Growing Within the Limitations: A sensitization and capacity building program for parents of Intellectually disabled persons

In our own journey as the parents of a Down child, we met hundreds of parents of Intellectually Disabled children, all over Maharashtra. And observed that lack of acceptance, accessible sources, early identification and intervention facilities, the attitudinal impact of misconceptions of society and misleading advice even by doctors are affecting the possible development of ID children, and making parents and children’s lives more miserable. 

The main issues identified are:

1)    Most parents, particularly in rural areas are not aware of the limitations and are not able to accept the limitations of their child even if they know it. They don’t know the possible areas of development of their child because there is a lack of awareness, knowledge, and guidance about early intervention as a result the growth of the child’s abilities is at stake.

2)    Handling the sources of information is a critical issue identified through these communications. Parents are prone to be victim to advoke advisees, and suggestions about the treatment of their disabled child from relatives, and neighbours and are even misled by doctors.

3)    Most of the parents in rural areas cannot avail themselves of government schemes and concessions available to them, due to either lack of information, procedural complexity or ignorance.

A team of 4 experts visit ID special schools and conduct workshops for parents and teachers on the days decided mutually with the school authorities, twice a year in each school.

The focus is on enhancing the capacity of parents to use available resources for the development of their ID child.

Starting with a presentation of our success story, ‘Growing within the Limitations’ followed by demos, group activities, role-play, and discussions on video clips for creating awareness and skill development.

1. knowing nature the of disability and making choices for treatment/ therapies
2. Activities for Gross, Fine motor skill development at home.                                             
3. Government schemes, facilities and procedures to avail                                                
4. Ways to teach daily routine independence           
5. Home activities for Cognitive Development focus on Visual Future/financial
6. Future / financial planning options and procedures
7. Speech therapy at home
8. Vocational Education opportunities
9. Puberty / Sexuality

The data for analysis of the parents’ needs as per type and severity of the disability is collected during 1st phase. The nature of sessions in the next phases is modified as per the needs identified.

Follow up of child-specific interventions by local school Ordinator.

\Strengthening the capacity of the special teachers in respective schools is ensured by their active participation in the workshops.

• Improved understanding of parents regarding the g concept of identification, and acceptance of limitations and strengths of their intellectually disabled child.
• Awareness about government schemes, facilities and concessions for their intellectually disabled children.
• Development in the capacity of parents to handle the different sources of information rationally and effectively.
• Enhancement in capacities of special teachers in communication skills, and knowledge about government schemes, facilities and concessions for intellectually disabled children.

Thus Enhancing the capacity of parents to live happily with their ID children.