It has been a really nice Christmas break for the whole family. We all needed the time away from school and work to rest, relax, and refuel. Other than host holiday dinners and gatherings, we have done very little. It was just what the doctor ordered.
Yesterday was our follow up with our youngest son's neurology team. They are in agreement that we haven't yet met the appropriate level for his new medicine to effectively address the concerns the school has regarding his impulsiveness and lack of focus. As a result, they bumped his current medicine up to the next level. We also discussed, and the neurology team confirmed, that there are several areas of concern that medicine cannot rectify. These "quirks" are simply unique to his neurological "wiring".
Two "quirks" that we continue to address on a fairly consistent basis are his lack of boundaries with other people and his lack of awareness of social cues. Both of these issues came to a head right before the Christmas break. The school received a letter from another parent regarding our youngest son. Apparently, he been pulling on the hood or stealing the hat of a younger student almost every day while waiting for the bus in the afternoon. The kindergartner was so afraid of our son that they were having trouble getting him to come to school. In today's day and age of bullying awareness, this letter was taken quite seriously by the teaching staff.
I know that many of those reading this will come down on one of two sides of the issue. One camp will feel terrible for the little guy who was too afraid to want to come to school. The other camp will be thinking "Come on. Terrified of a kid stealing your hat or pulling on your hood? That's just ridiculous!" Fortunately, we were able to see both sides of the issue. As his parents, there were bigger issues at work than the obvious.
The first issue is one that we continue to have to address on a fairly regular basis. Our son is very tall for his age. In addition, at different stages in his unique developmental cycle, he stutters and drools. Although he has average intelligence, his gross motor and fine motor delays combined with his other developmental quirks could lead someone to perceive him as "slow" or mentally deficient. These factors, taken all together, could be very intimidating to a little kindergartner who may not have much experience with other children with special needs.
Besides his unique physical issues that could intimidate a younger student, you have to factor in our sons "social issues". He just doesn't grasp the importance of boundaries. If he likes you, he thinks nothing of invading your personal space; kissing you; touching you; or otherwise potentially making a person uncomfortable. In addition, if the person in question were to give off obvious nonverbal signs of discomfort with our son's actions, he wouldn't understand them. Pulling back or away has no meaning for him. Facial displays of disgust or concern have little impact on him. He just doesn't grasp their meaning. If the younger child had not openly expressed concern for our son's behavior, he would not have comprehended that the child was upset.
Fortunately, when our oldest son was much younger, he was more sensitive by nature than our youngest son. Our oldest was the child who wore his heart on his sleeve. His feelings were easily hurt by other kids when they were rude or disrespectful. We had a time period when he didn't want to go to school because of the actions of one or two other kids. Fortunately, he learned to grow a tougher skin, so to speak. He has learned to take other people in stride without taking it to heart. That experience with our oldest gave us a greater insight and empathy for what the other parents may have been going through with their own child.
In this particular case, our youngest son's Title I teacher (an angel) once again took the lead in dealing with the problem. She took him down to the classroom of the other student and addressed the issue with the two of them. When our son realized that the other child was very upset with his behavior, he was devastated. He apologized and seemed to take it very seriously. His teacher filled me in on what had happened by email.
In the meantime, the school had a half day while I had a full day of work. I forewarned my husband that there had been an issue at school that I would address when I got home. I asked him to confiscate our son's Kindle until I had a chance to talk to him. He attempted to talk to my husband about the issue but kept telling him "I can't talk to you. You won't understand. I want to wait and tell Momma." As a result, my husband left this issue go until I had the opportunity to get home and talk with him.
When I arrived home, our son came stomping up the basement steps so I asked him to come see me. He initially said he didn't want to but did anyway. I started the conversation by pulling him onto my lap and telling him that I loved him. I would always love him, no matter what. I then asked him if he had anything to tell me. Well, the flood gates opened! Out it all came. We discussed that he needed to keep his hands to himself and not touch other kids at school (this is NOT a new conversation!). In addition, we discussed the fact, that he was a very big boy and that could be scary to a little kid who was much smaller. We also discussed the fact the other boy had been so scared of him that he didn't want to go to school. He took it all very seriously. He came up with the idea of writing an apology card to the other student. Because he had lost recess for the week at school, we mirrored the consequences by taking away his Kindle for the same time period. Everyone involved, the teaching staff, his support staff, and ourselves agreed that we probably wouldn't have to address this particular behavior in the future because he had concretely been able to see the impact of his behavior. It would have a long term impact on him.
I offer this small scenario as an example of how children and their parents encounter very similar circumstances on a fairly regular basis. This particular scenario isn't unique to our son and his issues. What is unique is the fact that we will have to have a similar conversation with our son regarding his boundaries again in the near future. Probably many times in the future. Yet, it is his lack of boundaries that endears him to so many who come in contact with him. As one woman told me, "He is so open. His heart is blatantly loving and open to loving others." Somehow we have to help him learn to balance this love for others with a recognition that not everyone want him to be in their space and not everyone is open to wanting that level of love and affection. It's a hard balance for adults to maintain, let alone an eight year old who naturally lack such awareness.
We will continue to support our little man as he learns to navigate this complicated world we are living in. I pray he always maintains that loving empathetic heart for others. I also pray that he develops an awareness of the social cues that allow him to successfully navigate the world with his peers. We will be there on the journey to help him along the way.
Friday, December 27, 2013
Wednesday, November 27, 2013
Thanksgiving
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.
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.
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.
Friday, October 25, 2013
To Medicate or Not to Medicate... Is No Longer a Question
Yesterday was a terribly long day. I lived in dread of the meeting with our youngest son's neurology team after work and school. We had some very difficult decisions to make. They were decisions that we had been putting off for some time.
Our son's primary neuro developmentalist is someone we trust implicitly. He is extremely knowledgeable. His focus is always on the individual child, not the diagnosis. The physician assistant (PA) we have been working with is also extremely knowledgeable. In addition, she is one of the most down to earth, personable people I've ever worked with. She hears your concerns and knows just how to address them. Her advise is practical but empathetic. We trust what they advise. I just didn't want to hear what they advised.
As I have alluded to in recent months, our son had been going through a difficult developmental stage. He was seeking independence and the limitations he encountered made him extremely frustrated. The behaviors we were experiencing were a direct reflection of that frustration. Starting the new school year in the midst of that developmental stage, paired with some administrative and staffing changes at his school resulted in a pretty explosive little guy. Thankfully, our son's therapy team had remained unchanged. These angels know our son well and love him dearly. They took the lead in educating his new team at school on the quirks and behaviors that are particular to our son. His Title I reading teacher shared the behavior system that she had successfully implemented with our son last year. This system focused almost exclusively on his successes. As a team, we implemented this system both at home and at school. The changes in his behavior and frustration have been amazing. His behavior has improved and his frustration levels have decreased. Things seem to be coming more in line with the little man that we all knew and loved previously.
We are fortunate that the behavioral difficulties we were experiencing have diminished greatly. Unfortunately, as his behavior has improved and returned to an expected level for a little guy his age, it has made other areas of concern more blatantly obvious. People will often say that our son lacks focus. I would argue that the opposite is true. Our son is intensely focused, just not on the things he is expected to be focused on. He can not determine what is important stimulation in the environment and what is not. The guy running down the road is just as important, if not more, than his Father telling him to please not point the fork in his hand at his eye. He zones out to a degree that he fails to acknowledge the new stimulation coming at him, whether important or not. I could give you dozens of examples of nearly avoided accidents or minor injuries that have occurred within just the last week or so. One night this week, within two feet of his father, in less that one minute of turning around and turning back, he ate his brother's bedtime allergy/asthma pills. Not because he wanted them but because they were there and he mindlessly put them in his mouth. It was an unconscious impulse. Only through constant, diligent supervision do we manage to keep him safe from himself. It is exhausting.
Our son has been bringing home great grades from school. He is doing very well academically. Unfortunately, the degree of difficulty and complexity is coming at a faster pace. Our son is struggling significantly with multi-step processing type activities. We have to break them down into simple steps, build upon them, and combine the processes to help him reach the conclusions that they want him to reach. For most kids, it is supposed to be a quick homework activity. It is becoming more of a challenge for us to look at what is involved; identify what is the root activity or processes behind the assignment; then break it down to the level that he can manage. He cannot make the jump to those higher level processes yet. I know he will if given enough time. They move forward before he is at that point though. He is just beginning to be quickly getting left behind. If not resolved now, it will only get worse.
His neurologist told us he is a prime candidate for medical therapy for several reasons. One, he has no aggressive, unexplained angry tendencies. He is a sweet natured guy. Two, he has a behavior system in place and his behaviors are now well maintained. Three, communication and cooperation between the school and home are in place and well utilized. Finally, in light of all the other points, he still struggles with impulsivity and distractability to a degree that it is impacting his education and his safety. We had to agree. It was the best decision for his education, his safety, and the sake of our family. We cannot continue to maintain this level of hyper vigilance to try to stay on top of everything. It is taking it's toll on all of us. I don't know how much longer we could continue on the path we were on.
With that said, last night was a long night. Our son fell asleep on the way home from his appointment and didn't wake up even after being carried to bed. He was exhausted. I'm grateful. Throughout the consultation, I had held it together but I couldn't hold it in any longer. I don't want these chemicals in my beautiful baby's body. What if it changes who he is? What if it takes away his sparkle, that light that is the core of who he is? I could never forgive myself. I cried and cried and cried. Not big sobbing boohoos but silent, uncontrolled tears rolling down my face. My husband kept asking what was wrong. All I could say was "I don't know. I'm just so sad." I knew our decision was logically the right one. It just wasn't the one I wanted to make. So I gave myself a night to feel sorry for myself, for us, and for the situation. I gave myself a night to cry and feel sad.
Today I woke up, put on my "big girl pants" and did what needed to be done. I emailed the team at school and advised them of our decision. We filled the prescription. Tomorrow morning, I will start him on his new journey with his new medication. I will monitor how things go; ask questions as needed; and do what needs to be done. There is no other choice. There is no giving up or giving in. It's not an option. He's too important for less than my best. In the meantime, I will pray. I will trust that the Lord has a plan. He keeps bringing me to these places in life that I don't want to go but every time he does, it better prepares me for the mission I'm on. I will trust that he will do the same this time as well. My little man is one of the biggest challenges in my life but he is also one of the GREATEST joys in my life. I had my night to cry. Now I pray and kick butt when needed. We've got a journey to go on!
Our son's primary neuro developmentalist is someone we trust implicitly. He is extremely knowledgeable. His focus is always on the individual child, not the diagnosis. The physician assistant (PA) we have been working with is also extremely knowledgeable. In addition, she is one of the most down to earth, personable people I've ever worked with. She hears your concerns and knows just how to address them. Her advise is practical but empathetic. We trust what they advise. I just didn't want to hear what they advised.
As I have alluded to in recent months, our son had been going through a difficult developmental stage. He was seeking independence and the limitations he encountered made him extremely frustrated. The behaviors we were experiencing were a direct reflection of that frustration. Starting the new school year in the midst of that developmental stage, paired with some administrative and staffing changes at his school resulted in a pretty explosive little guy. Thankfully, our son's therapy team had remained unchanged. These angels know our son well and love him dearly. They took the lead in educating his new team at school on the quirks and behaviors that are particular to our son. His Title I reading teacher shared the behavior system that she had successfully implemented with our son last year. This system focused almost exclusively on his successes. As a team, we implemented this system both at home and at school. The changes in his behavior and frustration have been amazing. His behavior has improved and his frustration levels have decreased. Things seem to be coming more in line with the little man that we all knew and loved previously.
We are fortunate that the behavioral difficulties we were experiencing have diminished greatly. Unfortunately, as his behavior has improved and returned to an expected level for a little guy his age, it has made other areas of concern more blatantly obvious. People will often say that our son lacks focus. I would argue that the opposite is true. Our son is intensely focused, just not on the things he is expected to be focused on. He can not determine what is important stimulation in the environment and what is not. The guy running down the road is just as important, if not more, than his Father telling him to please not point the fork in his hand at his eye. He zones out to a degree that he fails to acknowledge the new stimulation coming at him, whether important or not. I could give you dozens of examples of nearly avoided accidents or minor injuries that have occurred within just the last week or so. One night this week, within two feet of his father, in less that one minute of turning around and turning back, he ate his brother's bedtime allergy/asthma pills. Not because he wanted them but because they were there and he mindlessly put them in his mouth. It was an unconscious impulse. Only through constant, diligent supervision do we manage to keep him safe from himself. It is exhausting.
