In my opinion, raising any child feels like herculean task. In a neurotypical child scenario, parents look up to family and friends for advice and comfort, probably they have encountered a similar issue and will have some words of wisdom. This type of support does not work well when the child is in the spectrum because every child in the spectrum is most unique. What can parents do in these scenarios? Whom should we look for advice? For many such reasons parents of autistic children feel lonely most of the times. The fear of an autistic parent is very different to fear of a neuro typical parent. I know this firsthand as I live in these worlds every day.
With my daughter I worry about her safety, personality, being her support throughout her life’s challenges and failures. I have other parents around me who share the same feelings and that provides some hope and perspective for her future.
My fears for my son who is autistic is completely opposite to my daughter. I cannot share my concerns for him readily with my friends and family as they will never be able to understand despite their best attempt to understand the situation. I know there will always be a solution for my fears with my daughter, but I may not find that solution for my son. The only way I supress my fear is by loving him unconditionally and enjoying the tiniest of achievements he accomplishes.
Though I supress my fear these aspects constantly bother me:
This is by far the biggest fear for Vinod and myselft for both our kids. We fear most for Vivan when we are not here. And don’t want Laya our daughter to shoulder responsibilities beyond her age. We have family and support who know his habits and personality. Naturally as parents we know Vivan the most. I know my son so well that I can always understand what he is thinking and feeling without even needing any words. I always think, I should program a robot like how I think for Vivan or if possible, bundle up my brain and pass it on for when I must leave him forever. I don’t know if there will be anyone who will ever love and understand him as fiercely as I do. My heart will break to leave him, but the reality is I will leave him forever one day. I have recently started looking into what will happen to Vivan when I die. I am connecting with Aspect.org in Australian and a few trusts in India that has some great resources and advice. I’m hoping that preparing for Vivan’s future now which will give me great peace of mind. I will also share the details once I have them with me so it can be a resource for other parents.
- Embrace imperfection and thrive for the best
I am constantly striving to ensure Vivan can develop enough life skills to live independently. Vivan cannot remember the place where we live, does not remember phone numbers, does not know how to ask for help. His safety is compromised at every level. My professional ambition was to move into corporate management, I have taken a back seat professionally to ensure I am there with him during all his therapies, medical episodes, fighting with NDIS for more funding to access therapies throughout the year, ensuring I am there for all his achievements and don’t skip any of his important meeting at school. I explore the world with him even though he can get sensitivity to the place, have meltdowns, experience increased stimming and always believe in making memories so one day he will recollect and remember his environment and can lead an independent life. But somewhere at the back of my mind I always think I am not doing enough and Vivan could do better if I push myself a little more. I want to ensure Vivan lives a full and happy life as much as possible. And there are days I feel he deserves more, and I am not doing enough. I constantly remind myself that as a parent I should embrace imperfections and thrive for the best. I must trust my efforts will help Vivan to lead a happy and richest life possible.
- Always conscious to improve his communication
Although he’s technically verbal, Vivan cannot express himself very well, he can answer simple questions but far from holding a conversation. Given options to questions, Vivan can respond to them. He has improved from echolalia where he would only repeat what he hears to answering few questions. It took over 6 years for him to answer simple questions and ASD has increased my patience level and always instilled hope. At best, Vivan can get ready to school on his own, eat his food and go to toilet without help. At worst, he requires a translator who understands his individual style of conversing and the funny part is Vivan’s dad sometime is lost conversing with him. I am uncertain if Vivan will understand the freedom of language ever, I want to try my best to improve his communication in any way I can. Vivan is 10 yrs, his growth has both fascinated and surprised me at the same time. I strongly believe that Vivan will challenge himself to communicate better and surprise us with command over language and communication.
While I record this Vivan is 10 years old and soon he will attain puberty and will transition through adolescence, but always worried about how he will understand changes to the way he looks and changes to his body? How to deal with the unexpected mood swings? How to explain new and strange sensations? It seems unfair that Vivan’s body is developing, he does not understand the changes. I don’t know how to explain that the changes are perfectly normal when he cannot express his struggles? Again, I can only hope I’m doing enough by being proactive about teaching him the changes to expect.
