Cerebral Palsy, Medical, Motherhood, Personal

“If You Were More Involved..”

I have been fortunate enough to be an active member of Mark’s healthcare team. I don’t say this because I am his mom and a stay-at-home mom. I say this because I stay on top of what needs to be done.

A mild month view in the calendar

Follow-ups? Scheduled before I leave the office. Can’t schedule that far out? Don’t worry. I have a reminder to call 3 months later so I can get him on the schedule. Insurance doesn’t cover that? Oh yes, they will. Give me a few minutes on the phone. A $1200 bill from that one hospital? Nope. They didn’t bill his secondary insurance. He is outgrowing his AFOs. I will call and request an order. That medicine has less than a week’s supply left? I need to request a refill. We need to work on that tightness in his scapula or in his leg? 30 minutes of stretching every day.

I am not saying this to brag or get applause for what I do for Mark. I do it because it’s my job as his mom and I take great pride in the work he and I put into his health and progress. This is why I think this is one of the most difficult posts to write.

In September 2020, I took Mark to his Pediatric Developmental Specialist appointment for his 2-year evaluation. The hallways were filled with marvelous undersea murals, so bright and full of color and life. When we walked into the room where his evaluation would take place, it was another story. We suddenly became trapped almost in a room with 3 bare white walls, one holding a one-way mirror in place. The 4th wall had a Mickey Mouse mural that looked like it had been done in the 80s. There was a large wooden desk with two chairs seated on either side and a large plexiglass barrier in the middle of the table separating the doctor and his resident from Mark and me.

For someone who is supposed to evaluate Mark on his achievements both cognitively and functionally (physically), you would think they would have a place setting that would help achieve the best results, right? Apparently not.

Before we even begin with testing, we spend about 20 minutes discussing Mark’s updates and changes in health. Since it had been a year since our last visit, there was much to cover. I think what really set the tone for this appointment was his casual “joke and jab” to his primary care team. Mark’s Pediatric Rehabilitation Team (The SMART Clinic, Rehab doctors and, his PT) were still fighting heavily on whether or not to give him a Cerebral Palsy diagnosis. While in his chart, the doctor we were visiting said “Oh I see Spierre and her office are still hedging bets to diagnose CP, huh?”

I said nothing.

During this evaluation, Mark is given a few basic items and is expected to perform a task within 20 seconds. If he completes the task successfully, without a demonstration or without repetition of instruction, he earns a passing score. If he does not complete the desired task within 20 seconds at all, regardless of demonstration or instruction, then he fails. This seems fair, right?

Dear Reader, allow me to give you examples of what the “tasks” look like.

  • Mark was given a large pink cup and 3 bare wooden blocks. He needed to stack the blocks and place the cup on top of the blocks, completely covering them. Mark failed this task.
  • There was a plastic ring about 5 inches in diameter attached to a string. He needed to grab the ring and place his wrist through it. Mark failed this task.
  • The doctor stood behind Mark and rang a bell on the right side of his body. Mark needed to look directly at the bell. Instead, he looked to the right slightly and then immediately back at the bell. Mark failed this task.
  • The resident placed the large pink cup in front of her, held a small piece of plexiglass in between her and Mark, and placed the same 3 bare wooden blocks in front of him. The goal was to have Mark reach around the plexiglass to place the blocks in the cup. He grabbed the plexiglass out of her hand and put the blocks in the cup. Mark failed this task.
  • Mark watched the resident’s hand as it carefully glided over the paper. She drew the letter M and Mark was expected to draw the letter ‘M’. He drew vertical and horizontal lines, but not the letter ‘M’. Mark failed this task.
  • 5 new blocks (with designs on them) were placed in front of him. He was expected to stack the blocks and “tear them down”. He spent a few moments inspecting the blocks because these ones had animals, cars, and letters on them. Mark failed this task.

There were a number of tasks he was asked to complete, these were only a few. There was one task in particular that really upset Mark. The doctor’s comments after Mark failed the task really upset me.

  • The doctor began to play with the blocks with Mark. It was the first time Mark had shown any glimpse of a smile during the entire appointment. Suddenly, the doctor pushed the blocks off of the table, just out of Mark’s reach. The expectation was that Mark would react quickly and try to catch all of these blocks before they hit the ground. Mark cried over this. The doctor laughed because of it. Mark failed this task.

