Addressing the Spirituality Needs of Children with Special Needs
|
|
Chapter 6: Addressing the Spirituality Needs of Children with Special Needs
Tools for Parents of Children with Special Needs
By: James J. Messina, Ph.D., CCMHC, NCC, DMHCS
|
"For my house shall be a house of prayer for all people"
Isaiah 56:5
The Lord is my shepherd; I shall not want.
He maketh me lie down in green pastures;
He leadeth me beside the still waters,
He restoreth my soul,
He Leadeth me in the path of righteousness for his name=s sake.
Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For Thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; my; cup runneth over.
Surely goodness and mercy shall follow me all the days of my life,
And I will dwell in the house of the Lord forever.
Psalm 23
|
A. What are the spiritual needs of the parents of children with special needs?
Parents of children with special needs have the following spiritual needs:
- Help to see how the hand of God is present in their lives.
- Help to see how God's plan is at work in their lives.
- To give meaning to the consequences of having a child with a lifelong special need.
- Help to see how God is available to them to handle their sense of loss, grief, anger and the lack of acceptance of their child's problems.
- The comfort of a faith community in providing emotional support .
- The understanding and acceptance of their faith community as they contend with the unique and lifelong needs of their target children.
- The prayers and spiritual support of their fellow faith community goers.
- A sense of humor and the comfort of faith as they deal with lifelong crises.
- The open hearts of their faith community in developing special services for the children and in incorporating these services into the life of the faith community.
- The support of fellow believers in providing lifelong support in terms of advocating for the education, employment, and housing of people with special needs.
- The support of fellow believers to reduce discrimination, lack of information, and ignorance concerning the people with special needs
- The faith community to provide a spiritual basis, for people with special needs and their families, with which they can come to a full acceptance of their state in life.
|
B. What are the lifelong spiritual needs of children with special needs?
Children with special needs need:
- Understanding of who God is and the role God plays in their lives.
- Understanding of God's plan for each person on earth and how their ''special needs'' are a sign of their unique role.
- Growth in the knowledge of God in developing a spiritual life.
- Full acceptance by their faith community so that they can participate in the liturgy and religious ceremonies.
- Education and information on the teachings and beliefs of a specific faith community.
- Preparation and training to receive the ritualistic rights or sacraments of their faith community, e.g., baptism, holy communion, confirmation, reconciliation or the rites of circumcision, bar mitzpha, witnessing, receiving Christ, etc.
- Advocacy on the part of their fellow believers so that they receive fair treatment in - education, employment, and housing.
- The understanding and acceptance of their fellow believers.
- Compassion, support, and openness from their fellow believers to experience a sense of oneness, community, and fellowship in their church community.
- A witness of the active hand of God in theirs and others lives to give meaning to their unique contributions.
C. What activities can those in organized faith communities develop for the parents and families of children with special needs?
1. Faith Community Religious Education and related programming:
- Coordinate efforts to open the faith community's doors to children and adults with speical needs.
- Consistent efforts to provide education for the people with special needs in the teachings of the faith community
- Incorporate people with special needs into the faith structure of the faith community
- Appropriate ramping and physical changes can make the faith community's buildings accessible to the people with special needs.
- Faith community schools need to address the religious education of children and adults with special neess.
- Faith communities could sponsor social programs, groups, or clubs for its members with special needs.
2. Parent-to-parent contact at the point of diagnosis:
Organize programs for parents to reach out to other parents and provide emotional support for each other. When parents are informed of their child's special need and its lifelong impact, it is a crisis in their life. There is a need to create a parent-to-parent network through faith communities with ongoing coordination and interagency cooperation. This field is ripe for apostolic work within the faith community to overcome the emotional hurdle of this diagnosis and to keep parents active and not fearful of being unaccepted by the faith community.
3. Emotional support groups:
Parents, family members, and the children with special needs are in need of a great deal of emotional support-lifelong emotional support-because the special needs are lifelong in nature; the crises and emotional strain have no end. New loss experiences need to be addressed, yet there are very few lifelong support programs for these families or their children. Such support groups could be housed in faith communities.
4. Individual and family counseling:
Because of the emotional strain that having a child with a special need places on a family, there is often a need for both individual and family counseling. Faith communities could provide social services with low-cost, sliding fees to the families using professionals from the membership.
