The last few months have come with some real challenges. Throughout that time, we have also been blessed. It is important to not only face the trials in life, but to also give thanks for the grace and answers to prayer as they are presented. My youngest son has been one of my greatest teachers of that life lesson. He faces every challenge with a smile on his face. He embraces life with one hundred percent enthusiasm.
I am thankful for modern medicine and access to medical services. If my youngest son had been born in a different era, or even a different country, I have no doubt he would not have survived to see his eighth birthday. He had his first ear and respiratory infection when he was only two weeks old. In his first seven years of life, he has had five different surgical procedures and two sets of stitches. His asthma has required close monitoring, preventative efforts, and diligent treatment from the very beginning. Without his daily non-steroidal and asthma relief medicine, he would not be the relatively healthy boy he is today.
Almost daily, I'm grateful that our oldest son was born first. He has been such a bright, good natured, kind hearted, EASY child to raise. If we hadn't had him first, I would probably doubt my parenting choices even more than I already do. My background and training is in behavior modification and education. Parenting should be a no brainer. If I had had our youngest first, I have no doubt I would have torn myself apart with self doubt. Besides providing a measure of reassurance of our parenting skills, our oldest has also been a huge help with his little brother. Having his brother in his life has taught him compassion and patience that he might not otherwise have learned at the young age of twelve.
Because of our son's needs, I am grateful for my education and training. I originally went to college for early childhood and elementary education. While at school, I stumbled across a new exceptionalities concentration the university was starting. I was fortunate to be accepted into the pilot program. This training has allowed me to work closely with our son's therapists over the years. It has given me insight into their methods and his needs that I might not have had. It was by chance that I entered the world of corrections education and behavior modification. Without those experiences, and my masters in curriculum and instruction, I might not have the understanding needed to ask the questions needed to help my son. This training has been invaluable as we have become enmeshed in the world of formal education, special education, and school age therapy services.
I am grateful for a job that stimulates and challenges me. No two days are ever the same and it's definitely never boring. Most days, I feel like I am making a difference in the lives of my girls. I feel like working with my girls has taught me the patience and the skills needed to help me deal with my son and his needs. There are also days that I feel that he is better preparing me to deal with them. Isn't it funny how life doesn't give us what we want or expect, but rather what we need?
Finally, I am thankful for the love and support of family and friends. We definitely wouldn't be where we are today without them. Our church family has prayed for us every step of the way. Family, and our neighbors that have adopted us as family, have been there to watch the boys and give us a break from time to time; provide moral support; and even help transport our son to therapy sessions and appointments at the hospital. Friends and family have learned to administer breathing treatments and medication. They have listened and laughed and cried with us through the good times and the bad. I am grateful every day for their continued presence in our lives.
Lord, I know these are just the tip of the iceberg in terms of the blessings you have provided. There are more than I could put into words. Please continue to watch over us as we continue this journey. Guide on the path you would like us to follow. All things are possible through you.
Wednesday, November 27, 2013
Saturday, November 16, 2013
Helping or Hindering
Our trip into the world of medical intervention has been a bit of a roller coaster ride. It was one month ago today that we started our youngest son on the recommended Attention Deficit Disorder (ADD) medicine. Because of my strong reservations regarding medications, they started him at the lowest possible dose for his age and size. There have been two small increases since then, the last being this morning's dose. I will not give him another dose until I talk to his neurology team in the morning.
The very first time I gave our son his new medicine, I did so with equal parts hope and trepidation. He and I were spending a quiet day alone at home. I was planning on doing some housework and grading some papers. About mid-morning, I thought I should try a small experiment to see if I noticed any difference in his behavior. Typically, asking him to clean his play area in the basement results in whining, tears, and a long drawn out process that usually results in me "helping" him do most of the picking up and putting away. Usually, I have to identify one type of toy, for example blocks, and ask him to concentrate on picking up just those items. This process has helped me gain the most success when it comes to getting him to pick up after himself. It still takes hours. I'm not exaggerating! It is stressful and exhausting for both of us. On this "experimental morning", it took my son ONE HOUR to clean the basement. He was enthusiastic about going to clean it up. A couple times through the process he called me down to show me his organization techniques or to ask me to take some dirty clothes upstairs. AN HOUR! When he was finished, he came up and asked for lunch. After lunch he proceeded to voluntarily go clean his bedroom. I felt a mixture of relief, joy, and guilt. If this medicine was all it took to help him find his focus, why had I waited so long to give it to him? I wondered if I had been holding him back from his true potential. I was so relieved that it might be this simple.
