From the very beginning, the purpose of this blog was to communicate and interact with other parents who may have experienced similar journeys with their children and to open a dialogue with those who have not. In order to do this effectively, I have tried to be as brutally honest and open about our life and our experiences as I could be. I've tried to balance our privacy and my child's dignity with the need to help others who are struggling with experiences we have already survived. It has been a cathartic experience to share the joy, fear, frustration, and hurt of this journey. Having a child that is "only mildly special", who tests at the bottom level of average or the top level of below average, always slightly different from those around him, yet normal enough, is a blessing and a curse. We are grateful for his "mildness" but there is also frustration that comes with this "mildness". Fighting for services. Fighting to get people to see how bright and talented he really is. Fighting people to not count him out and sign him off as not quite normal, but close enough. Fighting to make others want to help him meet his true potential. There is also that ever present question. Why? Why him? Why us? WHY?!?!
That question has probably been my greatest personal struggle through our journey. Why does this beautiful, smiling, bubbly kid have to work so hard for EVERYTHING? Why does he have to live trapped in a body that won't let him show everyone who he really is? Why do I have to stand by and watch him be hurt by other kids who don't understand why he is the way he is? They don't understand why he gets food all over himself when he eats; why he falls and hurts himself on the playground all the time; why he stutters and drools and can't get the words out; or why he stands too close and stares? Why does he have to take his anger and frustration out on us when he melts down? Why can't I learn not to take it personally? I know it's not about me. Why do I let it hurt so much?
For a long time, I didn't have the answers. I couldn't begin to understand why God would let this happen to us. Our family was so normal. We were doing everything "the right way". It just seemed so unfair. I was hurt and angry. At God. At my husband. At myself. And as hard as it is to admit, at my son. It's a shameful thing to have to admit that but I promised myself I would always be honest with our experiences and our journey.
Over the years, people would tell me things like "God will never give you more than you can handle." Yeah, right. "If God leads you to it, he'll lead you through it." I wish he would lead me a little faster. "All things will be answered in God's time." or "God has a plan." On an intellectual level, I heard and understood what they were saying. On an emotional level, I just couldn't buy into it. I have believed in God my whole life. My faith is a solid part of who I am. I'm not a Christian because my parents raised me in the church, although that probably didn't hurt. I'm a Christian because my faith in God has gotten me through some extremely challenging times in my life. Some of my earliest memories involve me praying and asking God to help me, to protect me, to see me through. He always has. Always. This was the first time in my life that I couldn't see Him clearly. One challenge has seemed to lead to another, to another, and to another. There have been definite blessings along the way. I have no doubt of that. I just couldn't wrap my head around the "WHY?" of it all.
Recently, God has started to open my eyes. He has started to answer some of the "whys". I teach court committed female juvenile offenders. I've been doing this job since 1998. They have always been "my girls". I truly love them all (even when I want to kick them in the pants). Last year, I was almost at my breaking point. It was the closest I have ever been to throwing in the towel and saying "It's too much. I can't do this anymore." Our population was probably the most aggressive I have ever worked with at this level of corrections. They were angry and irrational and physically aggressive to an extreme level. I felt as if I were babysitting instead of teaching. I questioned if anyone was learning anything at all. Unknown to me, God was laying a foundation. He was putting a plan in place. Relationships were being built. I was being prepared.
When we started this new school year and they reviewed the roster with us, I wanted to walk out the door and not turn back. Our usual population is typically made up of girls who are significantly behind in their credits; tremendously behind in their math and reading levels; and carrying a boat load of personal issues mostly due to abuse and neglect. This year, we were also going to have a girl with mental retardation and a seizure disorder (who was not a native English language learner). In addition, we were going to have two autistic girls, one of which we had had previously and was known to be aggressive. There was also a large number of older girls and girls with psychiatric issues. Besides teaching, as the lead teacher, it is my responsibility to track their credits; contact their home guidance counselors; and convince everyone that they could/should earn a high school diploma. The larger our population of older girls, the more my workload increases. All I could think was how am I going to manage this and my son. I was feeling very overwhelmed.
