Should autism parenting be an Olympic event? A trip to the dentist

An autism mom/warrior shares the "lived experience" of taking her daughter diagnosed with autism to the dentist. Details include the preparation, car ride, and actual examination. Questions follow regarding how we can support similarly situated patients, nurses, and their families. Resources related to dental health care for people with disabilities are also included.

Should autism parenting be an Olympic event? A trip to the dentist

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

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Donna Maheady

About Donna Maheady

Pediatrics is my love and passion. I am a Pediatric Nurse Practitioner and have been practicing and teaching nursing for over 35 years. I am the founder of a nonprofit organization for nurses with disabilities, www.ExceptionalNurse.com, author of three books and numerous articles about nurses and nursing students with disabilities as well as other topics. In addition, I am an autism mom/warrior and dog lover!

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Specializes in Complex pedi to LTC/SA & now a manager.

My son is thirteen. The experiences of the past 3 weeks do not have me looking forward to the future. I swear if one more person tells me "but he looks so normal" or "but he likes ____ he can't be on the autism spectrum" I may lose my mind.

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My son will soon be 20. We gave up on the dentist. It would take more drugs to get me through the visit than him (just kidding, I think). He requires general anesthesia for dental cleanings, his special needs dentist left, and insurance won't pay for sedation/anesthesia. We practice good dental hygiene at home and examine teeth and so far, so good.

Like you JustBeachy, the comments about our kids looking typical is not helpful. It's actually scary because you realize that when they are out in public having a meltdown as a teen, people don't understand they have special needs.

The challenges can be overwhelming at times. Most of us could write books about our lives that people would swear were made up. I've learned to be a strong advocate for my son, my patients, and for others in my community.

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Specializes in Pediatrics, developmental disabilities.

I feel your pain. What can we do? Wear banners? Only kidding....but I struggle with the answer!

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Specializes in Pediatrics, developmental disabilities.

You are so right!! We could write books...but who has time...and who would read the books? Autism parents don't have time to read....we are way too busy getting through the next day, meal, car ride, shower or appointment.

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Life's unchosen challenges should be shared more evenly.

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I continually heard the "but he is not a behavioral issue" as to why my son was largely unsupported for a number of years. But behaviors such as sensory overload leading to total zone outs/disconnects, declining to be "left" anywhere (school, Sunday school, birthday parties) to being completely behind academically than peers.....and the militant routine that could not be strayed from...and being completely mute until 3...then not able to carry conversation until 7 or 8...and even now word searching...and still hearing I was a "helicopter parent" who was attempting to make my child "have" an issue that was not there, and was asked "what does a 'definate' diagnosis do for YOU, Jade?"

The IEP process was a nightmare, I thought how do younger parents do this (I have been a parent since I was 21, and I am WAY older than that now, so this was not my first)...

There is a great deal of emphasis put on the fund raising aspects of autism. And funds are important, for sure. However, to create teams of people from different disciplines that help parents navigate (and not a highly paid "advocate" which is a story for another thread) could be key in assisting. If there is not a group in your town, think about starting one.

The good news is that I have older kids, both of which are in the social arena of things--and through some of the more recent social work/teaching area of things, newer college grads are very informed, equally as interested and invested, and I believe bring fresh ideas and motivation to help kids with autism.

I do not know if there is a website dedicated to a discussion group--but there should be. Not that we all have time to be surfing the net, but as much in the way of pointers, interventions, what has worked for others....all good things.

Not everyone can afford advocates, specialists, private schooling....so as much good advice that is made available to as many people as possible is a good thing.

Autism doesn't "speak" it screams.

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Specializes in Pediatrics, developmental disabilities.

Thank you so much for sharing your "lived experience". Autism screams!!! I Love it....!

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Specializes in Pediatrics, developmental disabilities.

What a wonderful thing to say...thank you.

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This couldn't have come at a better time. My 3 year old was diagnosed earlier this week. I fought with his pediatrician for a year before he would point me in the right direction I needed to go. It was always "Let's wait and see how he is in 6 months."

I took him to the dentist for the first time 4 months ago. Brushing his teeth is a nightmare. It's amazing how strong he can clamp down. They made me sit in the chair and wrap my arms around him and hold his legs in mine while they did the exam and cleaned his teeth. I don't know who was more traumatized, him or I...

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Specializes in Pediatrics, developmental disabilities.

Been there and done that!

I heard the same thing...you are a nurse...you expect too much.

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Specializes in Early Intervention, Nsg. Education.

Practice. Lots of opportunities to practice. We have a dentist who specializes in kids with special needs, and we started bringing DS to "practice" once a week. The dental practice offered "open chair" hours twice a week, which was a godsend. Now, DS is 17 and..........drumroll..........is cooperative enough to have orthodontic work done. If someone told me 15 years ago that he'd be sitting quietly in a dentist's chair, letting people touch his teeth, I would have laughed at them and offered the dentist a pair of welding gloves to wear so she wouldn't lose a finger.

We tried the same tactic with lab draws. DS has a neuromuscular disease and panhypopituitarism and has labs drawn every 3-4 weeks at least. "Practicing" a trip to the satellite lab station? Epic failure. When he was little, we could get together and hold him down for labs and immunizations. Now he's 6 inches taller and 40lbs heavier than me. Ativan is our friend. 😏

There's a national program that offers airport TSA procedures and airplane boarding/disembarking "dry runs" for kids and adults with ASD's. The program is called "The Arc's Wings for Autism." Check the website to find scheduled rehearsals at an airport near you: The Arc | Wings for Autism®

Mercury'sMom

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