As parents, the prospect of raising a child with an intellectual disability seems an overwhelming task. There will be many challenges ahead, and in order to provide him with the necessary love and guidance, you as parents, must learn to accept him as he is. With the right support, guidance and preparation, you can prevail. Learn the necessary skills needed to manage difficult behaviours, cope with his stress and live a long and fulfilling life together.
Understanding the Disease
By understanding the spectrum of the child’s intellectual disablility, parents know what to expect and what needs to be done for the child’s upbringing and future.
Parents of children with intellectual disability (ID) must cope with the daily stress of seeing their child struggle; even through the most mundane tasks. It is a condition that will last a lifetime and parents tend to feel some amount of grief, resentment, disappointment and frustration. These feelings can lead to guilt, hopelessness and even depression. Despite, underneath it all remains a deep love and desire of every parent to see that their child attains their maximum potential and, the hope that they will live as independent individuals.
What Is Intellectual Disability?
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) published by the American Psychiatric Association defines ID as a developmental condition that begins in childhood and, is characterised by significant deficits in both intellectual functioning and adaptive behaviour, including conceptual, social and practical skills.
The DSM-5 diagnosis of ID is conducted by a trained clinician (e.g. psychiatrist, paediatrician or clinical psychologist) and looks at three main criteria:
- Deficits in intellectual functioning confirmed by clinical assessment and individualised standardised intelligence testing (e.g. reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience).
- Deficits in adaptive functioning (ability to navigate through the demands or challenges of everyday life effectively) that is not normal for a child’s developmental age, in terms of being able to be independent and the ability to meet social responsibility.
- The onset of these deficits during childhood.
ID is not a mental disorder. However, there is a risk of mental disorder co-occurring in a person diagnosed with ID. It is often commonly associated with communication disorders, learning disabilities, cerebral palsy, epilepsy and various genetically transmitted conditions (e.g. schizophrenia, depression and attention deficit hyperactivity disorder).
Causes & Symptoms of ID
Intellectual disability can be caused by any condition that impairs development of the brain before birth, during birt or in childhood years. The most common causes are:
- Genetic conditions. These include conditions such as Down Syndrome and fragile X syndrome.
- Pregnancy problems. Alcohol or drug use, malnutrition or preeclampsia.
- Childbirth problems. Oxygen deprivation during childbirth, premature birth or low birth weight.
- Illness or injury. Infections like meningitis, severe head injury, near-drowning, exposure to toxic substances such as lead and severe neglect or abuse.
In two-thirds of all children with ID, the cause is unknown.
Signs and symptoms of ID may start to appear during infancy, or not noticeable until a child reaches school age. Much of it depends on the disability’s severity. Common symptoms may include:
- Slow language development for age.
- Delay in sitting up, crawling or walking.
- Difficulty remembering.
- Inability to connect actions with consequences.
- Behavioural problems such as unprovoked explosive tantrums.
- Difficulty with problem-solving or logical thinking.
Caring For Your Child
There is no quick fix for ID, it will be a life-long struggle. But like all parents, you have a lifetime to equip your children with the skills and knowledge they will need t live on their own and thrive. Just remember to:
Forget About What Others Say
Stigma may contribute to poor psychological health b increasing psychological distress and reducing quality of life. Do not let the stigma keep you or your child down. Ensure that your child is able to fully integrate with their communities. Support your child, listen to them, be affectionate and empower them.
Be Actively Involved
Family members should participate in decisions about services and not be afraid to speak up and advocate for the child or adult with ID. The more families become actively involved, the less helpless they feel. With parent involvement in their children’s care, their children are less likely to require institutionalisation and more likely to enjoy a higher quality of life.
Ask For Help
Do not be afraid to seek help and support from family members. Some parents feel ashamed to ask for help as they fear rejection or people may not understand the situation. You would be surprised just how helpful people are once you ask. A positive family support network allows parents to have someone they can turn to and rely upon. A local parent/support group, society or NGO in the area can also be a source of support and strength in lobbying for services.
Start Treatment Early
Early intervention helps to maximise the child’s potential as early experiences play a critical role in brain development. It is also strengthened by stable relationships with caring and responsive adults, safe and supportive environments and appropriate nutrition.
Take Some “Me” Time
Taking care of a child with ID can take a lot out of any parent. It is important not to neglect your own needs. Get sufficient rest; eat well; take time for yourself; and reach out to others for emotional support. Get family members or friends to fill in for you while you enjoy some time away.
Like any other child, children with ID develop and learn at different rates and ways. What is important is for you to continue to be patient and be affectionately supportive, as well as work hard to help your child hone his adaptive capabilities so that he may reach his full potential in life. With your help and that of those around you, your child can live a happy and fulfilling life.