God has a way of providing the answers even when we think they aren't there to be found. What I didn't know is that my girl with mental retardation would be the sweetest little miss on the planet. I get to start every work day with a hug. I get to end every workday with a hug and an "I love you Miss." She has the EXACT same stuttering/disfluency pattern as my son. Without my son and his stuttering and speech therapy sessions, I wouldn't have known what to do and what NOT to do to help her work through those challenging blocks. What I didn't know is that my big angry autistic girl flies into rages because she is overwhelmed and frustrated and doesn't know how to get it out. If I hadn't had my son, I wouldn't know to watch for the signs that she is getting overstimulated or that her frustration level is building. I wouldn't know the tricks to help her calm herself down before she reaches an explosion. What I didn't know is that my other autistic girl wants relationships but is socially inept and doesn't know how to make those connections. She doesn't know how to read other people's body language. She doesn't understand that her behavior is having a negative effect on someone else. Without my son in my life, I wouldn't recognize her struggles or know what to say and do to help coach her through those times.
What I didn't know, is that God was going to prepare me to be a better teacher by forcing me to be a better mom. Because of my son, it is in the back of my head, every single day, that that is someone's child. This was a child that someone gave birth to, had hopes for, had dreams for. Somewhere in their journey, something went wrong. But by their journey taking a wrong turn, God brought them to me. What I didn't know is that He has been preparing me. In the times when I have felt alone and scared, he was preparing me. When I thought I couldn't take another day, he was preparing me. I'm not alone. He's preparing me still.
If I'm honest, I wouldn't have chosen this path. I wanted a boring life. A stable uncomplicated life. I wanted to teach elementary school, get married, and have two kids. God had a different plan in mind. Instead, I fell in love with teaching juvenile offenders. I got married and had those two children but it hasn't been boring. Or uncomplicated. That's okay. I'm starting to see that there's a plan, even if I don't necessarily like the plan. I need to have faith and trust that He will bring me through it. I still hate the clichés but I'm beginning to see that they are true. (I hate it when that happens.)
Friday, November 7, 2014
Friday, August 1, 2014
Multiple Step Processes and a Developmentally Delayed Child
Have you ever stopped to think about how many little steps make up your simple everyday activities? Back in middle school, I was given a writing activity asking me to describe the steps involved in tying my shoes. It's amazing, when you break it down, how many processes are involved in that one ordinary task. For kids like our youngest son, simple daily tasks take focus, attention to detail, and effort that you and I take for granted.
How often have you hollered to your children "Go upstairs. Get your teeth brushed and change into your pajamas."? It seems like a very simple command. You interpret it as "go get ready for bed". I would give my oldest son directions like this on a daily basis. It never occurred to me that something so simple could be so, well, not simple. If you gave that same request to my youngest son, he would probably make it upstairs. If you are lucky, he may even start the process of brushing his teeth. Somewhere along the way, a "squirrel moment" is likely to occur. On a nightly basis, it is more normal than not to find him playing with something in the bathroom, or cleaning the sink, or naked in the hallway reading a book (he may or may not have gotten to the teeth). When you ask "what are you supposed to be doing?", his response is generally "What?" He is genuinely baffled. I lost him after "go upstairs".
Multiple step commands are definitely a challenge, especially if they involve an activity that is not routine oriented. We have learned to make requests (commands do NOT work with children with oppositional tendencies). Keep them simple. Keep them specific. Requests need to be related to the activity at hand. Visual prompts are often helpful but can also be distracting. For example, our son's team recommended keeping a checklist or a visual reminder of the steps needed to get ready for bed. Unfortunately, when your child also has obsessive tendencies, such "tricks" or "gimmicks" tend to become a source of distraction and frustration. Our son becomes fixated on the list. He needs to edit the list. Add new items to the list. Update the list. Give a verbal dissertation on why the list is not the best way to complete the activity. It ends up taking longer than simply offering step by step reminders of what he is supposed to be doing. It often becomes the fuel for an argument with a tired child and a worn out parent.
Activities such as tying shoes, getting dressed, riding a bike, getting a bath, picking up after yourself, and having a conversation can be overwhelming and often a serious challenge for children like my son. Pick one of these activities and break down the steps in your head. Now consciously complete them one step at a time. That's what it's like for a person with expressive issues. Stroke patients, children with Attention Deficit Disorder, children with developmental delays all have to take normal daily activities one step at a time with attention to each detail. Those of you that have had a loved one experience a stroke and watched them try to relearn simple life processes can probably relate to what life is like with a child like ours. They are frustrated with themselves for their lack of progress. They are frustrated with you for trying to help them when they don't want to be helped. It is exhausting for everyone involved.
