My mom got another one of those emails today. They said I had a bad day at school. I can understand why they might say that. Sometimes I can't focus on what they are saying or what they are doing. Other times, I think of something that needs to be done and I hop right out of my seat to go do it. And sometimes, I just start to cry. I'm so frustrated and sad. I don't know what else to do. If they knew what it took for me to make it through a day, they might say I had a pretty good day. If they only knew.
At the end of the day, I'm so tired that sometimes I fall asleep in the middle of saying my prayers. It takes a lot of energy trying to be good and do everything everyone expects of me. I sleep very soundly and would prefer to sleep ten to twelve hours most nights. Even though I go to bed by eight o'clock every night, I still have a hard time waking up in the morning. It takes me awhile to tolerate light, or sound... or people. I am NOT a morning person.
Getting dressed isn't as hard as it used to be. I'm getting pretty good at it. I still have trouble buttoning and zipping jeans so I mostly wear jogging pants or athletic pants to school but I'm getting better and better with my jeans. Mom gets frustrated with me sometimes because I still put my shirt on backwards most days. She thinks I should be able to do this correctly by now so when she gets frustrated with me, I get frustrated with her. I don't mean to do it wrong all the time. Some days I still put my socks on with the heel on top but not as often. I'm getting better at fixing them when I get it wrong. I can also put on my own sneakers and pull the strings tight. My hands don't seem to cooperate with the rest of the shoe tying process. It makes me really frustrated, especially when we are trying to get to the bus on time. Mom makes my brother tie them for me on school days. I hate it when he makes comments that I should be able to do this by now. I know that but my hands won't do it right. We practice on the weekends when we have more time and shoe tying is our new summer goal. I want to be able to do it by myself by the time I start third grade.
I pick a fight with my brother and my mom every morning when it's time to go out to the bus. I'm really hoping that I won't have to go to school or ride on that bus. I just want to stay home with my family. I tell them every day that I miss them and that time with them is the best part of my day. They still make me go. Sometimes I think they don't understand.
My bus ride is forty minutes long. I have a really hard time sitting still and staying calm. Plus there is this girl who rides my bus that is also in my class at school who says mean things to me and makes me cry. She tells me I smell and I'm a baby. I really just want her to be my friend but she's so mean. I don't understand why. Sometimes she gets the other kids on the bus or at school to say mean things to me too. It's really hard for me to understand because everyone else I know loves me. All the people at the fire hall love me. All the people at church love me. And all of my extended family love me and want to spend time with me. Why do they act like that at school? It hurts and it's confusing.
I really like my teachers and all the grown ups. It makes me sad that I frustrate them sometimes. When I have to go to the bathroom, I forget that I have to raise my hand and ask. I don't realize I have to go until it's almost too late and I don't want to have an accident. That is embarrassing. So when I realize I have to go, I jump up and go to the bathroom without asking. My teacher gets upset with me. When the other classes are in the hall going somewhere, I can't stop hearing them. I can't focus on what my teacher is saying or what I'm supposed to be doing. My teacher tries to help by teaching with the door closed but I can still hear them. I know it frustrates her. I'm really sorry.
Sometimes, I do something wrong or something happens and the teachers ask me to tell them about it. I don't always want to tell them because I don't want them to get mad at me again. It always feels like I'm upsetting them. Other times, I just can't explain it. The words are right in my head. I know what happened but I can't seem to be able to tell a story from beginning to end in a logical order that makes sense to other people. When they ask me questions to help me try to explain, I get so frustrated. Why can't they just understand what I am telling them? It's so hard to get the words out some days when my stuttering and disfluencies are at their worst. Then they ask me too many questions. I just don't know. I just want them to stop asking me questions! Don't they know how hard it is for me to explain things?
I have one best friend and one good friend. They are both in different classes this year. I miss them so much. Because the other kids don't like the way I stare, they think I'm weird and don't always want to play with me. They don't realize that staring is learning. I'm watching what they are doing and trying to process it. I want to be like them.
