Plans for my 28 year old daughter's "routine" dental visit begin two months ahead of time. I make the appointment and schedule time off from work. Then, I call her psychiatrist to request medication for the appointment.
Anxiety starts to permeate our family as the day of the dental appointment slowly approaches.
Breathe Donna, breathe.
The day of the appointment is finally here. I dress "appropriately" for the event, call her day program and explain the early pick-up and cancel her transportation home from the day program.
We pick up Lauren at her day program around 11:00. She eats lunch and takes her medication in the car. Tom and I skip lunch and eat a few carrots and some string cheese. It is a two hour long drive to the special needs dental clinic in Miami.
A traffic jam on Interstate 95 brings us to a complete stop. From the back seat, Lauren begins to act out- banging on the car windows, kicking the front seat and pulling Tom's hair. Finally, traffic starts to move and calm is restored.
We arrive in Miami at last. We have to walk into the building through a certain door to avoid the soda and snack machines. After a trip to the bathroom, we check in at the desk. Then, we wait.....today not so long.....about 30 minutes.
Tom is getting more and more anxious as the minutes tick away. He is pacing. I sit showing Lauren pictures on my phone.
Breathe Donna, breathe.
They finally call Lauren's name and she refuses to get off her seat. It takes 3 people to cajole her into moving into the clinic area. There awaits a papoose positioned on the exam table. Lauren begins to act out...she pulls my hair and rips my shirt (thankfully I dressed appropriately for the event). She throws her glasses on the floor (thankfully the expensive, unbreakable kind).
A female dentist is wearing a head scarf. Lauren wants to take the head scarf off her. In the midst of a behavioral outburst, how do you explain to a person with autism that some women wear head scarfs?
Four people lift Lauren onto the table and the papoose is secured. Lauren immediately calms down. I think she is comforted by being inside the papoose. She screams occasionally but "within normal limits". She manages to wiggle out one leg and her sneakers are tossed on the floor. She is stronger than all of us. In order to get x-rays and a cleaning done, it took two dentists, one assistant and two parents.
Breathe Donna, breathe.
High fives, hugs and a promised Diet Coke conclude this visit. No cavities...see you in 6 months.
We got back in the car and drove the two-hour ride home in 5:00 p.m. traffic.
Breathe Donna, breathe.
Parents are raising significantly disabled children, often with little or no support. Many parents continue to work and juggle job-related responsibilities along with the care of their child. All of the other life issues impact these families as well (siblings, illness, aging parents, divorce, school, therapy and medical appointments, meetings with service providers, baseball games, battles with insurance companies, grocery shopping, cooking, cleaning, holidays, vacations and financial challenges).
As we see more and more children and adults diagnosed on the autism spectrum, what can we do to help families more? Are nurses accommodated for having to meet the needs of their disabled children? Do colleagues reach out and offer to help these nurses?
Have we lost nurses due to the challenges of raising children with autism spectrum disorders and other disabilities? If so, would some of them return to practice if workplaces were more supportive?
Meeting the needs of people with autism and their families is a large scale Olympic event. We need everyone to raise a flag.
Love to hear your thoughts, suggestions or experiences.
Below you will find some resources related to dental care for people with autism and related disabilities.
American Academy of Developmental Medicine and Dentistry
American Academy of Developmental Medicine and Dentistry
National Institute of Dental and Craniofacial Research
Practical Oral Care for People With Autism