Those of you who have been following our journey for awhile now, know that I have talked about my son's attempts to negotiate different challenges. I've discussed his developmental pattern of burst of development and new skills, followed by lags in ability in which he seems to regress for a time both developmentally and behaviorally. These lags often coincide with a physical growth spurt. It's as if his body can't grow and develop neurologically at the same time. This cyclical pattern of development seems to go in short bursts of just a few months. I have joked and said that just when I'm about to throw in the towel and give up, the good Lord rewards me with one of his developmental bursts and we get to experience a couple months of "the good times". Unfortunately, our son entered one of his lag stages soon after the New Year and is still enmeshed in that stage. His disfluency is the most pronounced I have ever heard it. The drooling that often accompanies the disfluency is in full evidence. His distractability and impulsiveness is controlled by medicine but quite evident when it wears off. Our son's tendency to fixate on phrases, activities, or ideas has been quite pronounced. His obsessiveness and desire to control his environment has been stronger than usual as well. It has been seven or eight months in this lag stage. That is the longest lag we have ever experienced with him.
At our latest neurological appointment, his team recommended having him seen by a neurological speech expert. They wanted to have her evaluate him and see if she could offer any recommendations. We have been through lots of "specialists" and heard lots of "recommendations" so we didn't get too excited by this latest idea but kept an open mind. The appointment went well. We didn't learn anything new or too surprising but we did get some interesting insight and some affirmation that our efforts are not in vane. She concluded that his communication skills are on the lowest end of average to slightly below average. That is how our son has tested from the very beginning. His disfluency is in the severe category at this time. As a result, she recommends immediate and concentrated intervention be given to this issue. His drooling is something that we need to raise his awareness of without embarrassing him or making him uncomfortable. There is no proven method for improving this problem. It is a result of hypotonia (low muscle tone), which is an issue for his fine motor and gross motor skills as well. Her report will list recommendations for his current speech therapist to better focus on the stuttering. She also recommends that we resume private speech therapy sessions from an outside entity. (Yeah!)
Two things came out of her assessment that helped me as a mother. The first was her reassurance that his speech issues/disfluency was a neurological issue. There is nothing we did or didn't do to cause this lag that we are experiencing. The second balm was her commentary on our son. She stated that many children his age with speech issues like his start to develop an aversion to talking to others and communicating with others. Our efforts to make him feel comfortable with himself and his ability to communicate must be paying off because he is more than happy talking to others and sharing his thoughts. He is able to identify how his stuttering makes him feel frustrated but he doesn't seem to have any other negative issues related to how he feels about himself as a person. It's such a relief to hear that from someone else, especially someone who evaluates lots of children with similar and even more severe issues.
As time goes on, we are learning to trust our instincts with our son. The decisions we have made have led us down some dead ends and wrong turns. When we knew better, we did better. Through every step, through every new specialist, through every new diagnosis, evaluation, and recommendation, we talked. We discussed our options. We talked about how it may impact us as individuals and as a family. Most importantly, we tried to keep an open dialogue of how we all feel. I often worry that by writing this blog, I'm putting too much out there about my son. As he grows older, I will probably still write them but not publish them. Being a kid and a teenager is hard enough without Mom broadcasting all your issues. What has kept me writing (and publishing) for now is the knowledge that when we started through this process, I felt terribly alone. No one else I knew had kids going through anything similar. My hope is that others out there experiencing a similar journey have gained insight, learned to be an advocate for their child's needs, or just felt a little less alone. I also hope that others out there who haven't experienced this journey gained a little more empathy for those that are and learned to judge less and love more. God willing, we will all make it through okay. It's a journey. I'm going to love it while I'm living it.
How often have you hollered to your children "Go upstairs. Get your teeth brushed and change into your pajamas."? It seems like a very simple command. You interpret it as "go get ready for bed". I would give my oldest son directions like this on a daily basis. It never occurred to me that something so simple could be so, well, not simple. If you gave that same request to my youngest son, he would probably make it upstairs. If you are lucky, he may even start the process of brushing his teeth. Somewhere along the way, a "squirrel moment" is likely to occur. On a nightly basis, it is more normal than not to find him playing with something in the bathroom, or cleaning the sink, or naked in the hallway reading a book (he may or may not have gotten to the teeth). When you ask "what are you supposed to be doing?", his response is generally "What?" He is genuinely baffled. I lost him after "go upstairs".
Multiple step commands are definitely a challenge, especially if they involve an activity that is not routine oriented. We have learned to make requests (commands do NOT work with children with oppositional tendencies). Keep them simple. Keep them specific. Requests need to be related to the activity at hand. Visual prompts are often helpful but can also be distracting. For example, our son's team recommended keeping a checklist or a visual reminder of the steps needed to get ready for bed. Unfortunately, when your child also has obsessive tendencies, such "tricks" or "gimmicks" tend to become a source of distraction and frustration. Our son becomes fixated on the list. He needs to edit the list. Add new items to the list. Update the list. Give a verbal dissertation on why the list is not the best way to complete the activity. It ends up taking longer than simply offering step by step reminders of what he is supposed to be doing. It often becomes the fuel for an argument with a tired child and a worn out parent.
