The importance of 'inclusion'
The role of parents is very crucial to meet the needs of special children.
It is every special parent's desire to see their child grow in a healthy environment with the rest. Unfortunately, this still remains a challenge. When we talk of autism or Down Syndrome or any learning difficulties, many people have little knowledge about it. Personally, I have encountered many such people who treat any learning difficulty as Mental Retardation and label such children as incapable.
Parenting as a task may sound simple, but it is a tough job and a never-ending responsibility. My journey as a special parent started in 1999, with several difficulties, but it has been a fruitful one. Today, as an educationist and as a parent, my focus is to open better horizons in education for children with special needs so that they lead a life of "inclusion".
I will not deny that my own child had many behavioral issues when he was six years old. Due to that, he was not accepted socially and people would stare or laugh at him. It was impossible to take him out in public. Like all parents, it was my dream to enroll him in a regular school. But, like others, I was unaware of the reality of the situation.
What Special Parents and others need to understand is that while inclusion is undoubtedly an important goal, but we have to ensure the child has acceptable behavior, social skills, and communication. It took me a few years to understand this. I lost some crucial growing-up years of my child listening to one therapist or another, instead of teaching him more skills than he has today. Sending a special child to a 'regular' school does not solve the issue of inclusion. In fact, the child gets lost in the crowd, which does very little to boost his/her confidence and development. Eventually, I decided to get him a structured intervention outside and sent him to school only for two hours to adapt to his social environment.
The lack of correct guidance and infrastructure is a major obstacle. Professionals have their own theories for engaging with children with difficulties. Consequently, parents tend to go in circles following one advice and then another. A programme that can be completed in six months takes two years to accomplish. My child is still learning to write while he should have accomplished it at the age of 6 years. Not that he did not go for Occupational Therapy or Special Education; he did for many years. Luckily, his communication skills are good, thanks to the speech therapist who did a wonderful job and the language therapist who worked hard on his communication ability. I must admit that we took him out of the country every summer for language therapy.
There are centres offering special education, speech therapy, or any other therapy, in every nook and corner of the country. These centres are still no solution to the problem of inclusion. The issue can be managed when we all come together to ensure systems first focus on how the child can learn, before getting into the larger issue of inclusion. Parents need to understand this even more. Mothers play the most important role for which they must learn and accept the situation first. Being bitter and lost does not solve anything. Focus on your own child believing him/her to be like the rest with just a need to learn differently. This requires appropriate infrastructure, which offers an educational plan along with inclusion.
We also need to work on spreading awareness about the issue of inclusion for special children. Learning difficulty does not imply that the child is incapable. Structured intervention and a comprehensive education plan can be quite effective. We must explore other creative avenues so that special children are included in our education system.
General guidelines for parents preparing for inclusion:
You are the best therapist for your child
Diagnosis and assessments are important but more important is the correct programme for early intervention. Do not use medication unless needed
First Six years are most crucial. Focus on development milestones. Do not waste time
Work on a timeline
Structure, routine, space, and environment matter. Do not follow things blindly, understand first
Follow discipline at home. Do not compromise on your child's behaviour
Good sleep and bedtime routine are as important as any other therapy
Children have significant difficulty processing oral language, they are visual processors (indulge in activity based and practical learning)
Creative group sessions work, not academic
Provide early intervention at one place; do not go to different places
Learning happens when a child has good listening and sitting ability. Focus on that, not on what others are doing
Provide inclusion through creative activities. Do not worry to get through mainstream schools
(The author is founder and President of Freesia (Organisation for Creative Studies and Development) and SIASEN (School for Intellectual Ability for Special Education Needs). She has been working with Special Needs Children and Young adults as an educationist & creative and movement therapist for over a decade. Views expressed are strictly personal.)