5. Support for the parents of the children with special needs:
Marriage encounter and other marital enrichment programs are sponsored by the faith community to enrich married life. These programs can be given specifically for the parents of children with special needs. These marriages need support and encouragement, and the faith communities can take a leadership role in this regard.
6. Education:
The schools sponsored by faith communities can provide appropriate and accessible educational alternatives for children with special needs. Many parents want their children to go to faith based schools, but the schools are not accessible to those with special needs. In fact, it appears that they are discouraged from placing their children into such schools. Because their children have special needs, these parents must forego that choice for their children. This lack of choice needs to be addressed by the faith communities serving these families.
7. Advocacy for people with special needs:
Federal money for services for people with special needs have been cut, but there is an increasing need for coordination of advocacy groups for those with special needs to unify their voice. An agency is needed to lead and coordinate such a process. This appears to be an excellent avenue for the faith communities to take. The faith communities have no vested interest in the outcome of such advocacy, yet they can provide clerical and administrative support in assisting the advocacy of people with special needs in the community.
8. Social and leisure opportunities:
A lifelong social network of leisure and recreational opportunities for people with special needs is needed. These clubs and activities would generate enthusiasm throughout the year. Social and recreational programming and the use of existing faith community facilities for this purpose is a fine way to take a leadership role in the advocacy of people with special needs.
9. Meeting space:
Many of the advocacy organizations on the local level are in need of permanent meeting and office space. They have small budgets and few personnel. Faith community's size and geographic coverage make excellent potential support for the advocacy groups in this regard.
10. Fund raising and grant support:
The amount of federal and state money for people with special needs is limited. There is always a need to go to the private sector to gain financial support. Fund raising and grant writing are needs of advocacy groups that the faith communities could support.
11. Employment of people with special needs:
The employment of people with special needs is a major need in the community. These people with able minds and bodies need assistance to find employment opportunities that will be supportive, and give them a sense of satisfaction, self-esteem, and success. Faith communities have an excellent opportunity to take a leadership role in this area.
12. Housing:
There is a growing need for group housing facilities for those with special needs. The required number of beds will increase in future years. In order to meet this need, private funding will be needed. The federal government is cutting back its support for such facilities. Faith communities with surplus property could deed this property to parent groups for the establishment of group living facilities and apartments. Faith communities could also assist in rezoning efforts needed for such development. If faith communities took a leadership role today in helping parents to organize themselves they could create trust funds and financial planning for future group homes and supervised apartments. This is a dire need. Preventive action needs to be taken now. The faith communities are in an appropriate leadership and supportive role to lead the parents and the community to lifelong care for their children. Parents need to become involved in the development of these housing options while their children are still young.
|
D. What negative consequences can come of parents who are not supported by their faith communities as they deal with their children's special needs?
Parents who have felt unsupported in their faith communities may have:
- Left their faith community completely.
- Joined faith communities that did offer them support.
- Lost their faith and belief in God or in God's mercy and kindness.
- Become embittered, angry, and hostile toward their own faith communities, its believers, and God.
- Became alienated and disappointed with their religion.
- Turned off from God, accepting the hardship of their children's problems as a sign of God's rejection of them.
- Never been able to fully resolve their grief, loss, and lack of acceptance of their child's problems.
- Become incapable of sharing the ''good news'' of God's goodness to their children.
- Brought their children with special needs up without recognizing the need for God and or a faith community in their lives.
- Become alienated from their old friends, and social support systems in their former faith community.
E. What negative consequences can come of children with special needs who are not being provided supportive services by their faith community?
Children with special needs who have not been given supportive services by a faith community
may have:
- Never been given a chance to comprehend the mystery and blessing of God's role in their lives.
- Not been able to recognize the impact of faith and trust in God as tools to accept their condition in life.
- Not been given a community of believers with which they could identify.
- Felt alienated and unwanted in any and all faith communities
- Been denied their birth right to worship and partake in their faith communities' life and functions.
- Been isolated from the worship, sacraments, rituals, and observances of their faith community.
- Been discriminated against in their right to practice the religion of choice of their families due to their special needs.
- Been denied the opportunity to have as normal a life as possible in the community of the faith community.