Activities such as tying shoes, getting dressed, riding a bike, getting a bath, picking up after yourself, and having a conversation can be overwhelming and often a serious challenge for children like my son. Pick one of these activities and break down the steps in your head. Now consciously complete them one step at a time. That's what it's like for a person with expressive issues. Stroke patients, children with Attention Deficit Disorder, children with developmental delays all have to take normal daily activities one step at a time with attention to each detail. Those of you that have had a loved one experience a stroke and watched them try to relearn simple life processes can probably relate to what life is like with a child like ours. They are frustrated with themselves for their lack of progress. They are frustrated with you for trying to help them when they don't want to be helped. It is exhausting for everyone involved.
Those of you who have been following our journey for awhile now, know that I have talked about my son's attempts to negotiate different challenges. I've discussed his developmental pattern of burst of development and new skills, followed by lags in ability in which he seems to regress for a time both developmentally and behaviorally. These lags often coincide with a physical growth spurt. It's as if his body can't grow and develop neurologically at the same time. This cyclical pattern of development seems to go in short bursts of just a few months. I have joked and said that just when I'm about to throw in the towel and give up, the good Lord rewards me with one of his developmental bursts and we get to experience a couple months of "the good times". Unfortunately, our son entered one of his lag stages soon after the New Year and is still enmeshed in that stage. His disfluency is the most pronounced I have ever heard it. The drooling that often accompanies the disfluency is in full evidence. His distractability and impulsiveness is controlled by medicine but quite evident when it wears off. Our son's tendency to fixate on phrases, activities, or ideas has been quite pronounced. His obsessiveness and desire to control his environment has been stronger than usual as well. It has been seven or eight months in this lag stage. That is the longest lag we have ever experienced with him.
At our latest neurological appointment, his team recommended having him seen by a neurological speech expert. They wanted to have her evaluate him and see if she could offer any recommendations. We have been through lots of "specialists" and heard lots of "recommendations" so we didn't get too excited by this latest idea but kept an open mind. The appointment went well. We didn't learn anything new or too surprising but we did get some interesting insight and some affirmation that our efforts are not in vane. She concluded that his communication skills are on the lowest end of average to slightly below average. That is how our son has tested from the very beginning. His disfluency is in the severe category at this time. As a result, she recommends immediate and concentrated intervention be given to this issue. His drooling is something that we need to raise his awareness of without embarrassing him or making him uncomfortable. There is no proven method for improving this problem. It is a result of hypotonia (low muscle tone), which is an issue for his fine motor and gross motor skills as well. Her report will list recommendations for his current speech therapist to better focus on the stuttering. She also recommends that we resume private speech therapy sessions from an outside entity. (Yeah!)
Two things came out of her assessment that helped me as a mother. The first was her reassurance that his speech issues/disfluency was a neurological issue. There is nothing we did or didn't do to cause this lag that we are experiencing. The second balm was her commentary on our son. She stated that many children his age with speech issues like his start to develop an aversion to talking to others and communicating with others. Our efforts to make him feel comfortable with himself and his ability to communicate must be paying off because he is more than happy talking to others and sharing his thoughts. He is able to identify how his stuttering makes him feel frustrated but he doesn't seem to have any other negative issues related to how he feels about himself as a person. It's such a relief to hear that from someone else, especially someone who evaluates lots of children with similar and even more severe issues.
As time goes on, we are learning to trust our instincts with our son. The decisions we have made have led us down some dead ends and wrong turns. When we knew better, we did better. Through every step, through every new specialist, through every new diagnosis, evaluation, and recommendation, we talked. We discussed our options. We talked about how it may impact us as individuals and as a family. Most importantly, we tried to keep an open dialogue of how we all feel. I often worry that by writing this blog, I'm putting too much out there about my son. As he grows older, I will probably still write them but not publish them. Being a kid and a teenager is hard enough without Mom broadcasting all your issues. What has kept me writing (and publishing) for now is the knowledge that when we started through this process, I felt terribly alone. No one else I knew had kids going through anything similar. My hope is that others out there experiencing a similar journey have gained insight, learned to be an advocate for their child's needs, or just felt a little less alone. I also hope that others out there who haven't experienced this journey gained a little more empathy for those that are and learned to judge less and love more. God willing, we will all make it through okay. It's a journey. I'm going to love it while I'm living it.
