I was grateful for Hannah’s post last week and loved the topic she chose- it happened to fit well with what I had planned to write about this week.

There are so many little things I have always taken for granted. My eyes have always been a bit light sensitive, there are a few food textures that make my skin crawl while my stomach roils, and I have never liked certain types of touch. But for the most part how my nervous system processes the world has a great deal in common with what everyone else seems to experience. I find it is easy to assume others experience the world the way we do. Yet, we all have a bit of variability in the way things feel to us, or our sensory perceptions.

Even minor differences can dramatically impact how the same event is perceived. Radical differences can render an experience unrecognizable. As I have briefly touched on before, Tony has a history of pretty intense challenges in doctor’s offices. A great deal of that is related to how his nervous system processes the world around him.

We are the proud parents of a beautiful boy whose skin nerves were so sensitive four years ago that certain things lightly touching him (like foam soap or cool whip…generally considered to be gentle textures) could cause him to gag and vomit. And what so many people experience as a pleasant touch- his nerves were clearly sending pain signals to his brain. Tony has worked hard with us on sensory integration for a few years now, and has come a long way. Yet things that happen in medical settings frequently feel just a wee bit more painful than a light touch of foam for the average person even, and the way his nerves feel the world has amplified that all the more. That is just one example…our little man’s sensory differences are many, and several of them have shown significant variability from normal.

Up until Tony was about 5 you could count on screaming and hysterics for most of any medical visit. Up until the past 13 months or so, there was pretty close to zero cooperation or tolerance for most anything, including listening to his heart or looking in his ears. He had to be held down for things like that or it was not going to happen. Dental cleanings still require anesthesia and a hospital setting. I have been peed on at more than one doctor’s office. I’ve had him up on my shoulders to try and calm him. For a long time we were bringing him in using the stroller because it helped him stay calmer. He’s too big for most strollers now, and he’s figured out how to use the wheels of the one we have so as to propel himself anywhere he wants to go. We’ve had fleeing, tantrums, and I think it’s fairly safe to say we have a history of being spectacularly eye catching if not flat out deafening.

Truthfully, there is no way one post can recount the problems. This is merely an overview to provide context. Today I’m going to focus on sharing with you some of the strategies we’ve been using to help him better tolerate these visits while sharing highlights of his most recent yearly well-visit exam.

Desensitization

A little over two years ago, a sweet and gentle soul named Kathleen was Tony’s speech therapist. She recommended an article to me about a pilot program where Autistic kiddos with a history of difficulty at dentist visits were worked with frequently in a dental office setting for a six month period preceding their next exams. The participating kiddos experienced dramatic improvements in tolerance. I discussed this article with Tony’s fabulous ABA/habilitation team, and this was how Tony’s medical desensitization program was born.

The first step in this program is to ask him to look at the piece of equipment. Once he has done so, he is provided a highly motivating reward, praised, and that is all that is asked of him until he is able to look at the item 80% of the time calmly. At that point we would advance to the next step, which is just a quick touch, which is also rewarded and progressed in the same manner. From this point on the next stage would depend on the item. For an otoscope it would be briefly touching the outside of his ear with it, then once that was tolerated briefly touching both ears, next it would be to insert the otoscope into the canal, and finally moving towards gradually increasing the amount of time the item was being used.

Each item has different steps, with items he finds more aversive requiring more steps and slower progressions. We have to continually circle through and reintroduce mastered items so that he retains familiarity and acceptance. Also, our sweet son is at different places of tolerance with the items we have been working on. We continue to add to the list. Just a couple of weeks ago, at the recommendation of Miss Emily, we added band-aids…which still send him into hysterics and can not be applied when he is awake without multiple people.

For his yearly visit with his super sharp PCP Dr. G, we saw the greatest improvement with his stethoscope and otoscope tolerance. He was able to calmly sit through both of those portions of the exam without being restrained by me, which is a huge improvement for him. He still cannot tolerate a blood pressure cuff long enough to get an accurate measurement. He freaked out a bit going back and struggled with getting on the scale and having his height taken, I think because he wasn’t mentally ready yet (we had just come out of the bathroom).

What I did to soothe him there was to hand him a tablet with one of his favorite VeggieTales episodes playing, and it calmed him down enough to stand for the measurement. The other areas of the visit he continues to need to fine tuning on were much more mundane comparatively, such as not laying down on the lobby chairs or standing up and walking on the exam table.

A Few Other Strategies

When we first switched to Dr. G’s office last year, I took him by once a week for the month prior to walk around the waiting room so he could familiarize himself with the location. This helps him feel less anxiety about new locations. This year, Whitney and I just brought him in for about five minutes the Friday before his appointment. He felt comfortable enough to ask to use the potty and get water from the fountain. He tried to flee the lobby after sitting for a couple of minutes, so since it wasn’t the official appointment, I told him that we could leave as soon as he requested it on his device.

We also talked about his upcoming visit, and depending on how much is being done I will encourage watching episodes or reading books of some of his favorite characters, like Barney or Dora, that deal with doctor visits. To help him wait in the lobby, I will bring in a tablet so that he can watch one of his videos and is more motivated to sit. We also use this device to help him cope with his anxiety while waiting for the doctor in the exam room. If he is very scared or overwhelmed though, like he was for his Urology visit a couple of months ago, these strategies are less effective.

For the past couple of years, I have paired Hannah and Tony’s well visit together so that he could witness that other people go through these exams also. I think that has been important for him, although since our young lady has just recently turned twelve, we won’t be using that strategy much longer. If he is upset when we are leaving, I will also ask to make follow up appointments and payments over the phone when I get home. For this past visit, he was calm enough for me to stop at the front desk and check in with the receptionist on the way out.

I think it is important to note that how Tony does depends on what is done to him during the appointment. Vaccines, ultrasounds, pulse oximeters with adhesive sensors, blood pressure cuffs…all those things can still cause a fair bit of panic. I think frequently people fail to recognize why Tony reacts the way he does. Most people being brought to a place outside of their control to experience things that felt really painful to them would be neither calm nor cooperative. Tony’s nervous system has been processing events that come across to most individuals as whispers so that they feel to him like screams…so these medical visits can be quite traumatic for him.

Reassurances and explanations that what is happening will ultimately aid him have not really been as beneficial thus far for helping Tony as the approaches I outlined today. These methods take time, extensive repetition, and require other people to help generalize them to be successful. I am not going to be the one doing procedures or giving him doctor’s exams in the real world. Last week Hannah nailed the final ingredient we need to be successful during these visits, and it is the same for every family of a kiddo with sensory differences regardless of the cause- patience and understanding from those around us.