After the day is over and I've survived another long bus ride home with the mean girl, I finally get to be home with my family. I'm so tired. I wish they knew how much I missed them and how much I wanted to stay home with them. Instead, I often take my frustration out on them, especially when I have to start working on all my homework. Because I need extra help, that means I have extra homework. In addition to my regular homework, I also have extra practice spelling sheets to complete and an extra reading story to read each night. If my mom and dad don't keep me focused, I actually fall asleep in the middle of reading the stories. There are nights that Mom has to write my teachers a note telling them that I fell asleep around five or six o'clock and didn't get my homework done.
They said I had a bad day. I know I did. That's why I get so frustrated sometimes. I love people so much and want to make everyone happy. Being with other people makes me smile and laugh. The energy inside of me just wants to burst out of me but school doesn't like me like that. They want me quiet and still. So I try. I really do. But I know I'm not doing it right and that makes me sad.
Thursday, March 27, 2014
Friday, February 28, 2014
Medication Is Not A Panacea
I am writing tonight in celebration of the journey. It's easy to get caught up in what isn't going well in life. It's easy for someone like me to identify the problems and seek out the answers. Unfortunately, life doesn't always offer clear cut challenges with simple solutions. Instead, life often feels like a ride on a roller coaster through a maze steeped in fog. You can get bogged down in the wrong turn, the misdirection, and the dead ends. More challenging, yet even more rewarding, is seeing the blessings, the joy, and the fun in the journey.
For months we struggled with the idea of whether or not to use medical intervention to help our son learn to control his impulsive tendencies and learn to focus in the classroom. When we finally decided to take the step to start him on medication and then it didn't work, not once but twice, it was easy to become discouraged. It was easy to want to give up. Instead, we dug deep, prayed hard, and gave it one more try. Those efforts have been rewarded with success. For the first time in a long time, we are seeing improvement in focus and impulse control. We have tweaked the med schedule at home and with the doctors to achieve the best possible results. As a team, we are beginning to see success where before there was frustration.
The medicine regime we have implemented for our son's health issues has also begun to pay off. We have had a very healthy winter season for the first time in his life. He was able to come down with an illness and successfully fight it off without an asthma flair or a steroid boost. This is also a new and exciting development. Our hard work and efforts seem to be working.
Medicine will not be able to address all of our son's unique quirks and developmental issues. Medicine cannot help him when he is fixated or having one of his rain man days. When he gets a thought, or phrase, or song, or activity stuck in his head and can't let it go, all we can do is ride it out and help him work through it. We are learning to see the humor in these moments. It can be INCREDIBLY annoying and frustrating and exhausting and heartbreaking. When you take a step back and look at it from a more detached perspective, it can be really humorous, sometimes even endearing. Not always. But sometimes.
Medical intervention will not address our son's tendency to "mouth" objects. This unconscious chewing and eating of inedible objects tends to go hand in hand with his tendency to stutter and drool. There are weeks when he does none of these things. There are weeks when it seems he does nothing BUT these things. We are learning to roll with it. It's not intentional. It doesn't appear to be controllable. We used to find it embarrassing when he did these things in public. We are now so grateful for how far he has come, that we figure if someone wants to judge him for something so out of his control, that's their problem. They are missing the opportunity to meet, and get to know, one of the most loving souls they will ever encounter. His love is boundless. If they miss that chance, I feel sorry for them, not the other way around.
We have come so very, very far in eight very short years. The journey is far from over. If there were anything that I truly pray for and honestly look forward to, it would be the ability to relax. To let my guard down. To breathe. Life for us at this time means watching, adjusting, and adapting. I pray for a down turn on that roller coaster ride before the climb up the next hill. The twists and turns are coming, of that I have no doubt. Lord, please grant me some time to breathe. Relax. Enjoy. I'll be up to your next challenge. Just give me time to refuel first.
