- There is tremendous pressure on the family with a mentally disabled child. The divorce rate is higher and siblings battle emotionally.
- Financial strain on the family is huge - there are extra bills that need to be met such as: special diets, therapy costs, extra care, medical bills, domestic help, specialised equipment (such as ramps for wheelchairs, educational toys, etc.)
- Life as you know it changes - you can no longer simply drop your kids off at a babysitter if you want to go out, this child needs special care. Commitments and family activities all need to change and adjust around the needs of the mentally disabled child.
- Family members experience a range of powerful emotions in response to the diagnosis: denial, shock, anger, grief, guilt, embarrassment, depression, withdrawal, ambivalence, disillusionment and fear.
- Parents’ careers may need to change. Due to the extra care needed, many times mothers will give up their career to stay at home with the child. This adds financial pressure to the family, and many times the mother feels "cheated" and "unsuccessful".
- Parents may feel robbed of the life they dreamed of and are frustrated by the sudden limitations on what they can and cannot do.
Ways to cope with mental disability:
- You need to make time for yourself too. Take some time each week where you are away from your child and just focus on your own needs.
- Make time for the rest of the family - include some activities that don't revolve around the mentally disabled child.
- There are plenty of special schools, after-care facilities and long-term care possibilities for the mentally disabled. You need to research these, even when your child is still a baby, because they usually have a very long waiting list.
- Join a support group. There are thousands of parents, just like you, who can be a strong shoulder to lean on. They are also very useful baby-sitters because they know how to handle a child like yours.
- Don't compare your child to other children. Although they have an intellectual disability, they still have strengths and talents - focus on these, not their weaknesses.
- Don't blame yourself. It is nobody's fault.
- Take individual time for each child in your family. Non-disabled siblings often suffer in terms of time with their parents, emotional needs being met, financial resources and feel that the disabled child is the "favourite". Children are natural care-takers and want to be involved - so, instead of shutting them out, rather educate them on what a mentally disabled child needs and give them a chance to help (which will give them a sense of inclusion in the whole process).
The great news:
- Research has shown that marriages can improve after having a child with disabilities. There is better understanding between partners and studies support that families where parents prior to having a mentally disabled child had a good marital relationship, tend to come even closer to each other to face the situation of having such a child.
- Siblings may develop greater empathy and understanding for people with disabilities, they become more tolerant and patient with others and learn how to be helpful.
- Parents play a key role in the development of the siblings' attitude towards the mentally disabled child - when parents work through their own feelings and adopt a positive outlook, the siblings' attitudes usually follow suit.
- Parents develop more patience, tolerance, empathy, sensitivity and better relationships in general.
- It has been shown through research that such parents are also less critical of family members and have fewer persistent family problems. The bottom line is that this situation forces you to become a stronger person.
- Children with disabilities are a source of joy and happiness. They make you examine your own life and force you to prioritise what is important to you.
- Friendship circles enlarge due to support networks.
- Research has shown that those with social support had lower levels of depression, anxiety and anger and were able to cope far better than parents who tried to do it on their own.
- When questioned, 55% of parents with mentally disabled children said that there was a more positive impact than a negative one after having the child. They did not see the child as a burden, but rather as a blessing.
Like other children, children with disabilities have their own unique personalities, likes, dislikes, sense of humour, needs, strengths and weaknesses. They are very emotional and need love, care and support and need to know they are accepted unconditionally. When they feel secure and cherished, their potential for development sky-rockets. Be proud of the child you have been given.
Michelle Minnaar has a sister who is severely mentally disabled.
How have you dealt with your child being disabled? Do you think you'd be able to cope?