Let me state this at the start of this post–my son is one heck of autistic. What this means is that he has way too many autistic traits that make the possibility of him leading an independent life a little doubtful. Do I worry about it? OfCourse, I do. I worry myself sick thinking about it. I bawl my eyes out very often wondering what his future would look like. I am scared of losing sight of him even for a minute–not just outside of home but also at home. He needs that kind of supervision. I am hypervigilant and exhausted to say the least. I wish everyday that he could talk, have friends, understand the world around him, learn to navigate his days without support and be like what most 12-yr-olds are. So how does all of this translate into my everyday life?
It keeps me positive. People have often asked me what keeps me positive when I have so much going wrong for me. It’s simple–I don’t have a better option. I could crib and complain and wallow in self pity, or I could stay positive and keep trying. I can’t let my son’s dreams die even before they are born, just because they don’t look feasible to me now. I want to try my best to at least let those dreams shine in his eyes even if they never get to grow the wings they deserve. The first step in that direction is to stay positive.
I was not this person from the start. I was grieving and depressed and felt cheated and defeated. I felt angry and helpless. I went through it all before arriving here. My son held my hand through this journey and kept me going. It is impossible to be around him and not wish and hope for everything to be perfect for this soul who knows nothing but smiles, hugs and love. Staying positive is just a small side effect of his company.
I have seen him grow and learn, even when many around him thought he could not. I have watched him brave changes that an autistic brain finds hard to deal with. From having a meltdown when his bedsheets were changed to moving into a new house without a single glitch, I have seen him grow tremendously. From struggling to identify an A from a B to typing on a keyboard in just a period of one year, he has shown that he can learn if we believe in him. He has made improvements in so many aspects of his life. They are small to an onlooker but huge for his autistic world. His pace is slower but he is still moving forward and that is my reason to stay positive.
I understand that to some my optimism might appear delusional, even foolish. Sometimes even I feel like I am living in my bubble and that one day it would burst and my dreams would melt like a snowman under the harsh sun. I argue with my conviction sometimes. I have self doubt and I feel defeated occasionally , enraged too–the same roller coaster of emotions that I believe most parents with a differently abled child go through. However, my son pulls me out every single time. He shows me that he is ready to keep moving to a place that is better than today, to a future that holds not just struggles but also a validation of his belief and his dreams. He pushes me to dream for him, to hope for him and to keep trying, and to not give up. He reaffirms my faith. He assures me that my optimism is based in reality, not illusion.
Even if his today may not look so promising, his tomorrow might change and my belief in that change is my strength. This is us staying positive because staying positive is what my son needs from me–to succeed, to fly and to live a life the way he deserves to live. Him being autistic changes none of it, in fact it makes it even more important that he is surrounded by people that empower and encourage him, not pull him down with negativity and pessimism.
The life I dread just thinking about for my son is the life he might lead. Still, he gets up everyday smiling brighter than the sunshine. If that does not drive me to smile my way into uncertainty and stay positive about what the future would look like, I don’t know what will.
Besides, worry and happiness can co-exist. One is not the antithesis of the other. So I choose to be adamant about looking for that silver lining in the clouds that shroud our days. I choose to be hopeful. Hope is powerful. It’s hope that makes it a lot easier for me to climb out of the abyss that on many days I find myself in. Hope is my weapon that helps me fight for my son and the magic that turns those tears that I shed into dew drops that glimmer with the promise of a future, full of opportunities for my son.
The hope that I live with almost everyday is stubborn. Even when we hit a rough patch or are not moving ahead the way we expected or hit a wall, it refuses to leave my side. It’s tucked neatly in the corner of my heart, whispering never to give up on my son. It constantly reminds me that with hope comes huge responsibility–the responsibility to keep it alive, make it a reality, and be persistent. My son may be autistic but that does not mean he does not have a future for himself. If there is a future, there is hope. My hope is not me escaping from our reality, it’s me accepting it but refusing to let this reality defeat our spirit. It’s us saying no to what the world has decided for my son and it’s us trying to carve our own path bit by bit to where our hope will meet our dreams someday.
And you are one heck of a mother and a person. I m cheering for you as you guys move forward. Love and best wishes..
Thanks so much Urmila!!
While reading this entry, I kept going back to a beautiful quote by L J Suenens, “Hope is not a dream but a way of making dreams become reality”. Thanks for a very inspiring and wholesome read!
Thanks Shailaja! That’s definitely a quote I can live by
Very inspiring and full of “hope”…. You represent our experiences in a beautiful way in your writings!!
Thanks Aparna!!!
Amazing read Tulika.you are one amazing mom ♥️
Thanks Hadia! I have people like you to help me with it
Awesome read as always. Your writing motivates many people!!
Thanks Falguni
Amazing read and truly motivating, honestly my philosophical side always says we are all snowman in one sense, just that Ved talks in the different frequency ranges it’s not his problem, You are truly tuning to his frequency and that’s a great achievement for you, not all parents with differently able kid can change their frequency. I am so proud of you and I do believe in many ways I associate myself with Ved, as I have my own struggle of communicating a thought clear way that all can understand, I am sure everyone has at some level just that we are not showing the sign we are not understood or convey and I think that way Ved is good that he can convey and doesn’t bother always if someone understands him or not. That is one great lesson I have learned from him, not to bother if someone is not understanding or making sense of what I say, I just feel Ved at that point of time, all the time, and remember him more often during such situation.
Thanks for your wonderful insight Jayesh!!
As always, a very beautiful and well written post Tulika. I’m sure anyone who read this write up will be inspired to continue to hope as well as stay grounded as they carry on their journey of life. Thank you for these gems and wonderful reminders.
I’d love to leave you with my favorite quote by Barbara Kingsolver,” Hope is a renewable option: If you run out of it at the end of the day, you get to start over in the morning.” Highly recommend her book The Poisonwood Bible.
Thanks Mitu. I love getting your feedback. I will definitely look into that book.