By mid afternoon, the medicine had worn off. His brother and father came home. Life returned to our version of "normal". We went to our fire hall for our annual family dinner and hay ride. Our son vibrated! They warned us he may experience "rebound" energy when the medication wore off. I'm not sure if this was rebound energy or just plain old excitement and over stimulation from one of his favorite activities of the year. He was okay. His behavior was appropriate. He just bounced.
After a week and a half, I needed to check in with his neurology team regarding our progress. We had not seen any significant change in behavior or impulsivity after the first day. His team at school was reporting no change in behavior. Unfortunately, if anything, they reported that he seemed to need more non-verbal and verbal prompts than usual to help him stay on task. His neurology team doubled his initial dose upon hearing our report.
Family and friends soon began to comment on how much more focused our little guy seemed to be. He seemed more content with himself and proud of his accomplishments. The desire to clean up and keep things cleaned up continued after doubling the dosage. A new trend that concerned us a little began to emerge. He seemed much more intense in his need to complete tasks. If a job needed to be abandoned or postponed for a meal or another activity, he would prefer to skip the meal or activity rather than abandon or postpone his current task. He seemed to be displaying less impulsive behavior but seemed to be showing more obsessive behavior. We questioned if that was just personality traits emerging or if it could be a related side effect from the medicine.
School continued to report that they were seeing no improvement. They were continuing to need to provide a higher than usual number of verbal and non-verbal prompts to keep him on task. A team member that has been with him from the beginning also commented that he appears to be more disheveled and relayed an incident in which he became upset trying to remove his coat before it was even completely un-zippered. She also had concerns with his increase in "mouthing" objects like his clothing, papers, books, etc. These comments upset me. We were seeing definite improvement in some areas. Sure we had some concerns but I felt we have to be realistic. His issues are neurologically based. Medicine isn't going to be a panacea, a cure-all. Some of his "quirks" won't be cured by medicine. We have to be realistic in our expectations.
In light of the feedback from school, his neurology team decided to slightly elevate his dosage for a third time. I need to clarify that it is still a VERY low dose. Today was his first day on this new dosage. We had a breakfast fundraiser at our fire hall this morning so it was an ideal situation to test his response to the new dosage. For the most part, his response was very favorable. He did a series of small jobs with his "old ladies" including putting silverware in paper sleeves; helping set up tables; putting out creamers and sugars; and cleaning up afterwards. The only fly in the ointment was one of his "blow up" episodes towards the end of the breakfast. I was tied up cooking eggs and not paying attention because he had been kept busy all morning by the older ladies at the fire hall. I became aware that he was becoming over stimulated when I realized he was running around using a "fart book" behind people. When it escalated to doing it behind people his didn't know, I asked him to please return the book or give it to me to put away. He escalated very quickly. The old "rain man" repetitive phrase behaviors emerged. The glazed "I'm not really hearing you" look came into his eyes. At that point, I scooped him up and went out the back door. It took several minutes of quiet out back for him to regain his composure. He kept taking deep breaths and saying "I'm calm now." but continued crying and repeating the same phrases like a broken record. I said "Do you even know why you are this upset?" He told me no; threw his arms around my neck; and started to cry in earnest. It absolutely broke my heart because I genuinely think he had no idea why he was that worked up. Fortunately, he was able to regain control. He went back in and helped one of the older ladies begin to clean up her cart and table area without further incident but continued to look weepy for at least another ten to fifteen minutes. Where was this intensity coming from?
I very much blamed myself for the incident. It felt as if I had become too complacent with the medicine and took for granted that those who knew him would help keep an eye on him. I know that once he becomes over stimulated, he can't pull himself back without an explosion. Missing the signs that lead up to that, meant I missed my opportunity to prevent the explosion. I felt rotten. It was my fault, not his.
