Parents Dealing with a Child’s Disability

Having a child who has a disability can be devastating for a parent. Taking an active part in your child’s life in hospital and at home can only help to ease your anxieties and improve the child’s treatment.

In hospital:

Become an expert on your son/daughter and their disability. Most illnesses and conditions seem to affect each child differently.  Read up on the subject. Be familiar with the terminology related to it. Ask any medical folk who deal with your child for clear explanations. Watch your boy or girl for development and reactions to medicine or treatment. Record progress in a diary. 

Become a spokesperson for your child. Medical appointments are like any board meeting: Pointless without an outcome. Have questions ready to ask. Have observations ready to make. All of my son’s practitioners are happy to find that we take an active part in his treatment. If we show them we understand a point they move on and tell us more. Equally we never allow them to use words we do not understand.

Never settle for second best. Although  delays are inevitable and mistakes are human, you cannot allow them to lower the quality of your child’s life. Take a civil tone and let whoever is in charge know that you are not happy. If necessary, lodge a complaint about a particular member of staff.

Two is always better than one. If both parents cannot attend a meeting, ask an involved adult to come along. We always find there are points one of us missed and points which only one of us hears or understands. We always take time afterwards to talk over the main points and what we understand will happen next.

At Home:

Be there for your child. Any disability will affect the child. Acceptance by a parent is key to development. 

Is there any part of your home’s routine or structure that you can adapt to ease their life? We  are not just talking DIY here guys. Perhaps there are Charities who can support your child’s sensory or mobility needs. Maybe your local health care trust has a team who can help too. 

Perhaps just allowing a child to take part more would help them. Socially, my son is as good as or better than some of his peers. Because we have integrated him with home life, he has never been shy and loves to meet new people. Play, reading stories and cuddles are a part of every child’s happiness and growth.

The Big World:

One day children leave home. Only the most severe disabilities will stop this happening. Independence is a natural part of their development and it’s your duty to assist in its growth.

Play groups exist for pre-school children. Alternatively, support groups and coffee mornings for children with similar conditions are out there. If you can’t find one, form one. Mutual experience shared is often the best form of support. Your not an expert. You do have a lot to share though.