I remember the day so clearly.
I was sitting on an exam table with my terrified 14-month-old clinging to me, asking me to save her from yet another shot. Little did she know that I was even more terrified than her, but for another reason. I was speechless, I was sad; in that moment, I already knew what the doctors were going to tell me.
You see, Kaya had stopped talking a couple months before that appointment, and had started fearing people she knew and loved. I knew what was happening, and that wouldn’t be the end of the heartbreak.
Autism doesn’t come with an instruction guide, but it does have a way of building a family who will never give up. It does give me a little girl who smiles through her struggles and fights with everything she has, every single day. It is from these struggles and battles that warriors arises—warriors that reside in the hearts of small children fighting big battles, and the parents and caregivers that love and encourage them with strength they didn’t even know they had.
Autism doesn’t come with an instruction guide, but it does have a way of building a family who will never give up.
Before I had kids, I had always been fascinated—for lack of a better word—with the alarming rate at which autism was affecting children in our country. But, I was not a mom. I didn’t understand then what I clearly understand now: sometimes the value of a number or statistic can mean nothing to one person, even if means everything to another.
When I found out my baby had autism, I wanted to protect her from all the negativity that went with it. I was always known as an impressionable person, constantly trying to do whatever I can to fit in. Kaya helped me evolve into an outspoken person—her guardian, her protector, her mother.
It’s through that process that I learned about myself, my daughter, and so much more about life. Here are nine things I’ve learned from having a daughter with autism:
1. Raising a child with autism in a traditionally conservative culture is hard. I’ve learned that people fear what they don’t know.
Parenting is not easy, plain and simple. What I’ve learned is that people are people and no matter what you do and say, they will always have their opinions and judgements—whether they are in a similar situation or not.
Being Indian, my culture is traditionally conservative, and dealing with situations that are “different and taboo” is difficult—especially within your own group of family and friends. You would assume that those people would be the most supportive and non-judgmental, but I found that having a daughter with autism in this culture would be harder for my husband and I than it is for her.
Being so vocal about Kaya was deemed to be selfish of me by others, and the sentiment stung—apparently what she has is embarrassing, private, and the underlying tone was that I am overreacting. We were asked questions like: “Will my daughters catch it?,” “Did you try this prayer to fix her?,” and “Have you fed her this food, you should, you’ll see she will start talking.” As a culture, we are not supposed to have “imperfect” kids.
ASD, of course, does not have cultural lines and can affect anyone. But I’ve learned that most of this ignorance comes from people just not knowing. Instead of getting upset at these questions, however absurd they may be, I take a deep breath and answer with honesty and without negativity. I realized how easily people can say things without thinking about how much pain it can cause someone. I found being honest in a situation was the best way to handle it for my own sanity.
So, to the parents in this exact situation, hold your head up high and don’t hide behind the norms of your culture. This isn’t about them, this is about you and your child.
Don’t be afraid of being open and honest about your child. Don’t be afraid of what people think. Don’t think you have done something wrong. Speak up, stand up, and be your child’s biggest advocate—it’s liberating, I promise.
2. I’ve learned to go out and not hide. We are not bad parents, we’re doing the best we can given the situation.
The first few years after finding out Kaya had autism were difficult, not only for her, but for our other two kids as well. I felt an extreme amount of mom guilt for several reasons. Mainly, it was due to the fact that going into public places with her was trying, so for a while, we tried not to.
Loud environments proved to be very challenging. Kaya threw tantrums, she threw herself onto the floor, she banged her head against anything she could find, she hid, she wandered off, she got lost—I felt out of control, so I started to fear public places and judgement from those around us.
The day after we had lost her in a crowded theater in LA, my 5-year-old son said, “Mommy, leave Kaya at home, it’s not fun when she comes.” I knew how he and my other daughter felt–life had become a game; we just never knew what would trigger a meltdown. I felt so awful and heartbroken for all three of them.
Instead of making the situation worse, my husband and I came up with a plan that worked for all of us. Instead of avoiding outings, we just learned to deal with them better. We now talk to her about where we were going before we go, we keep her focused on one thing at a time, we pay attention to all three of the kids equally, and we did try to do it all with patience and love to the best of our abilities.
By doing this, Kaya learned. She was still like any other toddler trying to get their way in that sense. She learned to adapt, just as we did. During those times, and even now, I wish people would just be nice and cut us some slack when we’re out and a problem arises. We’re doing the best we can.
3. I’ve learned that I’m stronger than I knew I was.
When Kaya was diagnosed, it wasn’t the first time in my life that I was faced with a situation I knew nothing about and didn’t have anyone to turn to for guidance. But it was the first time I was filled with so much uncertainty, fear, anxiety and unease all at the same time. I remember sitting and wondering what the hell I was going to do. My mind exploded with all the subsequent appointments, nonstop phone interviews, endless paperwork, and meeting after meeting with therapists, specialists, and doctors. It was my new “normal.” I couldn’t turn away from her, she didn’t deserve me like this.
I needed to be her strength. I couldn’t shrink back in fear. She wasn’t broken, defeated, or lost—and neither was I. I knew how to be resilient, and I needed to show her how. For a little bit, I had forgotten my own strength and the power of it (my name actually means power and strength). I was able to find it again, hidden under my heart, and I pulled it out and took Kaya on this journey with me.
