My nonverbal son’s autism is not a tragedyBy Tulika Prasad
Tulika Prasad is mom to Vedant who is on the autism Spectrum. She is a computer engineer by education and an autism advocate by passion. She is an Autism Speaks volunteer Advocacy Ambassador and also volunteers locally for autism acceptance and awareness. Tulika is also a blogger and can be found at BrainDroplets.
Being a mom is a feeling that’s hard to explain. Add to it a layer of being a special needs mom. No matter how closely you’ve known a family of a child with special needs, you’ll find it extremely difficult to understand their emotions - the joys they find in little things, the challenges they go through that are hard to explain and difficult to see or comprehend. I wish it was all black and white but it’s not, and sometimes even the best of wishers get it all wrong.
It might look like my son’s autism causes us pain and misfortune, but that's completely incorrect. There is a huge difference being worried about my child and his future and feeling like a victim. My son is and will always be my joy, my pride and my reason to look forward to every day.
I’ve spent several sleepless nights - some worrying about what the future holds for my son and some lying next to him while he stayed up all night giggling and jumping, or anxious and crying. Those nights have been exhausting and I’ve complained about not getting enough sleep, but none of that even remotely implies that my son is the cause of my misery. In fact, it’s the kiss I plant on his forehead the morning after that recharges me.
Unlike many families, we cannot do spur of the moment trips. We have to plan, pack and prepare for contingencies. Some places and events are not for us and some types of vacations, no matter how appealing they are, are not where we see us. That does not mean that we don’t have fun. Those peals of laughter when our son is in the pool or water park gives us enough reasons to be happy and content. His presence in our life does not restrict us, it rejuvenates us.
He cannot talk to me. He cannot express himself in words, and there are so many helpless moments due to this that it breaks my heart thinking about how frustrating it must be for him to not be understood. However, we’ve found a way to read each other. It’s not perfect and I falter a lot. It’s a process and we’re learning.
Language is complex but communication is simpler if your hearts can talk. His speech and language delays are one of my topmost concerns and I worry a lot, every single day, about it. That’s exactly what I feel - worry; not regret about having a nonverbal child. He is the one I love being around even if we don’t have enough words between us. When he is sick or not home, the house seems lifeless. He might not talk but he is the jingle and not the jinx of my life.
I had envisioned having lots of little kids playing in my backyard having a playdate with my son. My son does not have a single friend as of yet. Their loss!!!! His lack of social life and his inability to socialize distresses me. I think about how he might feel being alone at school, watching other kids play and chat with each other while he has not a hand to hold or a secret to whisper in someone’s ears .That’s what torments my heart. Not the fact that I have to juggle the roles of his mom and his only friend.
Everyone said that once he turned 5, he would start getting more and more independent and I would have more time for myself. Destiny had something else in mind. I’m always hypervigilant and I’m extensively involved in his daily living activities. Does that get exhausting? Oh yes! Do I wish for some time for myself? Totally! Does that make me wish I didn't have him? Absolutely not! He is the blessing I always wanted, not a bane that someone cursed upon me.
We have been through so many meltdowns, and quite a few aggressive behaviors. It wears us down. Some episodes are followed by my own meltdown because I feel drained and powerless, unable to help my son or our situation. However, my son is not the reason for the agony; it’s his diagnosis that pushes him into those deep ends. My son is still and will always be my delight.
I’ll shout at him when I’m upset. I’ll complain about being overworked and underappreciated. I’ll sometimes envy those moms who can chill out without having to obsessively worry about their child. I’ll lament about never having time for myself. I’ll cry over all the things my son might not experience, do or have. I will still spend many more nights tossing and turning, thinking about him and what lies ahead. I’ll do all of these and more. There will still be days when I would want to run away from it all, even if it was for a day.
Frustration, depression, exhaustion, isolation, failure, helplessness are just a few of the emotions I go through as we make this journey. However, that only makes for a fraction of the experience. I have experienced happiness, hope, amazement, love, strength, and everything in between as well. The journey is unquestionably difficult, but it’s also full of lovely memories, amazing stories and a lot of laughter. Above all, my son, my guide, is the most beautiful part of this adventure. He is my life, my joy, my inspiration, not a tragedy.