MY SECRET WORLD, PREETI SAVUR
April is Autism Awareness Month. Prior to my son’s diagnosis, I never knew this month even existed. That’s how it typically goes I guess. People don’t pay attention until it’s their life. I get it. That was me pre-Autism. Now, my whole world is an Autism Awareness Month. I have a nineteen-year old with semi verbal Autism, and I invite you to take a peek inside our secret world. Autism can be scary, isolating, beautiful, humorous and sad. I, along with many other families, live in this world. Our children are the faces of invisible disabilities.
My Secret World
I could tell you that I have stayed awake countless night worrying about my son and his future. I could tell you I have not slept through the night in years. I could tell you I spend days and nights worrying about my son’s future. I am so scared of dying before my son that there are times I just breakdown. I worry about who will love him and care for him after I am gone. I worry about what is going to happen to him when I can no longer provide care.
I could tell you that I have cried enough tears to fill an ocean. I could tell you I will stare at my son for hours just wondering what is happening in his head. I would trade anything to climb inside his head just so I could see the world from his view.
I could tell you that having a child with disabilities has turned me into a nurse, a doctor, an advocate, a fighter, an educator, a therapist and a psychologist. All titles I never wanted.
I could tell you that we had lived in isolation, because we rarely went out, as people were cruel. I could tell you that I have grieved for the little boy that I dreamed about when I was pregnant.
I could tell you I have seen my son hit himself. I have seen him beat his head ferociously with his own fists to get his point across. I have seen him in pain. I have held his screaming body while he has vented his anger on me.
I can tell you that I have watched people stare at us. Stare at him. They wonder if I am a bad mom. They wonder what is wrong with him. They wonder if I don’t discipline my seemingly normal looking son.
I can tell you that I have been judged. I have been shamed. I have even been shushed.
I could tell you that I have lived the past sixteen years in various waiting areas while my son has therapy, etc. His village has hundreds of people in it from therapists to teachers to doctors and I know them all by first name. They have become my friends.
I can tell you that I have yelled at doctors, therapists and teachers. I have begged, pleaded, and argued for help. I have seen the ugly side of the so called “Inclusion system” in India. I could tell you that having a child on the spectrum has affected every aspect of my life. It impacted my marriage, my friendships and my career.
I could tell you I didn’t know what true love really was until I held that little boy in my arms. And then again when I was told he was Autistic. He was still absolutely perfect to me. I vowed to give him the best life ever. This is my secret world.
Ayush is so much more than those labels. He is a complete joy. He is perfect.Being Ayush’s mom has given me a purpose and made me a better mother to Aahana, his younger sibling. I know what it’s like to fight for things like milestones and services and equal rights. I take nothing for granted anymore. Autism has made me strong. Autism has given me a voice. Autism has shown me love.
Autism is an invisible disability however, I want Ayush to be invisible no more.
Raising a child with autism has its share of challenges and joys, and it is not always easy to express them. Often, we hold our tongue, knowing that most people have the best of intentions even if they misunderstand our world.
While sometimes it is best to leave things unsaid, here is something I as an Autism Mom (a badge that I wear very proudly) would like to share:
Please do not tell me that my child will grow out of it.
It’s not that I don’t want to agree with you—or even that I don’t think there are elements which he will grow out of—but as an autism mom, I spend so much of my life setting him up for success, and when you pass it off like it’s a silly phase, that just makes me feel like you think I am overreacting. That makes me want to avoid talking about my son’s progress and struggles with you, because you so clearly do not understand the nature of his diagnosis.
Please just let me have a bad day
You do not always have to tell me “even typically developing children do that.” Yes, I am aware. As a parent of a typically and atypically developing child, I am fully aware that ALL children have bad days. Guess what, I am a mom, and sometimes my struggle is not related to my son’s diagnosis. Sometimes, we are just having a bad day, and I would like to be able to share that with a friend without being corrected and informed that said behavior is well within the “normal” range.
Please do not give me advice on discipline
You know how you have that one friend who has no children and always tells you, “When I have kids, I will never give them chocolates or aerated drinks, and they will go to bed when they’re told, and they will pick up all of their toys and never talk back” and you think…”OMG, you are so clueless. I can’t believe I used to be that clueless.” That is how I feel when you try to give me disciplinary tips for my son. Trust me…it’s not that simple. It is just not.
