Tonight is more of a status update than anything else. Our son had his bi-yearly neurology appointment yesterday. These appointments are meant to review his medical conditions; track his developmental progress; gauge the current effectiveness of his medicines, treatments, and therapies; and discuss any issues that have developed or worsened over the last six months. If you've been reading recent blogs, you know that we had some issues to discuss.
Our son's specialist is an award winning pediatric neurologist who is doing some cutting edge research in genetics and its impact on kids with developmental issues and autism spectrum disorders. He's been in our son's life since he was two years old. We are all very comfortable with him and his opinions. Even better, he's a really great guy who loves his kids and sees them as individuals, not a disorder to be treated.
As he typically does before coming in to meet with us, the doctor reviewed our son's file and any documents that we had brought along for his benefit. These generally include feedback from his teaching team, the most recent Individualized Education Plan (IEP), recent therapy case notes, recent testing assessments, and a couple parent surveys he has us complete prior to the appointment. With that information fresh in his mind, he comes in and generally gets a feel for how we are feeling about our son's progress. From there, he does a neurological exam, a physical exam, and generally just interacts with our son to see for himself how he is progressing. We never feel rushed by him or like we are taking up too much time. After the exam, we generally ask questions and he reviews the options for changes that we may or may not want to make for our son's treatment.
I hope you're getting a sense of how thorough and invested this man is in what he does. It's important that you understand that before I continue with the story...
From the very beginning, our son has been a puzzle that no one can solve. No one can tell us why he is the way his is. They know it is neurologically based but he doesn't fit any syndrome or disorder or "spectrum". A misdiagnosis (with a different neurologist) sent us off on a wild goose chase to the Children's Hospital of Philadelphia with the warning that they were going to need to split our son's skull and insert spacers to allow it to grow properly. I was never so happy in my life to receive a misdiagnosis! Fortunately, that surgery was not required. At times, it feels as if we have been to every department and met every specialist at Geisinger Medical Center as we've searched for answers.
Somewhere along the way, we've learned to trust our instincts and began to openly advocate for what we wanted for our son. It has made a world of difference in his treatment and in his development. At our most recent specialist appointment, we again brought up our son's strange developmental cycle that always seems to involve a simultaneous regression in his speech; an increase in his drooling and clumsiness; and an amazing increase in developmental skills or abilities. Those within our circle of friends and family can attest to the fact that this pattern has been a consistent part of his development from early on. When we again brought this up to his doctor and mentioned the current severity of his blocking and stuttering, paired with the amazing burst of development, his answer surprised us. But only a little.
When an award winning doctor looks you in the eye and says "I don't know why this happens. I'm not experienced with this.", it's a little shocking. Apparently in his experience, a regression in development tends to be universal. He feels it is quite unusual for a child to experience a significant regression and also experience significant bursts of development in other areas. He can't explain why this is happening because he hasn't experienced this before. Several specialists in this field meet regularly to eat, chat, and discuss unique or unusual cases and get feedback from their peers. Our doctor promised to bring up our son's situation at the next luncheon.
Several things became very clear to me at this appointment. (1) If a respected specialist in his field can't explain why our son is the way his is, why should I allow myself to become frustrated and sad when I don't have the answers. (2) Our son is a unique and amazing individual made in love, with love, and for love. As his doctor stated, "He's just the nicest kid. I bet everyone just loves him." Yes. They really do doc. (3) We need to give ourselves credit for what we have accomplished with our son. We've asked questions, researched, advocated, and challenged. He continues to make progress though the challenge of drooling and stuttering and the inability to speak. He perseveres and feels good about himself and who he is as a person. That's a lot to celebrate. Finally, we don't have the answers but I see God in every step of this journey. He has been there from the beginning. Why do we experience bursts of development through the deepest of regressions? Because God knows I need the light. He knows I need to see a sign that things will get better, will improve, will change. It's His gift to me. It's a gift to us all. Our son is a gift. If you've met him, you know what I mean.
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