our heavenly Father has for us, His children. His love can move mountains, stop the roaring seas, heal broken bones and wounded hearts, transform lives, and set free those held captive by sin and shame. So great is his love for you and me that he sent his only Son to die that we might live through him.
God is not an angry taskmaster who shows affection only when you succeed. He is a loving Father who will always love you no matter what. Take time to receive the depth of his love for you today. Allow his love to heal you, transform you, free you, and lead you to the abundant life he has always longed to give. Read, meditate, and pray over these Bible verses about God's love as you walk in faith today.
Catastrophic Loss - 2020
‘Catastrophic loss’, according to Jerry Sittser in his
book A Grace Disguised, is when you lose something permanently, something never
to be right again.
Sittser is of the opinion that catastrophic loss leads to confusion of identity. The situation with Anke and Markus is considered to be a catastrophic loss. They will never get ‘well’; they will never become ‘normal’. Sittser further says that we understand ourselves in large measure by the roles we play and the relationships we have; we find ourselves in what Sittser calls a ‘vertigo’ when these are changed or lost forever.
Our Anke-and-Markus reality makes us function mostly on the outskirts of ‘normal’ life when it comes to life’s milestones. ‘Exclusion’ is the word that jumps to mind. We function behind the wings on life’s stage, mostly reluctant to fully step forward and participate in community. We have grown into our own warped sense of belonging over a period of 40 years.
In my head I am still a young dad, because Anke and
Markus will forever be infants. In my psyche, my life got parked at age 32 on a
sunny afternoon near Tarlton by the side of the tar road under a cluster of
dusty blue-gum trees. I had to stop – or rather, the car rolled off the road
and came to a stop – for a long time, as I was blinded by tears after the truth
about my children had been told to us. We said goodbye to Anke and Markus under
those trees that day. No more hopeful denial, only truth. We left our perfect,
normal-in-our-heads children next to the road under the blue-gum trees and in
their stead buckled up two beautiful broken little strangers into the kiddies’
seats in the back of the car.
You’d think one learns over time to deal with catastrophic loss. The reality is that you have to deal with it from day to day. You learn to navigate your normal life around it every time it hits you. Some days are better than others. On days when it really catches up with you, like yesterday, you just go into deeper isolation than usual, dealing with it the best you know how for that occasion. It, too, usually also passes, until the next time.