Our son has been bringing home great grades from school. He is doing very well academically. Unfortunately, the degree of difficulty and complexity is coming at a faster pace. Our son is struggling significantly with multi-step processing type activities. We have to break them down into simple steps, build upon them, and combine the processes to help him reach the conclusions that they want him to reach. For most kids, it is supposed to be a quick homework activity. It is becoming more of a challenge for us to look at what is involved; identify what is the root activity or processes behind the assignment; then break it down to the level that he can manage. He cannot make the jump to those higher level processes yet. I know he will if given enough time. They move forward before he is at that point though. He is just beginning to be quickly getting left behind. If not resolved now, it will only get worse.
His neurologist told us he is a prime candidate for medical therapy for several reasons. One, he has no aggressive, unexplained angry tendencies. He is a sweet natured guy. Two, he has a behavior system in place and his behaviors are now well maintained. Three, communication and cooperation between the school and home are in place and well utilized. Finally, in light of all the other points, he still struggles with impulsivity and distractability to a degree that it is impacting his education and his safety. We had to agree. It was the best decision for his education, his safety, and the sake of our family. We cannot continue to maintain this level of hyper vigilance to try to stay on top of everything. It is taking it's toll on all of us. I don't know how much longer we could continue on the path we were on.
With that said, last night was a long night. Our son fell asleep on the way home from his appointment and didn't wake up even after being carried to bed. He was exhausted. I'm grateful. Throughout the consultation, I had held it together but I couldn't hold it in any longer. I don't want these chemicals in my beautiful baby's body. What if it changes who he is? What if it takes away his sparkle, that light that is the core of who he is? I could never forgive myself. I cried and cried and cried. Not big sobbing boohoos but silent, uncontrolled tears rolling down my face. My husband kept asking what was wrong. All I could say was "I don't know. I'm just so sad." I knew our decision was logically the right one. It just wasn't the one I wanted to make. So I gave myself a night to feel sorry for myself, for us, and for the situation. I gave myself a night to cry and feel sad.
Today I woke up, put on my "big girl pants" and did what needed to be done. I emailed the team at school and advised them of our decision. We filled the prescription. Tomorrow morning, I will start him on his new journey with his new medication. I will monitor how things go; ask questions as needed; and do what needs to be done. There is no other choice. There is no giving up or giving in. It's not an option. He's too important for less than my best. In the meantime, I will pray. I will trust that the Lord has a plan. He keeps bringing me to these places in life that I don't want to go but every time he does, it better prepares me for the mission I'm on. I will trust that he will do the same this time as well. My little man is one of the biggest challenges in my life but he is also one of the GREATEST joys in my life. I had my night to cry. Now I pray and kick butt when needed. We've got a journey to go on!
Friday, October 4, 2013
When Your Best Just Isn't Enough
Admitting defeat doesn't come easily to me. Recently, I have had to admit failure in two areas that I hold closest to my heart. One area is at work with the girls that I love. The other is at home with my youngest son that I love. Both failures weigh heavily on my heart.
A phrase that is commonly used in our home is "A job isn't worth doing if it isn't done well." We try to live by those words. Doing a job well is easy when you love what you do. I do. Most days, I love my job. I teach court committed female offenders. Some of them have been committed to our program by children and youth services because of family issues or conflicts. Others have been committed by juvenile probation for committing a crime of some sort. For fifteen years, I have worked almost exclusively with teenage female offenders. I love them. They are my girls. The way I feel about them doesn't excuse the choices they have made in the past. It doesn't excuse the mistakes they will probably make in the future. Instead, it sees down into the heart of who they are, a lot wounded, a lot angry, a lot lacking in basic life and social skills. I love them. They are my girls.
There are days I think I'd like to quit my job to become a Wal-Mart greeter. It might be easier than trying to teach seventeen and eighteen year-olds with fifth grade reading levels subjects that hold no interest for them. It might be easier than trying to get girls who are supposed to be seniors earning twenty-four credits to graduate when they only have eight or nine earned. They lack the credits to graduate and lack the skills to pass the General Equivalency Diploma (GED) exam. I'm supposed to motivate them to want to attend school when they know in their hearts that there is very little they or I can do for them. Ironically, somehow, I often succeed and they try. They try to do work that they see no purpose in. They try to work towards a goal when they know they are going home to the same situations that led them to where they are. It's these girls that keep me motivated to keep trying to reach one more girl, to make a difference in one more life. Who knows where her life may lead? She may become something phenomenal. She may become the mother of someone that changed all our lives for the better. Wouldn't I want someone to care that much for my child? It just so happens that I do. I want that for all of our children.
I have recently faced some disheartening challenges. I have had several girls fail at our program that I had invested considerable time, energy, and love into. They had to leave for more restrictive placement because they couldn't make the changes that were needed for them to succeed. These failures weigh heavily on my heart. My last words to the one girl were "I love you." She replied "I know. I love you too." It broke my heart but it's been broken many times by many girls.
We have had to face the fact that our sons impulsiveness, unpredictability, and inability to focus has worn us all down to almost nothing. We've implemented behavior plans, shared information with the school, and maxed out our resources. His behavior has shown some improvement. He's bringing home almost all As on his classwork. Things have even gotten better on the bus. None of that changes the constant need to supervise him to ensure his safety from his own impulsive choices. None of that changes his inability to focus. None of that changes the anxiety symptoms he is beginning to display from constantly trying to do what is expected of him when his body and mind aren't prepared or capable of doing what is being asked on him. In light of the summer and fall that we have faced, we've asked for a consult with his neurological team. They want to gather information from everyone involved but have forewarned us that they are strongly leaning towards the need for medications to help him gain a measure of control over his impulsiveness. I do not want to put chemicals into his body. It is one of my biggest fears. There are too many "what ifs". Unfortunately, barring any new ideas or recommendations, we feel we may have maximized our resources.
We are all exhausted. Very, very exhausted. I've had to put them in the Lord's hands. I can give all of myself to my girls and to my son. I can guide and lead and love. Ultimately, they must choose the paths they will follow. I have to trust that the Lord will be there if and when I fail them. I have to have faith that something bigger than myself is at work. Please Lord, watch over my kids. They need your intervention and love.
A phrase that is commonly used in our home is "A job isn't worth doing if it isn't done well." We try to live by those words. Doing a job well is easy when you love what you do. I do. Most days, I love my job. I teach court committed female offenders. Some of them have been committed to our program by children and youth services because of family issues or conflicts. Others have been committed by juvenile probation for committing a crime of some sort. For fifteen years, I have worked almost exclusively with teenage female offenders. I love them. They are my girls. The way I feel about them doesn't excuse the choices they have made in the past. It doesn't excuse the mistakes they will probably make in the future. Instead, it sees down into the heart of who they are, a lot wounded, a lot angry, a lot lacking in basic life and social skills. I love them. They are my girls.
There are days I think I'd like to quit my job to become a Wal-Mart greeter. It might be easier than trying to teach seventeen and eighteen year-olds with fifth grade reading levels subjects that hold no interest for them. It might be easier than trying to get girls who are supposed to be seniors earning twenty-four credits to graduate when they only have eight or nine earned. They lack the credits to graduate and lack the skills to pass the General Equivalency Diploma (GED) exam. I'm supposed to motivate them to want to attend school when they know in their hearts that there is very little they or I can do for them. Ironically, somehow, I often succeed and they try. They try to do work that they see no purpose in. They try to work towards a goal when they know they are going home to the same situations that led them to where they are. It's these girls that keep me motivated to keep trying to reach one more girl, to make a difference in one more life. Who knows where her life may lead? She may become something phenomenal. She may become the mother of someone that changed all our lives for the better. Wouldn't I want someone to care that much for my child? It just so happens that I do. I want that for all of our children.
I have recently faced some disheartening challenges. I have had several girls fail at our program that I had invested considerable time, energy, and love into. They had to leave for more restrictive placement because they couldn't make the changes that were needed for them to succeed. These failures weigh heavily on my heart. My last words to the one girl were "I love you." She replied "I know. I love you too." It broke my heart but it's been broken many times by many girls.
We have had to face the fact that our sons impulsiveness, unpredictability, and inability to focus has worn us all down to almost nothing. We've implemented behavior plans, shared information with the school, and maxed out our resources. His behavior has shown some improvement. He's bringing home almost all As on his classwork. Things have even gotten better on the bus. None of that changes the constant need to supervise him to ensure his safety from his own impulsive choices. None of that changes his inability to focus. None of that changes the anxiety symptoms he is beginning to display from constantly trying to do what is expected of him when his body and mind aren't prepared or capable of doing what is being asked on him. In light of the summer and fall that we have faced, we've asked for a consult with his neurological team. They want to gather information from everyone involved but have forewarned us that they are strongly leaning towards the need for medications to help him gain a measure of control over his impulsiveness. I do not want to put chemicals into his body. It is one of my biggest fears. There are too many "what ifs". Unfortunately, barring any new ideas or recommendations, we feel we may have maximized our resources.
We are all exhausted. Very, very exhausted. I've had to put them in the Lord's hands. I can give all of myself to my girls and to my son. I can guide and lead and love. Ultimately, they must choose the paths they will follow. I have to trust that the Lord will be there if and when I fail them. I have to have faith that something bigger than myself is at work. Please Lord, watch over my kids. They need your intervention and love.
Friday, September 6, 2013
Attention Deficit Disorder
It usually happens with those who only know us casually. After spending some time with our family, the question is often posed "So what is his diagnosis." In other words, they now something is a little different about our son but they can't definitively say what that difference is and they are seeking some clarity. I'm not offended by such questions. I just don't know how to respond. More often than not, I reply "I don't know." or "He has global developmental delays." The reality is our son has only minor special needs but taken all together, they are quite frustrating to deal with.
Our son has been diagnosed with developmental motor coordination disorder, congenital deformity of the knee joint, congenital pes planus, fluency disorder, expressive language disorder, hypotonia, tall stature (yes, an actual diagnosis???), and attention deficient disorder. In other words, they don't really know why he is the way he is. They are describing his symptoms, his behaviors, and his physicality but they don't have a "syndrome" or specific disorder that he falls into. This has been a source of serious frustration for me. If I had a specific diagnosis, I might be able to research it, work with it, and attempt to make it better. Instead, I'm left with this list of symptoms that presented together can be deceptively mild or overwhelmingly difficult depending on the day.
The diagnosis that I really try not to mention to people is attention deficit disorder. In the United States, it seems that every other boy on the street has been diagnosed with this disorder. People don't really seem to take it seriously as a result. Unless your child is twitching and jittering, many people think you are looking for an excuse for your child's misbehavior or failure to succeed. The reality is his therapists and neurologist have been trying to lead me to that diagnosis for a long time. I have been extremely resistant. I work in education. I know what an ADD diagnosis means. That kid is trouble. He's going to disrupt your class and take away time from your other students. His parents don't have any control over him and need someone to blame for their lack of parenting skills. Sure, another boy with ADD.
Our oldest son is extremely active, both verbally and physically. He never sits still. If he does, his leg is jittering. He talks all the time. Since he was little, we have had him in sports and activities to help burn off his excess energy. We keep him busy physically and mentally to help wear him out. Since birth, he hasn't slept well because he can't lay still and actually sleep. Is he ADD? No. I'd say no. In school, he has no trouble sitting still. He can focus on the teacher, the lessons, and the rules. His grades are amazing. He's just a high energy kid.
Conversely, our youngest son is not a bundle of nervous energy. He tends to zone out and fixate on things. When he does go into a manic mode, it is very hard to pull him out of it. His energy and movement at those times seems very erratic and uncontrolled. In class, he has trouble sitting in his seat. He wants to jump up and move impulsively on a whim. If he has something to say, he blurts it out impulsively without any thought to wait his turn or ask for permission. While reading, his head is turned to the page but his eyes are darting everywhere except for the page he's supposed to be reading. If there is something in front of him that interests him, it is nearly impossible to keep him from touching it or holding it even if told explicitly not to. He responds to high energy and over-stimulating circumstances by increasing his energy level to match that of the current activity. Unfortunately, he has a very difficult time bringing his level of energy back to what it should be without an explosive episode. Is he ADD? It took me a LONG time to admit it but yes. I think he is.
An ADD diagnosis is one of those diagnosis that seems to come with a lot of judgment from those in the community. I've been told that our son doesn't seem that bad. Are we sure he's ADD? I've been told that kids his age are supposed to be active. Are we sure he's ADD? On the other hand, the school has brought up time and time again that his lack of focus is impeding his learning potential. He's average intelligence and should be performing at that level but his lack of focus interferes. I know. The fact that we don't know what is going on neurologically with him keeps me from wanting to confuse the issue more by adding chemicals to his system. If and when we absolutely have no other options, we may consider medication. Until that time, I'm sorry. The school and we, his family, will just have to work our tails off to help him succeed.
