“What you should know is that having an intellectual disability is not a disease. It is not static or unchanging. It is a condition and its expression can change with therapies and supports.” ~ Special Olympics Chief Health Officer, Dr Alicia Bazzano.
Probably one of the most difficult things to process, is the news that your child has an intellectual disability. Not only does this have momentous significance for your child’s future, but everything changes for you and your entire family at that singular point. There is a plethora of overwhelming feelings – a mix of fear, confusion, anger – as well as hope and love. And sometimes complete disbelief – because many children diagnosed with ID appear no different to anyone else.
Working with your child from a point of view of knowledge and understanding can be both illuminating and enriching. You are going to learn an enormous amount of patience, humour, compassion, and empathy. As you get to know your child, you will begin to read their individual needs and respond with greater acumen and precision. Sometimes you’ll make a mistake, but mostly you will gain greater tolerance, always remaining prepared for new perspectives and possibility.
What Is Intellectual Disability?
Intellectual Disability begins in childhood and includes deficits in:
- intellectual functions, such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning, and learning from experience
- adaptive functioning in activities of daily life, such as communication, social participation, and independent living.
Many children have other conditions that can occur together with intellectual disability, like autism, spectrum disorders, epilepsy, or cerebral palsy. There is much confusion about the difference between autism (autism spectrum disorders) and intellectual disability. Some children have both. But, in autism, there are deficits in social communication (such as having conversation and making friends). There are also repetitive or restricted behaviours and interests (such as repetitive hand flapping).
Ways you can realise a bright future for your child
- There are many resources for the parent of an ID child – from support groups, to literature, therapies, specialist schools, and information for parents on how to cope.
- In recent years, sport has proven many opportunities for ID children to stay healthy and active, as well as building confidence and learning new skills. Sport is a truly creative and effective avenue for ID children to become valued members of their community.
- The Special Olympics provides over 30 individual and team sports for people with intellectual disabilities, starting at age 8 with basic sport skills like running, kicking and throwing. Children learn how to play with others and develop important skills for learning, such as sharing, taking turns and following directions. These are skills that will help them with family, school and community activities.
- Some teams join athletes who may – or may not – have intellectual disabilities, to promote understanding, respect, and compassion. The Special Olympics sports arena is a wonderful resource that encourages participants to discover new strengths and abilities.
Parent stress and coping mechanisms
Although the stress of parenting a child with ID is undeniable, it is always important to emphasize the positive aspects that the ID child can bring to the family. Changes and growth aspects are always gratifying. The learning curve for everybody can be positive.
Changing priorities: Very often parents may experience a greater appreciation of life, and the small things in life. Many have reported increased spirituality, personal strength and confidence, becoming less selfish and more aware of others. Changed priorities in life mean a less materialistic approach and the ability to build more meaningful relationships.
Reframing: Parents may also develop more positive and adaptive coping mechanisms that help them to handle the experience of raising their child more successfully. They manage to reframe their perceptions to view the behavioural difficulties of the child with more calmness, innovation and positivity. Parents who are able to ‘reframe’ find much joy and happiness and love with their child. This positive appraisal approach is seen as vitally important in helping parents sustain their efforts with caregiving over long periods of time and has been found to play a protective role in general health and mental wellbeing for all concerned.
Support and therapy: On the other hand, parents who are not able to develop these positive coping strategies may benefit from receiving professional support or therapeutic interventions, such as cognitive behavioural therapy (CBT) techniques to encourage attitudes that promote well-being and help to develop problem-solving skills and stress management techniques. Support groups play a useful role in this approach, and parents are always encouraged to participate for both the child’s and their own benefit.
No one is going to say that bringing up an ID child is plain sailing. What is required is a practical, realistic approach that fosters both the child’s constructive development within their capabilities, along with the parents’ positive, affirmative, and loving collaboration.
The story of Sunfield Home
Chris and Lynne Bennett, parents of a young girl with Down Syndrome, pursued their dream of establishing a home for their daughter and other intellectually disabled young adults in the Western Cape. Together with a number of other parents, they founded the Sunfield Home in Wellington, providing a loving and nurturing environment for over 100 residents and day-care individuals of all ages.
Each individual is screened to evaluate their strengths and allocate activities according to their abilities. A protective workshop has been established where contract work is undertaken, as well as arts and crafts activities. An employment scheme has also been developed and as a result permanent and successful positions have been found within the surrounding wine and cheese industries.
Find out more about us at: www.sunfieldhome.co.za
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