Parenting with disabilities takes patience, resilience

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By Melissa Ford

Coach - Personal & Business

In anticipation of the ReelAbilities Chicago Disabilities Film Festival, running from April 25-29 at the Lake Theatre, I spoke with River Forest couple Barb Smith and Tom Hazinski about their remarkable efforts parenting their third child, Michael, a 22-year-old who lives with multiple disabilities, both mental and physical. 

“Michael had no overall diagnosis,” Smith explains. “He was born blue and had not been swallowing in utero although we had no idea until he was born. He was able to live with the help of a trach and being fed by G-tube for the first three years of his life. But the good news is that he is funny and sweet, and he has an amazing memory for facts about nature, history and music. He has maybe a thousand books, and he sight-reads and memorizes what is read to him.” 

Because of Michael’s condition, Smith and Hazinski settled in River Forest to be close to Michael’s primary care nurse from Children’s Hospital. “She is really involved with him, and at the time there was no special education program in the River Forest schools,” Smith recalls. “Instead, we linked Michael up with Oak Park, busing him to Holmes and then Irving School. We did not have any family nearby for support, but we did have a community.” 

District 90 eventually offered programs for those with serious developmental disabilities, and Michael attended River Forest schools, then OPRF High School. As Michael grew older, the Hazinskis had an opportunity to enroll him in a day program at Aspire, transferring him from OPRF High School. He has been a participant with Opportunity Knocks since its inception, and Community Support Services and Seguin have provided other services for Michael, including respite care, which, for the Hazinskis, means a Friday night out.

The support Michael receives today is very different from the services available 20 years ago. 

“Michael should have died many times,” Smith says, “ambulances, Code Blue, CPR performed by my husband, Tom, on numerous occasions. Today, medicine has improved so much more, and more people are living with disabilities. And children are being raised in their homes rather than institutionalized. Services have increased as well as community awareness. Everybody knows Michael; the community has been wonderful!” 

 “When I was in school,” Hazinski adds, “you never saw kids with disabilities. It was surprising to see them and people reacted very badly. Today, integrating kids with disabilities into the school system has had a good effect on the other kids in terms of their acceptance and understanding of disabilities. Best Buddies at OPRF High School helps kids with disabilities have one-on-one friendships [with other students]. These kids have been terrific in their support of Michael.” 

And community support continues to have a powerful impact on him and his parents. “I still cry when I think about it,” Smith says. “Best Buddies rented a limousine and Michael got dressed up, gave his date a flower, went to the dance and then they had this wonderful limousine drive downtown. Tom and I sat at home waiting up for Michael. He never leaves our side so we were kind of apprehensive, but for Michael, he was just in heaven! He still talks about it today.” 

Both Smith and Hazinski agree that parenting a child with disabilities can be hard on a marriage, yet they have found their way through, growing closer together as a resilient, appreciative and loving couple. 

“There are financial stresses, but I think what can be overwhelming is the guilt, blame and a lot of exhaustion,” Hazinski observes. 

“That’s true,” adds Smith, “but Tom is wonderful! He developed the skills of a doctor, saving Michael’s life all the time. Tom even created a special room with poles and wire and tubes because he was determined to get Michael to sit up. Initially, I walked on eggshells, but Tom was great with Michael. Finally, at 3 years old, Michael sat up and we got rid of the trach and then he started to walk with a walker,” she recalls.  

Being Michael’s parents has enriched Smith’s and Hazinski’s lives in ways they never could have predicted. “One of things that benefited me was that most parents have high expectations for their children. There was a time when we didn’t know Michael’s prognosis and as things unfolded, we discovered it wasn’t as bad as our worst nightmare but nowhere near our dreams,” Hazinski says. “We adjusted our expectations around what is really essential — we only needed for our kids to lead healthy, happy lives. We backed off on our kids having to be perfect. It’s not about being the best; it’s about making the best of your situation.”

Moving through their day smoothly, Smith and Hazinski tend to Michael’s day-to-day needs. “You have to be very organized, and we discovered that we work together well. We had to. As a parent you have to have more confidence in your child then they have in themselves. That’s when they will get it, whether it’s sitting up, walking, whatever,” adds Hazinski.

Smith and Hazinski want other families to know there’s hope and support. Community Support Services provides overall information on resources and the local Oak Park Township Mental Health Board has funded a grant for Seguin to educate parents on their planning needs.

“It is never going to be what you imagined,” says Hazinski. “It will be different, but with the help of others, you find a way.”

Contact:
Email: melissa@empoweredcoachingsolutions.com

Reader Comments

2 Comments - Add Your Comment

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Colleen Goggin Krupa  

Posted: April 19th, 2012 12:38 PM

As someone that was LUCKY enough to work with Michael as his aide at Roosevelt Middle School, I can say that some of my fondest memories were with working with him and seeing his smile!! What a great family he comes from. I think of Michael often and can hardly believe he's 22!

Phil Carmody from Oak Park  

Posted: April 19th, 2012 11:36 AM

Barb and Tom, You are amazing parents. Thank you for sharing your story and thank you for sharing Michael with us. He is a fine young lad!

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