We don’t let her feel sorry for herself. We’ve taught her that she is a warrior, she is a fighter, and she is strong—just like her momma. It’s incredible what you can do when you have to. I underestimated myself at the beginning of this journey, but I do not anymore.
4. I’ve learned that my daughter is an amazing teacher.
The past six years have taught me to live life, how to enjoy every moment, and how to be happy–all because of Kaya. Nothing is impossible in her eyes, and it’s because of this we have learned to embrace her diagnosis. Her inner strength is a force to be reckoned with and it’s awe-inspiring.
The truth is, even though she has an extremely difficult time articulating what she wants to say and how she feels, if we just stop and listen to her, she blows our mind with the knowledge she possess, the depth of her wisdom, and the care she takes in making us understand what she is trying to say.
Imagine if we just stopped to learn and listen to everything and everyone around us. It’s the youngest of minds that teach us to live, learn, and hold on to what’s important.
5. I’ve learned to support all of my kids in a better way.
Painfully, we’ve learned that Kaya gets very hurt and exceedingly emotional when we give unwanted direction or discipline in front of others, no matter who they are. Nobody likes to be scolded, reprimanded, or embarrassed while in the presence of “strangers,” and she’s no exception–she doesn’t want to seem different in front of people.
Of course, we never know what will trigger her, but we have learned that in order to prevent these meltdowns, we have to better prepare her and ourselves. If I’m able to, I show her where we are going, who will be there, what will happen while we are there, and who to look for if she can’t find me. We’re blessed that our family and friends always let her know they are keeping an eye out and she can come to them at any time.
The aftermath is tough, because she doesn’t know how to express her anxiety and she doesn’t know how to separate herself from the “noise.” It’s times like these that me or my husband, and now our son, will console, comfort, and hold her. The beauty of talking her through her anxiety and fears is that it also works for situations involving our other kids as well. It’s not always about Kaya and her autism–sometimes there are lessons to be learned as parents for all our kids. Lending my support before and after an anxiety-provoking event is one of the most important things I can do as a mom.
6. I’ve learned that the label she carries means nothing, and it also means everything.
Yes, Kaya is labeled constantly, and to a certain degree, we all are. What labels don’t do is define us.
Even though I want to protect Kaya from the negative comments she receives from her peers and adults alike, she doesn’t need me to. She just wants to be herself and she tries her hardest to get people to see and accept her for who she is–unapologetic, brave, and beautiful.
Kids with autism are often perceived as lacking emotion, but I know the opposite to be true. Kaya lives with so much emotion everyday, and she doesn’t let herself be caught up in the negatives of having a diagnosis–something I have learned to do from her.
She wants to be a makeup artist. She wants to help kids who don’t have food. She wants to learn to read better than her sister. She wants to beat her brother in a sprint. She wants me to learn to be the best version of my own beautiful.
Has she ever said those things to me? No, not in so many words. But, she has shown us in her own confident ways that nobody has one label, one hat. We are whatever we want to be, you just have to do you with a clean heart. Like everyone else, she is doing the best she can with what she has.
7. I learned to leave the “why” to the professionals. Instead, I focus on the present and what I can do to prepare for the future to give her a good life.
Kaya already has autism, severe speech delays, learning disabilities, and behavioral difficulties. I’ve learned the journey with autism doesn’t begin and end with a diagnosis. Finding the cause is only half the battle–living life with it, well that’s a whole different world.
I can’t focus on what caused it, or why. I have to focus on what I can do as a parent now to insure she has the best opportunities to thrive.
8. I’ve learned that things don’t always go the way you had hoped, wished, and prayed for.
Although I don’t want Kaya to ever feel sorry for herself, the struggles that she and those like her face are very real. With Kaya being on the moderate end of the spectrum, a lot of the struggles on the parenting end cause me so much grief. I hear things like, “She isn’t autistic enough” (to qualify for certain therapy services) and, “Her understanding is that of a 4-year-old”–these moments really mess with me as a mom trying to do what’s best for my kid.
With every milestone, I always counter it with “what if.” When the therapist says, “In six months, Kaya will be able to recite and recognize the alphabet without help,” the first thing that pops into my head is, “What if she doesn’t?” It’s not a negative way of thinking, it’s just the reality of what we have to deal with—because more often than not, things don’t go as planned.
What if she never learns to speak audibly? What if she never is able to read? What if she becomes an “adult child”? What if, what if, what if. It drives me crazy, makes me incredibly sad, and makes me all kinds of anxious. But then, what if she learns to read fluently? What if she becomes the founder and CEO of her own cosmetics company? What if she lives her life on her own terms?
You see, the possibilities are endless, and I have learned to prepare for both.
9. I’ve learned it’s okay to ugly cry, because sometimes this shit is hard.
My love and determination for this brave, resilient, and beautiful girl holds no bounds.
But I’m also human, and sometimes, I just don’t know what to do.
Although I consider myself strong and I try to make the most informed decisions I can for Kaya and our family, sometimes it just gets to be too much. The endless worrying is the worst, and it’s just so hard. The constant thinking about advocating for her so that she gets a chance for herself in the future on top of the the rude and insensitive comments and stares from others—it all becomes too much.
When this happens, I lock myself in my bedroom and just cry and cry until my pillow can’t hold any more tears. Then I get up, wash my face, put a smile on and do it all over again, because I want Kaya to know that she is my everything and I love her.
And in my eyes, she is absolutely perfect—exactly the way she is.
This article was originally published in April 2019. It has been updated for timeliness.