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.
Friday, January 23, 2015
Monday, January 5, 2015
New Year Resolutions
I'm not really one for making resolutions for the new year. If I see a problem, I attempt to resolve it. By nature, I'm a "fixer". I don't like chaos or disorder or uncertainty. Knowing my tendency to attempt to control chaotic events in my life, I sometimes think God looks down and says, "Oh daughter, when will you learn to give it to me completely. I've got this." Because I refuse to learn the lesson, it keeps being taught. Like a petulant child, I want to stomp my foot and scream "But I hate this lesson!"
Our youngest child is often the tool most utilized when attempting to teach me to turn it over to the Lord and let life play out as it will. His unpredictable developmental cycle is a constant source of worry, concern, and frustration for me. Just when it seems like things are stabilizing, his impulsiveness seems more in control, his health has improved, his agitation and frustration has minimized, the wheel will turn and a new laundry basket of issues will crop up. I know that given time and diligence, these new issues will resolve themselves. They always do. Yet, I feel anxious. Worried. Scared.
Over the last week or so, his stuttering has reached the worst level I've ever seen it. He is blocking to the point that his mouth moves, his muscles quiver, but nothing comes out. It is at its worst when he's tired. He doesn't seem to get frustrated or angry. It doesn't stop him from trying to express himself. But it worries me. I don't know why it's suddenly so bad. What triggers it? Why does it come and go indiscriminately? How will it impact him socially? Will it make him a target at school? Will it affect his self image and confidence? Will he ever out grow this?
I have to have faith. I have to believe and put it in the Lord's hands. I know that. I also know that when his language skills regress, other skills are developing and improving. It's his pattern. It's his normal cycle of abnormal development. Lately, we've seen an increase in his ability to delay gratification. When asked to wait (to speak, to get something, to do something, etc), he has been able to do so for short periods of time. This was previously absolutely impossible. He had no impulse control to delay that urge to meet his needs. He has recently had an increased social awareness of the impact of his behavior on himself and his peers. It is still a skill in development but it is a step in the right direction. Previously, he had no recognition that his behavior/choices had an impact on others. His math skills have progressed in a positive direction. He seems to have an increasing awareness of numbers and the relationship between them. His number sense was limited until recently.
As his mother, I need to have an awareness of where he is developmentally so that I can help him to reach his next goal and his full potential. As a child of God, I need to trust that the Lord has this. He will see us through whatever stumbling blocks are thrown in our way. As my son's primary cheerleader, I need to celebrate his new skills and accomplishments. I need to keep him working towards becoming the best HIM that he can possibly be. My job is to help our son (and myself) remember that he is a child of God and was created in His image with His purpose in mind. There is a bigger plan than I can see or imagine. We will get there together some day. I pray that I've learned to relax and enjoy the journey somewhere along the way. I guess that wouldn't be a bad resolution to make.
Our youngest child is often the tool most utilized when attempting to teach me to turn it over to the Lord and let life play out as it will. His unpredictable developmental cycle is a constant source of worry, concern, and frustration for me. Just when it seems like things are stabilizing, his impulsiveness seems more in control, his health has improved, his agitation and frustration has minimized, the wheel will turn and a new laundry basket of issues will crop up. I know that given time and diligence, these new issues will resolve themselves. They always do. Yet, I feel anxious. Worried. Scared.
Over the last week or so, his stuttering has reached the worst level I've ever seen it. He is blocking to the point that his mouth moves, his muscles quiver, but nothing comes out. It is at its worst when he's tired. He doesn't seem to get frustrated or angry. It doesn't stop him from trying to express himself. But it worries me. I don't know why it's suddenly so bad. What triggers it? Why does it come and go indiscriminately? How will it impact him socially? Will it make him a target at school? Will it affect his self image and confidence? Will he ever out grow this?
I have to have faith. I have to believe and put it in the Lord's hands. I know that. I also know that when his language skills regress, other skills are developing and improving. It's his pattern. It's his normal cycle of abnormal development. Lately, we've seen an increase in his ability to delay gratification. When asked to wait (to speak, to get something, to do something, etc), he has been able to do so for short periods of time. This was previously absolutely impossible. He had no impulse control to delay that urge to meet his needs. He has recently had an increased social awareness of the impact of his behavior on himself and his peers. It is still a skill in development but it is a step in the right direction. Previously, he had no recognition that his behavior/choices had an impact on others. His math skills have progressed in a positive direction. He seems to have an increasing awareness of numbers and the relationship between them. His number sense was limited until recently.
As his mother, I need to have an awareness of where he is developmentally so that I can help him to reach his next goal and his full potential. As a child of God, I need to trust that the Lord has this. He will see us through whatever stumbling blocks are thrown in our way. As my son's primary cheerleader, I need to celebrate his new skills and accomplishments. I need to keep him working towards becoming the best HIM that he can possibly be. My job is to help our son (and myself) remember that he is a child of God and was created in His image with His purpose in mind. There is a bigger plan than I can see or imagine. We will get there together some day. I pray that I've learned to relax and enjoy the journey somewhere along the way. I guess that wouldn't be a bad resolution to make.
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