ONCE UPON A GENE - EPISODE 037 - Founder of LakiKid: Sensory Tools for Home and Classroom with Jason Hsieh
NORD, the National Organization for Rare Diseases invited me to be a speaker at the 2020 Living Rare, Living Stronger Patient and Family Forum on a breakout panel for caregivers. I'm going to be talking about stress reduction and emotional well being as a caregiver and I'd love for you to join virtually July 18th-19th, 2020.
Today I'm talking to Jason Hsieh, a local father whose son was diagnosed with autism and ADHD. There were limited resources and therapy opportunities in Japan at the time of the diagnosis, so his family moved to Seattle to get the help they needed for their son. He struggled to find affordable, quality products to help with his son's sleep, anxiety and sensory challenges so he created his own brand instead. LakiKid is a product design company and also a community of families helping each other through patient support groups and live Facebook seminars.
EPISODE HIGHLIGHTS
How did your story begin in Japan?
My special needs journey started in 2013 when my oldest son was diagnosed with autism and ADHD while my wife and I were living in Japan. In Japan and most of the Asian countries, the support and therapy you can get for kids on the spectrum or with any type of mental disability is very limited. It has to do with the overall culture and how most communities sync where mental disability is a taboo topic. People don't like to talk about it, they tend to hide it and parents don't like to confront it. It happened to me personally because the first 6 months after the diagnosis, I was in total denial and refused to believe something was wrong with my son because no one else had similar issues in my family. I refused to believe it. I run into a lot of parents, especially dads, that are in this denial phase. We as men like to fix things, but when you have kids with autism or ADHD, you can't fix them. You can help them to become better versions of themselves and that's why we decided to move to the United States in 2015 so we could find better resources and opportunities for our son to be successful.
Did you feel isolated and feel a need to connect with others in your community?
Definitely. I can talk to my relatives, but none of them understand what I'm going through mentally. If you don't have a kid with special needs, you don't know what it's like. My son was non-verbal until he turned 6. We were doing a lot of speech therapy and now we're on the opposite end of the spectrum and he's talking way too much and can't stop talking. I didn't realize that I have mental disability myself. I started doing a lot of research for my son and the more research I was doing, the more I started to realize that I have ADHD myself. I was living with it all this time and didn't know what it was and didn't know how to deal with it.
Can you tell us about your podcast and videocast?
Ask An Autism Mom is done live on Facebook once a week on Thursday at 4pm PT / 7pm ET. We started with a focus on autism, but the more we do, the more we realize how other families and children can benefit from the resources. While the core of the podcast is around autism, we also share information that can be beneficial for parents who have kids with ADHD, sensory processing or down syndrome. Our goal is to inform and empower families so they can help move their kids along in the journey. Sensory Fitness Live is led by an Occupational Therapist who owns a business called Sensory Fitness. He had in person classes for kids before Covid-19, so we've partnered with him to turn his in-person classes into an online format with activities such as sensory diet.
Can you tell us about your company LakiKid?
I started the company in 2017 because I was trying to figure out how to help my son and other families facing the same situation as us. Most of our items are low cost, ranging from $10-$40. I talk to teachers, occupational therapists and also get feedback from other parents on what products we provide. One of the new products we launched last year was a product designed for a nonprofit organization called KultureCity. They have many programs and one of the biggest is called Sensory Inclusive Initiative, available in NBA stadiums, football and baseball arenas, zoos, aquariums and airports. They provide staff training so they are aware of the sensory challenges individuals face when they visit a venue. They also provide sensory bags, free for families to access and use, which includes noise cancelling headphones, fidget toys and a weighted blanket. We designed the weighted blanket for them to use in their program. Lastly, KultureCity helps arenas to build out a sensory room that is a quiet, safe space for families to go to as needed. We have partnered with them and worked alongside them for two years and I really love their mission.
Did you have issues around the school setting that you had to figure out for your son or which inspired any specific piece of your advocacy for making schools more inclusive?
The school system here in the US is so different and each city and district has a different setup. Some have more resources and some have zero resources. We have a really good IEP team in the district we are in and my son's special education teacher is really engaged in what my son is doing in the classroom. Even in the current situation with COVID, they are using Google classrooms, meeting daily with sessions for writing, reading and social skills. Unfortunately, not all families and school districts have the resources to have such a comprehensive program. By talking to other parents, I see that gap in the educational system. The US is ahead of the curve compared to other countries, but there is still a lot of work ahead.
What advice do you have for parents in the beginning of their journey?
Be open minded to a diagnosis and talk to other parents. Join our support group, which is free to join. If you talk to other parents, you will find support because other families are facing similar issues. Each child has individual needs, but we're all sharing a common struggle.
LINKS AND RESOURCES MENTIONED
NORD Living Rare, Living Stronger 2020 Registration
Sensory Fitness Live with Matt Sloan
LakiKid FREE Printable Social Story
Once Upon a Gene - Ep 019 - Neena Nizar and the Jansen's Foundation
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS