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.
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
I had to fight with my child's doctor as well to get a speech evaluation and autism evaluation. It was always let's see next time or he is probably just shy.
I feel your pain. I fought for a year. I need to take him for his 3 year well check but seeing that doctor again I might just hit him.
Is he in a pre-K program?
Which child?
My son is starting pre-k on Monday. Sadly my older kids' elementary school isn't set up for the pre-k program yet, but next year they will be. He gets to go on his own bus and everything. His brothers are excited but I'm not sure he has a clue what's going on.
My son goes to a day treatment facility 5 days a week for delayed and disabled kids. It's like any preschool except they have onsite physcial, occupation, and speech therapists. They also have an onsite nurse and doctor. They accept kids younger than one years old up to age 6. They are taught their numbers, abc's, and how to read like any other preschool. They are just taught everything in a therapeutic way. They move each child up to a different class depending on age and progress. Each child gets one on one therapy. I love the place
My son goes to a day treatment facility 5 days a week for delayed and disabled kids. It's like any preschool except they have onsite physcial, occupation, and speech therapists. They also have an onsite nurse and doctor. They accept kids younger than one years old up to age 6. They are taught their numbers, abc's, and how to read like any other preschool. They are just taught everything in a therapeutic way. They move each child up to a different class depending on age and progress. Each child gets one on one therapy. I love the place
That sounds amazing.
I just went through this today. It's so awful and it makes me feel like a bad parent.My oldest had no cavities which I pretty much expected but my youngest son who is autistic has more cavities again. It's not from lack of trying to brush his teeth. He bites down on the brush only giving you one minute to do what you need to.
I've put off getting them filled as long as I could because he's had dental work before and it's been traumatizing to both of us. The nitrous oxide gas did nothing but give him a nap until the dentist came in the room. I was so happy when they said they're offering sedation dentistry again. People who aren't going through it honestly don't understand. Thank you so much for letting us know we're not alone.
Now we just need to master haircuts. He can't stand the sound of the clippers.
Well I just had a lightbulb moment, thank you! My nephew is 17 and has never liked getting his hair cut, now he just wears it long. He too is sensitive to some noises so I bet he just has trouble with the sound of scissors and clippers so close to his ears. Now if only he would develop a little bit of sensitivity to heavy metal music I wouldn't be subjected to his favorite band at ear drum damaging decibels [lol]!
ladyvp05
110 Posts
I had to fight with my child's doctor as well to get a speech evaluation and autism evaluation. It was always let's see next time or he is probably just shy.