I strongly dislike an ADD diagnosis because of the judgment that comes along with it. The diagnosis though has opened doors for more interventions and services at school that he didn't qualify for before the diagnosis. The adjustment to the new school year has been very rocky so far. It has not been going well. We will continue to work with our little man to help him learn self control, self monitoring, and self sufficiency. Until that is achieved, we will support him and reassure him that we love him whether he is doing well or struggling. Our job is to help him grow into the man that he is supposed to become. It is exhausting. I pray every single day for the strength and fortitude to get it done. Please Lord help us be the very best parents that we can be. We definitely aren't the parents we envisioned ourselves to be but hopefully we are the parents he needs us to be. Guide us through this journey. It has been a long one and we have a long way to go yet.
Our son has been diagnosed with developmental motor coordination disorder, congenital deformity of the knee joint, congenital pes planus, fluency disorder, expressive language disorder, hypotonia, tall stature (yes, an actual diagnosis???), and attention deficient disorder. In other words, they don't really know why he is the way he is. They are describing his symptoms, his behaviors, and his physicality but they don't have a "syndrome" or specific disorder that he falls into. This has been a source of serious frustration for me. If I had a specific diagnosis, I might be able to research it, work with it, and attempt to make it better. Instead, I'm left with this list of symptoms that presented together can be deceptively mild or overwhelmingly difficult depending on the day.
The diagnosis that I really try not to mention to people is attention deficit disorder. In the United States, it seems that every other boy on the street has been diagnosed with this disorder. People don't really seem to take it seriously as a result. Unless your child is twitching and jittering, many people think you are looking for an excuse for your child's misbehavior or failure to succeed. The reality is his therapists and neurologist have been trying to lead me to that diagnosis for a long time. I have been extremely resistant. I work in education. I know what an ADD diagnosis means. That kid is trouble. He's going to disrupt your class and take away time from your other students. His parents don't have any control over him and need someone to blame for their lack of parenting skills. Sure, another boy with ADD.
Our oldest son is extremely active, both verbally and physically. He never sits still. If he does, his leg is jittering. He talks all the time. Since he was little, we have had him in sports and activities to help burn off his excess energy. We keep him busy physically and mentally to help wear him out. Since birth, he hasn't slept well because he can't lay still and actually sleep. Is he ADD? No. I'd say no. In school, he has no trouble sitting still. He can focus on the teacher, the lessons, and the rules. His grades are amazing. He's just a high energy kid.
Conversely, our youngest son is not a bundle of nervous energy. He tends to zone out and fixate on things. When he does go into a manic mode, it is very hard to pull him out of it. His energy and movement at those times seems very erratic and uncontrolled. In class, he has trouble sitting in his seat. He wants to jump up and move impulsively on a whim. If he has something to say, he blurts it out impulsively without any thought to wait his turn or ask for permission. While reading, his head is turned to the page but his eyes are darting everywhere except for the page he's supposed to be reading. If there is something in front of him that interests him, it is nearly impossible to keep him from touching it or holding it even if told explicitly not to. He responds to high energy and over-stimulating circumstances by increasing his energy level to match that of the current activity. Unfortunately, he has a very difficult time bringing his level of energy back to what it should be without an explosive episode. Is he ADD? It took me a LONG time to admit it but yes. I think he is.
An ADD diagnosis is one of those diagnosis that seems to come with a lot of judgment from those in the community. I've been told that our son doesn't seem that bad. Are we sure he's ADD? I've been told that kids his age are supposed to be active. Are we sure he's ADD? On the other hand, the school has brought up time and time again that his lack of focus is impeding his learning potential. He's average intelligence and should be performing at that level but his lack of focus interferes. I know. The fact that we don't know what is going on neurologically with him keeps me from wanting to confuse the issue more by adding chemicals to his system. If and when we absolutely have no other options, we may consider medication. Until that time, I'm sorry. The school and we, his family, will just have to work our tails off to help him succeed.
I strongly dislike an ADD diagnosis because of the judgment that comes along with it. The diagnosis though has opened doors for more interventions and services at school that he didn't qualify for before the diagnosis. The adjustment to the new school year has been very rocky so far. It has not been going well. We will continue to work with our little man to help him learn self control, self monitoring, and self sufficiency. Until that is achieved, we will support him and reassure him that we love him whether he is doing well or struggling. Our job is to help him grow into the man that he is supposed to become. It is exhausting. I pray every single day for the strength and fortitude to get it done. Please Lord help us be the very best parents that we can be. We definitely aren't the parents we envisioned ourselves to be but hopefully we are the parents he needs us to be. Guide us through this journey. It has been a long one and we have a long way to go yet.
Thursday, July 4, 2013
Celebrating Independence
It's 5 am on Independence Day, July 4, and an aging bone structure and a whirling mind have me wide awake. I recently wrote about my youngest son's struggle for independence from an unfair and oppressive regime (we, his parents). In honor of our country's independence, I am choosing to celebrate the victorious battles for independence in this long and often painful war.
Last weekend, my family went to our cabin on the west rim of the Pennsylvania grand canyon. Our cabin is on the second highest point on the west rim of this beautiful mountain chain. It has no running water or electricity. We use a hand pump from a well for water. Sometimes it gets too dry in the summer months, then we have to locate known natural springs and fill buckets with water. An outhouse and outdoor hanging bucket/shower nozzle are our hygiene facilities. Propane tanks fuel a refrigerator and stove. It is silent and simple and serene. My children become totally different people up in these mountains. They play together peacefully, using their imaginations. It is here, in this setting, that my son struck a blow for independence. It was a powerful moment for us all.
As I have discussed in the past, my youngest has fine motor and gross motor coordination issues. One area that has been a consistent struggle is one that comes very simply for many children. He could not coordinate his feet in the up/down/circle/rotation manner required to peddle a bicycle. As a toddler, we bought him a three wheeler, one that was low to the ground, sturdy, and used by most boys to tear around and get into serious trouble. He could never figure out the movement needed to make it go. We would crawl along beside him, moving his feet in the pattern needed to make it move, but as soon as we would let go, his feet would fly off the peddles and he would loose the rhythm. He learned early on to coax his older brother into pushing him along on it. The two of them would zip along laughing and squealing. Tons of fun for them both but not very productive for learning to master the bike.
As stated previously, our son has been consistently above average in height for his age. Because of this, it hasn't been possible for him to continue working on a bicycle that is stage appropriate for him. He has been forced by necessity to move on to bigger bikes before he was capable of riding them. His current bike is a standard child's bike with training wheels. My husband has the training wheels set in such a way that there is very little "wiggle room". They keep him upright. He just has to focus on the machinations of peddling. Up until last week, this skill was beyond his abilities. But up in these beautiful mountains, our boy finally put all the pieces together and learned to peddle. You may be thinking, "Big deal lady. He's seven. He's kinda old to be celebrating learning to peddle a bike with training wheels." AH! But this is a step toward independence! You don't know how many times we have walked along beside him, trying to steer the bike with one hand, while attempting to help him move his feet in the right pattern, while trying to walk/jog beside him. You didn't see the absolute joy on his face. You didn't hear him chanting to himself as he peddled along, "I can do it! I can do it!" You didn't see the pride beaming from that beautiful face after his brother ran back to the cabin to get his Dad to come see him riding independently down that solitary road in the mountains. If you did, you would have celebrated too. Pride. Independence. Success.
There have been many other little steps towards independence over the last few weeks. He drew an octopus family; cut them out; and used only a tiny dab of glue to turn them into Popsicle stick puppets. In the past, there would have been a mountain of paste on the table, marker/crayon written all over the table, and paper scraps everywhere from the failed attempts to cut them out. But this time, there was success. A battle won for independence. He has been writing cards and letters, and signs CONSTANTLY this summer. Last week he declared it was "brudder's day" and made his older brother a card to celebrate. Two days ago, he made a sign asking the vampires to not hurt his brother's girlfriend. (??) Yesterday, he made me a card thanking me for making beef and noodles and using my "brane" to help him. Writing used to be a huge area of concern for us. It was such a struggle. Now he wants to do it all the time. It's still difficult to read at times, and not totally age appropriate yet, but it's a battle won in the war for independence.
Last night, his older brother had an open track event at a local school. We all went to support him and cheer him on. Our youngest son stood by the gate to the track while we sat in the stands. He cheered for his brother and hugged him in celebration after every event. As the evening began to wind down, our youngest ran to us and declared that he wanted to run too. It gave me pause. Should we let him? Could he do it? What if he lagged far behind and was embarrassed? What if he fell and hurt himself? Because it is an open event for all ages, we told him yes. Next time we came, we would sign him up for the 50 meter and the 100 meter. He is sooo excited. But he really wants to run the hurdles. *sigh* We told him let's take it one step at a time. Knowing our boy and his battles for independence, knowing our desire to help him grow and develop as he should, I'll probably be telling you about how he defied all expectations and ran over the hurdles.
Thank you Lord for the battles. They can be ugly and exhausting. They can also bring about change and growth. We are grateful for that. He continues to push the boundaries. He continues to surprise us. Thank you for watching over him, providing safety, and guiding us as we attempt to help him become the man that you would want him to be.
Last weekend, my family went to our cabin on the west rim of the Pennsylvania grand canyon. Our cabin is on the second highest point on the west rim of this beautiful mountain chain. It has no running water or electricity. We use a hand pump from a well for water. Sometimes it gets too dry in the summer months, then we have to locate known natural springs and fill buckets with water. An outhouse and outdoor hanging bucket/shower nozzle are our hygiene facilities. Propane tanks fuel a refrigerator and stove. It is silent and simple and serene. My children become totally different people up in these mountains. They play together peacefully, using their imaginations. It is here, in this setting, that my son struck a blow for independence. It was a powerful moment for us all.
As I have discussed in the past, my youngest has fine motor and gross motor coordination issues. One area that has been a consistent struggle is one that comes very simply for many children. He could not coordinate his feet in the up/down/circle/rotation manner required to peddle a bicycle. As a toddler, we bought him a three wheeler, one that was low to the ground, sturdy, and used by most boys to tear around and get into serious trouble. He could never figure out the movement needed to make it go. We would crawl along beside him, moving his feet in the pattern needed to make it move, but as soon as we would let go, his feet would fly off the peddles and he would loose the rhythm. He learned early on to coax his older brother into pushing him along on it. The two of them would zip along laughing and squealing. Tons of fun for them both but not very productive for learning to master the bike.
As stated previously, our son has been consistently above average in height for his age. Because of this, it hasn't been possible for him to continue working on a bicycle that is stage appropriate for him. He has been forced by necessity to move on to bigger bikes before he was capable of riding them. His current bike is a standard child's bike with training wheels. My husband has the training wheels set in such a way that there is very little "wiggle room". They keep him upright. He just has to focus on the machinations of peddling. Up until last week, this skill was beyond his abilities. But up in these beautiful mountains, our boy finally put all the pieces together and learned to peddle. You may be thinking, "Big deal lady. He's seven. He's kinda old to be celebrating learning to peddle a bike with training wheels." AH! But this is a step toward independence! You don't know how many times we have walked along beside him, trying to steer the bike with one hand, while attempting to help him move his feet in the right pattern, while trying to walk/jog beside him. You didn't see the absolute joy on his face. You didn't hear him chanting to himself as he peddled along, "I can do it! I can do it!" You didn't see the pride beaming from that beautiful face after his brother ran back to the cabin to get his Dad to come see him riding independently down that solitary road in the mountains. If you did, you would have celebrated too. Pride. Independence. Success.
There have been many other little steps towards independence over the last few weeks. He drew an octopus family; cut them out; and used only a tiny dab of glue to turn them into Popsicle stick puppets. In the past, there would have been a mountain of paste on the table, marker/crayon written all over the table, and paper scraps everywhere from the failed attempts to cut them out. But this time, there was success. A battle won for independence. He has been writing cards and letters, and signs CONSTANTLY this summer. Last week he declared it was "brudder's day" and made his older brother a card to celebrate. Two days ago, he made a sign asking the vampires to not hurt his brother's girlfriend. (??) Yesterday, he made me a card thanking me for making beef and noodles and using my "brane" to help him. Writing used to be a huge area of concern for us. It was such a struggle. Now he wants to do it all the time. It's still difficult to read at times, and not totally age appropriate yet, but it's a battle won in the war for independence.
Last night, his older brother had an open track event at a local school. We all went to support him and cheer him on. Our youngest son stood by the gate to the track while we sat in the stands. He cheered for his brother and hugged him in celebration after every event. As the evening began to wind down, our youngest ran to us and declared that he wanted to run too. It gave me pause. Should we let him? Could he do it? What if he lagged far behind and was embarrassed? What if he fell and hurt himself? Because it is an open event for all ages, we told him yes. Next time we came, we would sign him up for the 50 meter and the 100 meter. He is sooo excited. But he really wants to run the hurdles. *sigh* We told him let's take it one step at a time. Knowing our boy and his battles for independence, knowing our desire to help him grow and develop as he should, I'll probably be telling you about how he defied all expectations and ran over the hurdles.
Thank you Lord for the battles. They can be ugly and exhausting. They can also bring about change and growth. We are grateful for that. He continues to push the boundaries. He continues to surprise us. Thank you for watching over him, providing safety, and guiding us as we attempt to help him become the man that you would want him to be.
