Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Friday, November 18, 2011

Sweet Tooth

Nicholas and I have returned from the dentist office.

Just another one of our many appointments this month.

Children diagnosed with PWS are at a high risk for developing cavities due to a propensity for thick saliva and xerostomia. Xero what did you say??Xerostomia. Pronounced....zero-stow-me-ah

Xerostomia is just a fancy word for decreased saliva flow, or "cotton mouth" if you prefer.

Cool word though, huh?

I think I will try to use it during our next IEP meeting.

Anyway, because of these issues, we try to visit with the dentist every four months for a cleaning and exam. In the past, this has never been easy for Nicholas. Dental visits cause him extreme anxiety. The bright lights. The moving chair. The scary tools in his mouth. Sitting still. All, are issues enough to cause Nicholas to scream. No screech is a better word.

"Muuuuummmmmmyyyyy,"he will scream, kicking and flailing while the frightened dental technician usually bolts from the room.

That is until we found Dr. Lindi.

Dr. Lindi Ezekowitz is a dentist who specializes in pediatric care. We were referred to her by a local mother who does not have children diagnosed with special needs. Her kids just hate the dentist. So she referred us to Dr Lindi and explained the good doctor's amazing techniques for calming her tiny trembling tots.

The last dentist we visited suggested we go into Boston and have Nicholas "put under" so we could clean his teeth. But the thoughts of driving into Boston and putting Nicholas "out" is not something I want to add to our already hectic schedule.

I have been using some visual picture cards at home with Nicholas to help him understand and prepare better for our upcoming visits. And while these picture cues have worked well to help calm his anxiety before our appointment, it is Dr Lindi who has been like a life saver to us. She uses a special darkened room with a comfortable kid-sized dental chair that looks up at the ceiling where a large flat screen tv has been installed and plays a variety of kid DVD's. A brilliant distraction device.

She is speaks softly and moves slowly, showing the petrified patient every tool she is about to use.

"Nicholas, this is what we are going to use to brush your teeth." she says and uses the rotating brush on his hand, stroking him gently.

"See, doesn't that feel nice?" she asks him.

"Noooo, I don't think so," Nicholas will usually say. And without engaging in a power struggle she simply says OK,  and uses a delicate non motorized tooth brush instead.

For many years this is how Dr Lindi has worked with Nicholas.

She has worked hard to develop a comfortable routine for him so that every time he visits, he knows what to expect.

This week, however, was different as Nicholas decided that he was going to be brave.

Dr Lindi pulled out the scary metal scraper and once again explained what she was doing...

"Nicholas, I am going to remove some of the food that's stuck between your teeth."

"OK," Nicholas said agreeably.

For 20 minutes Dr Lindi was able to remove the plaque from Nicholas's teeth as Lightening McQueen roared loudly across the ceiling.

After she scraped, she showed Nicholas the motorized tooth brush...pushing her luck since he seemed so accommodating.

"Here's what I am going to use to brush your teeth."

"OK," was Nick's simple answer.

Finally, she showed him the fluoride treatment she would use to "paint" on his teeth. And once again came the compliant reply,

"OK."

The appointment was a brilliant success and Dr Lindi smiles brightly. She is as happy as I am that she finally tamed her toughest of tots. She has a kind heart and gentle spirit and I am reminded once again that we are surrounded in our life by many special physicians. I am comforted by these healers who accompany and guide us through the rough medical waters of caring for Nicholas.

"Nicholas, she says, you did a fantastic job!"

"I did?" he asks.

"Yes, you did!" She answers and places her hand on his shoulder. "Are you going to do this good next time you come to visit me?" she asks.

He gives her a big hug, looks up at her face and says,

"I AM!"