Why I Do What I Do

I am a scientist, investor and proud father of a child with autism

I am working from home, or rather trying to. My daughter is back from school; today is a half day. She is sitting next to me, trying to get my attention. “I am grumpy and tired” she tells me. She pokes me until I respond then gives me an enormous smile. The phone rings and I answer it – a work colleague to go over data on a new cancer drug. Within 5 minutes my daughter is agitated and shouting. She doesn’t like daddy talking on the phone. I sigh inwardly and end the call. This work can be reviewed later and I talk to my daughter about the show she is watching on her ipad.

Remote learning this week. This is always a challenge. Give my daughter an ipad – she is happy and will watch YouTube endlessly. Use it for math or any school subject then there is the horror of transition. The yelling and self injurious behaviours are distressing to behold. We sit in front of the computer for a zoom class – you can’t leave her on her own as she will leave or more likely quit zoom and fire up YouTube or Netflix.

We are in a zoom reading class. It is Friday; the 5th day of remote learning. My daughter flops on the floor – she has had enough. The teacher tells her to sit on her chair. If she sits on her chair and says “I’m done” she can end the class. My daughter refuses. After 30 minutes of failed negotiation the teacher gives up. I make the call – no more school today. We go for a walk.

5 It is Saturday. We have had a great morning at Sportsbuddies. 4 Volunteers from the high school help children with special needs play sports. 3 It is truly wonderful and my daughter loves it. She is calm and joyful. We head home. 2 She asks for Lucky Charms. We don’t have any and I get this feeling of dread. I say “let’s go buy some”. 1 Meltdown. She throws herself to the floor and bangs her head off the floorboards whilst biting her hands. I pick her up and carry her to the car. Once inside she becomes calm. I decide to drive her to beach. We walk for a mile over the sand looking out at the Long Island Sound. She turns to me and says “thanks for taking me to the beach”. I smile.

Each autism journey in unique – they say if you’ve met someone with autism you’ve met some ONE with autism. There have been a number of tv shows showcasing individuals with autism like Atypical and the Good Doctor. My daughter’s struggles with autism are nothing like those presented on these TV shows. Our challenges and angst are very different. That’s why as an investor/scientist I am always on the lookout for technologies that can have impact and make a difference so was thrilled to come across Mindnest. The company is developing digital therapeutics that can help parents deal with their child’s behavioural issues. It allows you access to the best practices of the Yale Child Study Center; it’s like having access to a Yale expert on your phone. This is why I do what I do.

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