For months we struggled with the idea of whether or not to use medical intervention to help our son learn to control his impulsive tendencies and learn to focus in the classroom. When we finally decided to take the step to start him on medication and then it didn't work, not once but twice, it was easy to become discouraged. It was easy to want to give up. Instead, we dug deep, prayed hard, and gave it one more try. Those efforts have been rewarded with success. For the first time in a long time, we are seeing improvement in focus and impulse control. We have tweaked the med schedule at home and with the doctors to achieve the best possible results. As a team, we are beginning to see success where before there was frustration.
The medicine regime we have implemented for our son's health issues has also begun to pay off. We have had a very healthy winter season for the first time in his life. He was able to come down with an illness and successfully fight it off without an asthma flair or a steroid boost. This is also a new and exciting development. Our hard work and efforts seem to be working.
Medicine will not be able to address all of our son's unique quirks and developmental issues. Medicine cannot help him when he is fixated or having one of his rain man days. When he gets a thought, or phrase, or song, or activity stuck in his head and can't let it go, all we can do is ride it out and help him work through it. We are learning to see the humor in these moments. It can be INCREDIBLY annoying and frustrating and exhausting and heartbreaking. When you take a step back and look at it from a more detached perspective, it can be really humorous, sometimes even endearing. Not always. But sometimes.
Medical intervention will not address our son's tendency to "mouth" objects. This unconscious chewing and eating of inedible objects tends to go hand in hand with his tendency to stutter and drool. There are weeks when he does none of these things. There are weeks when it seems he does nothing BUT these things. We are learning to roll with it. It's not intentional. It doesn't appear to be controllable. We used to find it embarrassing when he did these things in public. We are now so grateful for how far he has come, that we figure if someone wants to judge him for something so out of his control, that's their problem. They are missing the opportunity to meet, and get to know, one of the most loving souls they will ever encounter. His love is boundless. If they miss that chance, I feel sorry for them, not the other way around.
We have come so very, very far in eight very short years. The journey is far from over. If there were anything that I truly pray for and honestly look forward to, it would be the ability to relax. To let my guard down. To breathe. Life for us at this time means watching, adjusting, and adapting. I pray for a down turn on that roller coaster ride before the climb up the next hill. The twists and turns are coming, of that I have no doubt. Lord, please grant me some time to breathe. Relax. Enjoy. I'll be up to your next challenge. Just give me time to refuel first.
Saturday, February 15, 2014
Finding Comfort When the Storm Subsides
It's interesting how chaos can become a normal part of your life. Learning to survive each new struggle; jumping over each new hurdle; pushing on through each new obstacle becomes normal, even expected. What do you do when the storm subsides? What becomes your new normal?
We have been attempting to stabilize our son on an attention deficit disorder medication. As I have discussed recently, he started his third new medicine for this issue almost a month ago. Previous medical attempts resulted in unwanted adverse reactions. I am happy to report that his most recent medication has been not only successful, but also beneficial. For the first time since we started this process back in November, his teaching team is reporting a decrease in distractibility and impulsiveness. We have also not noticed the increased agitation that was previously experienced with the other medications that he tried. He is still having trouble focusing and controlling his impulsive tendencies in the afternoons but his neurologist had mentioned the possibility of needing to introduce an afternoon dose once he has been stabilized on the current medication. We are taking this process one step at a time. It has been nice to receive positive feedback from the school regarding his ability to focus.
In addition to our son's learning and developmental issues, usually around this time of year he develops an asthma flair that lasts most of the winter season. This year his asthma seems to be well controlled. He recently had a cold that developed into strep throat. Fortunately, it hasn't settled into his chest the way it has in years past. What a blessing!
If you've never lived with the constant need to watch for signs of illness or signs that your child is becoming overstimulated and at risk of becoming out of control, you will have a very hard time understanding what I am talking about. If you have lived with a chronically ill family member or a child with learning and/or developmental issues, then you may understand. When life begins to settle into a comfortable pattern, when the storm you have been living, begins to subside, you are left with a hole that needs to be filled. Time that was previously spent on this family member is now available. Energy that was spent on activity, planning, stress, and worry can now be put to use in other areas. Patterns of behavior between family members begin to shift and change and need to be renegotiated and adjusted. It opens the door to potentially positive change. It can also open the door to potentially destructive changes if you don't work as a team and communicate effectively with one another.
