Everyday Decisions: Patients Please—Making Medical Visits Less Painful for Kids With LD
In my several posts in the Everyday Decisions series, I have talked about traveling for kids with learning disabilities (LD) plus how to successfully engage with sports and music lessons. Today let’s talk about a topic that you just cannot avoid in order to keep your kids alive and well—how to face challenges for kids with LD related to medical visits.
Looking back on my journey as a parent advocate for my two kids with LD, I realize that one of the very first settings in which I learned advocacy skills was in my child’s pediatricians office.It’s often there that parents first realize that this is the moment and the place to ask that question about your child or bring up that topic of conversation with your pediatrician that you just don’t really want to, but know that you have to. Is there something that we need to look into for my child?
Editor's Note: In the video, Lyn talks about her son who has ADHD and is on the autism spectrum. He also has LD, and her words will be helpful to parents of children who have a variety of special needs.
What’s Up, Doc?But, leading up to this moment, which for most parents is both stressful and emotional, is usually a lot of observation, concern, wondering, comparing and ultimately, researching to see if your child is, indeed, showing signs of a developmental delay, speech issue, learning disability or other problem that you are afraid may change their status from “normal” to—something else. At this stage, you have no idea what that “something else” is, but definitely want to get some answers. So, by the time you actually bring up a topic related to your child’s development, you are actually, in my opinion, already a few steps down the path of becoming a strong advocate for your child. You’ve come prepared come prepared to ask questions, take notes, and leave the office hopefully with next steps that will help you get closer to understanding your child’s needs.
NCLD’s new LD Navigator tool is a great way for both parents and pediatricians to connect during these conversations. Once the conversation is on the table, your pediatrician may recommend further observation for a period or perhaps immediate testing. He may suggest that you work with an educational diagnostician, visit with a speech pathologist, or that your child be evaluated for occupational or physical therapy (OT/PT) services. He will also most likely talk with you about ways to approach your child’s school for help and services at the appropriate time. Whatever the outcome, parents I’ve talked to usually feel like their pediatrician is in many ways their first partner toward getting their child the help and support they need.
Beyond this first vital step in approaching and working with your pediatrician to assure your child’s needs are being addressed in a medical setting, there are many other ways that parents can intervene in a medical setting and help their kids with LD, autism and other differences feel more comfortable at the doctor’s office. How can parents help make visits to the doctor, dentist or orthodontist easier for everyone?
Pediatrician VisitKids with LD often have anxiety. This has been a theme throughout the Everyday Decisions series. But they also sometimes are naturally more sensitive to pain, have trouble following directions, and have an especially hard time waiting—all of which are par for the course in pretty much every medical situation. Most kids don’t like going to the doctor because they are afraid they will get a shot, don’t know what to expect, and sometimes just don’t like the entire medical scene. So, as the parent of a child with LD, how can you make things go as smoothly as possible?
- Make waiting as painless as possible by surprising your child with a new game or book when you arrive.
- Briefly share information about your child’s special needs and anxieties ahead of time with the nurse or receptionist before you begin the appointment. Just a quick word or reminder in the hallway before your child’s checkup can make all the difference. I try to do this each time we come into the office, and have noticed it makes a big difference.
- Ask to discuss your child’s diagnosis and/or needs in a separate room without your child there when necessary. I used to feel bad about asking for this because it meant that someone else (like a nurse) had to watch or entertain my children for a few minutes while I spoke to the doctor. But I got over it once I realized how much better it worked in terms of me getting full information from my child’s doctor! Another option is to ask for a separate consultation visit with the doctor later without your children in tow.
- Come prepared with a plan for how you will handle your child’s anxieties and overreactions (we have a lot of trouble with this related to shots).
- Don’t be embarrassed to ask the nurse for something that your child needs, even if it seems inconvenient or unreasonable. If your child needs it, it’s not unreasonable.
Dentist or Orthodontist VisitThe dentist and orthodontist office was not a setting in which I didn’t realize I needed to advocate for my son with ADHD and high-functioning autism until it was a little too late. It honestly just didn’t occur to me right away that I needed to step in, explain his special needs and even suggest solutions. But, once I saw that I definitely needed to, and did, things went much more smoothly for everyone.
I noticed that the dental assistants were scolding my son, in a way, about his less than fabulous dental hygiene on his lower teeth. I gently pulled them aside and explained that due to problems with his grasp (and despite several years of OT), he struggled to brush at the expected level for a child of his age. After this, the dental assistants focused more on the basics of brushing (which his OT does as well) instead of expecting him to already have mastered an age-appropriate skill that he had not yet grasped.
I also searched high and low for a dentist that was especially soft-spoken, caring and understanding in interactions with children on the autism spectrum. Once I found her, she has made all the difference in our dental visits. She comes up with methods on the fly to help my son relax while he’s in the chair, and I always learn something from her in terms of how to help my son…an added bonus!
In the orthodontist office, the open layout where everyone could observe my son’s fearful (and sometimes very loud) reactions to the work was not ideal for anyone. I had to step in and explain that my son is especially sensitive related to his mouth and that he can’t always control his reactions to pain or discomfort…so, could we please have him set up in a private room, etc.? Once the staff understood the need for a special set-up, they worked with me from then on and my son’s visit went much more smoothly.
Surgery or Hospital StayOverall, the same ideas above apply to day surgeries or hospital stays for your child. Just remember that it never hurts to ask for something that you think will make your child more comfortable. The worse the nurses, staff and doctors can say is no, and I’ve rarely seen that happen. Most medical professionals will go out of their way to help you and your child feel as comfortable as possible, especially in these stressful circumstances and environments.
My rule of thumb: stay positive, ask politely but persistently and if the answer is “no”, then ask if there is an alternative. Work with people around you to find a solution that takes care of your child’s needs. Once everyone sees a shift in your child’s attitude or comfort level in response to your requests, they will understand and probably be very glad that you intervened.
After all, it’s your job. And it’s your child. Only you know best what your child needs, and only you have the special privilege of being your child’s advocate in each and every unique setting.
Lyn Pollard is a freelance writer, parent advocate, and the mother of two kids who learn and play differently. A former journalist and change management consultant, Lyn writes, talks and tweets about advocacy, literacy and safe schools for kids with learning disabilities and special needs. Check out her piece in the New York Times.