Close encounters of the medical kind: when kids with autism or other developmental disabilities visit the doctor.
As you navigate this article, you will find a number of words used in a generic sense. This is done for the sake of simplicity for the writer. The words "doctor" and "practitioner" will be used generically to include a variety of healthcare professionals, including clinicians and therapists. The word "parent" will be used and can easily be substituted with the words caregiver, guardian, advocate, sibling, loved one, etc. "Child" will also be used to indicate the individual being supported in their medical adventures, with the understanding that the individual might possibly be an adult. In addition to the use of generic words, the suggestions will be somewhat general, as it would be impossible to take into account the diverse and individual needs of each child and their specific situations in this article.
Let's start with the reason behind the difficulties that any child might have with visiting the doctor for the first time. Very young children (toddlers) are old enough to have very basic issues such as shyness with strangers (especially in an unfamiliar place) and separation anxiety (even with the relatively small distance between the parent's lap and the exam table). If they have already been to the doctor, especially if they have had a shot, they may not be too keen on seeing that person again (or perhaps anyone in a white lab coat). The children's books available commercially may be quite useful in addressing these issues with a young child who is developing typically and may be of use for children with disabilities as well. However, if the child has autism or other developmental disabilities, which may include difficulties in the areas of communication, cognition, sensory processing, and/or emotional regulation, etc., any new event or environment can be a struggle.
There are several things to consider, none of which are rocket-science, but they can be easily overlooked in the rush of things:
* Communication & Information sharing
* Time & Timing
* Telling the child about the appointment
* The bag
* In the exam room
* After the visit
Communication & Information Sharing. A great place to start is good communication and sharing of information with the practitioner and his/her office staff. When you call for an appointment, it is a good idea to tell the scheduler that your child has a disability, especially if the practitioner does not specialize in your child's disability and/or if you think the appointment might take longer than the average appointment time. It is OK to ask if the practitioner has treated patients with similar disabilities. You can offer the name or link to a website, if you think it would be useful information. Another thing to consider, with respect to information sharing, is to give specific information about what they need to know so they can have positive interaction with your child. One way to do this is to provide them with some information on how your child communicates, if your child has sensory issues or behavioral considerations, etc. This information would best be presented in a format that can be easily read ahead of time and then be read at a glance before the practitioner enters the room. For this reason, it would be good to have the information listed on one page and to avoid paragraph after paragraph of information. The form "What to Expect: A guide to me" (featured on page 30) could be used or adapted to fit what you need to communicate about your child. This type of document could be faxed, e-mailed, snail-mailed, or taken to the appointment ahead of time. If the information is not too detailed, it can be taken to the office on the day of the appointment.
EXAMPLE: A child's dental hygienist is getting ready to start a cleaning and says, "OK Johnny, open wide. I am going to look inside your mouth and see if there are any bugs in there I need to get out of there." Not knowing Johnny, she was unaware that he is very afraid of bugs. Of course the hygienist was only talking about germs, but he takes her literally, and thinks there are creepy-crawly things in his mouth; an instant problem. So, in the future, Johnny's information sheet will need to include a warning that he takes things very literally, metaphors should be used with caution, and there is a strong dislike of bugs.
As parents, we will not always be able to predict what needs to be included in the information we provide to the practitioner. In fact, the parent in the example above had not thought to put this on the information sheet until the first time it became an issue, but she will now. Sometimes we just have to learn as we go.
Time & Timing. These will be important aspects of your plan. The time of the appointment can make or break the success. Some kids need to have an appointment set when there are as few people at the doctor's office as possible. The scheduler may know the calmest time of day. Also consider if the appointment will run into a meal time--will this be a problem? Is the meal better before, after, or while in the waiting room? (Check with office staff about food in the waiting room.) Can your child wait for his or her turn in the waiting room, or could the waiting take place in an exam room? Will the child need small breaks during the exam, or would it be best to just get through with the exam as soon as possible?
EXAMPLE: A strategy regarding time would be to call the clinic before you leave, when you are on your way, or from the office parking lot to find out if the practitioner is running behind. This can be a plan that is developed ahead of time with office staff. If the child cannot wait patiently and it is going to be awhile, the office staff could tell you what time to arrive and call you on your cell if things speed up. For some, a couple of trips around the block, or a quick trip through a drive-thru may be better than waiting in a waiting room. For others, that might prove to be disastrous as a change of plans may be difficult. However, if the child does well with a visual schedule, checking in with the office can become part of the routine of going to the doctor and you can build that right into the visual schedule or "to do" list. This has worked well for some.
Telling the child about the appointment. This one kind of fits under Time & Timing, but it can be an issue all on its own. Every child is different, though all children will need to know, with some amount of advanced warning, where they are going and what is going to happen so they have an opportunity to adjust to the idea and regulate their behavior. Some kids may have a great deal of anxiety if they know too far in advance, while others need to know as far in advance as possible. Some just need to know when they are going, where they are going, and why they are going there--while others need pictures of where they are going and a story about what will happen when they are there. If this story was written specifically for the individual it is sometimes called a social narrative. Some refer to them as Social Stories (trademark of Carol Gray). Carol Gray has written a number of books on the subject, books filled with examples of stories and how to develop them. She has even developed some video social stories. A quick search on the Web, using the key words "social stories" or "social narratives" will bring information and examples. Social narratives can be written with pictures to help the child understand what is being said in the story. Some use line drawings, some use photos; this will depend on the needs of your child. A few practitioner's offices have photos of their clinic on their website, these can be useful.
