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I'm a successful founder and CEO. During social distancing, I'm caring for my child with autism - here are my 5 best tips for fellow parents during Autism Awareness Month.

Apr 3, 2020, 03:45 IST
  • Shazi Visram is founder and CEO of Happy Family Brands, an organic baby and toddler food company, and the mother of a child with autism.
  • Visram launched Healthynest, a dedicated platform and resource for expecting and new parents.
  • One of the most important things for parents who care for children with autism is a strong support network. Visram also suggests establishing a routine at home, reaching out to professionals, and intentionally practicing self-care.
  • Visit Business Insider's homepage for more stories.

If you're a parent of a child with autism, this month is your month.

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I'm an entrepreneur, investor, and philanthropist, and I sold a majority stake of my company to Group Danone. I was also acknowledged by former President Barack Obama as "not only an outstanding businesswoman, but also a leader that all of us can emulate."

I'm also the mother of two spectacular and extremely different children. Zane, my oldest, was diagnosed with autism at age 2 after a seemingly typical first two years. Zane is now 10, and we have navigated life with his challenging special needs that come with other health challenges. Our second child, Asha, 3, is typically developing, healthy, connected, and uniquely empathetic.

Last week, the CDC released stunning new data that showed that the prevalence of autism grew by nearly 10% - now, 1 in 54 children has been identified with autism spectrum disorder (ASD). 1 in 6 children will receive some developmental diagnosis in today's world, and it's my life's work to help change that trajectory.

These past few weeks have been a roller coaster - emotionally, physically and intellectually. Like all kids, Zane relies on the predictability of routine. Without his normal routine he has panic attacks, and recently there have been many nights where I hold him in my arms while he sobs. He doesn't understand why he's being denied his normal schedule and why he can't see his therapists.

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My heart goes out to all families who are quarantined and trying to do their best during these extraordinary times. But if you're a parent of a child with autism at home without support, it is another game completely. Many of us go from having a team of 1:1 hands-on therapists and professionals (provided to us by our public schools under the IDEA act), to an isolated place where we have to rely on ourselves to be the sole caregiver.

I have quickly learned the importance of having a support network. While I know I'm blessed with a helpful husband and ample resources, the basic tenets of how to move forward apply to many of us.

I'm hopeful that these suggestions might help other parents in the same situation better navigate. By the same token, I'll take a moment to celebrate each of you on World Autism Awareness Day, because you have already been doing this.

1. Establish a routine with your child that mimics the routine at school - use your visual schedule to prepare them for the day

Since anxiety is at the heart of many autism spectrum disorders, putting a routine in place and relying on the visual schedule around who will be there for each segment of the day really helps us.

Offer options to your child every night before bed and show them the schedule every morning with an image of who will feed them lunch, who will take them out for a walk and so on, even if it's you the whole day. Share these tasks with anyone that will assist.

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My husband, Joe has come up with so many things to do to keep Zane occupied and have new fun options. Water balloons, soothing massages and walks outside have helped lessen Zane's anxiety and find a way to cope, day by day.

In our house for dinner, we pretend to be in a different restaurant every night based on Zane's limited verbal skills - he knows food, so we use it to encourage language! Joe even got a deal on a jumpy house rental now in my living room and we have increased physical exercise for Zane by almost double as he is generally hyperactive. That way, Zane is that much more tired and sleeps better.

We also have a stationary pedaler and have increased the resistance, and we have asked our doctor about additional support for sleep like melatonin. Anything that can bring relief is considered and welcome.

2. Talk to another parent who is going through this

While there are many resources available, organizations like the The Autism Community in Action (TACAnow.org) can connect you with trained, supported, qualified mentors to help guide you on your journey as well as with new COVID-19 adapted webinars and opportunities to connect.

Sharing your experience with others can help alleviate the sense of helplessness that you may feel, providing a sympathetic ear and sounding board. Lisa Ackerman, the founder of TACA, is a good family friend. On the day we got our diagnosis, her words resonated deeply: "It's not game over, it's game on." The organization exists to pair mentors to families. Use it!

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3. Reach out to a professional to seek support

While time and resources have never been more precious, there are ways to access free professional counseling and advice. Healthynest is my new venture and the culmination of my life's work. It's a platform for parents to navigate and normalize the conversation around developmental health. We offer real-time personal coaching and access to licensed psychologists with expertise in pediatric neuropsychology and mind-body health. You can get support to protect your wellbeing, manage your way through this crisis and improve mindfulness as things get stressful at home.

4. Focus on other resources created for children like ours

Resources, sites, articles and tips created for parents of typical children will just drive you mad. My Zane is not exactly wired for e-learning on Zoom! It wasn't always this way, but today there are many tailor-made resources out there, such as TACAnow.org, childmind.org, and understood.org.

By sticking to content and advice that is customized to our own unique special circumstances, you will feel more connected, informed and empowered.

5. Take care of yourself

Children with autism may be hypersensitive, and if like mine, can sense your anxiety and fear. Now, more than ever, it is important to practice self-care for the sake of your child.

I used to scoff at the analogy of the oxygen mask for myself before my children, but I now realize practicing self-care gives our children more solid rocks to turn to for stability.

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Take turns with your partner or find a way to put on headphones and listen to music, take a walk around the block, take a momentary time out in the next room, steal 10 minutes and take a free exercise or meditation class online. And most importantly, have empathy for yourself. You are already a superhero.

As the nation gears up for the fight against COVID-19, parents nationwide are facing their own struggles. While social distancing has ensured that we've never been more disconnected, I've seen many examples over the past couple of weeks that indicate that the upside of all of this might be that we can actually create closer family connections and increase our capacity to share love.

If you're a parent of a child with autism, these connections don't come easy, but like your child's smile, when it comes out, it parts the stormy skies and will make everything shine brighter.

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