The rest of the day progressed pretty quietly. His dad was out hunting on the last day of archery season. His grandfather took his older brother out turkey hunting. He hung out with his grandmother and I at our house. There was an intensity to his interactions, an edge at times, but nothing that wasn't manageable. His grandparents stayed for dinner after everyone finally made it home. As a result, they got to bed about a half hour later than usual. An hour after that, he was still wide awake and buzzing. He came down to write a list of things he needed to do tomorrow. When I went to collect him to see if he would come cuddle with me to get him settled in for the night, he replied "I have to write this down to get these words out of my head." I was concerned. This is a guy who falls asleep literally within minutes of being put in bed. It was two hours past his bedtime and he had "words in his head?" After another half hour of cuddling and still no sleepiness, I asked his dad to get him a dose of children's Benadryl. Our neurologist had told us that some parents have had to resort to this after an adverse reaction to a medicine. Was that the case this time? As it kicked in, he finally asked me to tuck him in upstairs.
The ADD medicine should have been out of his system by mid afternoon. Was this a medicine side effect? Was it a neurological side effect from introducing the medicines into his system? Was it just a restless night? I don't know the answers to the many questions that the last month has given us. Why are we seeing progress but the school isn't? Why the increase in obsessive behaviors? Are the small gains we've seen worth the obsessive behaviors we've seen? Can this medicine have a long lasting boomerang effect that lasts for hours? Is this the wrong family of medicines for our child and his condition? Are we treating the correct neurologically rooted behavior? Most importantly, will this ever get easier? Will we ever experience "normal"? What will "normal" look like for us?
I will not be giving him any more doses of any medications until I personally talk to his neurological team. We need to have some hard questions answered. I know this is a process. I'm committed to seeing this through. I just pray we have made the right decision by going this route. If it isn't the right direction, I pray for clarity and insight. I most strongly pray for answers. In His time and in His way... I just pray it's sooner rather than later. Please Lord, let it be sooner.
The very first time I gave our son his new medicine, I did so with equal parts hope and trepidation. He and I were spending a quiet day alone at home. I was planning on doing some housework and grading some papers. About mid-morning, I thought I should try a small experiment to see if I noticed any difference in his behavior. Typically, asking him to clean his play area in the basement results in whining, tears, and a long drawn out process that usually results in me "helping" him do most of the picking up and putting away. Usually, I have to identify one type of toy, for example blocks, and ask him to concentrate on picking up just those items. This process has helped me gain the most success when it comes to getting him to pick up after himself. It still takes hours. I'm not exaggerating! It is stressful and exhausting for both of us. On this "experimental morning", it took my son ONE HOUR to clean the basement. He was enthusiastic about going to clean it up. A couple times through the process he called me down to show me his organization techniques or to ask me to take some dirty clothes upstairs. AN HOUR! When he was finished, he came up and asked for lunch. After lunch he proceeded to voluntarily go clean his bedroom. I felt a mixture of relief, joy, and guilt. If this medicine was all it took to help him find his focus, why had I waited so long to give it to him? I wondered if I had been holding him back from his true potential. I was so relieved that it might be this simple.
By mid afternoon, the medicine had worn off. His brother and father came home. Life returned to our version of "normal". We went to our fire hall for our annual family dinner and hay ride. Our son vibrated! They warned us he may experience "rebound" energy when the medication wore off. I'm not sure if this was rebound energy or just plain old excitement and over stimulation from one of his favorite activities of the year. He was okay. His behavior was appropriate. He just bounced.
After a week and a half, I needed to check in with his neurology team regarding our progress. We had not seen any significant change in behavior or impulsivity after the first day. His team at school was reporting no change in behavior. Unfortunately, if anything, they reported that he seemed to need more non-verbal and verbal prompts than usual to help him stay on task. His neurology team doubled his initial dose upon hearing our report.
Family and friends soon began to comment on how much more focused our little guy seemed to be. He seemed more content with himself and proud of his accomplishments. The desire to clean up and keep things cleaned up continued after doubling the dosage. A new trend that concerned us a little began to emerge. He seemed much more intense in his need to complete tasks. If a job needed to be abandoned or postponed for a meal or another activity, he would prefer to skip the meal or activity rather than abandon or postpone his current task. He seemed to be displaying less impulsive behavior but seemed to be showing more obsessive behavior. We questioned if that was just personality traits emerging or if it could be a related side effect from the medicine.