Monday, June 23, 2014
Those Dreaded Rainman Days
I'm going to start this entry with a short disclaimer: I fully recognize that the challenges we face with our son are on the mild end of the spectrum. On a daily basis, I give thanks that we were dealt the problems that we were and not something more serious like cancer, or Downs Syndrome, or cerebral palsy. In comparison, our challenges are minor. I purposely follow "Hope for Harper" and "Prayers for LEAH" to remind me that we are indeed blessed. On the bad days though, it doesn't matter how mild the disorder, on those days the not knowing, and the not knowing how to help, are completely exhausting and emotionally draining.
I have alluded to our son's "Rainman" episodes on more than one occasion. It is my sick sense of humor trying to cope with something that is completely beyond reason. He fixates on an issue or phrase or situation and can't let go. In those moments, he is unreasonable. Logic does not prevail. It doesn't even come into play. His eyes get this glazed over appearance. Over and over and over, he states repetitively the same statements or phrases. Attempts to distract or move him in a different direction are useless. All the tricks and skills and even gimmicks that we have learned over the years to help him focus or move forward with his day, do not work in these moments, on these days.
Last night, he was tired. Really tired. We were sitting around the campfire in our backyard. He had asked to go in to bed to read the latest "Junie B. Jones" story that we were reading at bedtime. As I read the story to him, cuddled in bed, he was starting to doze. He was tired. When the chapter was over and we finished our prayers, it occurred to him that his brother was still outside at the campfire. His thirteen year old brother usually "goes to bed" when he does. During the school year, it is our policy that the boys need to be on the second floor doing something quiet by 8 pm. Although our oldest is quickly approaching fourteen years old, he never complains about this rule because he knows it makes our lives easier. Tonight, I told our youngest that his brother would be in to bed in a little bit. He was old enough that he could stay up for a little bit yet. I also told him that his brother would be sure to come in and give him and kiss and hug before he went to bed. This was the final straw in a day that had been leading to this moment.
Our son had been having one of those days. It was one of those days in which he was prone to repetitive phrases, repeated behaviors, or failing to let go of a topic or an idea. He has also been stuttering and blocking quite significantly lately. It's probably the worst I've seen it for a very long time. The result has been a child prone to frustration. In spite of that, he's been maintaining pretty well. We've tried to keep him in a routine because that helps but it's also summer. We all need to relax and unwind a little. Today was the perfect storm of scenarios. He was tired. We changed our routine from what was expected and "normal". He was in a fixated, repetitive frame of mind. The combination resulted in a full blown "Rainman meltdown".
I've experienced these for years with him. They aren't anything new or unusual in our world. They don't happen frequently but when they do they are significant and they are exhausting. What struck me so hard this time was my complete failure to see it coming. I was taking a stand for our oldest son who gives so much of himself to help make our life with our youngest son successful. He rarely complains and usually helps and cooperates without a bat of an eye. It was the start of summer and darn it all, the poor kid is almost in high school. He deserves to stay up a little later. Our youngest just needs to adjust. That's what was going through my head at the time. Unfortunately, our youngest can't just adjust. Adjusting is very difficult. Change is difficult, especially when he is already struggling to talk and express himself. Especially when he is already frustrated with himself and his mother who continues to try to control the environment to help him be successful. Especially when he doesn't want things to change because it's one more thing he has no control over.
I tried all the tricks to help him cope. I tried all the gimmicks, logic, and conversations. Nothing. I finally walked away. I gave him a clear expectation and a clear consequence. Guess how that worked. Yeah. That well. His father attempted to intervene. After twenty minutes with no progress and continued crying and venting of frustration, I tagged him back out. After an additional twenty minutes, I stated the clear consequences for his behavior/tantrum and called our oldest to bed. An hour had passed and he was tired and needed to be in bed anyway.
I'd love to say that there was a happy ending. There wasn't. I don't know how to deal with these episodes. I don't know how to break him out of his fixated state. I don't know what to do. Neither does he. That's just it. He doesn't know what to do with himself during those moments either. He is frustrated and angry and sad and doesn't know how to express it or what to say. He feels locked inside of himself and feels like no one can hear him. We don't know how to cope in those moments.
