My husband and I are blessed with 3 sons. The eldest two are in class 6 and 4 and the youngest is in class A. In spite of being educated parents, it came as a shock for us when we were blessed with our 3rd son and the doctors confirmed that our child was born with a genetic disorder called Down syndrome. Though we always went for pre-natal checkup regularly, we were not aware about any abnormalities and so we weren’t prepared mentally for this news. This made us go through some moments of emotional break downs. In addition, we were advised not to worry but we were also told that there is no cure in any way by the doctors and that the life expectancy of DS people are short generally. All these added more misery to our mental health. We were told that there’s nothing we can do for our son and that his immune system will be weak and he will be prone to every seasonal viral sickness. But God has been doing wonders for my son and he hasn’t been hospitalized even once in 7 years. Why I thought of sharing this part of my parenthood is because I want everyone to know that every disability is unique even if they are diagnosed with the same disorder and that there may be no scientific cure but there is definitely a way out if we all put our heads together to help and guide them each day because I also believe in our God who does the impossible and I wish to believe that he has created our children with a purpose and he will fulfill that purpose in his own time. We decided to leave everything into God’s hand and in the process we received so many spiritual support and encouragements from our friends and family and we started taking one day at a time.
My husband and I came out openly with our child’s condition and did not feel ashamed or sad about it. The more open we were to our child’s condition, the more peace we received. No amount of negativity harmed our feelings anymore. In fact, when people stare at my son, I wish to believe that they are amazed at the unique and wonderful creation of God and that they cannot comprehend how blessed we are to have such wonderful creation in our life.
Many people assume that parents with special children are always sad and burdened and we do not have any happy moments in our life but I want the world to know that it is not true. The reality is that such children are blessings in disguise and they bring so much joy into our lives and they have taught us to be kind, patient and considerate towards mankind.
But while putting our trust in God, We also did not forget to do our part here on earth and so we sought for different therapy for our son like speech, occupational therapy and we also employed a special educator to tutor him from home as it was during lockdown period. All this played a role in helping him improve. However, these therapies were only for few hours and so we decided to make each moment a therapy moment for him and we tried our best to inculcate those practices in his everyday routine at home along with all the therapy that was being taken up.
When I say all this, it doesn’t mean that we are free from all worries but opening up and doing our part as a parent while also putting our trust in God really helped us till date.
With a very supportive husband by my side, I then decided to take a Diploma Course in Special Needs Education in April 2023 so that I could do more in-depth study of how to understand special needs children and in the process educate myself and also help understand my child and support him even better as a mother. By God’s grace I completed the course successfully in the month of May 2024.
Every day is a challenging day and I do not rule out the fact that we face so many emotional, mental, social, economic, financial and spiritual hardships as a parent of special children but every experience always makes us even stronger believing that it is also not the end of the world for us either. If the world cannot find solution for us, we can always try something different and find a way for them, and if we cannot teach them our way, we can always teach them their way as they are our very own and we cannot just leave them at the mercy of somebody’s opinion about them whether it is factually proven or not.
Therefore, I would like to appeal to all the parents of special children, do not give up on your child. Together, let us make this world a better place for our children so that no amount of negativity can ruin their existence. Let’s just be honest about their disability because keeping them confined due to their weaknesses will make them even weaker. Let us allow their disability to be a new trend and normalize it by coming forward together and creating a world free of any discrimination, prejudice or injustice. If we as parents don’t open up about our children’s condition, they will not be able to stand for themselves and so let us all be brave and do away with all the perceived stigmas or social stigmas and come together to help our children overcome their fear and disability and normalize it for them by being supportive parents as the time is now or never.
Inatoli v zhimo
Parent of Anguvika Shohe.