I will give an example of this for those who haven't been in our shoes. Maybe those that have can see a bit of themselves in our situation. Because my background is education/corrections and I am a Type A planner/overachiever by nature, I have had a tendency to take the lead in researching information regarding our son's health, learning, and developmental issues. I pushed for genetic testing. I researched and arranged for occupational, physical, and speech therapy. I researched, questioned, and pushed for answers regarding our son's issues. It become normal for me to take the lead in these things because it was my area of training and expertise. For a long time, my husband took a backseat in this process and followed my lead. It is only in recent years that he has taken a more active role in questioning and advising which direction we went with our son. It has been a transition and a shifting of roles for both of us. Even our sons had begun to fall into established roles. Our oldest saw himself as the "smart one" and the "good one". He is both of those things but we could see it was how he was beginning to identify himself in comparison to his brother. On the other hand, our youngest often seemed to identify himself as the "rebellious one". He was much more likely to be oppositional and difficult.
As life has begun to settle into a more positive version of normal, we have been working on slowly adapting and changing these roles that we had come to find ourselves in. It takes diligent conscious awareness of your behaviors as an individual and as a family member to recognize when the roles you have assumed have benefited the family and when they have hindered the family. Now that our family is out of crisis mode, it is no longer beneficial for me to take such a strong lead in all areas of our family life. There is a need to distribute the duties, chores and responsibilities. To continue to take that lead, will only lead to resentment and frustration down the line for everyone.
So what do you do when the storm subsides? Just like the aftermath of any storm, you take stock of where you are and what damage has been inflicted. You identify what resources are available and at your disposal. Finally, it must be recognized that change may be necessary and everyone must be willing to do their part to make the needed changes. I pray we continue to be up to the challenge. I pray we are working as a team to meet each other's needs. May the Lord continue to bless us with His blessings. He has seen us through some incredible challenges. I am grateful because they have brought us closer as a family.
We have been attempting to stabilize our son on an attention deficit disorder medication. As I have discussed recently, he started his third new medicine for this issue almost a month ago. Previous medical attempts resulted in unwanted adverse reactions. I am happy to report that his most recent medication has been not only successful, but also beneficial. For the first time since we started this process back in November, his teaching team is reporting a decrease in distractibility and impulsiveness. We have also not noticed the increased agitation that was previously experienced with the other medications that he tried. He is still having trouble focusing and controlling his impulsive tendencies in the afternoons but his neurologist had mentioned the possibility of needing to introduce an afternoon dose once he has been stabilized on the current medication. We are taking this process one step at a time. It has been nice to receive positive feedback from the school regarding his ability to focus.
In addition to our son's learning and developmental issues, usually around this time of year he develops an asthma flair that lasts most of the winter season. This year his asthma seems to be well controlled. He recently had a cold that developed into strep throat. Fortunately, it hasn't settled into his chest the way it has in years past. What a blessing!
If you've never lived with the constant need to watch for signs of illness or signs that your child is becoming overstimulated and at risk of becoming out of control, you will have a very hard time understanding what I am talking about. If you have lived with a chronically ill family member or a child with learning and/or developmental issues, then you may understand. When life begins to settle into a comfortable pattern, when the storm you have been living, begins to subside, you are left with a hole that needs to be filled. Time that was previously spent on this family member is now available. Energy that was spent on activity, planning, stress, and worry can now be put to use in other areas. Patterns of behavior between family members begin to shift and change and need to be renegotiated and adjusted. It opens the door to potentially positive change. It can also open the door to potentially destructive changes if you don't work as a team and communicate effectively with one another.
