Childbirth is a time of happiness, excitement, mixed emotions, family reunions, and confusion. It is the greatest joy to welcome a small helpless life into our world full of challenges, teaching skills and see him developing and evolving. With a child’s birth are tied our aspirations, dreams, and plans for the future. Siblings are excited, grandparents and brother and sisters are excited to assume new and various roles. Having a child is also seen to cement relationship and blossom the bond stronger in humans.
Everything from the first step he/ she takes, the first footprint, the first palm print the first words he/ she says is an immense treasure trough for us these are the memories we hold forever. We hope to see our dreams and aspirations full filled through our children.
Life is not a roller coaster as we think and sometimes an unexpected event can change the course of our life. Suddenly there is a fight to save this young life we have brought to the world with doctors and nurses running around making it look like a world war disaster zone. Thoughts flying through your head as missiles bombs exploding with uncertainty and the medical gibberish that goes around you can make you a neurotic. Nurse, doctors other family members try to avoid direct questions and put up a fake but brave face to be with you and support you assuring you “everything will be ok”.
Here a child is born with a medical complication or a disability which we had no clue of and imagined that such a thing can happen to you. You have heard such things happening with others you feel sorry for them but never would you have realized that it is at the doorstep now. You are going home with an extra added burden of thoughts, questions, and uncertainties which seems like a ton’s weight.
The Initial Reactions
You start looking for doctors, specialists, and professionals of any sort who can help you and in a way make things normal or near-normal for you. This also brings an additional burden of traveling, doctor shopping, sleep disturbances, financial burden and usually requiring one of the partners to give up work and give that financial source of security away. It also takes us away from family members, siblings often one neglected because of this suddenly new child with additional needs into our life. “Mummy he does not play with me”, “mummy he does not look at me”, mummy you are always spending time with baby” – hear piercing questions to which you have no answers.
You still have to maintain and run your life clutching the straws together on the way to keep the family together. You have numerous questions to answer from numerous people around you and those who have nothing to do with you. These things start to affect our mental health limiting the plans and aspiration we once held. Holidays are curtailed or planned with half the family. Extra people are required to manage the house and maintain a status quo.
The Development Stage
It also brings additional stress of finding a school, keeping up the demands of the school usually torn between keeping them in typically developing schools or putting them to special settings as it is considered the norm. Milestones are delayed in walking, talking, feeding, social skills & toileting. These are considered vital skills to be able to go to school and be able to socialize with your peers. Parents and grandparents feel guilty or a blaming game starts. We also suddenly become very religious spending time at various shrines, rivers, temples and other religious institutions paying for rituals which may not have any effect but mental satisfaction.
With the reach of technology having no boundaries, some of us take to the “google guru”. Others fly or receive services from experts across the globe causing more financial stress and time spent of these. Some may need extra adaptations such as special seating, special cars, special food, special supports at school putting more burdens on parents and the education system. Having a child with a disability also compromises on the professional jobs we do as we are in constant denial, and battle with how we are going to manage this making us less efficient in our own jobs.
Is there a solution to manage the disability better so that we do not undergo the stress and burden we go through when a child with a disability is born. Supports are required for everyone in the family dad’s, grandparents, siblings, and mothers. When the first circle is supported we can target the extended and outer circle. We would often start desensitizing family members and empowering them to manage and handle a child with a disability. Managing disability needs to be a complete circle, not just lines. When treating a child with a disability we need to be treating the whole family with disability.
What Needs To Change?
Western models have been successful than the medical models we have in Asia. Western models are more social and holistic as they not only support the child with a disability but support the child with disability throughout the process from birth to early development to school age and also planning for vocational and retirement age. This is the need of the hour and need for a medical model change. If I as a professional am satisfied that my child is getting quality service I will provide quality service to my clients. It makes the link stronger. Also providing supports such as financial support ( top-up ) for therapy, medical procedures should be built on to social care system. Parents need to be supported by providing them workshops to target areas of need such as toileting, sleep, feeding, and other core motor development issues.
The education system needs to be supported by training and providing special emphasis on dealing with children with disabilities as a core module in college. Home support and home help have been very successful in western countries giving a family a time to look after a child with a disability. Social outings and family get-togethers need to be organized and arranged to have families gaining strength from each other.
Organizations need to start bringing in specialists to target areas of need rather than targeting overt disabilities. These children also need access to specialized healthcare from specific hospitals and trained professionals rather than doctor shopping. I often think there needs to be a microfinancing system which starts to accumulate money so services can be bought and used for children with disabilities in the future. Every child’s birth should be celebrated with happiness whether he is born with a disability or not.
There is an urgent need for health care services, disability services, government agencies, and parents to come together and plan the services which would benefit the current and future generation. This is necessary for the society in general and building a stronger nation. I am an expert in this area and always hope to be able to offer my services if you want to make a change.
Milind Sonawane, M.Sc, SLT, Ireland