Sunday, June 23, 2013
Developmental Stages
"It's not fair!"
"You never listen to me!"
"You never believe me!"
"I can do it!"
These have become commonly heard refrains in our home over the last month or so. My youngest son is smack dab in the middle of the stage of development in which he is seeking to assert his independence from us. During this stage, children often see themselves as capable of doing more than the parents feel they are capable of doing. While the goal of the parent is the safety of the child, the goal of the child is self-sufficiency. The result of these discrepancies can be a power struggle. Add in developmental issues that affect the motor skills of that child and you have the recipe for conflict.
Our son has been found to have normal cognitive abilities. He's just as smart as his same age peers. Unfortunately, his delays appear to be mostly expressive in nature, in essence, keeping an average kid trapped inside a body that won't let him show that he's just like everyone else. Lately, this has begun to be a source of serious frustration for him. Not only does he want to do what other kids his age are doing, he wants to be able to do anything that his twelve year-old brother is doing. Logically, this isn't possible. Try rationalizing that to a frustrated seven year-old.
There have been many situations over the last month or so that have come about because of this desire to be more independent. His intention or motivation in each instance was a sincere wish to be helpful or independent. For example, the other day I came in from weeding the garden to find a HUGE mess. Because I know he is into everything right now, I purposely set a timer and only stayed out for short periods of time so that I could come in and check on him. Apparently, that didn't work. Our son wanted to help me by "making drinks for everyone." Very sweet intentions. Unfortunately, the timing was very poor. I had come in to get his brother a sandwich because he was experiencing a low blood sugar episode. (He's hypoglycemic.) He needed protein and in a short amount of time. What I walked into was not going to help me achieve that goal in a timely manner. My youngest had attempted to make me a cup of coffee. He had water spread over two different rooms, on the floor, on counters, everywhere. For some reason, he had mixed dry creamer and Splenda in a bowl which I didn't realize until later in the day when I went to make a glass of ice tea. Used tea bags sat in the sink. There were also coffee grounds in every conceivable place you could think of. The coffee pot was full of grounds both inside and out. The coffee urn was filled half full of a questionable substance. I'm still not sure what it was. My dish towel was in the garbage. The vacuum was sitting in the middle of the floor. Bless his heart he just wanted to get me a drink because I was out in the sun and must be thirsty.
I am proud to report that I stayed calm and handled it really well. After I got his brother a quick sandwich, we discussed that he needed to ask for help when getting something to drink. This didn't go over well. He went into "Rainman" mode because he wanted to do it himself and here I was asking him to ask for help. Secondly, he knew he wasn't successful and couldn't do it himself but admitting that to himself would mean he wasn't a big kid. The situation was just too frustrating for him to process so he melted down. He kept repeating the same phrases over and over. This is his way of dealing with frustration when a situation doesn't fit with his view of how it should be going. He will repetitively say the same phrase or group of phrases again and again. I eventually got him to calm down enough that he would stay in his room and play until I got the kitchen and dining room cleaned and mopped. When he came downstairs later, he went right back into the repetitive phrases because in his mind the issue had not been resolved.
At his yearly neurological appointment this week, we discussed these type of behaviors with his doctor. His response was encouraging yet frustrating. The behaviors we are seeing only occur at home. Both school and the neurologist say this is a good sign. Excuse me! Good? Because he is able to isolate the behavior to home, shows he has an understanding of what behaviors are appropriate and not appropriate for being out in public. They said it is very normal for a child to hold in his frustration all day through school and public situations, then vent that frustration when he is home in a safe environment surrounded by people he trusts to still love him when the moment is over. In other words, we are his soft place to fall.
Both school and the doctors see his behavior as typical for the stage he is in. We find them particularly frustrating because we are receiving the brunt of them. They are also frustrating because they are stage appropriate but not age appropriate. Because he is in the ninety-seventh percentile for size, he appears older than he is. Combine that large size with his typical year or more delay and to us, you have a child who appears to be quite age inappropriate in behavior. Fortunately, his good manners and great social skills compensate for this in a public setting therefore most people who meet him casually rarely pick up on his differences, aside from his speech issues.
Intellectually, I get that it is great that he is in this stage of development. Children need to learn to assert their independence. Our goal is to raise self-sufficient individuals who can contribute productively to society. Emotionally, it is exhausting that he is in this stage of development. It sometimes feels like we are getting it all wrong. Then we see him at a school function or playing with friends and we know we are getting the important things right. We just need to be patient and give him time, his time, to put all the pieces together.
Thank you Lord for growth and movement in a forward direction. I pray for the patience and stamina to see him to where he needs to go. The journey certainly won't be boring.
"You never listen to me!"
"You never believe me!"
"I can do it!"
These have become commonly heard refrains in our home over the last month or so. My youngest son is smack dab in the middle of the stage of development in which he is seeking to assert his independence from us. During this stage, children often see themselves as capable of doing more than the parents feel they are capable of doing. While the goal of the parent is the safety of the child, the goal of the child is self-sufficiency. The result of these discrepancies can be a power struggle. Add in developmental issues that affect the motor skills of that child and you have the recipe for conflict.
Our son has been found to have normal cognitive abilities. He's just as smart as his same age peers. Unfortunately, his delays appear to be mostly expressive in nature, in essence, keeping an average kid trapped inside a body that won't let him show that he's just like everyone else. Lately, this has begun to be a source of serious frustration for him. Not only does he want to do what other kids his age are doing, he wants to be able to do anything that his twelve year-old brother is doing. Logically, this isn't possible. Try rationalizing that to a frustrated seven year-old.
There have been many situations over the last month or so that have come about because of this desire to be more independent. His intention or motivation in each instance was a sincere wish to be helpful or independent. For example, the other day I came in from weeding the garden to find a HUGE mess. Because I know he is into everything right now, I purposely set a timer and only stayed out for short periods of time so that I could come in and check on him. Apparently, that didn't work. Our son wanted to help me by "making drinks for everyone." Very sweet intentions. Unfortunately, the timing was very poor. I had come in to get his brother a sandwich because he was experiencing a low blood sugar episode. (He's hypoglycemic.) He needed protein and in a short amount of time. What I walked into was not going to help me achieve that goal in a timely manner. My youngest had attempted to make me a cup of coffee. He had water spread over two different rooms, on the floor, on counters, everywhere. For some reason, he had mixed dry creamer and Splenda in a bowl which I didn't realize until later in the day when I went to make a glass of ice tea. Used tea bags sat in the sink. There were also coffee grounds in every conceivable place you could think of. The coffee pot was full of grounds both inside and out. The coffee urn was filled half full of a questionable substance. I'm still not sure what it was. My dish towel was in the garbage. The vacuum was sitting in the middle of the floor. Bless his heart he just wanted to get me a drink because I was out in the sun and must be thirsty.
I am proud to report that I stayed calm and handled it really well. After I got his brother a quick sandwich, we discussed that he needed to ask for help when getting something to drink. This didn't go over well. He went into "Rainman" mode because he wanted to do it himself and here I was asking him to ask for help. Secondly, he knew he wasn't successful and couldn't do it himself but admitting that to himself would mean he wasn't a big kid. The situation was just too frustrating for him to process so he melted down. He kept repeating the same phrases over and over. This is his way of dealing with frustration when a situation doesn't fit with his view of how it should be going. He will repetitively say the same phrase or group of phrases again and again. I eventually got him to calm down enough that he would stay in his room and play until I got the kitchen and dining room cleaned and mopped. When he came downstairs later, he went right back into the repetitive phrases because in his mind the issue had not been resolved.
At his yearly neurological appointment this week, we discussed these type of behaviors with his doctor. His response was encouraging yet frustrating. The behaviors we are seeing only occur at home. Both school and the neurologist say this is a good sign. Excuse me! Good? Because he is able to isolate the behavior to home, shows he has an understanding of what behaviors are appropriate and not appropriate for being out in public. They said it is very normal for a child to hold in his frustration all day through school and public situations, then vent that frustration when he is home in a safe environment surrounded by people he trusts to still love him when the moment is over. In other words, we are his soft place to fall.
Both school and the doctors see his behavior as typical for the stage he is in. We find them particularly frustrating because we are receiving the brunt of them. They are also frustrating because they are stage appropriate but not age appropriate. Because he is in the ninety-seventh percentile for size, he appears older than he is. Combine that large size with his typical year or more delay and to us, you have a child who appears to be quite age inappropriate in behavior. Fortunately, his good manners and great social skills compensate for this in a public setting therefore most people who meet him casually rarely pick up on his differences, aside from his speech issues.
Intellectually, I get that it is great that he is in this stage of development. Children need to learn to assert their independence. Our goal is to raise self-sufficient individuals who can contribute productively to society. Emotionally, it is exhausting that he is in this stage of development. It sometimes feels like we are getting it all wrong. Then we see him at a school function or playing with friends and we know we are getting the important things right. We just need to be patient and give him time, his time, to put all the pieces together.
Thank you Lord for growth and movement in a forward direction. I pray for the patience and stamina to see him to where he needs to go. The journey certainly won't be boring.
Monday, May 13, 2013
Pity Parties and Other Parental Maladies
Another Mother's Day has come and gone. It wasn't what I had been hoping it would be. No card. No flowers. (Other than the ones my husband told me to pick out for myself when buying flowers for our mothers) No acknowledgement of all the time and effort I put into making their lives more comfortable. Matter of fact, both boys woke up extra early and as a result, were out of sorts throughout the day. Was this the Mother's Day I deserved? I was disheartened to think how little they appreciated me.
They spent Saturday hunting while I stayed home and cleaned the house. I prepared the food for the Mother's Day luncheon we were having for our parents the next day. On Mother's Day itself, after lunch was cooked and served, they didn't even offer to help clean up. After everyone left, we went to a sporting goods store and bought cross country running shoes for my oldest son and new socks for my husband. Some great Mother's Day this turned out to be.
This was the conversation that went on in my head throughout Mother's Day. It was a sad, pathetic, pity party for one. The internal dialogue was poisonous and unproductive. I stewed as I browsed all the fantastic postings of mothers who got presents and whose husbands had done nice things for them. Then I saw it. A post written by a dear woman that I consider to be one of God's angels on Earth. She lives her life in service to the Lord each and every day. She lives His word. Her post was an open letter to her son. Mother's Day was his birthday. In her letter, she expressed her love and devotion to him. That beautiful woman of God lost her son this year. This was her first Mother's Day without him and it fell on his birthday.
All I could think was "Dear Lord forgive me". I felt small. I felt pitiful. I felt ashamed. Here I sat, feeling mistreated and alone because they had failed to honor how much I did for them. In contrast, I know that this unselfish woman would be grateful for just one more moment with her son by her side. Then this morning I turn on the local news and learn that a woman lost her husband, her sister, and her four children in a house fire while she was away from home. On Mother's Day, she lost her entire family. I can't even begin to imagine that level of grief. Life without my men? It would be more than I could bear.
Do I wish my Mother's Day had been different? Resoundingly, I say YES! I wish I had soaked up every second of that time with my family. The moment in church when my oldest son reached over during the one hymn to hold my hand. The moment when my youngest son crawled on my lap and leaned back against me to snuggle. The moment when my husband reached his arm around my waist to pull me against him for just a second to say that unspoken "I love you." The moment when the boys giggled and squealed as they wrestled around on the couch. I wish I had EMBRACED the moments. Smiled. Sighed in satisfaction that this life was mine. That these men were mine. How blessed I am. How very, very blessed.
The Lord brings people and circumstances into our lives to teach us lessons. I pray that I continue to be open to those lessons. Please Lord let me recognize the beauty and the blessings that surround me everyday. Let me extinguish the internal dialogue that acts as a destructive force in my heart. Let me laugh more and criticize less, hug more and worry less.
They spent Saturday hunting while I stayed home and cleaned the house. I prepared the food for the Mother's Day luncheon we were having for our parents the next day. On Mother's Day itself, after lunch was cooked and served, they didn't even offer to help clean up. After everyone left, we went to a sporting goods store and bought cross country running shoes for my oldest son and new socks for my husband. Some great Mother's Day this turned out to be.
This was the conversation that went on in my head throughout Mother's Day. It was a sad, pathetic, pity party for one. The internal dialogue was poisonous and unproductive. I stewed as I browsed all the fantastic postings of mothers who got presents and whose husbands had done nice things for them. Then I saw it. A post written by a dear woman that I consider to be one of God's angels on Earth. She lives her life in service to the Lord each and every day. She lives His word. Her post was an open letter to her son. Mother's Day was his birthday. In her letter, she expressed her love and devotion to him. That beautiful woman of God lost her son this year. This was her first Mother's Day without him and it fell on his birthday.
