Raising a child with a physical disability is not easy. There’s a whole new dimension to the demands of parenting with additional financial, physical and emotional needs to be attended to. Family members may have to schedule their days around the needs of the child and even develop new skills to assist them. They have to face additional medical bills or the costs of redoing their home to make it more suitable for the child’s needs and might have to give up their job and become a full-time caregiver.

The dynamics of a family with a physically disabled child can go two ways: family members adapt well to the situation, become familiar with the strengths and weaknesses of their child and grow to be a strong support to their success. This utopian situation is very rare. In a vast majority of cases, the parents may struggle to deal with the needs of their child and may find themselves frustrated and yearning for more support.

In the Indian system today, there isn’t a lot of support for these parents. Public buildings rarely conform to disability-friendly guidelines, schools and workplaces that cater to these children’s unique needs are few and far between, and the health-care system instead of making allowances for patients with chronic issues, often burdens them with further financial woes. The lack of communication between lawmakers, medical facilities and educational institutions is another big stressor. The degree of attention required by the child might even force parents to give up their own dreams and even just simple leisure time, which can further add to frustration.

In a two-parent home, one parent tends to become a full-time caregiver while the other takes on the task of providing for the whole family. Both these roles are made additionally stressful by the lack of support from your equally over-worked partner, and the preoccupation with these roles can strain the marital bond. It can also cause resentment when the lack of communication on important decisions causes both parties to feel either left out or unfairly burdened. The caretaking parent might resent having to give up their career and social life while the provider feels isolated from the family and left out of the seemingly stronger emotional attachment the child has for the caregiver.

Dealing with all of this without much support from the community can lead to parents having to advocate for these rights on their own. A lack of insight and coordination on the part of administrators means that parents have to also find time to arrange petitions or marches to fight for their children’s rights in society.

Fortunately, research in this area has recently increased. Therapists have worked on time management and communication techniques that can both relieve stress and strengthen your bond.

There are a few things that might be helpful for you to have in mind in this situation.

Ask for Support

There are several other people going through similar, if not identical, experiences. Share stories and ask for advice and help. Form a network and share resources.

Take Care of Yourself Too

When your main role is to look after somebody else, you forget that you can only do this job well if you yourself are healthy and at peace. If you need a break, don’t feel ashamed to ask for one. Reach out to friends and family and regularly find time to do at least a few of the things that help you feel good.

Remember that You Cannot Be Perfect

Try and shift your perspective and see your mistakes as part of a larger picture. You’re giving your best to a very hard and often thankless job, it’s only natural to slip up sometimes. Beating yourself up is not going to change the situation, so it’s best to learn from it and move on.

Remind Yourself that You Are Somebody’s Hero

You’re probably living a life now that you’d never thought you would, and you’re committed to it. Remembering medication, stretching sore muscles and performing simple tasks for your child, while dealing with their tantrums and pain, takes a brave and dedicated person.

Make Therapy Fun

For kids with disabilities, physical therapy is often the closest they come to playing. Let them enjoy that, and it’ll bring a new life to a monotonous routine.

Enjoy Your Kids

Between check-ups and therapy sessions, find time to let loose and be silly, share your hopes and dreams and get to know your child and who they are beyond their physical needs. It can be hard to find the time and energy, but the closer your bond, the more meaningful every trip to the doctor becomes. It will also help you preserve your identity as more than just the parent of a special needs child.

Go Easy On Yourself

You’ll be forced to make a lot of tough decisions, and there isn’t always one right answer. However long you agonise over a choice, you may still not get the results you were looking for. As long as you know you’re doing your best, don’t punish yourself for past mistakes. Doubt and regret will get you nowhere, you need to focus on moving forward and doing what’s constructive for your child.

Cherish Every Victory

Instead of comparing your child’s progress to someone else’s, recognise that they are overcoming great difficulties to perform even a simple task and feel proud of them. Congratulate yourself on a job well done and share the celebratory moment with your child. Mark every milestone of your unique journey together.

Nurture All Your Relationships

Remember to find time for your friends, your family, and your spouse. These are the people who will be there for you when the pressure gets to be too much. They are there to love and support you and share your load, so don’t hesitate to reach out to them. 

References

Abilities. (2003, December 1). 20 things every parent of kids with special needs should hear. Retrieved February 27, 2017, from http://www.abilities.com/community/parents-20things.html

Kholoud A. Al-Dababneh Merfat Fayez & Osama Bataineh. (n.d.). Needs Of Parents Caring For Children With Physical Disabilities: A Case Study In Jordan. International Journal Of Special Education

The health of caregivers for children with disabilities: caregiver perspectives - Murphy NA, Christian B, Caplin DA, Young PC.

Murphy, N., Christian, B., Caplin, D., & Young, P. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: care, health and development., 33(2), 180–7. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/17291322

Knight, A. (2007). Caring for a disabled child: The comprehensive guide to child disability. Retrieved from https://books.google.co.in/books?id=Gl9HoZ6MjBAC&pg=PA6&dq=parental+caregiving+for+a+physically+disabled+child&hl=en&sa=X&ved=0ahUKEwi5qKvotK3RAhVJsI8KHVCFBSAQ6AEIWDAJ#v=onepage&q=parental%20caregiving%20for%20a%20physically%20disabled%20child&f=false