Special children need special docs

Published 11:07 am Wednesday, June 7, 2017

W hen a child has compromised health issues, is nonverbal or has limited communication skills it’s imperative to have a physician you can trust.

We are blessed with a full staff of doctors at Pediatric and Adolescents Associates (PAA) who care about DJ. Yet, there is only one we refer to as our DJ guru. It was God-arranged events that brought us together.

We had taken our other boys to PAA, so naturally, they would doctor DJ. On his first checkup after birth, we landed on Dr. Lewis’ schedule.

As he tells it, DJ poked a translucent hand through his cover and Dr. Lewis knew he needed to be hospitalized.

I was shocked. We had just gotten home, and he wanted to send us back? Making matters worse was Lewis felt DJ needed specialized care at a children’s hospital where he couldn’t doctor.

We would be at the mercy of a doctor we never met praying she would listen to Lewis’s recommendations.

DJ needed to be hospitalized, but he did not need the outrageous shenanigans of the doctor in charge. I had unkind words for her and determined they would be better received if shouted and sprinkled with veiled threats. OK, so the threats weren’t that veiled. Let’s just say it wasn’t my finest hour.

I called Lewis, who got DJ the care he needed.

Once released from the hospital, your PAA appointment must be with the doctor who admitted you. Since Lewis wasn’t overly-thrilled with DJ’s progress, he asked us to return in a week and see him. After that, DJ began going in the hospital repeatedly. We saw other doctors, but for one reason or another we always wound up with Lewis.

DJ’s sicknesses required immediate action. He would rapidly decline, so there was no time to figure out what to do. Steve and I decided although all PAA doctors were good, we should put one in charge of DJ and see only him.

Since Lewis had the most DJ experience, he was our guy. He agreed and put a basic plan in place. That allowed doctors unfamiliar with DJ to be immediately up to speed on him and us to have a concrete course of action.

It was a decision that saved our baby’s life.

In the years since, a lot has changed. DJ is healthier and has a unique bond with Lewis. DJ loves to show Lewis the latest skill he’s learned and Lewis has an indescribable commitment to DJ.

Last week, we saw Lewis for behavioral issues DJ developed. Hearing about self-harming, extreme meltdowns and anxiety issues broke Lewis’s heart a little. You could see it all over his face.

As for DJ, when we remind him that we are following Lewis’s advice, he nods his head and tries his best for his doctor who is more like his friend.

Every parent of a special-needs child needs a doctor like Lewis. We need to know the doctor is invested in our specific child, not just his patient.

After all, very special kids need very special doctors.

Joan Graves is a mother to five boys and an advocate and activist for children with special needs and their families. For more, go to www.thejoanzone.com.