So today, we had an electronics free day. No Kindles, or computers, or TV. He did pretty well. He never asked for any of those things. At the end of the day, he asked if he could have them back tomorrow. I explained that he could if he went to bed when expected without any tantrums. Even though he was verbally manic all day, even though he bounced from activity to activity without purpose or reason, and even though he displayed repetitive behaviors and phrasing, we didn't have any "Rainman" episodes. Why? Why do they happen some days but not others? Why can I prevent them some days but not others? I don't know. I have to remind myself that he doesn't either.
I coped by having a good long hard cry out by the campfire when he was finally settled into bed for the night. My husband and I discussed how we handled it and what to do now and in the future. A friend listened when I just needed someone to talk to and to be silly with. All we can do for now is take it one day at a time and give it to the Lord. I pray He has a plan. I pray He helps me to continue to have patience and fortitude and strength to make it through another day. I pray that I can be the mom he needs me to be even when he doesn't think I am.
I have alluded to our son's "Rainman" episodes on more than one occasion. It is my sick sense of humor trying to cope with something that is completely beyond reason. He fixates on an issue or phrase or situation and can't let go. In those moments, he is unreasonable. Logic does not prevail. It doesn't even come into play. His eyes get this glazed over appearance. Over and over and over, he states repetitively the same statements or phrases. Attempts to distract or move him in a different direction are useless. All the tricks and skills and even gimmicks that we have learned over the years to help him focus or move forward with his day, do not work in these moments, on these days.
Last night, he was tired. Really tired. We were sitting around the campfire in our backyard. He had asked to go in to bed to read the latest "Junie B. Jones" story that we were reading at bedtime. As I read the story to him, cuddled in bed, he was starting to doze. He was tired. When the chapter was over and we finished our prayers, it occurred to him that his brother was still outside at the campfire. His thirteen year old brother usually "goes to bed" when he does. During the school year, it is our policy that the boys need to be on the second floor doing something quiet by 8 pm. Although our oldest is quickly approaching fourteen years old, he never complains about this rule because he knows it makes our lives easier. Tonight, I told our youngest that his brother would be in to bed in a little bit. He was old enough that he could stay up for a little bit yet. I also told him that his brother would be sure to come in and give him and kiss and hug before he went to bed. This was the final straw in a day that had been leading to this moment.
Our son had been having one of those days. It was one of those days in which he was prone to repetitive phrases, repeated behaviors, or failing to let go of a topic or an idea. He has also been stuttering and blocking quite significantly lately. It's probably the worst I've seen it for a very long time. The result has been a child prone to frustration. In spite of that, he's been maintaining pretty well. We've tried to keep him in a routine because that helps but it's also summer. We all need to relax and unwind a little. Today was the perfect storm of scenarios. He was tired. We changed our routine from what was expected and "normal". He was in a fixated, repetitive frame of mind. The combination resulted in a full blown "Rainman meltdown".
I've experienced these for years with him. They aren't anything new or unusual in our world. They don't happen frequently but when they do they are significant and they are exhausting. What struck me so hard this time was my complete failure to see it coming. I was taking a stand for our oldest son who gives so much of himself to help make our life with our youngest son successful. He rarely complains and usually helps and cooperates without a bat of an eye. It was the start of summer and darn it all, the poor kid is almost in high school. He deserves to stay up a little later. Our youngest just needs to adjust. That's what was going through my head at the time. Unfortunately, our youngest can't just adjust. Adjusting is very difficult. Change is difficult, especially when he is already struggling to talk and express himself. Especially when he is already frustrated with himself and his mother who continues to try to control the environment to help him be successful. Especially when he doesn't want things to change because it's one more thing he has no control over.
I tried all the tricks to help him cope. I tried all the gimmicks, logic, and conversations. Nothing. I finally walked away. I gave him a clear expectation and a clear consequence. Guess how that worked. Yeah. That well. His father attempted to intervene. After twenty minutes with no progress and continued crying and venting of frustration, I tagged him back out. After an additional twenty minutes, I stated the clear consequences for his behavior/tantrum and called our oldest to bed. An hour had passed and he was tired and needed to be in bed anyway.
I'd love to say that there was a happy ending. There wasn't. I don't know how to deal with these episodes. I don't know how to break him out of his fixated state. I don't know what to do. Neither does he. That's just it. He doesn't know what to do with himself during those moments either. He is frustrated and angry and sad and doesn't know how to express it or what to say. He feels locked inside of himself and feels like no one can hear him. We don't know how to cope in those moments.