I will give an example of this for those who haven't been in our shoes. Maybe those that have can see a bit of themselves in our situation. Because my background is education/corrections and I am a Type A planner/overachiever by nature, I have had a tendency to take the lead in researching information regarding our son's health, learning, and developmental issues. I pushed for genetic testing. I researched and arranged for occupational, physical, and speech therapy. I researched, questioned, and pushed for answers regarding our son's issues. It become normal for me to take the lead in these things because it was my area of training and expertise. For a long time, my husband took a backseat in this process and followed my lead. It is only in recent years that he has taken a more active role in questioning and advising which direction we went with our son. It has been a transition and a shifting of roles for both of us. Even our sons had begun to fall into established roles. Our oldest saw himself as the "smart one" and the "good one". He is both of those things but we could see it was how he was beginning to identify himself in comparison to his brother. On the other hand, our youngest often seemed to identify himself as the "rebellious one". He was much more likely to be oppositional and difficult.
As life has begun to settle into a more positive version of normal, we have been working on slowly adapting and changing these roles that we had come to find ourselves in. It takes diligent conscious awareness of your behaviors as an individual and as a family member to recognize when the roles you have assumed have benefited the family and when they have hindered the family. Now that our family is out of crisis mode, it is no longer beneficial for me to take such a strong lead in all areas of our family life. There is a need to distribute the duties, chores and responsibilities. To continue to take that lead, will only lead to resentment and frustration down the line for everyone.
So what do you do when the storm subsides? Just like the aftermath of any storm, you take stock of where you are and what damage has been inflicted. You identify what resources are available and at your disposal. Finally, it must be recognized that change may be necessary and everyone must be willing to do their part to make the needed changes. I pray we continue to be up to the challenge. I pray we are working as a team to meet each other's needs. May the Lord continue to bless us with His blessings. He has seen us through some incredible challenges. I am grateful because they have brought us closer as a family.
Tuesday, January 28, 2014
Striking Out Medically
In baseball, it's three strikes and you're out. In the legal system in many states, it's three strikes and you're out. When it comes to experimenting with Attention Deficit Disorder (ADD) medicines and our son's body, it will definitely be three strikes and you're out. Tonight we started our son on a new ADD medicine. I'm praying it does what it is intended to do without the negative side effects we have experienced with the two previous ADD medicines.
Coming to the decision to start our son on ADD medicines is not something we took lightly or casually. If you have read my posts in the past, or you know us personally, you know that my education and work background is in behavior management. For years, I told the neurology team that we wouldn't even consider medication. We would address our sons behaviors and our concerns through behavior management and diet. When things started getting more difficult and more challenging, I read and studied and researched. I talked to other people living through what we were experiencing, his teaching team, and his therapists. In general, I made a nuisance of myself, demanding that everyone do all that they could for my child without the benefit of medication. I was self righteous in my desire to stay medication free. It was my badge of honor that we were doing it by ourselves without medical intervention.
On the other hand, our son had an increasingly difficult time controlling his impulsiveness. He struggled to bring his energy level down to an appropriate level once over stimulated without an explosion to release the pent up energy. On top of that, his tendency to fixate inappropriately on ideas, behaviors, or objects seemed to be increasing. The combination of these behavioral tendencies was resulting in some pretty unsafe episodes that resulted in some real close calls when it came to his physical safety. It was also having an impact on his learning and his ability to learn. It was also having an impact on our family and our marriage.
The first two medicines that the neurology team tried were from the old tried and true stimulant family. They have the longest track record of use, with the most research backing their effectiveness. I know because I read, researched, and questioned until I was sure that they were a viable option. It was a logical place to start. Unfortunately, they only increased our son's tendency to fixate and his natural intensity. Our happy go lucky, love the world son began to show aggressive tendencies and angry outbursts that were not normal for him. His rain man, fixated behaviors seemed to amplify. He also seemed to be dropping a lot of weight. All told, he lost over ten pounds over the last month or two. In addition to these negative behavioral and physical side effects, the school was not seeing the desired increase in focus and productivity in school that they were hoping for. The call was made to take him off the medicines.