School continued to report that they were seeing no improvement. They were continuing to need to provide a higher than usual number of verbal and non-verbal prompts to keep him on task. A team member that has been with him from the beginning also commented that he appears to be more disheveled and relayed an incident in which he became upset trying to remove his coat before it was even completely un-zippered. She also had concerns with his increase in "mouthing" objects like his clothing, papers, books, etc. These comments upset me. We were seeing definite improvement in some areas. Sure we had some concerns but I felt we have to be realistic. His issues are neurologically based. Medicine isn't going to be a panacea, a cure-all. Some of his "quirks" won't be cured by medicine. We have to be realistic in our expectations.
In light of the feedback from school, his neurology team decided to slightly elevate his dosage for a third time. I need to clarify that it is still a VERY low dose. Today was his first day on this new dosage. We had a breakfast fundraiser at our fire hall this morning so it was an ideal situation to test his response to the new dosage. For the most part, his response was very favorable. He did a series of small jobs with his "old ladies" including putting silverware in paper sleeves; helping set up tables; putting out creamers and sugars; and cleaning up afterwards. The only fly in the ointment was one of his "blow up" episodes towards the end of the breakfast. I was tied up cooking eggs and not paying attention because he had been kept busy all morning by the older ladies at the fire hall. I became aware that he was becoming over stimulated when I realized he was running around using a "fart book" behind people. When it escalated to doing it behind people his didn't know, I asked him to please return the book or give it to me to put away. He escalated very quickly. The old "rain man" repetitive phrase behaviors emerged. The glazed "I'm not really hearing you" look came into his eyes. At that point, I scooped him up and went out the back door. It took several minutes of quiet out back for him to regain his composure. He kept taking deep breaths and saying "I'm calm now." but continued crying and repeating the same phrases like a broken record. I said "Do you even know why you are this upset?" He told me no; threw his arms around my neck; and started to cry in earnest. It absolutely broke my heart because I genuinely think he had no idea why he was that worked up. Fortunately, he was able to regain control. He went back in and helped one of the older ladies begin to clean up her cart and table area without further incident but continued to look weepy for at least another ten to fifteen minutes. Where was this intensity coming from?
I very much blamed myself for the incident. It felt as if I had become too complacent with the medicine and took for granted that those who knew him would help keep an eye on him. I know that once he becomes over stimulated, he can't pull himself back without an explosion. Missing the signs that lead up to that, meant I missed my opportunity to prevent the explosion. I felt rotten. It was my fault, not his.
The rest of the day progressed pretty quietly. His dad was out hunting on the last day of archery season. His grandfather took his older brother out turkey hunting. He hung out with his grandmother and I at our house. There was an intensity to his interactions, an edge at times, but nothing that wasn't manageable. His grandparents stayed for dinner after everyone finally made it home. As a result, they got to bed about a half hour later than usual. An hour after that, he was still wide awake and buzzing. He came down to write a list of things he needed to do tomorrow. When I went to collect him to see if he would come cuddle with me to get him settled in for the night, he replied "I have to write this down to get these words out of my head." I was concerned. This is a guy who falls asleep literally within minutes of being put in bed. It was two hours past his bedtime and he had "words in his head?" After another half hour of cuddling and still no sleepiness, I asked his dad to get him a dose of children's Benadryl. Our neurologist had told us that some parents have had to resort to this after an adverse reaction to a medicine. Was that the case this time? As it kicked in, he finally asked me to tuck him in upstairs.
The ADD medicine should have been out of his system by mid afternoon. Was this a medicine side effect? Was it a neurological side effect from introducing the medicines into his system? Was it just a restless night? I don't know the answers to the many questions that the last month has given us. Why are we seeing progress but the school isn't? Why the increase in obsessive behaviors? Are the small gains we've seen worth the obsessive behaviors we've seen? Can this medicine have a long lasting boomerang effect that lasts for hours? Is this the wrong family of medicines for our child and his condition? Are we treating the correct neurologically rooted behavior? Most importantly, will this ever get easier? Will we ever experience "normal"? What will "normal" look like for us?
I will not be giving him any more doses of any medications until I personally talk to his neurological team. We need to have some hard questions answered. I know this is a process. I'm committed to seeing this through. I just pray we have made the right decision by going this route. If it isn't the right direction, I pray for clarity and insight. I most strongly pray for answers. In His time and in His way... I just pray it's sooner rather than later. Please Lord, let it be sooner.
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