With each part of the test being administered, there were a few things even I wasn’t sure what was expected initially. However, after instruction, I understood what they were asking Mark to do. I also know that I came in armed at the ready with progress notes from his Physical Therapist and Occupational Therapist. With every skill that Mark received a “fail” on his test, I had a progress note saying it was a skill that he had mastered. Moreover, I offered to provide video and photographic evidence of him mastering these skills.

Okay. Okay. My 2-year-old wasn’t writing the letter “M” but my god did he give it his all to imitate her movements.

The doctor did not take into account the professional opinion (evaluations and supporting documentation) of the care team who see him on a weekly basis. The doctor did not want to review the videos or photographs of Mark completing these tasks. The doctor did not provide a learning environment to foster an intellectually curious and playful mind. What he did do though, was not just insult Mark’s care team. He insulted me as well.

After the results were tallied, it appeared Mark was delayed. Mark was severely delayed. Compared to an “average” 2-year-old, Mark was functioning at 40% cognitively and 60% functionally (physically), respectfully. When he explained these findings, I felt my heart break a little more with each passing moment.

How could he not take the professional opinion of those who care for him weekly? How could he not see, right there on the checklist, that Mark mastered these skills? Didn’t he care? It was the same exact test, just in a more child-friendly environment. It was the same exact test given with a smile and not a grimace. I am not saying that these particular aesthetic factors would have changed the outcome, but it certainly couldn’t hurt.

I sat in the chair, processing all that I had heard. Severely delayed. Severely delayed. But how? Something wasn’t adding up. I felt like I failed my child more than anyway possible, more than any mother could fail her child.

The doctor looked at the results on the paper, all of his circles and ‘x’s, black ink, red ink. He leaned back in his chair, took a deep breath in, and let out a sigh. He stood up and said:

“If you were more involved in your son’s care, he would be further along by now. He would be on par with an average 2-year-old. He would be speaking in full sentences, running and jumping by now.”

The wind was knocked out of me. How… How could I let him down like that? What more could I do? I… I have notes. I take notes in therapy sessions so I can work on skills at home. I read him books and create activities that stimulate his mind. I work with Mark every single day from the moment he opens his eyes to the moment he falls asleep. I’ve been trying my hardest. Why isn’t it enough? What did I do wrong? Where am I lacking? What do I need to do more of? How could I let him down like that? How could I fail him? Why did I fail him?

The guilt from the NICU stay was there already, festering even after all these years. This appointment fueled it even more. It also added a great deal of shame to my emotional baggage. Let me be clear for a moment. I have never, in my life been ashamed of Mark. The shame I felt was for myself. I felt that could do more. I just wasn’t sure what else I could do. I felt that I should do more. I just didn’t know where to begin. Then I did the unthinkable. I started to ask myself if I was the best mother for my son. I asked myself if I would ever have a “teaching” or “parenting” style that would help him learn? One that would benefit him in the long run? I asked myself if I let him down. It became quite clear that I failed as a mother. I even wrote in my journal (yes, I journal daily) about the experience.

“I have absolutely failed Mark and I honestly don’t know…but somehow I just keep doing it. I keep failing him. What is wrong with me? I thought I would be a good mother. What am I doing wrong? What else can I do for him? I just want him to be happy and know he is loved. The test doesn’t define him I know but the doctor’s pep talk or motivational speech hit me like a ton of bricks. What does Mark need from me? What more can I do? Why do I keep letting him down? He is going to resent me as he gets older. I just know it.”

As a mother, as a parent, you will always question if you’re doing things “right” or if you’re doing “enough”. You will find yourself asking “what if” and “why not” often. For me personally, these questions flood my thoughts daily. Am I doing enough for Mark? Am I involved in his care enough? What more can I do for him? It is one thing to have friends tell you that you’re doing good work and you’re doing everything right. You’re friends. They are biased.

To have one of my son’s medical professionals tell me that he would be further along if I were more involved, to hear it from a stranger is crushing. On a personal note, I did cry. I cried the whole way home and all through naptime. This situation had me thinking, if he said this to me, who is to say he hasn’t said this to anyone else?

For anyone who may be reading this, allow me to leave you with this one piece of advice:

You are the best mom/dad/grandparent/aunt/uncle/caregiver for your child and you’re giving it your all. Your child will see that.

I hope Mark will see that in me, anyways.