- Become dependent on secular agencies and services to gain a sense of brotherhood and fellowship denied them in a faith community.
- Become non-believers or non-religious due to the absence of active witness in their lives.
|
F. Justification for a Special Needs Ministry in a Faith Community (A Parent's Tools to Advocate for such Programs in Faith Communities)
Why a Special Needs Ministry? Religious leaders over the centuries have set the model for ministering to the needs of persons with various special needs. They have responded to the needs of lepers; to persons with paralysis; to persons who were lame, blind, deaf or maimed; and to many other persons with profound problems. Most of these persons were considered hopeless and their pleas to faith communities over the years were desperate cries for help. Having a special need represents a hopeless situation to many. Many parents of individuals with special needs are on a quest for the miraculous answer. They seek physical and sensorimotor cures, educational cures, nutritional cures and behavioral cures. The faith community has a spiritual message of hope that must be presented and shared. Faith communities can set the example for these parents and their children with special needs.
Many people of faith, from every religious persuasion, are finding the need to examine special needs in light of their understanding of God as Creator and Sustainer of life. God does not send a special need. Rather, God is with us in the adversities of life, just as God is with us in the joys and triumphs of life. God loves us with an everlasting love and is aware of our needs, fears, anxieties and hopes. It is God's spirit that moves us to pray, especially in times of pain, sorrow and loneliness. God's spirit removes the attitudes that isolate people. And, God's spirit motivates a faith community to be affirming, inclusive and welcoming.
What is it that religion can offer to people who are lonely, having a special need or not? Religion offers to redeem us from loneliness by teaching us to see our neighbors as ourselves, to be aware of their humanity, their fears and feelings. Religion offers community to our lonely human souls. The house of worship represents one place where the barriers fall and we all stand equal before God. If a congregation is worth its salt, it is in the business of improving the lives of others. People attending faith communities represent a wide variety of socioeconomic levels, occupations, and social networks. The match between the needs of individuals with special needs and the local congregations is truly "made in heaven". Why have only a small percentage of faith communities offered their messages to people with special needs?
G. Approach of a Special Needs Ministry
To develop a Special Needs Ministry there are many varied procedures involved. Locating the individuals with special needs, assessing individual needs, training a cadre of volunteers, establishing space needs, making a commitment, praying for direction, educating the congregation and preparing the curriculum are necessary components needed in the preparation of a special needs ministry. With each ministry, each mission, the individuals involved are of primary importance. People with special needs want neither pity-ridden paternalism nor overblown admiration. They insist simply on common respect and the opportunity to build bonds to their faith communities as fully accepted participants in everyday life.
God expects us to be competent and knowledgeable in our commitment. A ministry to individuals with special needs and their families demands that a person be informed about the special need. Just as other professionals maintain a concerted effort to stay informed, so individuals dealing with people with special needs should be knowledgeable about the conditions and the persons with whom they are involved. There are numerous procedures that can be employed to accomplish this: read about these special needs; watch documentary videos; talk to parents of children with special needs; attend training conferences; speak to experts in the respective fields; visit faith communities with established programs; and seek information from individuals with special needs. Listen genuinely to what they have to say. Observe their interactions, be aware of their needs and try to meet them, show respect and reverence for these individuals, be available to them and ask first "What can I do with you?" as opposed to "What can I do for you?"
One of the most difficult aspects of integrating people, who do not have special needs, and people with special needs is making both groups feel comfortable around each other, and to accept people who are different from themselves. There are ways, though, to make people with special needs feel welcome and not to feel threatened by the people around them. First of all, remember that the person with a special need is a person; a special need ought not be ignored or denied between friends; be yourself when you meet them; talk about the same things you would with anyone else; help them only when they request it, offer help, but wait for their request before giving it; be patient, let the person with a special need set his/her own pace in walking or talking; don't be afraid to laugh with them; don't stop and stare when you see a persons with special needs you do not know, they deserve the same courtesy any other person should receive; don't be over-protective or over solicitous; don't make up your mind ahead of time about the persons with the special needs, don't offer pity or charity, they want to be treated as an equal; the abilities, talents, and problems of people with special needs are just as diverse as those of people who do not have a special needs.