So today, we had an electronics free day. No Kindles, or computers, or TV. He did pretty well. He never asked for any of those things. At the end of the day, he asked if he could have them back tomorrow. I explained that he could if he went to bed when expected without any tantrums. Even though he was verbally manic all day, even though he bounced from activity to activity without purpose or reason, and even though he displayed repetitive behaviors and phrasing, we didn't have any "Rainman" episodes. Why? Why do they happen some days but not others? Why can I prevent them some days but not others? I don't know. I have to remind myself that he doesn't either.
I coped by having a good long hard cry out by the campfire when he was finally settled into bed for the night. My husband and I discussed how we handled it and what to do now and in the future. A friend listened when I just needed someone to talk to and to be silly with. All we can do for now is take it one day at a time and give it to the Lord. I pray He has a plan. I pray He helps me to continue to have patience and fortitude and strength to make it through another day. I pray that I can be the mom he needs me to be even when he doesn't think I am.
Friday, May 23, 2014
What Is Your Definition of Success?
What is your definition of success? That question has been gnawing at me lately. In the past, my definition of success would have been straight A's, a college degree, a successful career, and a family to be proud of. I've earned those things and I am proud of that. I want those same things for my children. But is that success? These days, I would measure success more in terms of degrees and circumstances than in terms of accomplishments or recognition.
My life hasn't always been easy. Those that know me well know that I've faced some personal challenges. In spite of all that, I can say that life has come very easily for me. I'm a Type A, over achiever who isn't afraid to work hard or go after a goal. School came quite easily to me, probably too easy. I don't know if I actually ever studied for a test. As an undergraduate in college, I made note cards and pretended to study because I saw everyone else doing it, but if I'm honest, I never studied for a single final exam and still graduated Cum Laud. When I went for my masters degree, it was pretty much the same story and I graduated with a 4.0. Please don't interpret this as boastful or prideful because my feelings on the matter are quite the opposite. I'm ashamed that I never had to work to earn what I received, especially as I attempt to help my youngest son negotiate the challenges in life that he faces.
Our oldest son has followed very closely in my footsteps. I rarely, if ever, help him with homework. I don't have to. He starts and finishes it on his own. He's self motivated and self directed. Last marking period for the first time ever his grades in one class dropped to a B. I talked to him and simply said "If it's your best, I'm okay with it. If it's not, you need to fix it. You know for yourself what effort you've been putting into it." With the school year quickly coming to a close, his grade in that class this quarter is a 100%. Has he spent hours studying or doing homework? No. He just actually put more effort into his assignments and paid closer attention. Like myself, it comes too easy to him. When life throws challenges at him, it throws him off. It leaves him at a loss. He's not used to life being hard, a challenge, an effort. But the reality of life is that it is hard. It is a challenge. It is an effort. I sometimes worry that he will be unprepared for what life is going to throw at him. His life has been too easy and he hasn't learned that it can be cruel and unfair. I pray that he will rise to the occasion when challenged.
Life has NOT been easy for our youngest son. It has been a challenge from the very beginning. He has struggled to breathe, to roll over, to sit up, to crawl, to walk, to talk, to feed himself, to dress himself, to do anything that most kids and their parents take for granted. If there is a learning curve, he is consistently on the bottom end of that curve. In spite of that, maybe because of that, he always finds a way to improvise, to overcome... to succeed. When he started blocking with his speech, he's the one that discovered if he sang his bedtime prayer, he could get through it without blocking. When he started stuttering, he's the one that discovered that if he drew out his words, he wouldn't stutter and he could get the words out. Time and again, it was him that came up with a way to overcome his obstacles.
He works harder than anyone I've ever met and only gets average or acceptable results. We sit with him and work on homework for hours every night. When it is through, we are all tired and frustrated but we get it done. The school has asked us on more than one occasion if we wanted to reduce the amount of homework that he's required to complete. After a lot of thought, we told them no. It's not realistic for our son's life and his circumstances. Our son is going to have to work harder than others to accomplish the same goals. Telling him he doesn't have to do the same work isn't preparing him for the reality of his life. We monitor the situation closely. If it appears like he is giving all he can and it's not enough, then we change what we are doing and expecting. But he's not failing. He's succeeding. His version of success. He's stuck in a body that won't let him show the world just how clever and spectacular that he really is yet he's never down. He's never depressed. He BOUNDS through life with a smile and a "here I am!" attitude.
This year has been a year of transition in our lives. It took the whole year to find the appropriate medications to help him focus and succeed in the classroom but we finally seem to be getting him stabilized. Homework is taking less and less time. There are even days that he can start an assignment without us, while we throw supper in the oven, and then join him to help him move on or complete the activity. This was unheard of in the past. Success? You bet! He is starting to be able to follow more than one step directions at a time. It's still inconsistent but is it improving? You bet! He is even starting to verbalize how he feels about situations that are occurring without having a meltdown. It's not all the time but it's a start. Is that success? Definitely!
