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Hope and Creativity, From Crisis

By  Raphael James

 Women commonly call it testosterone, bravado, machismo.  Men properly refer to it as swagger…that “never say die” mentality that is seared into our souls at a very young age. 

“When the going gets tough, the tough get going! Real men don’t cry. MAN UP and “get ‘r done!”  That’s what real men are made of.  Jack Bauer, McGyver, James Bond, and Will Smith are proof that there’s no terrorist, alien, or evil plot we can’t defeat.

So when it comes to autism, where is Superman?

Dr. Kwame Iwegbue, of Charleston, SC was blindsided when his first-born son Dilibe was diagnosed with Autism Spectrum Disorder. “ I didn’t know what to do. I’m a physician, and I didn’t know what was expected of me. I should know more, I should know better I should have a better reaction.  You know, all these things were going through my mind. I was kind of like a deer in headlights. But Florence she moved into things guns blazing. From the very beginning she figured out the appointments, she figured out what needed to be done. Kept up with the doctors, and I could hardly keep up.  ”

Different city, same story. In Detroit, Michigan after noticing strange behaviors from his first-born Ismail, Ihsaan Ali and wife Shaz were told that Ismail had autism. While Ihsaan was still trying to recover from the sting of the diagnosis, Shaz slipped into “warrior mode.”   

“In women it seems the mothers take full control,” said Ali.  “I mean they’re in the driver’s seat, they’re doing the research, they’re sitting around mapping out different doctors, medications and therapies and in the beginnings our heads are just spinning like OK what am I as the father, the male…what is my role?”

Dr. Iwegbue experienced a similar period of despair. Despite all of his training as a physician, there was little information out there that played to the strengths of his medical background.  With his wife taking the lead in Dilibe’s treatment he too began to fade into the background and look for other ways to contribute.

“One of my hobbies is computer programming and I know how to write computer software. So I said, ‘You know what?  She’s been keeping up with all of these logs and books.’  I said, “I’m sure I could do a better job with that and at least make her happy.”

Every free moment Kwame got he spent it writing code for his software surprise. He was designing an app for the iPhone that would help his wife keep track of Dilibe’s appointments, therapies, supplements and treatments.  But Florence had no idea.  What’s more, she began to resent the amount of time that Kwame spent on the computer which led to lots of arguments until…  “One day,  “I went into the bedroom and said this is what I’ve been doing for the past few months. I hope you like it. I hope it makes you feel a little better. She was like, ‘Oh my God!’  She started crying.  It was a really, really moving moment for me. “   

Since then Kwame has made his app iBiomed available on iTunes and online  for free. Florence is energetic and very involved in their new venture.

 In the Motor City, things weren’t going so well for the Ali household.  Money was tight and costs for Ismail’s therapies and treatments were mounting.  Shaz was a woman possessed, determined to fight for Ismail.  Feeling somewhat overwhelmed,  Ihsaan retreated to a place that made more sense for him.

“I felt that I had no one to connect with about having a special needs child let alone knowing someone who had a child with this thing called AUTISM!

For me music became my therapy. Instead of me getting upset and arguing and crying or whatever the emotions I had at the moment. I would just take that emotion and charge it into the music.  “

For hours he would sit making music, learning about the software and finding a release. Hundreds of songs came from these jam sessions. They range in length and genre; from an up tempo Lady Gaga-like sound to R&B. He’d let his mood determine the music.  And his kids became the test crowd.“With the kids I would burn a CD put those songs on the CD and go drive in the car. And they were like my focus group. If they were like bobbing their heads or they were quiet it was like the music got their attention. So if he didn’t respond to it I was like I need to work on it. If they weren’t having like a party in the back seat I would just push it to the side.”

Ihsaan has already experienced some success with his music and has done a few scores for independent film projects.  His next goal is to turn out an album entitled Spectrum: The New Normal. He’s working on creating a non-profit organization to help lessen the financial burden of parents with kids on the spectrum. Especially in states where help is not always available. 

If you believe internet statistics, Ihsaan and Kwame are lucky.  Some studies show that the divorce rate for parents of special needs children is higher than 80-percent. Kwame believes that marriages would work out a lot better if both parties looked beyond the diagnosis.

“Diagnosis is overwhelming…you just feel  helpless. In addition to trying to solve that problem go out and find something else that they can do as a family. It’ll really help take a lot of the stress off.”

Ihsaan says Shaz now supports his music and his mission. He says he’s fortunate to have rediscovered his childhood dream even though it came through his child’s diagnosis. “I’ve come to realize that hope and creativity can come from crisis.”

Jenny McCarthy, Holly Robinson Peete, Tisha Campbell-Martin, and many other women seem to be on the front lines blazing trails in the fight against autism.  They are armed with knowledge, passion and dogged determination as they advocate for their children.

Standing with them are men…super men who love their children very much. Proud warriors, who are learning a different way of fighting.

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• Here’s To The Fathers (onaisle9.wordpress.com)