EXAMPLE: One father called the office of the practitioner and asked for pictures of the place so he could show his son, who has autism, where he was going. After a brief conversation with the father, one of the office personnel took her cell phone around the clinic and took photos of the waiting room, the hall, the bathroom, the clinic room, the reception desk, and the faces of the people the man's son would be seeing. She really "got the picture" of what the young man needed. The father showed the son the pictures as he talked to him about going to the doctor. He reviews these photos with his child before each trip to this doctor.. visits have gone much more smoothly.
Some children can view the pictures right off the phone, while others will need them printed out onto paper, and yet another child will need them imbedded into a story--like pictures in a book. Some kids may do well with an audio story that has been recorded onto their MP3 player or mini-recorder. Others may need the visual. If the child does not need pictures specific to the situation, there is a website called www.do2learn.com. This website has a collection of free pictures that can be printed for free. Another option would be Google Images*. One can enter search words such as "checking heartbeat with stethoscope," "doctor examining ears," "doctor examining eyes," "doctor looking in throat," "sitting on the exam table," etc. * Warning--when searching for pictures on the Internet, it is better to search without the child present, as not all pictures that result are suitable for young children.
The Bag. The parent of a baby or toddler always has a bag, usually filled with the essentials for toileting, feeding, and playing with the child. Older children will sometimes carry stuff with them to keep themselves busy. If the child does not do this on his/her own, some planning ahead to grab the snacks and entertaining toys/games may be required. If the child has electronic toys, make sure they are charged. Bring snacks and/or drinks. If you use a reinforcement system for positive behavior and/or waiting, be sure to bring plenty of reinforcers.
EXAMPLE: One mom always makes sure her cell phone is charged on the day of an appointment. She even puts the phone charger cord in her bag, just in case. As they wait in the car for the office to call them and say it is time to come in, she and her daughter make planned calls to people they know will be home. They keep the cell phone on speaker so they can hear the call waiting go off. This child loves to talk, to grandma, mom's friend, and to Dad. The time passes quickly for both mom and child. The child is reinforced occasionally for waiting.
The Exam Room. This can be another time to wait. It is useful to have something set aside for the child to do in this room, perhaps something he or she did not do in the waiting room or the car.
EXAMPLE: If you forgot to bring something you can ask the nurse for a cotton ball and a disposable drink cup, usually a mainstay in a medical exam room. These items make a quick game of "mini-basketball possible." The doctor's chair (usually a rolling stool) can be fun, too. The child can put the cotton ball on the chair stool and then spin it. Some kids think it's funny when the cotton ball goes flying off the stool due to the centripetal force. It is amazing the number of games you can come up with using something as simple as a cotton ball.
When the practitioner comes into the room, it might be helpful for the parent to shake his/her hand. This shows the child the person is friendly. If the child is fearful, they can sit on the parent's lap for the exam, or if too big for that, he/she can sit in a chair next to the parent. Only if the exam requires lying down does one need to be on the exam table. See what you can work out with the practitioner. Another option for this is to have the parent sit on the exam table first and let the practitioner exam the parent's ears, eyes, throat--then it is the child's turn.
EXAMPLE: Sarah has Down syndrome and has needed to see a medical doctor fairly frequently regarding the physical aspects of her disability. As she grew past toddlerhood, she became more and more apprehensive about letting the doctor examine her mouth and listen to her heart with the stethoscope. It became quite a struggle, though neither the doctor nor Sarah's mom were willing to give up. Sarah's mom knew that Sarah loved to blow bubbles and asked the doctor if she could try something. She shared her plan with the doctor. Next visit she brought bubbles with her. Some bubbles were blown in the waiting room. Some bubbles were blown at the scale, and then again once in the exam room. The bubbles were put away until the doctor entered the room. Each time Sara would let the doctor look in her mouth or listen to her heart, etc., then she would get to blow through the bubble wand (mom controlled the bubbles and the wand). Bubbles are very inexpensive and can even be made with dish soap. Her mom put the bottle in a re-closable sandwich bag so they didn't leak in her purse. This has become a special part of going to the doctor, it takes just a few more seconds, and the doctor can do the exam...no crying. This is a reward that is being faded. Sara used to blow bubbles after each step of the whole "going to the doctor" routine. Now she only uses them if it takes too long in the waiting room and after the doctor is finished with the exam. While bubbles will not work for every child, each child has things that he/she loves. Sometimes one needs to think outside of the box.
After the Visit. Generations of parents have taken their children out for a treat after a doctor's visit. Some call this a bribe. Some call it a reward. Parents of children with autism and other developmental disabilities might say, "if only it were that easy." For these families, what would seem so simple, is not. The after-doctor treat at the drive-through may not be effective because it is too much of a delayed reward for the child. The child (young or old) needs to have enough skills in the areas of memory and cognitive planning to be motivated by a reward that comes after the fact (or verbal/visual reminders of what is to come). Then, even if they can do that, the fears (rational or not) and sensory issues may be too overwhelming, thus the delayed treat becomes either hard to remember or not motivating enough for them to be able to adjust their behavior. For the after-doctor treat to work, the child may need to learn to accept rewards with greater and greater delay, a small amount at a time, over a long period of time (as was the case with Sarah, in the prior example). Since doctor's appointments do not happen very frequently, this skill may need to be taught using other routines.
Another after-visit thing to consider is to "debrief." It's a business term, but it can be used to go over the positive points of the visit--to talk about what did go well, to laugh about anything that was funny, and to discuss some of their fears when it is not in the heat of the moment. Again, this will take some memory and cognitive skill. However, even a child who does not seem to comprehend may hear the positive tone in your voice. And from this debrief, even if it is mostly with yourself, you will have some hindsight and further insight from which you can develop a social narrative and plans for the next big visit or big event.
Kristy McGinnis is an Assistant Professor in the College of Education, Special Education Program, at Pacific University.
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|Publication:||The Exceptional Parent|
|Date:||Aug 1, 2009|
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