In our shoes as a family with special needs

Barbara Murphy knows what it’s like to endure the stares from people who just don’t get what life with a child with special needs is like.

A foster parent for years to daughter Sifeta, she was on an upward trajectory at her job at Xerox. But when her son, John, “came thrashing into the world,” that all changed, she says. John was born with a right sided Congenital Diaphragmatic Hernia and ended up in the hospital for 13 months. She quit her job to be with him every day.

When he finally came home, he was on a ventilator and in and out of the hospital. He developed epilepsy and was diagnosed with autism at 9.

These days Facebook reminds her of those early times. “When memories pop up, I think, oh that was a hard day, but he was so beautiful, I shared the photo.”

She’s felt the isolation and people’s stares over the years. In restaurants, she’s had people at nearby tables leave because of John, now 12.

“It was hard being in public with him because people judged us. Everyone thinks they can give their opinion on how to parent,” she says. On first glance, you wouldn’t spot his special needs.

She remembers one “very hard day” wishing for a place to go where she didn’t have to apologize for her son’s behavior. She sat in her own business, Josi’s Frozen Yogurt, for hours that day. Then an idea came to her. She created ‘No Apology Sundays’ to build a welcoming space for families with special needs. The third Sunday of every month, from 1-3 p.m., the lights and music go down and families can enjoy a day out with frozen yogurt, more than 50 toppings to choose from, board games, a kids’ corner and even a skeleton named Richard. Best of all, no apologies.

She also now offers internships for kids at Vaughn Occupational High School for students with special needs to practice work skills, something she hopes catches on with other businesses. Find Josi’s at 4032 N. Milwaukee Ave., in Chicago’s Portage Park neighborhood.

In Mom’s Words

Best advice ever received: Be kind to yourself. As John’s mother, I have saved his life, given CPR and stood by his bedside for hours. But I give myself a hard time for sleeping in, working late, not getting the housework done or not keeping in touch with friends. Learn to be as kind to ourselves as we are to others.

Worst day: The first seizure John had. He was 2 and considered “failure to thrive.” His little body seized for more than eight hours. It was the worst night of our lives watching him go through that, watching the hospital staff circle around him trying to save him. I still have nightmares; I call it ‘medical PTSD.’

Advice for other parents: Build your tribe!! You are going to lose friends and meet some new amazing friends. Build your tribe of special needs parents to talk to, support and network with. We cannot do this alone. You are not alone!

Biggest hope for the future: That my son will be taken care of when I am gone. We are in the process of starting a Special Needs Trust and Will to ensure our child will be taken care of if something happens to my husband or me. It’s a hard process to go through, but in the end, I hope it gives us a little peace of mind.

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