A kid doctor’s appointment is not the ideal way to spend a day off from work, but Carson makes it enjoyable by being himself.
Full travel days with our 11-year-old special needs son for medical appointment provide an opportunity to remember and reflect on how far he has come in his life. These sort of take-stock moments are critical for us, as they provide a pause on the hectic pace of life.
This particular doctor’s appointment was at Wilmer Eye Institute in Baltimore. Next month we go to Wilmington for a cardiac checkup.
Since birth, Carson’s eyes have always been a concern. He has astigmatisms and strabismus in both eyes. Both issues, especially the wandering eye, have improved as he’s gotten older without surgeries.
After years of local doctors, we were referred to Wilmer for care with the recommendation surgery would likely be needed if we ever wanted Carson to be able to potentially drive.
The doctor at Wilmer has been unable to conclude during our previous three visits to Wilmer if surgery would help our guy. For me to be okay with eye surgery for my child, I am going to need definitive answers, or at least assurances there is a great chance it will benefit him. At this point, the doctor remains unsure of whether surgery will help his vision. Another inconclusive visit but a lot to feel positive about nonetheless.
Throughout the three-hour drive to Baltimore and back and the two-hour eye doctor appointment featuring dilation and a battery of different tests, measurements and screenings, there was not one complaint from Carson. He was such a trooper, and we were not the only ones who noticed. Each of the nurses and the doctor remarked how wonderfully compliant he was throughout the process.
We do not take smooth interactions like this for granted. For one, kids on the spectrum often struggle with the unknown as well as transitions. There was little we could do to prep him for this appointment. We knew some of the tests they would run, but we didn’t know exactly what it would involve. We also could not tell him at what exact time the doctor would see us or whether everything would go smooth in the health care facility with the COVID-19 protocols. We would all have to roll with it as it comes. With Carson’s disabilities, being flexible is certainly easier said than done.
This long day was an opportunity to consider how far we have come with our journey with Carson, who has Autism, apraxia of speech, ADHD and a complicated genetic disorder called duplication syndrome. Because his life generally and health concerns specifically are so complicated, we try to keep things with Carson simple. This is not difficult in daily life with him because we follow a pre-planned schedule. For instance, he knows in the morning when I tell him to come have breakfast it’s go time for school. He has his breakfast at 7:10 a.m. and gets dressed and usually stands by the door waiting for me to get my stuff together by 7:30. A similar set of events plays out at night with dinner, shower and bedtime. It works with him and he’s happiest when he knows what is coming his way. It works for all of us.
When plans cannot specifically be made, Pam and I worry. However, we do not fret as much as we once did. There was a time when the struggles were real. Rewinding back five years, or even three, I could never have imagined a three-hour ride in a car without Pam in the backseat to entertain him. This week he read his Guinness World Records book the entire way. There was a time when I never would have imagined us pulling into a parking garage running a few minutes late and him immediately be compliant in jumping out of the car and hurrying with us. There would have been a tantrum for interrupting something or difficulty stopping what he was doing to transition. Add wearing a mask and screenings, and it’s remarkable how far he has come.
Finding inspiration in your own child is a true blessing. When I am having a difficult day (not going to lie there have more bad than good since last March), I often reflect on Carson and his daily challenges. I think to myself often Pam and I can do anything if we can successfully raise a child with Carson’s difficulties successfully. Of course, measuring success fluctuates daily. We still have tough days, but they are rare and not as serious. He’s doing so much better in all aspects of life. His progress is truly remarkable.
This week’s doctor appointment was just one of the latest times he has proven he will continue to overcome. This week’s appointment was challenging. Along with the COVID protocols to navigate, he had to wait for 30 minutes because the doctor was running late. He then went through about a dozen different assessments. He had his eyes dilated and then had to wait another 30 minutes for the drops to kick in. He then saw the actual doctor, who did his own battery of tests.
At one point, the doctor, who seemed agitated, told Carson he needed to keep looking at the video following at least six similar instructions. Pam and I looked at each other, wondering if we should tell the doctor the video stopped. Carson’s palm finally went up and we could tell he was getting frustrated. We told the doctor the video was not playing, and he replied, “oh I’m sorry, that makes sense.” Carson shrugged his shoulders and giggled. It was a symbolic moment.