For the last two weeks, our son has been medicine free. He is a whirling swirling ping pong ball in a hurricane. He has torn the house apart as he bounces from one activity or idea or object to another. The idea of him completing a task or cleaning up after himself is laughable. It has been exhausting. It has also been enlightening. He has (for the most part) reverted to his old happy go lucky self. (Okay. Homework time is still a nightmare but isn't that normal for a lot of kids?) He is now eating CONSTANTLY. I hadn't realized how little he was eating until he regained his normal appetite. Sitting back (probably because I'm too tired to do anything else), it makes me very sad. It hurts to know how much he was changed by the chemicals in his body. It hurts to know that we risked the judgment and sensor of the "chemical free" parent crowd without the benefit of positive change. It hurts to know that we once again tried to make a change for the better for our son without the ability to effectively help him. Sometimes, it feels like we are beating our heads against the wall.
So tonight, we took our final leap of faith. We started him on another (and his last) ADD medicine. It is a non-stimulant called Tenex. He will take it at bedtime for four days since the primary side effect is sedation. (It's a sign that I'm a bad mother that when they told me that I actually smiled and thought "wouldn't that be nice." Just kidding. Sort of.) This weekend, he will switch to a morning and after school dosage time frame. We are all praying that it has the desired effect. I am keeping an open mind. Barring any significantly negative side effects, I am committing to at least a month or two to gauge it's effectiveness. I'm tuning out the negative voices in my head that tell me I'm a bad mother because I wasn't strong enough to make a difference for my son without medication. I will continue to read about dietary changes and behavior plans that may be beneficial if this current (and final) medicine doesn't work out. I will also continue to pray every single day that the Lord has a plan in mind for my little man; that he has him wrapped in His love; and guides us to make the choices that need to be made, even when they take us down paths that we would rather not travel. Please Lord watch over our boy and guide us.
Coming to the decision to start our son on ADD medicines is not something we took lightly or casually. If you have read my posts in the past, or you know us personally, you know that my education and work background is in behavior management. For years, I told the neurology team that we wouldn't even consider medication. We would address our sons behaviors and our concerns through behavior management and diet. When things started getting more difficult and more challenging, I read and studied and researched. I talked to other people living through what we were experiencing, his teaching team, and his therapists. In general, I made a nuisance of myself, demanding that everyone do all that they could for my child without the benefit of medication. I was self righteous in my desire to stay medication free. It was my badge of honor that we were doing it by ourselves without medical intervention.
On the other hand, our son had an increasingly difficult time controlling his impulsiveness. He struggled to bring his energy level down to an appropriate level once over stimulated without an explosion to release the pent up energy. On top of that, his tendency to fixate inappropriately on ideas, behaviors, or objects seemed to be increasing. The combination of these behavioral tendencies was resulting in some pretty unsafe episodes that resulted in some real close calls when it came to his physical safety. It was also having an impact on his learning and his ability to learn. It was also having an impact on our family and our marriage.
The first two medicines that the neurology team tried were from the old tried and true stimulant family. They have the longest track record of use, with the most research backing their effectiveness. I know because I read, researched, and questioned until I was sure that they were a viable option. It was a logical place to start. Unfortunately, they only increased our son's tendency to fixate and his natural intensity. Our happy go lucky, love the world son began to show aggressive tendencies and angry outbursts that were not normal for him. His rain man, fixated behaviors seemed to amplify. He also seemed to be dropping a lot of weight. All told, he lost over ten pounds over the last month or two. In addition to these negative behavioral and physical side effects, the school was not seeing the desired increase in focus and productivity in school that they were hoping for. The call was made to take him off the medicines.
For the last two weeks, our son has been medicine free. He is a whirling swirling ping pong ball in a hurricane. He has torn the house apart as he bounces from one activity or idea or object to another. The idea of him completing a task or cleaning up after himself is laughable. It has been exhausting. It has also been enlightening. He has (for the most part) reverted to his old happy go lucky self. (Okay. Homework time is still a nightmare but isn't that normal for a lot of kids?) He is now eating CONSTANTLY. I hadn't realized how little he was eating until he regained his normal appetite. Sitting back (probably because I'm too tired to do anything else), it makes me very sad. It hurts to know how much he was changed by the chemicals in his body. It hurts to know that we risked the judgment and sensor of the "chemical free" parent crowd without the benefit of positive change. It hurts to know that we once again tried to make a change for the better for our son without the ability to effectively help him. Sometimes, it feels like we are beating our heads against the wall.