I don't know what life holds for our youngest child. His reality is very different than anything I have ever known or experienced. It's hard for me to relate at times but I'm trying. He's taught me more about life and God and love in his eight short years than I had learned in my whole life before he came into it. What is my definition of success these days? I don't know. He hasn't shown me yet but it's sure to be spectacular.
My life hasn't always been easy. Those that know me well know that I've faced some personal challenges. In spite of all that, I can say that life has come very easily for me. I'm a Type A, over achiever who isn't afraid to work hard or go after a goal. School came quite easily to me, probably too easy. I don't know if I actually ever studied for a test. As an undergraduate in college, I made note cards and pretended to study because I saw everyone else doing it, but if I'm honest, I never studied for a single final exam and still graduated Cum Laud. When I went for my masters degree, it was pretty much the same story and I graduated with a 4.0. Please don't interpret this as boastful or prideful because my feelings on the matter are quite the opposite. I'm ashamed that I never had to work to earn what I received, especially as I attempt to help my youngest son negotiate the challenges in life that he faces.
Our oldest son has followed very closely in my footsteps. I rarely, if ever, help him with homework. I don't have to. He starts and finishes it on his own. He's self motivated and self directed. Last marking period for the first time ever his grades in one class dropped to a B. I talked to him and simply said "If it's your best, I'm okay with it. If it's not, you need to fix it. You know for yourself what effort you've been putting into it." With the school year quickly coming to a close, his grade in that class this quarter is a 100%. Has he spent hours studying or doing homework? No. He just actually put more effort into his assignments and paid closer attention. Like myself, it comes too easy to him. When life throws challenges at him, it throws him off. It leaves him at a loss. He's not used to life being hard, a challenge, an effort. But the reality of life is that it is hard. It is a challenge. It is an effort. I sometimes worry that he will be unprepared for what life is going to throw at him. His life has been too easy and he hasn't learned that it can be cruel and unfair. I pray that he will rise to the occasion when challenged.
Life has NOT been easy for our youngest son. It has been a challenge from the very beginning. He has struggled to breathe, to roll over, to sit up, to crawl, to walk, to talk, to feed himself, to dress himself, to do anything that most kids and their parents take for granted. If there is a learning curve, he is consistently on the bottom end of that curve. In spite of that, maybe because of that, he always finds a way to improvise, to overcome... to succeed. When he started blocking with his speech, he's the one that discovered if he sang his bedtime prayer, he could get through it without blocking. When he started stuttering, he's the one that discovered that if he drew out his words, he wouldn't stutter and he could get the words out. Time and again, it was him that came up with a way to overcome his obstacles.
He works harder than anyone I've ever met and only gets average or acceptable results. We sit with him and work on homework for hours every night. When it is through, we are all tired and frustrated but we get it done. The school has asked us on more than one occasion if we wanted to reduce the amount of homework that he's required to complete. After a lot of thought, we told them no. It's not realistic for our son's life and his circumstances. Our son is going to have to work harder than others to accomplish the same goals. Telling him he doesn't have to do the same work isn't preparing him for the reality of his life. We monitor the situation closely. If it appears like he is giving all he can and it's not enough, then we change what we are doing and expecting. But he's not failing. He's succeeding. His version of success. He's stuck in a body that won't let him show the world just how clever and spectacular that he really is yet he's never down. He's never depressed. He BOUNDS through life with a smile and a "here I am!" attitude.
This year has been a year of transition in our lives. It took the whole year to find the appropriate medications to help him focus and succeed in the classroom but we finally seem to be getting him stabilized. Homework is taking less and less time. There are even days that he can start an assignment without us, while we throw supper in the oven, and then join him to help him move on or complete the activity. This was unheard of in the past. Success? You bet! He is starting to be able to follow more than one step directions at a time. It's still inconsistent but is it improving? You bet! He is even starting to verbalize how he feels about situations that are occurring without having a meltdown. It's not all the time but it's a start. Is that success? Definitely!
I don't know what life holds for our youngest child. His reality is very different than anything I have ever known or experienced. It's hard for me to relate at times but I'm trying. He's taught me more about life and God and love in his eight short years than I had learned in my whole life before he came into it. What is my definition of success these days? I don't know. He hasn't shown me yet but it's sure to be spectacular.
Thursday, March 27, 2014
My Bad Day
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.
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.
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.
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