Knowledge Database

Grandparents of Children with Developmental Disabilities

Liat Baram - Social Worker, MSW, Couples-Family therapist, Beit Issie Shapiro

2016

Grandparents' Groups at the Aaron De Lowe Early Intervention Center,  Beit Issie Shapiro

Grand parenting is often one of the most life-affirmative experiences in the life of an individual. There are many phrases so often expressed, that they have become clichéd: "If I had only known how wonderful it is to have grandchildren, I would have had them first', or, "Grandchildren are the interest on one's investment".  There is a kernel of truth in all clichés, and the joy in the role of being a grandparent is indeed a special phenomenon.

However the path of life has a way of taking unanticipated detours, and requires learning new routes scattered with unexpected challenges. The advent of a child with a disability in the family requires confrontation and adaptation to unfamiliar realities. The family, grandparents included, must develop navigational skills which take emotional strength and physical resilience.

History of Grandparents Groups at the Early Intervention Center, Beit Issie Shapiro

Beit Issie Shapiro's Early Intervention Program always enjoyed the presence of grandparents of children at our center. Grandparents often accompanied parents to the initial meetings with the organization; they sometimes escorted their grandchildren to and from the center, and joined in birthday parties and the celebrations of festivals.  . One day a grandmother was visiting her grandchild, and mentioned the difficulties that she was experiencing relating to her grandchild with developmental disabilities. She expressed her sense of isolation and inability to share her worries with friends and family. This was the catalyst that triggered the formation of a support group for grandparents. Ms. Baram understood that it was essential to address a myriad of unresolved issues common to the grandparents.

The establishment of The Aaron Delowe Early Intervention Program’s Grandparents Group was the first of its kind in Israel, and has been operating for 15 years.

At the time of the formation of the Grandparents’ group for children with special needs, there was no theoretical or practical information available in Israel. In order to establish a model for building and running the group, the professional staff reviewed material available from other parts of the world, and looked at their own experiences with grandparents. 

 

Three major issues addressed:

 

1. Knowledge
Grandparents need to learn specific skills on how to take care of children with disabilites. For example, learning how to hold a grandchild with cerebral palsy, and how to play and communicate with him/her, in a way that will meet his/her individual needs.


2. Skills
Grandparents need to learn specific skills on how to take care of children with disabilites. For example, learning how to hold a grandchild with cerebral palsy, and how to play and communicate with him/her, in a way that will meet his/her individual needs.

3. Emotional Support
Grandparents often feel that they must be very strong for their children and hold back from showing their own anxieties and concerns. They are inclined to show optimism even though, (especially in the case of first time parents), they are the first to sense the existence of a problem. When the presence of a disability is confirmed, grandparents’ concerns are twofold: They worry for their children and for their grandchildren. They too go through a period of mourning for the loss of the child that they had anticipated. They too need emotional support.


The Model

 

  • The model for the Grandparents Group was built by synthesizing all the areas identified above, and was structured to make it as accessible and comfortable as possible for grandparents.
  • Many grandparents work, thus making early evening the most convenient time to meet.
  • The geographic spread of grandparents’ places of residence also necessitated consideration. Many come from as far away as Haifa, Rishon L’Zion and Yesod  Care is taken that they do not have to go home at a very late hour.

Venue and Frequency of meetings: Grandparents’ Groups take place at The Beit Issie Shapiro De Lowe Early Intervention Center, once every three weeks.

Time:  The meetings take place at six thirty in the evening.

Duration: The duration of the meeting is two and a half hours.

Size of groups: Between 12-15 grandparents. This size facilitates intimacy and a communication.

 

Recruitment process:

In the early years of the program, a great deal of time and energy was invested in recruiting grandparents. The child and the parents are the de facto clients of Beit Issie Shapiro, thus the parents were the mediators between the grandparents and the organization.  Today there is much less necessity to actively recruit grandparents: There is a spontaneous gravitation toward joining the program. It  is known as a safe haven where there is a feeling of belonging and support

 

Structure of the meetings:

  1. The first 50 minutes focuses on the acquisition of knowledge and skills. Multidisciplinary professionals present theoretical and practical information in fields such as communication therapy, physiotherapy, occupational therapy, hydrotherapy, music therapy, pet therapy, always focusing on information that will be helpful and relevant to the grandparents. For example, grandparents are given skills as how to use ‘Picture Card Communication Systems’, or how to hold, communicate or play with their grandchildren
  2. There is a twenty minute break where grandparents are given supper. This is an important time for facilitation of informal communication and establishing friendships within the group
  3. The next hour is devoted to the emotional support of the grandparents. This is a Group Dynamic session facilitated by the social worker. It is a time where grandparents can share concerns that preoccupy them and give each other emotional support, and connect (or not) with each other’s issues.

The Social Worker

The Group Facilitator is the social worker of the Early Intervention Center at Beit Issie Shapiro. This ensures that a common denominator exists between the professional and the group. The social worker knows the children and their parents and is very committed to their wellbeing.

Subjects commonly discussed in the Grandparent Groups

  • Grandparents often discuss their feelings about their grandchildren; the hurt, the sadness and the double pain that they encounter, for both their child and their grandchild.
  • An issue that frequently arises is one of limits and boundaries between grandparents and their children-(the parents of the child with special needs). Some grandparents take on the role of caregivers, and are constantly available to help with their grandchildren; others feel the need to get on with their own lives
  • Dependence of adult children on their parents is often greater when the grandchild has special needs
  • Grandparents are often confused as to the extent that they can legitimately intervene in issues regarding their grandchildren: Is it appropriate to intervene at all?
  • Grandparents of young grandchildren often have aged parents who also need their support and care. They might feel anxious as how to share their time between the many demands that this reality creates.
  • Worries abound regarding the future of the grandchild with special needs and their parents.

Examples of questions that grandparents often ask of themselves and of the group:

” How much time does one give the family? How does one say “no”?” This is often uncomfortable and confusing.

     “What about other grandchildren, how do I process time for each one and how do I put together the different pieces of the puzzle? “

       ” What happens when the grandchild goes to hospital, then do all limits break down? “.

 

Evaluation of the Program

 At the end of every year the professional staff assesses the success of the program from:

  • Personal accounts of the grandparents
  • The comments of the children of the grandparents (the parents of the children in the Early Intervention Center).In these cases, for ethical reasons, comments are never solicited, and if expressed, are spontaneous. E.g.” My father never held the child, now he is so competent and helpful.” “What did you do for my parents, they are now able to say no, and that is comfortable for us”.
  • The Beit Issie Shapiro Early Intervention team has been invited to present this model and conferences and has received excellent feedback
  • There is little need for outreach at the present time as grandparents voluntarily sign up for the new groups. Parents of the center pass on information of the Grand- parenting Project to new parents

Letter from parent to Liat

Dear Liat,     
I so enjoyed being with you for the past two years. The group helped me so much, especially your guidance, understanding and insights. May you be blessed to continue helping others in the future.   
With great appreciation,
grandmother of…

The Early Intervention team is interested in sharing this model with different communities and organizations. 

 

For more information please contact Liat Baram:  liatb@beitissie.org.il

 

Research Articles & AbstractsChallenged with Disability: Quality of Life of Arab Families in Israel
Guides & HandbooksFriendship Park: An Accessible & Inclusive Playground ©
Professional ArticlesGuide to Families with Children with Developmental Disabilities on Coping with States of Emergency
  • Disabilities:

    All disabilities

  • Topics:

    Family

  • Keywords:

    ,
    ,

  • Audience:

    General public, Professionals

  • For additional information:


     Print

Get in Touch
Blog