It is not enough merely to affirm the rights of people with special needs. We must actively work to make them real in the fabric of modern society. All faith communities must work to increase the public's sensitivity toward the needs of people with special needs and support their rightful demand for justice. People with special needs are a forgotten population in America, and they are crying out for love and acceptance from anybody who will take the time to listen to them. It is time for faith communities to hear those cries and extend their arms of love and acceptance towards the people with special needs of this country.
|
H. What steps can be taken to address the lifelong spiritual needs of children with special needs?
Step 1: In order to address the spiritual need of your target child, assess your own spiritual needs. Answer the following questions in your journal:
- What is the status of my relationship with God, my faith community, and my fellow believers as a result of the diagnosis of my child with special needs?
- How well has my faith community, the clergy, and members responded to my needs and those of my family as a result of the diagnosis?
- What services and support did my faith community offer me?
- How strong is my faith in God as I face the lifelong special needs of my child?
- What role did my faith in God and participation in my faith community play in my resolving my grief, anger, and lack of acceptance of my child's diagnosis?
- What are my spiritual needs today? How well are my needs being met in my current faith community? What alternatives do I have?
- How accepting, well-informed, and supportive is my faith community of the unique problems and concerns I face with my target child?
- What in my spiritual life gives me comfort as I deal with ignorance, discrimination, and lack of knowledge concerning my own and my target child's needs?
- How do I explain ''God's hand at work'' in the life of my target child?
- How comforting is God's message to me and my family as we proceed with lifelong efforts to deal with my target child's issues?
Step 2: Once you have identified your level of spiritual needs, assess the level of spiritual need of your target child. Answer the following questions in your journal:
- What is my child's understanding of who God is and what the faith community is?
- Who is teaching my child about God? What tools or aids do they use to provide this training?
- How comfortable am I in discussing God and religious issues with my child?
- How do I handle my child's questions about our participation or lack of participation in a faith community?
- How helpful has a spiritual focus been in assisting my child to cope with his/her special need and the reactions of others to him/her?
- How useful has my faith community's religious education program been to my child's growth in faith?
- How willing am I to have my target child partake of the religious rites; sacraments and/or rituals of my faith?
- How important is it to me that my child be reared in the same faith community I was? How willing am I to change faith communities in order for my child's spiritual needs to be met?
- How am I handling the introduction to the teachings of my faith community to my target child? How important is it to me that my target child be a member of a faith community?
- What makes me feel uncomfortable about my bringing my child to my faith community? How would I like to change this?
Step 3: Once you have looked at your child's spiritual needs, look at your faith community. How could it better respond to your's and your child's needs? Answer the following questions in your journal:
- What special or modified services does your faith community offer to those with special needs and their families?
- What is the attitude of your faith community's leaders and the members toward the needs, wants, and rights of people with special needs?
- How welcome do you feel in the social networks of your faith community?
- Have you made requests of the faith community concerning your target child that went unnoticed or were ignored?
- What special efforts and kindness from your faith community and its members have come your way since your child was diagnosed?
- How comfortable do you feel coming to your faith community in regard to education? employment? housing? social life? recreation? religious education? spirituality? discrimination? or other needs of your target child?
- How does your faith community help groups of parents and families who have a child with special needs?
- How well does your faith community help and assist adults with special needs?
- How active do you feel you need to be in your faith community before you would feel comfortable asking for help with issues concerning your target child?
- How willing an advocate is your faith community regarding people with special needs?
- What is active or absent in the way your faith community addresses you and your target child's needs?
Step 4: After you have assessed your own, your target child's, and your faith community's needs, how can you meet the lifelong spiritual needs of your target child? Develop the following plan in your journal:
Plan for My Child's Lifelong Spirituality Needs
- I will rear my child in the following faith community:
- I will instruct my child in the following religious beliefs:
- I will have my child partake of the following rites, sacraments or rituals of my faith community:
- I will enroll my child in religious education classes at this age at the following faith based religious education program::
- I will ensure that special classes exist in the faith based community program for children like mine:
- I will approach my faith community to get involved in the following activities concerning people with special needs:
- I will provide my child with the following role model of spirituality in my own life:
- I will teach my child the following things about God to give my child a healthy acceptance of the special need.
- I will supplement the faith communtiy's efforts by:
Step 5: If you have problems developing or implementing the action plan in Step 4, go back to Step 1 and begin again.
|
|
|