All I could think was "Dear Lord forgive me". I felt small. I felt pitiful. I felt ashamed. Here I sat, feeling mistreated and alone because they had failed to honor how much I did for them. In contrast, I know that this unselfish woman would be grateful for just one more moment with her son by her side. Then this morning I turn on the local news and learn that a woman lost her husband, her sister, and her four children in a house fire while she was away from home. On Mother's Day, she lost her entire family. I can't even begin to imagine that level of grief. Life without my men? It would be more than I could bear.
Do I wish my Mother's Day had been different? Resoundingly, I say YES! I wish I had soaked up every second of that time with my family. The moment in church when my oldest son reached over during the one hymn to hold my hand. The moment when my youngest son crawled on my lap and leaned back against me to snuggle. The moment when my husband reached his arm around my waist to pull me against him for just a second to say that unspoken "I love you." The moment when the boys giggled and squealed as they wrestled around on the couch. I wish I had EMBRACED the moments. Smiled. Sighed in satisfaction that this life was mine. That these men were mine. How blessed I am. How very, very blessed.
The Lord brings people and circumstances into our lives to teach us lessons. I pray that I continue to be open to those lessons. Please Lord let me recognize the beauty and the blessings that surround me everyday. Let me extinguish the internal dialogue that acts as a destructive force in my heart. Let me laugh more and criticize less, hug more and worry less.
Saturday, April 20, 2013
Coordinating Specialists
"A doctor who cannot take a good history and a patient who cannot give one are in
danger of giving and receiving bad treatment." (Author Unknown) Experience has taught me a lot that I didn't know about being the mother of a patient. The most important lesson that I have learned is that you have a short window of time to describe a medical concern before the doctor tunes you out and decides for himself exactly what is going on. When you are being shuffled between various specialists' offices, it is even more important to have your facts and your thoughts clear. (I keep a notebook.)
As I have discussed recently, my youngest son has been in the midst of an ear infection/asthma flair for a couple weeks/months now. His primary doctor evaluated the situation and prescribed treatment three times. After the third visit, he referred us to our pulmonary specialist. Our pulmonary specialist in turn altered and extended the treatment started by our son's primary doctor. He then referred us to an ear, nose, and throat (ENT) specialist and a pediatric gastroenterologist to try to determine the source of our son's ongoing asthma flair.
The ENT specialist briefly reviewed our son's medical history; gave him a short exam; then determined that his ear appears to be healing. As she put it, "That is a chronically ill ear. It looks retracted and sick but actually seems to be healing." She stated that she can't believe he doesn't have some hearing loss by looking at the ear in question. I explained that he had just had a full audiology exam and has perfect hearing and is actually hypersensitive to sound. She just shook her head. You've got to laugh. Once again, the little guy is defying the odds.
One of the frustrations of going between different specialists for related issues is the lack of coordination between these different departments. When dealing with specialty departments, you take the first available appointment or you may wait for months to get seen. Because they are fitting you in as soon as possible, it's almost impossible to coordinate different appointments for the same day. As a result, you end up taking a lot of time off from work and school to try and make these appointments.
Thanks to modern technology, doctors and specialists within the same medical system are able to share their notes with one another through the computer. This sharing of information and opinions should help save time if the doctors have done their homework and read the notes before coming in for the appointment, and if the doctors have clearly and completely documented their information, treatment, and recommendations. Those are some pretty big ifs. It becomes your job, as the parent, to make sure all information has been provided, and provided clearly. It is your job to clarify, explain, or expand upon the information needed to make the correct decisions.
Another problem with going between different specialists for related issues is that each doctor will be approaching the problem from her specialty's perspective. For example, our son's primary prescribed newer antibiotics for ten day treatments because he knew how much medicine our son has been on and he fears over using antibiotics. Conversely, our son's pulmonary doctor prescribed a month of Bactrim because he fears the length of treatment wasn't sufficient to completely clear the ear infection/sinus infection that may have been causing our son's asthma flair. He primary concern, as a pulmonary doctor, was to get the airways less inflamed; knock out any existing infection; and regrow the injured cilia of the sinuses. On the other end of the spectrum, the ENT doctor said she would have recommended no antibiotics; use of a humidifier (which we already use and our pulmonary doctor said was not really necessary); and a nasal gel to address his nose bleeds. She stated that some ear infections may take months to clear and that time and patience are the best treatment. She did acknowledged though that a chronic asthmatic, once flared, can't wait months for an ear infection to clear. They have to be able to breathe. As a result, she concurred with the pulmonary doctor in both his treatment and the referral to gastroenterology. If the ears continue to act up over the next month or so, she will see him back and probably put in his fourth set of tubes. *Fingers crossed that this is not necessary.
We have run into this conflict between specialties, time and again with our son with his developmental and medical issues. The doctors say he needs a particular service. The school says he needs something different. His neurologist says his issues are neurologically based and nothing can be done but provide treatment for what develops with time. The school says please get him assessed for an auditory processing disorder and a functional vision disorder. His neurologist disagrees and says that is not needed. Once again, everyone is looking at it from their own specialty.
I'm looking at our son as his mother. I love him. I want the best for him, be it medically or educationally. As his mother, I am his advocate, his voice. When things are confusing or unclear, I try to make it make sense. When communication is lacking, I provide the missing pieces. I read and I research and I ask questions. I make phone calls and I fight with insurance companies and I badger secretaries for information. Through it all, I try to be polite, patient and compassionate to the individual who is just trying to do his job. At the same time, I am his mother. I will make sure that what needs done, gets done and gets done well.
I thank God for the ability to be an advocate for my child. I thank Him for the strength and fortitude to do what needs to be done. I also pray for all the little ones who don't have advocates, who don't have a voice speaking for them. Protect them Lord. Cover them with your grace and protection. Continue to watch over us and grant us wisdom, strength and guidance.
As I have discussed recently, my youngest son has been in the midst of an ear infection/asthma flair for a couple weeks/months now. His primary doctor evaluated the situation and prescribed treatment three times. After the third visit, he referred us to our pulmonary specialist. Our pulmonary specialist in turn altered and extended the treatment started by our son's primary doctor. He then referred us to an ear, nose, and throat (ENT) specialist and a pediatric gastroenterologist to try to determine the source of our son's ongoing asthma flair.
The ENT specialist briefly reviewed our son's medical history; gave him a short exam; then determined that his ear appears to be healing. As she put it, "That is a chronically ill ear. It looks retracted and sick but actually seems to be healing." She stated that she can't believe he doesn't have some hearing loss by looking at the ear in question. I explained that he had just had a full audiology exam and has perfect hearing and is actually hypersensitive to sound. She just shook her head. You've got to laugh. Once again, the little guy is defying the odds.
One of the frustrations of going between different specialists for related issues is the lack of coordination between these different departments. When dealing with specialty departments, you take the first available appointment or you may wait for months to get seen. Because they are fitting you in as soon as possible, it's almost impossible to coordinate different appointments for the same day. As a result, you end up taking a lot of time off from work and school to try and make these appointments.
Thanks to modern technology, doctors and specialists within the same medical system are able to share their notes with one another through the computer. This sharing of information and opinions should help save time if the doctors have done their homework and read the notes before coming in for the appointment, and if the doctors have clearly and completely documented their information, treatment, and recommendations. Those are some pretty big ifs. It becomes your job, as the parent, to make sure all information has been provided, and provided clearly. It is your job to clarify, explain, or expand upon the information needed to make the correct decisions.
Another problem with going between different specialists for related issues is that each doctor will be approaching the problem from her specialty's perspective. For example, our son's primary prescribed newer antibiotics for ten day treatments because he knew how much medicine our son has been on and he fears over using antibiotics. Conversely, our son's pulmonary doctor prescribed a month of Bactrim because he fears the length of treatment wasn't sufficient to completely clear the ear infection/sinus infection that may have been causing our son's asthma flair. He primary concern, as a pulmonary doctor, was to get the airways less inflamed; knock out any existing infection; and regrow the injured cilia of the sinuses. On the other end of the spectrum, the ENT doctor said she would have recommended no antibiotics; use of a humidifier (which we already use and our pulmonary doctor said was not really necessary); and a nasal gel to address his nose bleeds. She stated that some ear infections may take months to clear and that time and patience are the best treatment. She did acknowledged though that a chronic asthmatic, once flared, can't wait months for an ear infection to clear. They have to be able to breathe. As a result, she concurred with the pulmonary doctor in both his treatment and the referral to gastroenterology. If the ears continue to act up over the next month or so, she will see him back and probably put in his fourth set of tubes. *Fingers crossed that this is not necessary.
We have run into this conflict between specialties, time and again with our son with his developmental and medical issues. The doctors say he needs a particular service. The school says he needs something different. His neurologist says his issues are neurologically based and nothing can be done but provide treatment for what develops with time. The school says please get him assessed for an auditory processing disorder and a functional vision disorder. His neurologist disagrees and says that is not needed. Once again, everyone is looking at it from their own specialty.
I'm looking at our son as his mother. I love him. I want the best for him, be it medically or educationally. As his mother, I am his advocate, his voice. When things are confusing or unclear, I try to make it make sense. When communication is lacking, I provide the missing pieces. I read and I research and I ask questions. I make phone calls and I fight with insurance companies and I badger secretaries for information. Through it all, I try to be polite, patient and compassionate to the individual who is just trying to do his job. At the same time, I am his mother. I will make sure that what needs done, gets done and gets done well.
I thank God for the ability to be an advocate for my child. I thank Him for the strength and fortitude to do what needs to be done. I also pray for all the little ones who don't have advocates, who don't have a voice speaking for them. Protect them Lord. Cover them with your grace and protection. Continue to watch over us and grant us wisdom, strength and guidance.
Tuesday, April 9, 2013
Traveling With An Asthmatic
I wake from a sound sleep wondering what has startled me awake. Then I hear it, that choking gasping sound coming through the monitor. My youngest son may be seven but we still keep a baby monitor in his room for moments just like these. Unfortunately, these moments have been almost a nightly occurrence for the last month and a half. He has been in an asthma flair for nearly six weeks with no end in sight.
Our son's primary doctor identified that his right ear is infected. Has been infected. Over the last six weeks, he has been on Prednisone, an oral steroid, and he has been prescribed three different antibiotics. These medicines are in addition to his regular preventative medicines (Singulair, Flovent, Omneprazole, and Loratadine) that he takes on a daily basis. During flairs like this, we also use his Albuterol nebulizer every four hours, round the clock. In addition, saline spray is used to moisten his nasal cavities and wash out any bacteria that may be trying to grow there; the head end of his bed is elevated on blocks; and a humidifier adds moisture to the air and his sinuses. This is all part of our regular routine. We are used to this. It's what we do to survive life with our son.
Unfortunately, this time, none of it seems to be working. His primary doctor was at a loss for what to do so he put in an emergency consult with our son's pulmonary specialist. After going to see the pulmonary specialist, he was at a loss of what to do, so he put in a referral to the ear, nose, and throat specialist and the gastrointestinal specialist. In the meantime, his pulmonary doctor prescribed a month of Bactrim at the highest dosage and an increase in his Omneprazole. He fears that our son may need another set of ear tubes (he has had three prior sets). He also fears that he may need his tonsils removed (his adenoids were removed when the last set of ear tubes were put in). His biggest fear though is that the root of all of these issues may be reflux that is not being controlled by his current medications. Reflux is the primary cause of asthma in children. If reflux is the main problem, all we have been doing is the equivalent of putting a bandaid on an open wound. Until the other specialists can determine a definitive causation, he wants him on the Bactrim long term to control current infection; to prevent further infection; and to help the cilia in his sinuses begin to regrow. Life with this boy often seems like the children's book If You Give A Mouse A Cookie but instead it's If You Give A Doctor A Symptom.
During the midst of this current flair, my sister was getting married two hours from our home. I was dreading this event, not because of the wedding itself, but because we were taking our son along in his current state. Those of you that have had to travel with a serious asthmatic know that it is a practice in strategizing and planning. It's a challenge to remember to pack all the medicines and all the "gear". For example, we have a converter for our truck so that we can have electricity to power our son's nebulizer anywhere we go. This comes in really handy when traveling long distances or traveling where you aren't sure of an electrical supply. We also keep an emergency box stocked with all the supplies needed to treat the symptoms associated with such a flair. After making lists, packing, planning, and trying to think of worse case scenarios, I felt fairly confident that we could weather this without too many issues.
Fortunately, it went just about as planned. I forgot to factor in the fact that he was on Prednisone and would be contained to hotel rooms, churches and reception halls. That combined with his excitement for the event equaled manicness!!! He was like a ping pong ball set loose.
