The family initiated contact with me because they were concerned about their child's gross motor skills. The initial evaluation indicated that three year old Xinren had a lack of muscle tone and strength in both lower extremities, primarily in the ankles and feet. Deep tendon reflexes were diminished and he had tightness in his heel cords and only trace strength in his ankles and toes that had a clear impact on his play skills. I sent my report to the doctor who had no problem with writing a script for occupational therapy.
I learned that the parents were pursuing several different pathways of treatment - they had seen a neurologist who recommended diagnostic testing that was not yet completed. They had seen a podiatrist who recommended and provided SMOs. They were seeing their pediatrician for general purposes. And now they were coming to me. This caused me to write another letter to the MD, suggesting a need for case management/coordination. I think my brain is stuck in the 1990s wishing for a primary care doctor to want to always take on that role, HMO-style. I never got a response.
So because the insurance company does not have any requirement for referral gatekeeping, the family was free to engage the medical system this way. I felt badly about that, because I disagreed with the podiatrist's ideas for SMOs given the severe muscle weakness - a lower profile SMO simply wouldn't control the foot drop adequately. What I really wanted to happen was for the parents to follow up with the neurologist because I believe that the child has a neurological condition - and they need to have that defined.
After a while, the parents realized on their own that the SMOs were not accomplishing anything, so they asked me for my opinion. I suggested traditional AFOs and educated the family on range of motion to prevent toe and ankle contractures. The family wanted low profile orthotics, and I told them I couldn't make those because they were not clinically appropriate and that they really needed to go to the neurologist anyway.
The family disappeared for a while, and then reappeared, and then agreed to the AFOs. I didn't recommend going to an orthotist, even though the quality and durability would be better; the cost of AFOs made by an orthotist is simply exorbitant. I also decided not to make them myself, because even the ones I make are expensive. I opted instead for a more economic off-the-shelf commercial option. They were cheap, I was unsure if the family would use them anyway, and Xinren was growing so he would need new ones in six months anyway. I think it was the best (initial) choice, in context, and my experience is that it is a good way to get started.
Although I showed a picture of the AFOs to the parents before getting them, I could still see the disappointment in their faces when we were putting them on for the first time. And then the question came, "How long do you think that Xinren will need to wear these before his strength improves?"
The question hurt, like a sledgehammer hitting my thighs. It hurt because I have been trying to encourage them to follow up with the neurologist. It hurt because I am really worried about Xinren. It hurt because the pediatrician and the health care system couldn't coordinate itself to support the family the way they needed to be supported. And it hurt the most because of the pain in their faces.
I always feel a sense of desperation when I am confronted this way. My brain began spinning, whirling, reaching, trying to find the best thing to say. I know the parents are very highly educated so I started talking about physics. I started talking about fulcrums and the lengths of lever arms and the need for a plantarflexion block to overcome forces because I knew it was a language that would cut through our cultural differences. It helped, and they nodded, and in some small way I think they knew what I was saying, but... all of their sentences started with the word 'But...'
'But' is an interesting English language word. As a conjunction, it introduces a contrast, or an opposition. The parents nodded in agreement about physics, but they still had that look on their faces.
I think it is important, sometimes, to just explicitly state things, even if you think they are a given. I think doing this can promote a clarity in interaction, sometimes. So I just said out loud, "I see that you want something different than what I am suggesting. I am really sorry about that. But I want to assure you of something: my only purpose and my only intention, right now, is to do whatever it is that will help you and that will help Xinren. I would not suggest these splints if I did not think he needed them. I want you to know that. Please tell me - what is your biggest worry? What can I do to help?"
The parents faces lightened, and then quickly reverted to concern - both in absolute unison. There was a pause that lasted a little too long, but then the father finally said, "When Xinren goes to preschool, we are worried about what the other children will think. We don't want him to be different. We trust you, and we come back to see you because of this, but we don't want him to be different."
The sledgehammer swung around again, striking another blow to my thighs. Maybe they thought it was important, sometimes, to just explicitly state things, even though they thought it was a given. Maybe they thought it could promote a clarity in interaction, sometimes.
Of course they don't want their child to be different. That desire runs so deep and is so strong that it can cause absolutely clear-thinking, well-informed, highly-intelligent, and maximally loving parents to stay away from the neurologist and every single diagnostic test that might be thrown their way. In that context, going to the neurologist might be the most illogical thing that parents could do. Emotionally illogical, anyway - a concept probably worth thinking about when it comes to trying to understand human behavior. But how can you break though that?
All I could think was to tell the truth. To remove all points of interest, except what I asked them to trust me about. That my only intention was to do whatever would help them and that would help Xinren. I started saying things I don't generally say, because I did not know any other way to break through, and because of course something in their approach really needs to change. I told them, "I am so sorry. I really am. I know you love Xinren and I know you want everything for him. He has some troubles with the muscles in his legs. I am worried about that too. But, I know you are on a pathway and you are learning about all that. I am very sorry. I care about him too. And I care about you. I don't even want you to pay for these splints. I just want you to take them and try them. And go see the neurologist. Then we will see. I don't know what will happen, but I think these are best for him. Can we just try this plan?"
My own logical brain tells me that this is not really a solid business method for my private practice. But, thirty five years or so ago I remember strategizing with my friends about how we would answer the questions we would face during our interviews to get into OT school. We all figured we would be asked why we wanted to be occupational therapists, and every one of us struggled to figure out what to say other than, "Because I want to work with people" or "Because I want to help people." It sounded so contrived and even hokey to us, even if it was true.
But it was true. But it is true.
Xinren wore the AFOs home, and we scheduled a follow-up appointment. I guess now we will see what happens next.