So tonight, we took our final leap of faith. We started him on another (and his last) ADD medicine. It is a non-stimulant called Tenex. He will take it at bedtime for four days since the primary side effect is sedation. (It's a sign that I'm a bad mother that when they told me that I actually smiled and thought "wouldn't that be nice." Just kidding. Sort of.) This weekend, he will switch to a morning and after school dosage time frame. We are all praying that it has the desired effect. I am keeping an open mind. Barring any significantly negative side effects, I am committing to at least a month or two to gauge it's effectiveness. I'm tuning out the negative voices in my head that tell me I'm a bad mother because I wasn't strong enough to make a difference for my son without medication. I will continue to read about dietary changes and behavior plans that may be beneficial if this current (and final) medicine doesn't work out. I will also continue to pray every single day that the Lord has a plan in mind for my little man; that he has him wrapped in His love; and guides us to make the choices that need to be made, even when they take us down paths that we would rather not travel. Please Lord watch over our boy and guide us.
Friday, January 17, 2014
Finding a Medical Baseline
If you've read my posts in the past, you know that after years of putting off the medicine option for our youngest son, we broke down and decided to go that route. It has not been going smoothly. We have now tried both families of the stimulant group of medicines. His teachers noticed little change at the bottom end of the dosage spectrum. Each time we have increased these bottom end dosages by only one or two increments, we have experienced some pretty negative side effects. Those side effects have resulted in a removal from the current medicine and a new consultation to evaluate our options. At the last appointment, they stated that if he doesn't do well with this current medication, we will need to re-evaluate and move to a completely different family of medicines. It looks like that's what we are going to be doing.
The stimulants seem to be doing the opposite of what they should be doing. In a child with Attention Deficit Disorder (ADD), they can have a sedative like effect that helps to slow the brain down to allow for better processing and a reduction in impulsiveness. According to his teachers, they have been experiencing an increase in his chattiness; impulsive desire to be up and moving and out of his seat; and hyper awareness of everything going on around him. Because his current medicine is a 30/70 release dosage, they should see increased focus and decreased impulsiveness as the school day progresses. This medicine releases 30% of its dosage immediately. The remaining 70% of the dosage is released throughout the day. This should translate into decreased impulsiveness and increased focus as the school day progresses. According to the feedback from his teaching team, the opposite is occurring.
In the evenings, we have been experiencing what they refer to as "rebound behaviors". As the evenings progress and the medicine begins to withdraw from his system, he becomes very intense and edgy. His tendency to fixate on conversations or ideas or activities intensifies. We have seen these type of behaviors displayed in many different areas. His fixated behavior has even increased to such a level that we have had to take his Kindle away from him. When we attempt to have him put it away for supper, or homework, or the evening, he has an absolute full blown "Rainman" style meltdown. We attempted to address this by setting up time limits on the Kindle through their "Freetime" option that allowed us to limit its usage to 30 minutes. After that time, the Kindle would shut down and become unusable. This seemed to work fine on the weekends when we don't give him his medicine. (We have only been administering the meds on school days.) Unfortunately, the same cannot be said for school nights when he has had his medicine.
If school had been experiencing increased focus and decreased impulsivity, we would have figured out a way to make it work. Because they have not, we are again going to remove him from his current medication and consult with his neurological team. Because the other families of medication require our son to be able to swallow pills, we have started trying to teach him the process. Like most physically based activities, it is a process. We are practicing with mini M&Ms. When he can successfully swallow those, we will progress to swallowing regular size M&Ms. I feel like this is their last opportunity to find the right medication for our son. He has lost ten pounds over the last two months. I feel as if we are experimenting with his little body. The process has me very frustrated and heartsick.