Thankfully we had rented a suite at the hotel because at 1:30 am, he woke with one of his gagging/choking/wheezing spells. Not wanting to wake his older brother who was sleeping on the pull out couch in the other room, I stumbled through the kitchen using my cell phone as my flashlight, trying to locate his emergency kit. After finding it, I took it into our room where I climbed into bed with him to get him sitting upright and administered his breathing treatment. My husband sat on the edge of the bed holding the nebulizer machine so the vibrations of this noisy piece of equipment wouldn't wake our older son or other patrons in other rooms. When the treatment was over and I had him settled back into bed, I verbally started going through my checklist of medications that he had been given and when he could take them again. At that moment, our little monster piped up with "Excuse me you two, could you hold it down please. I'm trying to sleep over here." I didn't know whether to laugh, cry, or choke him.
The next day, after arriving at the reception hall, my husband gave our son a breathing treatment on the tailgate of our truck. Thank goodness he gave him one before going in because he was a moving, grooving, boogie down dancer. He danced by himself, with brides maids, with other kids, with adults, with men, with women, basically, with anyone who would join him. He had a blast. As a result, he got coughing jags. None too serious though. My brother expressed concern that he was so busy and kept coughing. I told him if he could calm him down to feel free, it would be helpful. So for awhile, he played on his Kindle Fire with his uncle. Before heading for home, we gave him another breathing treatment on the tailgate of the truck. We survived! It was a beautiful wedding. My sister was GORGEOUS! We all had fun.
Living with a child like ours often feels like a balancing act. You want to keep them safe and healthy. At the same time, too much "safety" and "prevention" can stifle the potential that child might otherwise achieve. I want the best for him. I want him healthy and strong but I also want him to be free to experience life and live fully with the joy that comes so naturally to him. Lord, help me find that balance. Help me know when to hold him back and when to set him free. He'll find the joy wherever he goes. I just need to allow him the opportunities to find it.
Our son's primary doctor identified that his right ear is infected. Has been infected. Over the last six weeks, he has been on Prednisone, an oral steroid, and he has been prescribed three different antibiotics. These medicines are in addition to his regular preventative medicines (Singulair, Flovent, Omneprazole, and Loratadine) that he takes on a daily basis. During flairs like this, we also use his Albuterol nebulizer every four hours, round the clock. In addition, saline spray is used to moisten his nasal cavities and wash out any bacteria that may be trying to grow there; the head end of his bed is elevated on blocks; and a humidifier adds moisture to the air and his sinuses. This is all part of our regular routine. We are used to this. It's what we do to survive life with our son.
Unfortunately, this time, none of it seems to be working. His primary doctor was at a loss for what to do so he put in an emergency consult with our son's pulmonary specialist. After going to see the pulmonary specialist, he was at a loss of what to do, so he put in a referral to the ear, nose, and throat specialist and the gastrointestinal specialist. In the meantime, his pulmonary doctor prescribed a month of Bactrim at the highest dosage and an increase in his Omneprazole. He fears that our son may need another set of ear tubes (he has had three prior sets). He also fears that he may need his tonsils removed (his adenoids were removed when the last set of ear tubes were put in). His biggest fear though is that the root of all of these issues may be reflux that is not being controlled by his current medications. Reflux is the primary cause of asthma in children. If reflux is the main problem, all we have been doing is the equivalent of putting a bandaid on an open wound. Until the other specialists can determine a definitive causation, he wants him on the Bactrim long term to control current infection; to prevent further infection; and to help the cilia in his sinuses begin to regrow. Life with this boy often seems like the children's book If You Give A Mouse A Cookie but instead it's If You Give A Doctor A Symptom.
During the midst of this current flair, my sister was getting married two hours from our home. I was dreading this event, not because of the wedding itself, but because we were taking our son along in his current state. Those of you that have had to travel with a serious asthmatic know that it is a practice in strategizing and planning. It's a challenge to remember to pack all the medicines and all the "gear". For example, we have a converter for our truck so that we can have electricity to power our son's nebulizer anywhere we go. This comes in really handy when traveling long distances or traveling where you aren't sure of an electrical supply. We also keep an emergency box stocked with all the supplies needed to treat the symptoms associated with such a flair. After making lists, packing, planning, and trying to think of worse case scenarios, I felt fairly confident that we could weather this without too many issues.
Fortunately, it went just about as planned. I forgot to factor in the fact that he was on Prednisone and would be contained to hotel rooms, churches and reception halls. That combined with his excitement for the event equaled manicness!!! He was like a ping pong ball set loose.
Thankfully we had rented a suite at the hotel because at 1:30 am, he woke with one of his gagging/choking/wheezing spells. Not wanting to wake his older brother who was sleeping on the pull out couch in the other room, I stumbled through the kitchen using my cell phone as my flashlight, trying to locate his emergency kit. After finding it, I took it into our room where I climbed into bed with him to get him sitting upright and administered his breathing treatment. My husband sat on the edge of the bed holding the nebulizer machine so the vibrations of this noisy piece of equipment wouldn't wake our older son or other patrons in other rooms. When the treatment was over and I had him settled back into bed, I verbally started going through my checklist of medications that he had been given and when he could take them again. At that moment, our little monster piped up with "Excuse me you two, could you hold it down please. I'm trying to sleep over here." I didn't know whether to laugh, cry, or choke him.
The next day, after arriving at the reception hall, my husband gave our son a breathing treatment on the tailgate of our truck. Thank goodness he gave him one before going in because he was a moving, grooving, boogie down dancer. He danced by himself, with brides maids, with other kids, with adults, with men, with women, basically, with anyone who would join him. He had a blast. As a result, he got coughing jags. None too serious though. My brother expressed concern that he was so busy and kept coughing. I told him if he could calm him down to feel free, it would be helpful. So for awhile, he played on his Kindle Fire with his uncle. Before heading for home, we gave him another breathing treatment on the tailgate of the truck. We survived! It was a beautiful wedding. My sister was GORGEOUS! We all had fun.
Living with a child like ours often feels like a balancing act. You want to keep them safe and healthy. At the same time, too much "safety" and "prevention" can stifle the potential that child might otherwise achieve. I want the best for him. I want him healthy and strong but I also want him to be free to experience life and live fully with the joy that comes so naturally to him. Lord, help me find that balance. Help me know when to hold him back and when to set him free. He'll find the joy wherever he goes. I just need to allow him the opportunities to find it.
Sunday, March 24, 2013
Central Auditory Processing Disorder
As discussed previously, we met as a team a few weeks ago to discuss possible courses of action to help our youngest son become more successful in school. One recommendation was that we have him tested for a central auditory processing disorder (CAPD). I had my reservations about opening another potential Pandora's box. When we started this journey, our son was nine months old. I promised myself then that I would leave no stone unturned if it would help him. Whatever the inconvenience or expense, if it would benefit him, we would give it a try.
Our journey once again involved a series of specialist appointments and tests. The first appointment was a full audiology physical. Our son got a kick out of seeing the inside of his ears on a computer screen. He enjoyed the digitalizing of what he was hearing. He did not like the "box" or the sound proof booth they used to administer his hearing assessment. Our son is very social and hates to be by himself. In spite of his aversion to the "box", he was very cooperative. All the tests at this appointment showed that he had normal ear structures and normal hearing.
It was important that they identified that his hearing was normal. Children with CAPD have normal hearing but are unable to pick out the important sounds within their environment. They have trouble focusing in noisy situations. These children are often overwhelmed or upset by noise and confusion. In addition, they often have trouble distinguishing between different sounds; remembering complex or multi-step directions; or completing higher level auditory skills. Our son struggles in these areas... but so do many children with attention deficit disorder (ADD).
The next two appointments involved a series of tests to determine whether he had difficulty picking out words or sounds in a noisy environment. They tested this in several different ways over two different sessions. In the end, it was determined that he does indeed have trouble decoding sounds. In other words, he has trouble identifying what is important to focus on in noisy environments. Because he has been diagnosed with ADD, they cannot definitively say it is just a decoding issue due to CAPD. They feel part of his struggle in school is related to this issue though.
So what do we do about it? The specialists have a series of recommendations for us at home and at school. They are awaiting insurance approval to fit him with an FM system. It includes a pair of tiny hearing aid type devices that he wears at school or in situations where he needs to focus on what is being said. The teacher/speaker wears a little microphone device that sends his/her voice directly to our son. He will be able to hear other sounds within the environment but the speaker's voice will now be the most noticeable. This will give him the ability to focus in on what is being taught instead of being distracted by the sounds around him.
The audiologists that we are working with questioned how severe his stuttering can become. We told them that at times it is very mild but at other times it can become moderate to severe. They told us that they don't know of any research to back it up, but their experience with the FM system they are recommending has shown a decrease in stuttering with the children who use it. They have also found it very useful to children who have ADD but not CAPD.
This latest journey leaves us with some hope that things will get easier for him in the classroom. It also leaves us with many questions. Will he achieve success with their recommendations? Will success with this system make him less of a target for other kids because he will be less different or more of a target because he is different by using this system? Will he outgrow the need for this system? Children with CAPD tend to outgrow the problem as their neuro pathways grow and develop. Is this the answers we have been looking for or just another piece of the puzzle?
School testing with the guidance counselor shows he has average cognitive skills yet he fails to show progress. This inability to perform at his true potential in spite of every one's best efforts, including his, leaves everyone a bit frustrated. The school also want us to have him assessed for a functional vision disorder. Will this be a wild goose chase with unnecessary expense or will it be another piece of the puzzle? We will wait and see this summer. For now, he needs a break from appointments and assessments. So do we.
I don't want to look back someday and ask myself, did I do enough to help him succeed? Did I do everything within my power to help him reach his true potential? I don't want him to look back someday and question why I didn't do my best for him. So I will. I will read and research and question. I will find the time, the energy and the money. I will do what it takes to help him. Along the way, we will laugh at the stupid decisions, the dead ends, and the false starts. They are all just part of the journey. We'll get where we need to go. In God's time, we'll get there.
For more on central auditory processing disorders, go to http://kidshealth.org/parent/medical/ears/central_auditory.html
Our journey once again involved a series of specialist appointments and tests. The first appointment was a full audiology physical. Our son got a kick out of seeing the inside of his ears on a computer screen. He enjoyed the digitalizing of what he was hearing. He did not like the "box" or the sound proof booth they used to administer his hearing assessment. Our son is very social and hates to be by himself. In spite of his aversion to the "box", he was very cooperative. All the tests at this appointment showed that he had normal ear structures and normal hearing.
It was important that they identified that his hearing was normal. Children with CAPD have normal hearing but are unable to pick out the important sounds within their environment. They have trouble focusing in noisy situations. These children are often overwhelmed or upset by noise and confusion. In addition, they often have trouble distinguishing between different sounds; remembering complex or multi-step directions; or completing higher level auditory skills. Our son struggles in these areas... but so do many children with attention deficit disorder (ADD).
The next two appointments involved a series of tests to determine whether he had difficulty picking out words or sounds in a noisy environment. They tested this in several different ways over two different sessions. In the end, it was determined that he does indeed have trouble decoding sounds. In other words, he has trouble identifying what is important to focus on in noisy environments. Because he has been diagnosed with ADD, they cannot definitively say it is just a decoding issue due to CAPD. They feel part of his struggle in school is related to this issue though.
So what do we do about it? The specialists have a series of recommendations for us at home and at school. They are awaiting insurance approval to fit him with an FM system. It includes a pair of tiny hearing aid type devices that he wears at school or in situations where he needs to focus on what is being said. The teacher/speaker wears a little microphone device that sends his/her voice directly to our son. He will be able to hear other sounds within the environment but the speaker's voice will now be the most noticeable. This will give him the ability to focus in on what is being taught instead of being distracted by the sounds around him.
The audiologists that we are working with questioned how severe his stuttering can become. We told them that at times it is very mild but at other times it can become moderate to severe. They told us that they don't know of any research to back it up, but their experience with the FM system they are recommending has shown a decrease in stuttering with the children who use it. They have also found it very useful to children who have ADD but not CAPD.
This latest journey leaves us with some hope that things will get easier for him in the classroom. It also leaves us with many questions. Will he achieve success with their recommendations? Will success with this system make him less of a target for other kids because he will be less different or more of a target because he is different by using this system? Will he outgrow the need for this system? Children with CAPD tend to outgrow the problem as their neuro pathways grow and develop. Is this the answers we have been looking for or just another piece of the puzzle?
School testing with the guidance counselor shows he has average cognitive skills yet he fails to show progress. This inability to perform at his true potential in spite of every one's best efforts, including his, leaves everyone a bit frustrated. The school also want us to have him assessed for a functional vision disorder. Will this be a wild goose chase with unnecessary expense or will it be another piece of the puzzle? We will wait and see this summer. For now, he needs a break from appointments and assessments. So do we.
I don't want to look back someday and ask myself, did I do enough to help him succeed? Did I do everything within my power to help him reach his true potential? I don't want him to look back someday and question why I didn't do my best for him. So I will. I will read and research and question. I will find the time, the energy and the money. I will do what it takes to help him. Along the way, we will laugh at the stupid decisions, the dead ends, and the false starts. They are all just part of the journey. We'll get where we need to go. In God's time, we'll get there.
