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FAQs - Parents



What should a newly affected parent do?

It is natural for parents to feel overwhelmed with feelings of denial, guilt, anger, etc. Often, these feelings originate from your concern for the child and the lack of awareness of what Down’s syndrome is and its impact, leading you to imagine the worst.

The first step that you need to take is to accept the child wholeheartedly. While it is easier said than done, this is an area where only you can help yourself. You have to find a way of countering the negative thoughts and emotions with positive ones.

During this stage, it helps to obtain authentic information about Down’s syndrome and educate yourself about the various aspects of the condition. You must also get in touch with support groups that may be operating in your town. Meeting with other affected parents and learning from their experience is found to be very helpful in alleviating a lot of unfounded fears and concerns.

What is Early Intervention?


Early intervention is known to help kids with Down’s Syndrome and it is advised as early as possible. Physical, occupational therapy helps the child cope with some of the associated issues such as low muscle tone.

Subsequently, at an appropriate time, it is advisable to enroll the child for speech therapy and early-special education to help develop motor skills and language.

During this period, there is no substitute to parents’ and/or family members learning and performing these therapies themselves.

How effective is Early Intervention in case of Down’s syndrome?

While there are conflicting research results about ‘medical efficacy’ of Early Intervention, the current thinking is clearly in favour of it. Moreover, there are significant positive psychological and emotional benefits on the child as a result of the attention and stimulation it receives during early intervention.

However, the probability of occurrence of the condition increases sharply with the mother’s age. At age 30, the risk of conceiving a child with Down’s Syndrome is 1 in 1000. This increases to 1 in 400 at age 35 and 1 in 60 at age 40.

Is there a cure for Down’s Syndrome?


Down’s syndrome is not a disease and there is no ‘cure’ it. Often, the ignorance and desperation of parents leads them to believe unreal claims of purported ‘treatments’. There is no scientific basis for any of these treatments.

For details, you may refer to the link below (caution – this is a research paper and not written with a lay-person in mind).
http://www.altonweb.com/cs/downsyndrome/index.htm?page=eieffective.html

Should I send my child to an “inclusive” school?

Children with Down’s syndrome are known to have varying degrees of learning ability. It is highly likely that your child’s overall development may be much faster in an inclusive school than in a special school. Besides, inclusive education appears to have a significant positive impact on social skills and confidence level.

By ensuring your child’s education in an inclusive school, you would also be helping the cause of spreading awareness in society about Down’s syndrome. “Normal” children are found to be highly accepting and supportive of children with Down’s syndrome. Their acceptance at an early stage will help in ensuring a more enlightened and accepting society as they grow up.

In India, Over the past few years, there has been a sharp increase in the awareness among the school administrators and educators about the need for inclusive education. There are good chances that you will be able to find an accepting school in your vicinity.

Which school should I select?

The link below provides a useful checklist that you may use to assess if a school has the necessary support mechanism in place for inclusive education of children with Down’s syndrome.
http://specialed.about.com/od/teacherstrategies/a/modify.htm

What are the pitfalls of “inclusive” education?

The most important aspect of “inclusive” education is the amount of support the school is willing to provide to the child.

It is also possible that at decision making levels in a school, there is a high acceptance and support for inclusive education but the actual teachers and instructors are not sufficiently trained or accepting. The willingness and support of the teacher is extremely critical.

Indian schools, with typical class room strengths of 50 or more do not allow much bandwidth for the teacher. Consequently, there is a risk that the child may remain ignored even while in an “inclusive” environment. The psychological and development impact of such situations can be extremely damaging.

An “inclusive” school also needs to have in-house counseling and special educators to help in periodic assessment of the child’s progress and ensuring timely remedial measures.

At higher levels, the gap between a child with Down’s syndrome and others will keep increasing. It is extremely important for the school to ensure a gradually paced learning for the child. This is often easier said than done.

When should you consider a “special” school?

While it is hoped that the education system and infrastructure in India will gradually develop to allow self-paced learning and other approaches that may completely obviate the need for a ‘special’ school. However, the present reality is far from this ideal state and, at some point during your child’s development, you may have to make a decision about enrolling your child in a ‘special’ school.

As the abilities of children with Down’s syndrome vary widely, you would need to constantly evaluate the option of a special school vis-à-vis inclusive school. Only when you find the relative benefits of inclusive education outweighing those of special education, should you consider a special school.

What are the chances of my child getting a suitable employment?

Though improving, the present level of awareness and readiness of employers in India is extremely low. Employing a person with Down’s syndrome requires the employer to make certain adjustments and accommodation. Therefore, at present, it is not very easy to get a person with Down’s syndrome gainfully employed.

However, with constant efforts to bring about greater awareness, the environment is definitely improving and you must make every effort to prepare your child and to persuade/educate suitable employers. Each parent needs to lead the way in this regard.

How should I prepare my child for an employment?

It will be easier for you to prepare your child for an opportunity corresponds to your child’s strength and interest. Therefore, it is important to make a realistic assessment of what your child is good at and what he/she likes to do.

The next step is to assess the gap that exists before your child can be ready for the opportunity. It is unrealistic to expect that the entire distance needs to be crossed by the child. There will have to be some adjustments made by the employer. However, your chances of success will increase if you can minimize this gap.

You will need support of everyone around you. Try and locate influential people with an open mind, who can help you in each step of this journey.

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