Please forgive me for talking about it so much
As much as I wish we had gotten the diagnosis, signed up for “treatment,” and then everything was business as usual, that is not how it works. At first, I cringed at how people used a title like “Autism Mom” or seemed to talk so insistently about their child’s diagnosis. In an effort to never become one of “those moms,” I was avoiding a lot of conversations and topics. However, when you have a child with autism, it becomes an inseparable part of your world. Sometimes, I may feel I need to give you a little insight into the diagnosis to help you see how big a milestone is, or how discouraging a setback may be. Sometimes I am just telling you about my day. I know my son is more than autism. Please don’t think that I feel it defines him or that he is limited to it. It is simply a part of him and a huge part of my family, but I see him for all of his individuality and abilities. I know that he is bigger than autism and that it cannot hold him back.
Please ask me questions
I want you to ask questions, because I know that if you could better understand why my son does or doesn’t do things, you will have a greater love for him. You will have a deeper compassion, and you will better see how amazing he is. My son is so incredible. You may simply see a child who easily throws tantrums and doesn’t talk much, but if you asked me questions, I could explain to you why we think he isn’t speaking, and how we have tried different ways to teach him to communicate, but he wasn’t interested because he developed his own communication system. I could tell you how brilliantly he communicates without saying a word. I could tell you how his stimming behavior is actually an attempt to self-regulate and how people stim all of the time: chewing fingernails, twirling hair, tapping fingers, etc. Ask me why I allow certain behaviors, or what the difference is between a meltdown or a tantrum. Ask me why he is so set in his ways, and if anything can be done to make him more flexible. I would love to share our progress with you and tell you about what has worked and what has not. I can help you understand how anxious he can become when he is unprepared for something. I can explain to you how even a simple tantrum because he hasn’t gotten his way (as all children sometimes do) can spiral into something bigger, where he may self-injure or not be able to catch his breath because he has become so fixated that he is not able to detach himself from the desired object.
I am scared
I am afraid my son will never speak. I am afraid he will not be able to show other people how amazing he is. I am afraid he will have psychological issues brought on by the autism. I am afraid he will feel frustrated and misunderstood as he grows up. I am afraid there will be certain medical issues that are often common with autism. I am worried that he will not be able to have all of the things that everyone else takes for granted. I am concerned that I am missing something. I am scared that I am not doing enough for him.
I feel guilty
I cannot help but believe that there is something I should not have done, or something I could do that would make it easier for him. I wonder if he would be talking now and telling me all of his thoughts and asking me for his simple wishes. I see him uncomfortable in clothing, feeling overwhelmed, or even happy, but I do not get to know why, and sometimes I just wonder what I could have done. What if I am missing something? What if there is one more thing I should be doing? I tell myself that we are doing so much to support him, but I still feel guilty.
Autism has changed me
Autism has opened my eyes, released my heart, and cleared my mind. When I hear about another mom’s struggles, I no longer judge her actions. I understand that people are different, families are different, and there is no one-size-fits-all. I no longer have a head full of answers, but I do have a heart full of compassion. I have found support from strangers, and I have felt isolated by family. I have seen the sheer goodness of community and the cruelty of ignorance. When I became a mother, I saw the world differently. I began to see each person as someone’s child, and it helped me to love deeper. When I became an Autism Mom, I saw the world differently. I began to see each person as overcoming their own struggles and handicaps, and it made me love freely.
I am proud of my child
I do not always get the chance to boast about my son in the “typical” ways. Sometimes it is too hard to explain what I am proud of because unless you are in my home, you might not know the things we are working on. Some things may seem small to you, but they are huge for us. Sometimes I do not know how to share the positive without exposing my son in ways I do not think would benefit him, so I keep a lot to myself. Whatever the reasons, sometimes I feel like his autism is front and center but his accomplishments take back-stage, and I do not want it to be like that. I burst into giggles like a schoolgirl when my son hits a new milestone. I think he is incredible, and I love EVERY single thing about him. I know that I am blessed to have him, and I would not change one thing about who he is.
Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the views of The Wonder Women World.