For more on central auditory processing disorders, go to http://kidshealth.org/parent/medical/ears/central_auditory.html
Friday, February 15, 2013
Renewed Hope
As I have eluded to in recent posts, our little man hasn't been making as much progress in therapy or at school as we had hoped. He was frustrated. The educational team was somewhat perplexed and a tad frustrated. His father and I were flat out exhausted. We felt like we had pursued all avenues and shaken all the bushes with little to show for it. What more could we all be doing?
Today we met with the educational and therapeutic team. It was very very productive. Apparently the neurology report we had taken into school back in November had been placed in his file but never been passed along to the educational team for review. When they located the latest neuro report, they discovered that our son had been diagnosed with attention deficit disorder (ADD) and an evaluation for a language based learning disability had been strongly recommended. From a school standpoint, this opened all kinds of doors. He now qualifies for academic based goals instead of just speech, occupational therapy and physical therapy based goals. The types of services and teaching tools that can now be utilized has been expanded dramatically. A timeline was discussed for implementing his new goals and arranging new evaluations. New doors were opened.
We also discussed the need to have him evaluated for a central auditory processing disorder by a specialized audiologist. They would also like us to pursue having him evaluated for a functional vision disorder by a specialized pediatric optometrist. These evaluations may be able to pinpoint the source of his processing issues. If they can't identify a causation, they can at least narrow down the possibilities. New direction. Maybe some answers.
The assembled team included the special education director of the school district (and mother of a special needs child), his occupational therapist and her supervisor, his speech therapist, his teacher, and his Dad and I. We were able to discuss our concerns and needs as a team with everyone present for the first time. At his individualized education plan (IEP) meeting, several of these members had been missing. As a result, needed information was not passed along. At this meeting, everyone was there and obviously concerned and invested in helping our son meet his goals. His teacher requested communication between the therapy team and himself so that he can better implement their ideas and techniques in the classroom. Emails and phone numbers were exchanged for faster and more effective communication. Communication was improved. More effective goals identified.
As his parents, we were able to shed light on some of the issues that had begun to develop at school. We were able to identify that our son, who had always seen himself as awesome and amazing, was now starting to recognize that he was different from his peers. He is terribly frustrated with himself and his circumstances at the moment. There isn't anything that we as the assembled team can do for him other than help him navigate this time. It is part of the growing process when you have the learning and developmental issues that he has. But this knowledge helped identify why he was becoming resistant to eating in the cafeteria; or being separated from his peers to go to therapy; or seeking approval from his classmates when before he was content to march to his own little drum. Behaviors that they had seen or been concerned with now made more sense. Our sons motivations were identified and clarified. Better understanding and empathy was developed.
We were able to explain what our evenings were like with a kiddo who holds it together all day because he wants to fit in and make everyone happy but explodes upon getting home. They said this is normal for children with his issues. Once the kiddos are home where they feel loved and protected, they feel safe enough to release the frustration they have held in all day at school. The special education director, who has navigated these waters with her own son, also identified that part of his exhaustion by the end of a day/week was also normal. Every single thing he does in a day is still a purposeful, cognitive decision. While most of us learn to do simple life tasks on auto pilot, children like ours still have to think their way through these same seemingly simple tasks. Of course they are tired by the end of a day/week. As a team, we were able to identify some "hot spots" for us and problem solve some possible solutions. Although we felt as if these issues didn't really apply to school, they assured us that they do because if he is struggling with basic self help skills like feeding himself or buttoning a button fly pair of jeans, that takes away energy and effort that could be devoted to learning. If he is feeling unsure of himself and where he fits into the school environment, he is less focused on learning. They provided us with a measure of peace and a feeling that we weren't alone in this journey.
My husband and I are both problem solvers. We approach life with a "identify the problem and fix it" mentality. Our son is one "problem" that we haven't been able to "fix". The process of helping him adapt to a life that wasn't designed for people like him has been nothing short of physically and emotionally exhausting. Today we found new hope. We found new avenues to pursue. We discovered that there was a team of people who truly care about our child and want him to succeed just as we do. I believe this. And once again, I am presented with the life lesson that I must wait patiently for God's time, not my own. He will provide answers and solutions when the time is right. Is our son "fixed"? No. Will he ever be completely "fixed"? I don't know. Today has increased my faith that maybe in God's time we will have greater answers and understanding. He has a plan for our amazing little man. Someday, we'll know what it is and look back and say "Thank you Lord for your providence."
Today we met with the educational and therapeutic team. It was very very productive. Apparently the neurology report we had taken into school back in November had been placed in his file but never been passed along to the educational team for review. When they located the latest neuro report, they discovered that our son had been diagnosed with attention deficit disorder (ADD) and an evaluation for a language based learning disability had been strongly recommended. From a school standpoint, this opened all kinds of doors. He now qualifies for academic based goals instead of just speech, occupational therapy and physical therapy based goals. The types of services and teaching tools that can now be utilized has been expanded dramatically. A timeline was discussed for implementing his new goals and arranging new evaluations. New doors were opened.
We also discussed the need to have him evaluated for a central auditory processing disorder by a specialized audiologist. They would also like us to pursue having him evaluated for a functional vision disorder by a specialized pediatric optometrist. These evaluations may be able to pinpoint the source of his processing issues. If they can't identify a causation, they can at least narrow down the possibilities. New direction. Maybe some answers.
The assembled team included the special education director of the school district (and mother of a special needs child), his occupational therapist and her supervisor, his speech therapist, his teacher, and his Dad and I. We were able to discuss our concerns and needs as a team with everyone present for the first time. At his individualized education plan (IEP) meeting, several of these members had been missing. As a result, needed information was not passed along. At this meeting, everyone was there and obviously concerned and invested in helping our son meet his goals. His teacher requested communication between the therapy team and himself so that he can better implement their ideas and techniques in the classroom. Emails and phone numbers were exchanged for faster and more effective communication. Communication was improved. More effective goals identified.
As his parents, we were able to shed light on some of the issues that had begun to develop at school. We were able to identify that our son, who had always seen himself as awesome and amazing, was now starting to recognize that he was different from his peers. He is terribly frustrated with himself and his circumstances at the moment. There isn't anything that we as the assembled team can do for him other than help him navigate this time. It is part of the growing process when you have the learning and developmental issues that he has. But this knowledge helped identify why he was becoming resistant to eating in the cafeteria; or being separated from his peers to go to therapy; or seeking approval from his classmates when before he was content to march to his own little drum. Behaviors that they had seen or been concerned with now made more sense. Our sons motivations were identified and clarified. Better understanding and empathy was developed.
We were able to explain what our evenings were like with a kiddo who holds it together all day because he wants to fit in and make everyone happy but explodes upon getting home. They said this is normal for children with his issues. Once the kiddos are home where they feel loved and protected, they feel safe enough to release the frustration they have held in all day at school. The special education director, who has navigated these waters with her own son, also identified that part of his exhaustion by the end of a day/week was also normal. Every single thing he does in a day is still a purposeful, cognitive decision. While most of us learn to do simple life tasks on auto pilot, children like ours still have to think their way through these same seemingly simple tasks. Of course they are tired by the end of a day/week. As a team, we were able to identify some "hot spots" for us and problem solve some possible solutions. Although we felt as if these issues didn't really apply to school, they assured us that they do because if he is struggling with basic self help skills like feeding himself or buttoning a button fly pair of jeans, that takes away energy and effort that could be devoted to learning. If he is feeling unsure of himself and where he fits into the school environment, he is less focused on learning. They provided us with a measure of peace and a feeling that we weren't alone in this journey.
My husband and I are both problem solvers. We approach life with a "identify the problem and fix it" mentality. Our son is one "problem" that we haven't been able to "fix". The process of helping him adapt to a life that wasn't designed for people like him has been nothing short of physically and emotionally exhausting. Today we found new hope. We found new avenues to pursue. We discovered that there was a team of people who truly care about our child and want him to succeed just as we do. I believe this. And once again, I am presented with the life lesson that I must wait patiently for God's time, not my own. He will provide answers and solutions when the time is right. Is our son "fixed"? No. Will he ever be completely "fixed"? I don't know. Today has increased my faith that maybe in God's time we will have greater answers and understanding. He has a plan for our amazing little man. Someday, we'll know what it is and look back and say "Thank you Lord for your providence."
Tuesday, February 12, 2013
Life's Always A Choice
Our son turned seven on Friday. It has been a long journey filled with stress, heartache and joy.
At the end of the first semester of first grade, things aren't looking as rosy as we had hoped. His occupational therapist has asked us to "take a break" from therapy for awhile because he is failing to meet his therapy goals. She thinks he's frustrated with the process and needs a break from it. His teacher has requested a meeting with ourselves and the therapy team at school because he isn't meeting his goals there either. We are dealing with a very frustrated young man these days. As a result, he's not always a barrel of laughs to live with. In light of that, and in celebration of his birthday, I'm choosing to focus on the fun. The following are just a handful of reasons that life is better, more fun, and definitely more interesting with our little monster in it.
At the end of the first semester of first grade, things aren't looking as rosy as we had hoped. His occupational therapist has asked us to "take a break" from therapy for awhile because he is failing to meet his therapy goals. She thinks he's frustrated with the process and needs a break from it. His teacher has requested a meeting with ourselves and the therapy team at school because he isn't meeting his goals there either. We are dealing with a very frustrated young man these days. As a result, he's not always a barrel of laughs to live with. In light of that, and in celebration of his birthday, I'm choosing to focus on the fun. The following are just a handful of reasons that life is better, more fun, and definitely more interesting with our little monster in it.
- His brother says his favorite thing about his little brother is that he can make friends with anyone, anywhere, at any time. For example, when we went to a Crosscutters baseball game this summer, our son adopted the bus driver for the opposing team. He was a very large, somewhat imposing figure of a man. Our son "arrested" him; put his hands behind his back; and put him in jail with all the other "bad guys" he had arrested. Bless his heart! The poor guy played along.
- His father says our son has the funniest little antics or methods of dealing with the challenges that life has thrown at him. His poor motor skills interfere with him doing simple tasks like opening a yogurt tube. His hands are too big and clumsy. Instead, he has learned that he can grab the corner with his teeth and tear the top open. Success!
- Our son is a first class little Romeo. He blatantly flirts with girls/women much older than him... and they fall for it! One afternoon when we went to a local shoe store, he ended up following this cute little blond around the store making eyes at her and declaring "She's stalking me!" At the checkout, we ran into them again and she laughed and laughed. She thought he was adorable.
- One of my favorite things is coming into the living room and finding the boys curled up on the couch together reading a story or watching a show on TV. Our youngest absolutely loves and adores his big brother.
- Our little man always wants everyone included in everything he does. If he gets a snack from his grandmother, he has to be sure to get one for his brother. When he gets a sticker from the doctor, he always wants one for his brother and his Dad.
- He is the defender of the underdog. If someone is in trouble, he has to come to their defense, even if they are blatantly in the wrong. When I told his father that he was too sick to go to work because he needed to stay home and rest, our son strongly defended him. "Let him go to work!" At times, our oldest will tell his brother "No buddy. Mom and Dad are right to tell me that. I was wrong." (Thank God we have a wonderful older son who is so responsible!)
- While completing homework, especially reading his reading book together, he often falls asleep. If he falls asleep and we can't wake him back up, we go ahead and put him in bed for the night. He will groggily ask "Can I brush my teeth twice tomorrow?" Yes little man, you brush your teeth twice everyday.
- This year on Groundhogs Day, he told his grandparents that if the "beaver" saw his shadow it would be an early "summer". He has been very offended that it keeps snowing and now he thinks the "beaver" is a liar.
Friday, January 18, 2013
You've Just Got to Love Him
As we walk into one of our favorite restaurants, the owner steps out from behind the kitchen area to come greet us. He and my youngest son had become buddies through our different trips to the creamery. When we walked in the door, the owner bellowed "How's it going big daddy?" My son looked back with a huge smile and said "There's my big buddy." He then ran up to the counter, high-fived the owner, and proceeded to order his supper. Part way through eating his supper, he informs the owner that he wanted cheese on his hot dog. He and the owner have a conversation about Cheez Wiz before he wanders off to heat up a "special bowl of cheese for his little buddy". After returning to our table, he dollops spoons of melted cheese over the hot dog and informs him that the extra should be used to dip his chips in.
This is a very typical evening out with our son. Everywhere we go, everyone seems to know and love him. If they don't know him, they soon will. He totally lacks boundaries. You will become his friend because he leaves you no choice. We have attended several family reunions or social functions where we knew hardly anyone in attendance. Within moments of our arrival, he manages to introduce himself and engage even the most standoffish individuals in conversation. His specialty is grumpy old men who like to hide by themselves in corners. He wanders over, sits down beside them and starts chatting them up as if they were old buddies. I used to worry that he was bothering people. Now I just stand back and watch him work his magic. By the end of the afternoon, he is hugging and kissing people goodbye who were complete strangers only a few hours before.