After discussing our options, my husband and I just don't know what else to do. His aunt had recently mentioned a special diet that one of her patients utilized successfully with her own children. Do we try something like that? We already closely monitor our children's diet by eliminating as much sugar, caffeine, and red dye as possible. We haven't tried a specific ADD diet though. At this point, it feels like one more dead end we just don't have the energy to go down.
Although we are frustrated with the process, there have been blessings. Through the time that we have been trying to establish a baseline for his medication, his normal winter health issues have not developed. Usually during this time of year, he has developed an asthma flair that requires round the clock breathing treatments; several prednisone boosts; and on going rounds of antibiotics. So far this year, we have been blessed to avoid that. It is a blessing. I'm not sure we could have dealt with his health issues on top of his learning and behavior issues. Sometimes it is the little things that help keep life in perspective. We are grateful for those little things. Some days, it makes all the difference.
The stimulants seem to be doing the opposite of what they should be doing. In a child with Attention Deficit Disorder (ADD), they can have a sedative like effect that helps to slow the brain down to allow for better processing and a reduction in impulsiveness. According to his teachers, they have been experiencing an increase in his chattiness; impulsive desire to be up and moving and out of his seat; and hyper awareness of everything going on around him. Because his current medicine is a 30/70 release dosage, they should see increased focus and decreased impulsiveness as the school day progresses. This medicine releases 30% of its dosage immediately. The remaining 70% of the dosage is released throughout the day. This should translate into decreased impulsiveness and increased focus as the school day progresses. According to the feedback from his teaching team, the opposite is occurring.
In the evenings, we have been experiencing what they refer to as "rebound behaviors". As the evenings progress and the medicine begins to withdraw from his system, he becomes very intense and edgy. His tendency to fixate on conversations or ideas or activities intensifies. We have seen these type of behaviors displayed in many different areas. His fixated behavior has even increased to such a level that we have had to take his Kindle away from him. When we attempt to have him put it away for supper, or homework, or the evening, he has an absolute full blown "Rainman" style meltdown. We attempted to address this by setting up time limits on the Kindle through their "Freetime" option that allowed us to limit its usage to 30 minutes. After that time, the Kindle would shut down and become unusable. This seemed to work fine on the weekends when we don't give him his medicine. (We have only been administering the meds on school days.) Unfortunately, the same cannot be said for school nights when he has had his medicine.
If school had been experiencing increased focus and decreased impulsivity, we would have figured out a way to make it work. Because they have not, we are again going to remove him from his current medication and consult with his neurological team. Because the other families of medication require our son to be able to swallow pills, we have started trying to teach him the process. Like most physically based activities, it is a process. We are practicing with mini M&Ms. When he can successfully swallow those, we will progress to swallowing regular size M&Ms. I feel like this is their last opportunity to find the right medication for our son. He has lost ten pounds over the last two months. I feel as if we are experimenting with his little body. The process has me very frustrated and heartsick.
After discussing our options, my husband and I just don't know what else to do. His aunt had recently mentioned a special diet that one of her patients utilized successfully with her own children. Do we try something like that? We already closely monitor our children's diet by eliminating as much sugar, caffeine, and red dye as possible. We haven't tried a specific ADD diet though. At this point, it feels like one more dead end we just don't have the energy to go down.
Although we are frustrated with the process, there have been blessings. Through the time that we have been trying to establish a baseline for his medication, his normal winter health issues have not developed. Usually during this time of year, he has developed an asthma flair that requires round the clock breathing treatments; several prednisone boosts; and on going rounds of antibiotics. So far this year, we have been blessed to avoid that. It is a blessing. I'm not sure we could have dealt with his health issues on top of his learning and behavior issues. Sometimes it is the little things that help keep life in perspective. We are grateful for those little things. Some days, it makes all the difference.
Friday, December 27, 2013
Boundaries and Social Cues
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.
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.
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.
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