Don’t underestimate children with special needs

Published 9:00 am Saturday, September 16, 2017

By Joan Graves

Considering the number of times my son DJ has had to go to the doctor, it would be understandable if the child screamed his head off at the first sign of a health care facility.

But DJ, like most special needs children, has become accustomed to what the rest of us dread.

I would estimate DJ’s hospitalizations to hover around the 100-times mark.

It wasn’t uncommon for him to be in the hospital a week, come home for a couple of days and be readmitted. Now, it’s a different story.   

DJ has not been in the hospital for two years. So, when he had to have surgery to remove an ear tube, we weren’t certain what to expect.

One thing is for sure, we didn’t expect what we got.

DJ pointed at everything. Because he’s nonverbal, pointing and jabbering at something is his way of asking questions.

He was fine with everything except the IV pump. He pointed to that repeatedly. When the nurse came to start the IV, DJ pointed at the pump then at his hand. It was unusual, but I thought he was just saying he knew the IV would go in his arm. But when the nurse put a band on his arm, he shook his head no and pointed to his hand again; I understood.

He was telling the nurse where to put the IV. That had never happened before. She stuck that needle in his hand and he never so much as flinched.

After the IV was in, the nurse explained anesthesia would be in next to give him some medicine to relax him. The nurse showed him where the medicine would go in and he nodded his acceptance.

As soon as a man came in and introduced himself as the anesthesiologist, DJ pulled at the IV tubing and indicated the port for medication.

At this point, he was getting a little anxious. He wasn’t crying or fussing, but he was a little nervous.

The entire time the anesthesiologist talked to us, DJ pointed to the port for the medication. At last, the doctor inserted the needle and pushed the medicine through.

But when he took the IV bag off the pump, DJ grabbed his hand then pointed to the tubing. He was questioning whether the medicine had time to go in.

The doctor asked him if he felt it in his hand where the IV was. DJ got really still for a minute then all at once grinned, nodded and pointing to his hand. He felt the medicine.

It was a unique experience, but I’ve said all along DJ comprehends more than any of us grasp.

But it was the first time DJ participated in his health care.

He could make himself understood by strangers without ever saying a word. The surgery staff understood DJ.

They admitted to reviewing his medical history and not knowing what to expect. But DJ taught them to never  underestimate a special needs child. 

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.