I worry about his same age peers though. Kids can be very cruel. They haven't developed the filters that we adults often utilize. They say what comes to mind. When he was younger, it was less apparent that he lagged behind his same age peers. He is now at an age though where he is taller and bigger than kids his age yet it is starting to become more obvious that he lags behind them developmentally. Some of his peers have encouraged him to do things and say things that ended up getting him in trouble at school. Because of his lack of boundaries, he doesn't always recognize that other kids his age don't want to be hugged or kissed or pulled on to get their attention. I fear that he will be seen as "that strange kid" that the others tease or make fun of.
There are signs that he is starting to recognize that there are some differences between him and his peers. He displays some subtle behavior shifts that show a rising awareness of the differences. He is developing a greater resistance to attending his occupational therapy sessions. His therapist voiced that he doesn't understand why he needs to keep coming to OT because he doesn't see himself as different from his peers. He definitely has a need for the services because he isn't meeting his therapy goals. I think his resistance has more to do with the fact that he is starting to see the difference between him and his peers. My heart aches for this transition/transformation. He is NOT dumb or slow intellectually. Unfortunately, his body will not let him express himself they way his same age peers can. There is an extremely bright child trapped inside a body that will not cooperate to move or speak the way he wants it to. To then recognize that others see him as different, must be frustrating beyond belief. I can't do anything to help him except offer my love and support. This is something he must learn and survive.
I have little fear for our son long term. He will learn to overcome his expressive issues. He is too strong willed by nature to do otherwise. He will develop friendships and relationships with many people along the way. He is too social by nature to do otherwise. He will succeed in whatever he cares strongly about. He is too oppositional by nature to do otherwise. I just pray that he doesn't encounter too much heartache or disappointment along the way. Life has given him enough of that. I pray we know how to support him through these years of transition and trial. Please Lord, help our son grow and develop into the man that You want him to be. It's going to be quite a journey.
This is a very typical evening out with our son. Everywhere we go, everyone seems to know and love him. If they don't know him, they soon will. He totally lacks boundaries. You will become his friend because he leaves you no choice. We have attended several family reunions or social functions where we knew hardly anyone in attendance. Within moments of our arrival, he manages to introduce himself and engage even the most standoffish individuals in conversation. His specialty is grumpy old men who like to hide by themselves in corners. He wanders over, sits down beside them and starts chatting them up as if they were old buddies. I used to worry that he was bothering people. Now I just stand back and watch him work his magic. By the end of the afternoon, he is hugging and kissing people goodbye who were complete strangers only a few hours before.
I worry about his same age peers though. Kids can be very cruel. They haven't developed the filters that we adults often utilize. They say what comes to mind. When he was younger, it was less apparent that he lagged behind his same age peers. He is now at an age though where he is taller and bigger than kids his age yet it is starting to become more obvious that he lags behind them developmentally. Some of his peers have encouraged him to do things and say things that ended up getting him in trouble at school. Because of his lack of boundaries, he doesn't always recognize that other kids his age don't want to be hugged or kissed or pulled on to get their attention. I fear that he will be seen as "that strange kid" that the others tease or make fun of.
There are signs that he is starting to recognize that there are some differences between him and his peers. He displays some subtle behavior shifts that show a rising awareness of the differences. He is developing a greater resistance to attending his occupational therapy sessions. His therapist voiced that he doesn't understand why he needs to keep coming to OT because he doesn't see himself as different from his peers. He definitely has a need for the services because he isn't meeting his therapy goals. I think his resistance has more to do with the fact that he is starting to see the difference between him and his peers. My heart aches for this transition/transformation. He is NOT dumb or slow intellectually. Unfortunately, his body will not let him express himself they way his same age peers can. There is an extremely bright child trapped inside a body that will not cooperate to move or speak the way he wants it to. To then recognize that others see him as different, must be frustrating beyond belief. I can't do anything to help him except offer my love and support. This is something he must learn and survive.
I have little fear for our son long term. He will learn to overcome his expressive issues. He is too strong willed by nature to do otherwise. He will develop friendships and relationships with many people along the way. He is too social by nature to do otherwise. He will succeed in whatever he cares strongly about. He is too oppositional by nature to do otherwise. I just pray that he doesn't encounter too much heartache or disappointment along the way. Life has given him enough of that. I pray we know how to support him through these years of transition and trial. Please Lord, help our son grow and develop into the man that You want him to be. It's going to be quite a journey.
Friday, January 11, 2013
Learning to Find the Humor Again
I haven't written for quite awhile. Life had gotten very busy and my writing needed to take a backseat. Ironically, if anything, life has gotten even more hectic and complicated. In light of life's recent twists, turns, and obstacles, I decided to make the time to write. I may be the only one who reads this, but the writing of it is a cathartic practice that helps to put the chaos that is my world into its proper perspective.
Our youngest son has been in a developmental lag for longer than we have typically experienced in the past. It has all of us a bit stymied and frustrated. His occupational therapist says his focus is much improved from the past but his motivation is lacking. At school, they tell us he is very motivated to do well and actively participates but lacks focus. At home, he is exhausted and prone to tantrums because he is exhausted. At least once every couple weeks, he falls asleep soon after coming home from school and sleeps until the next morning. We can tell the day of the week based upon his frustration level and tendency for tantrums. The later in the week, the greater the likelihood a meltdown will occur.
My method of coping with stress is to utilize a dry sarcastic sense of humor. In recent months, I had a difficult time finding the humor in our son's behavior. It didn't seem to matter what I tried or how hard I worked, he didn't seem to be improving. With everything else that life has thrown at me, I just couldn't find the silver lining or the funny in the moments like I had in the past. I was frustrated. Why couldn't I help my own son? I was angry. I didn't sign up for this. Why couldn't he be like other kids his age? I was scared. What if he doesn't start to catch up with his peers? Will life always be this hard for him? For us?
I look at the person I was before our youngest son. There are things that I miss about that girl. She thought the world was hers to take. Nothing was out of reach with enough hard work and effort. Wow. What naivete, or was it optimism?
On the other hand, I look at that girl and there are things about her that sadden me. How judgmental she could be! She looked at other people's life experiences and judged them without knowing what their lives were really like. Wow. I'm so sorry for that.
That girl also thought she knew the Lord. But her understanding of the Lord was based on a girl who seemed to be standing with her hands on her hips saying "Here I am Lord. Here's what I deserve. I'm your follower. Now make it happen." Wow. What complacency and arrogance. I'm especially sorry for that.
Life with my youngest son has opened my eyes in so many ways. I discovered that it doesn't matter what life hands you. It is never going to be fair. Or easy. Or uncomplicated. That's not how life works. What does ultimately matter is how you handle it.
I may no longer be that naive or optimistic girl of my past. Indeed, I am much less likely to judge the life of those around me. Instead, I have been greatly humbled by life. It has taken my hearing. It has shown me weakness of body and spirit. It has shown me that I can't cure my son or make him better. I can't control what circumstances life brings me and my family.
I am once again beginning to see the humor in life with our youngest son. He exhausts me. He frustrates me. He also makes me laugh like crazy.
We argued over socks. An argument that involved twenty minutes of trying to rationally, calmly explain why socks must be worn; that the socks must be dry ones, not wet ones; and that they must match since I sent him to school with his sneakers on the wrong feet the day before. (I didn't want them to think I was a COMPLETE failure as a mother!) For twenty minutes, I was calm. For twenty minutes, I was patient. For twenty minutes, I was a good mother. After twenty minutes... I lost my mind and found myself hopping up and down and ranting "Put on some matching socks right this minute or I am going to lose my mind." Who can't find humor in moments of insanity like that?
When his father told him he couldn't go to the Atrium Cafe at the hospital after therapy, he lay down in the middle of the hospital, on the floor and held a civil protest. Minutes later, he jumped up and declared he was the "worstest father in the world". He then ran down the hall and disappeared out of sight. My husband found him hiding in a corner down the hospital corridor. Who can't find humor in such lunacy?
After a particularly nasty meltdown, we gave him a bath to help him calm himself down. The warm water seems to take all the frustration and aggression out of him. It almost always works. As he lay in the tub, finally calm and relaxed, his father attempted to process the tantrum with him. "Now don't you think instead of throwing a tantrum and yelling at us, you could just try talking to us?" Our son looks at him, strokes his chin in serious thought and replies "Hmm. I should try that." Who wouldn't laugh at that? Well, come to think of it, maybe not everyone. But when faced with moments like these on a regular basis, you learn to find the humor when and where you can.
The life I am living has shown me that I can survive it. Not with my hands on my hips with demands of arrogance. Instead, I am surviving down on my knees, humbled in prayer. Please Lord, see me through these days. I don't know what you have planned for me and my family but if it is your will, please bring us through it. Maybe that was the lesson meant for me all along.
Our youngest son has been in a developmental lag for longer than we have typically experienced in the past. It has all of us a bit stymied and frustrated. His occupational therapist says his focus is much improved from the past but his motivation is lacking. At school, they tell us he is very motivated to do well and actively participates but lacks focus. At home, he is exhausted and prone to tantrums because he is exhausted. At least once every couple weeks, he falls asleep soon after coming home from school and sleeps until the next morning. We can tell the day of the week based upon his frustration level and tendency for tantrums. The later in the week, the greater the likelihood a meltdown will occur.
My method of coping with stress is to utilize a dry sarcastic sense of humor. In recent months, I had a difficult time finding the humor in our son's behavior. It didn't seem to matter what I tried or how hard I worked, he didn't seem to be improving. With everything else that life has thrown at me, I just couldn't find the silver lining or the funny in the moments like I had in the past. I was frustrated. Why couldn't I help my own son? I was angry. I didn't sign up for this. Why couldn't he be like other kids his age? I was scared. What if he doesn't start to catch up with his peers? Will life always be this hard for him? For us?
I look at the person I was before our youngest son. There are things that I miss about that girl. She thought the world was hers to take. Nothing was out of reach with enough hard work and effort. Wow. What naivete, or was it optimism?
On the other hand, I look at that girl and there are things about her that sadden me. How judgmental she could be! She looked at other people's life experiences and judged them without knowing what their lives were really like. Wow. I'm so sorry for that.
That girl also thought she knew the Lord. But her understanding of the Lord was based on a girl who seemed to be standing with her hands on her hips saying "Here I am Lord. Here's what I deserve. I'm your follower. Now make it happen." Wow. What complacency and arrogance. I'm especially sorry for that.
Life with my youngest son has opened my eyes in so many ways. I discovered that it doesn't matter what life hands you. It is never going to be fair. Or easy. Or uncomplicated. That's not how life works. What does ultimately matter is how you handle it.
I may no longer be that naive or optimistic girl of my past. Indeed, I am much less likely to judge the life of those around me. Instead, I have been greatly humbled by life. It has taken my hearing. It has shown me weakness of body and spirit. It has shown me that I can't cure my son or make him better. I can't control what circumstances life brings me and my family.
I am once again beginning to see the humor in life with our youngest son. He exhausts me. He frustrates me. He also makes me laugh like crazy.
We argued over socks. An argument that involved twenty minutes of trying to rationally, calmly explain why socks must be worn; that the socks must be dry ones, not wet ones; and that they must match since I sent him to school with his sneakers on the wrong feet the day before. (I didn't want them to think I was a COMPLETE failure as a mother!) For twenty minutes, I was calm. For twenty minutes, I was patient. For twenty minutes, I was a good mother. After twenty minutes... I lost my mind and found myself hopping up and down and ranting "Put on some matching socks right this minute or I am going to lose my mind." Who can't find humor in moments of insanity like that?
When his father told him he couldn't go to the Atrium Cafe at the hospital after therapy, he lay down in the middle of the hospital, on the floor and held a civil protest. Minutes later, he jumped up and declared he was the "worstest father in the world". He then ran down the hall and disappeared out of sight. My husband found him hiding in a corner down the hospital corridor. Who can't find humor in such lunacy?
After a particularly nasty meltdown, we gave him a bath to help him calm himself down. The warm water seems to take all the frustration and aggression out of him. It almost always works. As he lay in the tub, finally calm and relaxed, his father attempted to process the tantrum with him. "Now don't you think instead of throwing a tantrum and yelling at us, you could just try talking to us?" Our son looks at him, strokes his chin in serious thought and replies "Hmm. I should try that." Who wouldn't laugh at that? Well, come to think of it, maybe not everyone. But when faced with moments like these on a regular basis, you learn to find the humor when and where you can.
The life I am living has shown me that I can survive it. Not with my hands on my hips with demands of arrogance. Instead, I am surviving down on my knees, humbled in prayer. Please Lord, see me through these days. I don't know what you have planned for me and my family but if it is your will, please bring us through it. Maybe that was the lesson meant for me all along.
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