How do you parent a child with autism? Here's what I've learned as mom of my beautiful son.
My son was born with a perfect Apgar score. I had a stressful pregnancy and an emergency cesarean section, but he was so sweet, happy and did everything earlier than expected for his first 18 months.
He was in a national American Express campaign for my former company, as the smiling baby star. His name, Zane, means "gift from god" and also "the beautiful one." We thought he was going to be the most successful person in the world, with his dad’s looks and my perseverance and intellect. The kid was just universally perfect.
Then in what felt like an instant, that changed. Zane's words stopped coming, and he lost skills like dancing and pointing. He started doing things repetitively and seemed lost to us as we looked for answers.
His pediatrician initially dismissed my concerns about Zane's autism presentation, but I pushed to see a neurologist. Something must have gone wrong, we thought. We can fix this, we thought. And for several years, we fought and fought through a range of therapies and interventions against a neurodevelopmental tide that had turned.
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Zane is now 13. He remains astoundingly beautiful, but he lives in a body that doesn’t work the same way ours do. He's bright and intelligent and in constant sensory overload. His brain moves at a rapid speed that makes it hard for him to focus, learn or express what he’s thinking.
Parenting a child with autism who is nonverbal is not easy, but it is also not the tragedy we initially thought. He has taught us how to become better, more intuitive humans.
It’s a game changer, for sure, and given the Centers for Disease Control and Prevention's statistic of 1 in 36 children being diagnosed with autism, many parents will need to learn this game from families who have been playing a little longer.
Sensitive souls like Zane deserve love, compassion and patience. He can be anxious and erratic, can bolt or run away. There are sometimes violent tantrums, loud sounds or self injurious behaviors like picking his skin or hitting his head. He requires a lot of support and constant supervision.
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My son is resilient and determined, and we've seen progress
Zane is, however, always desperate to connect and be understood. I see his resilience and determination daily – and we do see progress. He started talking when he was 8 and is saying more and more. The other day he said, “I went to the pool!”
Seeing him smile or accomplish anything fills with me a joy better than if he were going to Harvard.
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Being Zane's mom is immensely rewarding. It has also, at times, felt heartbreaking and hard – like parenting any child. As a mother eager to share some of the wisdom I've acquired on this journey with Zane, here are insights that have helped my family:
Tips for parenting a child with autism
?Obsess over communication. If there is one thing I could have changed to help Zane sooner, it was to focus on speech therapy the moment we saw something concerning. When a child doesn’t have the tools to communicate big feelings, it makes everything harder. Focus on language, even talking to baby while you are pregnant.
?Connectedness counts. Hold, massage, cuddle and create a safe space so your child is happy and connected to you. Look into their eyes and be engaged. If you are feeling disconnected and sad, ask for help. Playing and interacting with you keeps you connected. Roll a ball back and forth. Play a game where you take turns. Toys and electronics can be distractions, but playing and connecting is real neuroscience at work.
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?Model flexibility. Find ways to try new things, create happy surprises or change a routine from time to time. Flexibility is a phenomenal skill for every child to develop early and often. It allows them to be resilient, self soothe and handle life.
?Call Birth to Three. This is a national service to help evaluate our babies’ developmental needs and provide services through the age of 3. It’s America’s best kept secret. If you have any concerns, do not wait to get this going.
?Find a developmental pediatrician. There is no stigma if your baby needs extra support. You are entitled to services from your school district and to therapy covered by your health insurance. The earlier you start, the potential for improvement increases.
Success means being together and helping others
?Rethink what success means to you. I have grown to concern myself less with what others think. It has made it easier to accept the things Zane does as being unique to him. He won’t ever fit a mold. Frankly neither do I, nor do I want to. Success in our family has shifted from “winning” to being present on the ride together. That was hard for me. I grew up with very little as an immigrant, always wanting to be “successful," only to get there and see that goal become less important than the health of my family and being able to help others.
?Calm the nervous system of the entire family. I’ve found that my son picks up on our energy, so we try to keep our home as sensory-friendly as possible with weighted blankets, soothing sounds, calming scents, warm baths, noise cancelling headphones for loud spaces, deep breathing and hyper-natural anything that goes in or on his body. Whatever works to calm you down will probably help your child. It’s why we design the products we do at Healthybaby.
?Take it easy on yourself. Parenting is not easy, autism or any developmental challenge will test you and, as cliche as it might sound, it’s a marathon not a sprint. Stay strong for your family.
?Connect with community. The parents you meet of neurodiverse children will have a knowing empathy. Connect with them. Find someone whose child is maybe a few years older and kind of like your child. That’s not easy, because every child is unique, but having a guide through the dark times is worth looking for. An old acquaintance of mine who I recently reconnected with also has a son with autism a little older, and one email from her with some advice and what to expect during something like puberty just felt so helpful.
?Hope is your friend. Don’t lose this. When we see progress, we celebrate it big. There are new therapies, treatments and discoveries on the horizon.
It can feel like neurological challenges are so complex to treat, but I believe science will prevail.
Shazi Visram is founder of Healthybaby.
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This article originally appeared on USA TODAY: My son was diagnosed with autism. Here's what I've learned as his mom.
